I sort of had a 3 part Christmas miracle. The first part happened on Christmas Eve. I called my mother to check in and see if she still needed me to run an errand for her. She proceeded to snap at me for not already having completed the errand. I told her not to yell at me, and she promptly hung up the phone. "Christmas just wouldn't be Christmas without Rosalie snapping at someone " I remarked to Steve. And then it happened, she called me back a few minutes later and apologized. I think that is the first time in my entire life that she did that. I was shocked. No tears. Just amazement.
Christmas Eve was spent with friends first, and then family. We celebrate a sort of Polish style Christmas Eve (Wagilia). We don't do all the customs, but we don't eat meat, we do eat cardboard, I mean oplatek, which is a piece of bread pressed with a holy picture on the surface and 11 other vegetarian dishes (apple rice, potato puff, potatoe pierogi, sauerkraut pierogi, babka, fried fish, shrimp cocktail, salmon croquettes, carrot souffle, spinach balls, cole slaw); a dish for each apostle. The oplatek is broken amongst all the guests and we say something in Polish when doing so that I can neither pronounce, spell, or remember at this time. We eat, exchange gifts, and sing happy birthday to the hostess. Yeah - you got it, for my sister's birthday, we allow her to host our semi-formal dinner for around 25 of us. We're such considerate folk. It was a pleasant evening, and Sophia and Zach enjoyed receiving their presents from their cousins.
Christmas day we went to Church for the first time in a long time as a family, and it was a beautiful. The priest who did our prayer service made a b-line for us, I think he was surprised to see us. I have been having a hard time feeling motivated to go, since Steve doesn't go. But he went yesterday, and it was such a wonderful gift to give me, and thus my Christmas miracle #2.
The service was nice. The service was fairly crowded, as most holy day services are at any church, and the homily was about belief. Sophia initially tried to have a conversation with me, I told her to hush, and she asked me why we cannot talk in Church. I told her we were supposed to listen to the priest. She went on to quietly play with her Molly American Girl doll (fresh from Santa's stash of goodies left at the house.) The priest referred to Virginia O'Hanlon's letter to the New York Sun back in 1897. When the priest quoted this famous quote: "Is there a Santa Claus?", Sophia showed me that she certainly did as I told her. The question, asked rhetorically, was responded to by my little blue eyed girl petting her Molly doll, with a clear as a bell, and audible to all "YES!!!!". The congregation all looked around, found the originator, and went on to applaud her. I laughed at the fact that she did what I told her. Perhaps this is a miracle too? Father Greg's momentum was sort of ruined. But it was the best service I had ever been to, for personal reasons of course.
The kids were extremely well behaved throughout the rest of the service. Zach looked over at me during one part of the Mass and requested "milk" spontaneously. I was so excited that he requested an item he wanted when it wasn't in sight. A HUGE deal - and reportable to the psychologist at his school for sure. Unfortunately it was not in sight, nor was it in church at all - I had braved the Christian service world by not bringing any snacks to Church - including drinks. Alas, he was OK with that. Amen.
It was a terrific Christmas. Hope yours was too.
Sunday, December 27, 2009
Tuesday, December 22, 2009
Christmas at our house- Part III: Cookies and Syringes
The making of the Christmas cookies has always been a forte of Steven's. One year, he made almost 500 cookies! The gluten free casein free diet Zach is on, would have made me think prior to all this diet nonsense, that cookies would be off limits - but indeed they aren't!
We have a decent flour substitute, and there is GFCF margarine and chocolate - so we are off. Buckeyes, Gingerbread, Sugar Cookies, Russian Tea Cakes, Fruit Drops - he did good! We scaled back this year since we won't be having the company we usually have.
The irony of this is that Zach, was throwing up about a week ago, while eating these cookies. The association of the puke and the cookies has made them not desirable to him whatsoever - so here are the rest of us eating them up! We went on to realize the nausea was from Zach's really severe ear infection. *sigh*
We have managed to get several doses of medication into him - using ABAish type stuff (start playing a computer game, and turn off the monitor mid game with the syringe filled with pink gooey stuff at hand) , and then fading back until he just accepts it. The first dose took approximately an hour and a half to get into him, the second dose, about 20 minutes, and it has gradually become easier. A relief for sure! But a commitment - an hour and a half of trying to get Zach to take medicine was a bit stifling mentally. This is one item for those of you with typical kids to take note, a lot of things that are commonplace are not with our ASD kids. Things that should take 10 minutes, take hours sometimes. A parent to a kid with an ASD lives on patience and persistence. I think of all the things I should be anticipating in the future to help prepare him. I want Zach exposed to as much of the world as possible. I do not want him set into some firm, schedule that will result in a meltdown if broken. What things will be expected of him in the future that I should expose him to now? School - I think I have that one down. I am now considering giving him fish oil twice daily using the syringe in order of keeping him in the habit of taking things this way so that future medications will not require as much commitment. I am also thinking I should get those pullups on him soon. Potty training exhausts me just thinking about it. Doctor says he is still young - I know that if I don't have some expectations of him, and exposure to him now, I could hurt my chances in the future.
Anyhow - we sure have a lot of GFCF cookies in the house.
Christmas at our house- Part II : The Story of the Toilet Brush
Our terrific lighting scheme (albeit far from the evenly spaced lumens I had hoped for) was no match for the next event: putting up the tree. Yes, we have a fake tree in our house, and I like it. So backoff. Now, for years, we were unable to have a real tree in the house due to our precious dog Buddy's allergies. Yes, only we would own a dog who was allergic to just about every species of tree native to North America. So, the fake tree would have to do.
I have yet to have this discussion, but I am one to try and reclaim a nickel if I can. When Mom upgraded her fake tree to a pre-lit variety, I gladly grabbed her old tree. Much like others out there, I hated stringing the lights on the stinking tree- so one year, I just left them on, and stuffed the thing up into our attic, lights still on, and voila- made myself a pre-lit tree. Steve was not in love with this tree nor the storage method. He affectionately nicknamed this little tree of my parents "the toilet brush" and soon, I was afraid I had to agree that the aesthetic presence of our little tree was waning. I proceeded to cut out my Michael's coupon and purchased a nice meant to be pre-lit tree (with colors since that's what I preferred as a kid and figured that's what
my kids would want.)
When we moved, we never anticipated that our ceilings would be lower in a newer home, but we ended up having to fit this tree in our family room where the ceilings are vaulted. You will note that the breakable ornaments magically gravitate to the top of the tree. I cannot take all the credit for this lovely tree, indeed Sophia and Zach have decided to redecorate the tree to their own liking on nearly an every day basis.
You will also notice the attempt made to pose the kids in front of the tree for a nice holiday shot to send out as a card. This resulted in Sophia quickly donning a hula skirt and pink sunglasses, and Zach refusing to look towards me regardless of what crazy noise I was able to conjure up outta my mouth. Around here, we have learned you have to take the shots when given the chance, and give up on any posed/purposed shots. I like to think there is someone else calling the shots around here, and it aint us.
I have yet to have this discussion, but I am one to try and reclaim a nickel if I can. When Mom upgraded her fake tree to a pre-lit variety, I gladly grabbed her old tree. Much like others out there, I hated stringing the lights on the stinking tree- so one year, I just left them on, and stuffed the thing up into our attic, lights still on, and voila- made myself a pre-lit tree. Steve was not in love with this tree nor the storage method. He affectionately nicknamed this little tree of my parents "the toilet brush" and soon, I was afraid I had to agree that the aesthetic presence of our little tree was waning. I proceeded to cut out my Michael's coupon and purchased a nice meant to be pre-lit tree (with colors since that's what I preferred as a kid and figured that's what
my kids would want.)When we moved, we never anticipated that our ceilings would be lower in a newer home, but we ended up having to fit this tree in our family room where the ceilings are vaulted. You will note that the breakable ornaments magically gravitate to the top of the tree. I cannot take all the credit for this lovely tree, indeed Sophia and Zach have decided to redecorate the tree to their own liking on nearly an every day basis.
You will also notice the attempt made to pose the kids in front of the tree for a nice holiday shot to send out as a card. This resulted in Sophia quickly donning a hula skirt and pink sunglasses, and Zach refusing to look towards me regardless of what crazy noise I was able to conjure up outta my mouth. Around here, we have learned you have to take the shots when given the chance, and give up on any posed/purposed shots. I like to think there is someone else calling the shots around here, and it aint us.
Monday, December 21, 2009
Christmas at our house- Part I : A Husband has no fear
Editor's Note: No husbands were hurt in the making of these pictures.As a child, I always loved this time of the year. Up here where the snow flies often, we try to begin to decorate before that. Some years that means August. Well, we had an unusually warm November this year, so after Thanksgiving I decided that this was going to be the year, the year that I get the house decorated like in my childhood dreams.
I began by scouring the local home stores for appropriate lighting. Whoa - anyone checkout the prices on those stinking LED lights? I thought about digging out my ol' electronics set and making my own lights, afterall, I do have those handy dandy degrees in electrical engineering, right? Lets not forget that there is a big difference between and electrician and an electrical engineer, and furthermore, a young Chinese line worker who actually assembles those lights in a dimly lit factory somewhere in Zhong Shan.
WalMart came to my rescue and in combination with some fancy schmancy lights I picked up at Lowe's, I was off. When Steve heard about my plans to climb up on the roof and get those bad boys strung, he promptly intervened. I said "yes" he said "no" back and forth a few times. In the end, I said I would call someone to install, and Steve promptly pulled the ol' ladder out of storage and hopped onto one roof, onto another roof, and finally settled onto the final roof where he managed to get them hung, although not completely to my satisfaction since I had bought these special clips so the lights would all line up the same way, and he quickly told me to pound salt. Now, Steve's version of the story may vary, his going along the lines of I was going to go up there, and he trumped me with a larger life insurance policy, and off he went. Either way, after risking dear Steve's life to make my wishes come true, I am quite sure we managed to confirm our neighbors feelings that we are indeed mentally unstable.
A neighbor stopped by to drop off a poinsettia plant (that is quite beautiful I must say and whose sales proceeds go to the Syracuse Children's Chorus - ha ha Missy!) and asked how we managed to get the lights up since apparently, our rumors of our insanity have not made their way through the neighborhood. When we told him, this very bright doctor remarked with a "Wow". This "wow" had a tone of "are you nuts" to it. He also sounded a tad jealous - come to find out, this gentleman's daughters loved our lights and asked him to do something similar to their house. Ha ha - I don't know about Steve, but I now felt redemption in our attempts to create a visage of light around our house. Children were talking about our lights! No greater compliment than that.
The husband hasn't asked for a divorce yet, so I suppose I am still within the limits of life risking adventures that I ask of him. He can be such a good guy I tell you!
Friday, December 18, 2009
Always running late but ending with a bang
Sophia was sick last week, and when I sent in some food items the day after she went back as contributions to the charity work the class was doing, they were returned to me because they were late. I am now labeled the world's worst mother in the eyes of the East Hill kindergarten staff, of course. News has probably made it up to the principal who is probably writing a note to the superintendent as I write this. I hate that I even care about this. Of course, I know that I have a lot going on, and that Sophia was sick the day the stuff was due, but in the back of my mind I keep on thinking, well if I had planned more appropriately, I would have sent the items in ahead of time. Thus the drama ensues in my mind of how they all think I suck so much. Truth be known, I probably feel worse about it than they do, if they even really cared. I guess the one lingering thing in my crazy head is - will the faults of the mother be taken out on the innocent daughter? I wonder if Mrs. B might not lavish Sophia with the praise that Little Suzie will get because her mom cleared out all the canned produce from Wegmans. Of course, Little Suzie's mom probably has her in laws and parents fighting to babysit her kids while her and her husband go off on a romantic weekend after completing all the holiday shopping, which I hate still have yet to do. I can't help it - this is what my brain does.
I guess I have to face it, right now, we are a bit of a charity case. Things will not get done, things might not be attended to as I wish. I am so grateful to the parents groups that I attend to hear how other mothers keep things moving, especially at this time of the year. Some of them have it way more together than I do, some of them have more support, some of them have more serious issues to contend with, too. We are all in this world together, and even if I didn't get the tuna fish delivered to Mrs. B's charity event, they make me feel OK about it without even knowing they are doing it.
Zach's teachers had noticed that Zach was a little under the weather. We had a neighbor who is an internist come over briefly over the weekend to listen to him and Sophia because we were fearing bronchitis because of this occasional phlegmy cough. No bronchitis. Phew. OK - well, he had been throwing up quite a bit - once daily. What the heck - GFCF not cutting it anymore? uughh. Crusty eyes reported on Wednesday so off to the doctors we went thinking pink eye. Turns out the little bugger has a pretty bad ear infection, again, and is likely causing all the other stuff. He gave us absolutely no indication I might add. No ear tugging or major fussiness.
I then discuss with Dr. N. medication. I know this won't be pretty. Zach's last ear infection and the lovely pink liquid I tried to force on him, did manage it's way down, and then back up again onto furniture and light colored carpeting. Freaking red dye. Can someone give me any good reason they add this crap into medications? It serves no purpose other than to support the carpet cleaning industry in this house. Plus, the lovely cherry flavoring makes it impossible to mix in with apple sauce or the like. Dr. N then discusses the chewable format - I am excited about this one. So off to the pharmacist hubby goes while I bring Zach into his next round of therapy. Hubby arrives home, and steam is emanating from every orifice on his body. No, the pharmacist said there are no chewables, furthermore, after Steve once again talked about coloring, and the pharmacist showed him a white bottle of gunk, when actually dispersed, there was the pink junk we were trying to avoid all along. Steve being the vocal antagonist that he is, promptly left the pharmacy, after throwing the charges on the Visa, and came home to snip at all those not connected with the incident. I couldn't blame him for being upset. This stuff gets my goat too.
Whatever would we have done without Al Gore, because I love love love the Internet. While on facebook last night, I was talking to another mother with a young child dxed and she said "Have you ever tried a compounding pharmacy?" I had never heard of such a thing, and of course she had because she is a pharmacist. Apparently, there is a pharmacy in the New Jersey area that can make the Rxs without additives/possible allergens. It takes a little longer to get to you of course, but it's an option. Glad to know that. Right now, we decided to pursue the route of taking Zach back in for a ear check in a few days, and see if we can manage the pink crud into his system somehow.
After a lovely evening of chilling around the house, chatting on the Internet, husband playing with the kids, I had the most welcome surprise. As Daddy was getting pajamas on Sophia, Zach was watching a Thomas the Tank movie and playing with a few toys. The movie ended, and I heard "Bye bye". I looked up from my laptop to see Zach looking at the TV screen, and he then said it again "Bye bye." I was so freaking excited!
Spontaneous use of language that is appropriate - but also something we have never worked on! I did the happy dance and then promptly fell asleep along the side of Sophia while putting her to bed.
I guess I have to face it, right now, we are a bit of a charity case. Things will not get done, things might not be attended to as I wish. I am so grateful to the parents groups that I attend to hear how other mothers keep things moving, especially at this time of the year. Some of them have it way more together than I do, some of them have more support, some of them have more serious issues to contend with, too. We are all in this world together, and even if I didn't get the tuna fish delivered to Mrs. B's charity event, they make me feel OK about it without even knowing they are doing it.
Zach's teachers had noticed that Zach was a little under the weather. We had a neighbor who is an internist come over briefly over the weekend to listen to him and Sophia because we were fearing bronchitis because of this occasional phlegmy cough. No bronchitis. Phew. OK - well, he had been throwing up quite a bit - once daily. What the heck - GFCF not cutting it anymore? uughh. Crusty eyes reported on Wednesday so off to the doctors we went thinking pink eye. Turns out the little bugger has a pretty bad ear infection, again, and is likely causing all the other stuff. He gave us absolutely no indication I might add. No ear tugging or major fussiness.
I then discuss with Dr. N. medication. I know this won't be pretty. Zach's last ear infection and the lovely pink liquid I tried to force on him, did manage it's way down, and then back up again onto furniture and light colored carpeting. Freaking red dye. Can someone give me any good reason they add this crap into medications? It serves no purpose other than to support the carpet cleaning industry in this house. Plus, the lovely cherry flavoring makes it impossible to mix in with apple sauce or the like. Dr. N then discusses the chewable format - I am excited about this one. So off to the pharmacist hubby goes while I bring Zach into his next round of therapy. Hubby arrives home, and steam is emanating from every orifice on his body. No, the pharmacist said there are no chewables, furthermore, after Steve once again talked about coloring, and the pharmacist showed him a white bottle of gunk, when actually dispersed, there was the pink junk we were trying to avoid all along. Steve being the vocal antagonist that he is, promptly left the pharmacy, after throwing the charges on the Visa, and came home to snip at all those not connected with the incident. I couldn't blame him for being upset. This stuff gets my goat too.
Whatever would we have done without Al Gore, because I love love love the Internet. While on facebook last night, I was talking to another mother with a young child dxed and she said "Have you ever tried a compounding pharmacy?" I had never heard of such a thing, and of course she had because she is a pharmacist. Apparently, there is a pharmacy in the New Jersey area that can make the Rxs without additives/possible allergens. It takes a little longer to get to you of course, but it's an option. Glad to know that. Right now, we decided to pursue the route of taking Zach back in for a ear check in a few days, and see if we can manage the pink crud into his system somehow.
After a lovely evening of chilling around the house, chatting on the Internet, husband playing with the kids, I had the most welcome surprise. As Daddy was getting pajamas on Sophia, Zach was watching a Thomas the Tank movie and playing with a few toys. The movie ended, and I heard "Bye bye". I looked up from my laptop to see Zach looking at the TV screen, and he then said it again "Bye bye." I was so freaking excited!
Spontaneous use of language that is appropriate - but also something we have never worked on! I did the happy dance and then promptly fell asleep along the side of Sophia while putting her to bed.
Wednesday, December 16, 2009
Calling all mothers of nontypical/neurodiverse/autistic/developmentally challenged/special needs children
I need your opinions. I know there are a million and one intervention/therapy/treatment options. I don't care what you use.
What I want to know is, how do/did you handle it when you tell someone your child is nontypical/neurodiverse/autistic/developmentally challenged/special needs and they respond with something to the effect:
When I go on to explain stimming and sensory issues, non-receptive language, possible behavioral issues being more of a concern than his being non-verbal - I feel like I get blank stares. I sometimes want to go into the clinical diagnosis criteria of th DSM-IV and sometimes I want to say p*ss off. I think what I should actually do is somewhere in between, but I haven't nailed it yet. Suggestions?
And yes, I know that one option might be to just smile and walk away too...
What I want to know is, how do/did you handle it when you tell someone your child is nontypical/neurodiverse/autistic/developmentally challenged/special needs and they respond with something to the effect:
"He's fine. He's too young. I know someone, my [niece/brother/uncle/son/friend/ friend's niece/friend's brother/friend's uncle/friend's son/friend's friend] and they were a late talker and now they are an [astronaut/astrophysicist/aerospace engineer/ Avon lady] ."
When I go on to explain stimming and sensory issues, non-receptive language, possible behavioral issues being more of a concern than his being non-verbal - I feel like I get blank stares. I sometimes want to go into the clinical diagnosis criteria of th DSM-IV and sometimes I want to say p*ss off. I think what I should actually do is somewhere in between, but I haven't nailed it yet. Suggestions?
And yes, I know that one option might be to just smile and walk away too...
Tuesday, December 15, 2009
Sophia's First Ballet Gig
Here is Sophia's ballet class. She had to convince me to do ballet (I was thinking karate would be a better fit) and we started taking dance classes in October. It was so much fun to watch the little end of semester recital. Sophia refused to look at the teacher for direction, claiming she wanted to look at me. I think she just wanted to check herself out in the mirror.
Zach loved watching the concert and rocked back and forth to the beat of the music. It was terribly crowded when we arrived, which Zach first had difficulty with, but quickly acclimated by spinning in circles for around 2 minutes, and then proceeded to check the place out. Sophia seems to really love this class. I am so glad she has something she enjoys so much. I never took dance, and have no way to guide her. She will be on her own for this journey, with me on the sidelines, cheering. Hope you enjoy the video!
Saturday, December 12, 2009
Zach Loved this Video
Zach really loved the part when Santa is sliding down the tinsel on a candy cane and is about to smack into the ornament. Made him belly laugh and stim at the same time.
Santa Taking The A Train
Santa Taking The A Train
Besides feeling sorry for myself, what have I been doing?
OK - so I am a whiny, annoying person and I rant a lot on this blog. I do hope that most people realize that the purpose of this blog is not single. One of the things I have as a top priority for this blog is an honest record of our journey for Zach. Whininess comes along with that territory for us. Why? I am just not that nice of a person, nor am I that accepting of the unfairness in life. I know people who are - and I am in awe of them. I don't believe that I am the most selfish person, as my previous (self) admonishments might infer.
When I say I am not that nice, I see the other side of this, I try to be a straight talker. I am not one to sugar coat my feelings, despite my mother's constant pleas that "you catch more flies with honey than vinegar". Personally, I find this idiom disgusting. I don't want to catch dirty, poo loving flies. After years of trying to be polite and using flattery to get my way, I found myself more often than not a meek little mouse, who was largely ignored or a volatile wreck who would blow volcanically. In other words, it wasn't in my nature, and it didn't work. If I am nothing else, I am a sincere person. If I give you a compliment, you never had to second guess my intentions, because I truly mean it. I tend to keep my mouth shut more often than not when it comes to really speaking my mind, because I am not always the most diplomatic person, and I know that. That doesn't stop me from putting my enormous size 9.5 in my mouth more often than I like, however. I have to accept who I am, and take the good with the bad, just like everyone else. My goal in this acceptance: I just try to keep that savings account positive where I am doing more good than bad, and hopefully no use of credit.
Speaking of people who are exceptionally nice, I had a recent opportunity to speak with another mother for a group of therapists here in Syracuse. The topic? What to do when you suspect autism in a child. She is the mother of 5 boys, 3 of who are on the spectrum, one has similar issues to Sophie's and there youngest is young enough that they are waiting to see what will be. When I was asked to come in and talk, I never imagined to have so many people in one room. It made me shake a bit, especially after getting their late since the back passenger door in the minivan didn't want to close so I ended up taking Mom's car.
I told the therapists that I couldn't give them the phrase that they would use to speaking with therapists about giving the bad news, that they would have to discover what they felt comfortable with for themselves. Direct, concise, the facts. I told them that they should disclose that they were not able to diagnose, and to have on hand who to refer them to for the dx. I told them giving them names of organizations in the area such as FEAT or CNY ASA. There is nothing pleasant about this experience. You will cause tears. You may shatter dreams. But you will also get people started on a journey. And the earlier the better. I have talked to parents who were deferred by professionals (pediatricians, therapists, etc.) for YEARS. One of the biggest regrets is that they did not recognize what was going on sooner, and get the child the appropriate treatment. This ends up causing serious angst and regret.
One of my projects for next year is sort of on this topic. One of the things FEAT is trying to get going is a workshop for pediatricians on early screening (and ultimately dxing) and management of children on the spectrum. I still hear stories from parents where the pediatrician pooh-poohed their concerns about their child. "He is a boy, they talk later." "He is the second born, they talk later." "He is shy" "Let's wait and see..." Many phrases so consistently heard. So sad to hear. But why? Sometimes it is because of ignorance, or because the practitioner doesn't want to evoke fear, or sometimes it is because they don't want to bother. This workshop will hopefully address ALL of these issues - why it matters, early screening tools, a protocol to handle possible cases, the evidence of early treatment making a difference, how to insurance code these items, the resources available for these children. I am really excited to work on this - and if this gets just one or two pediatricians to pay more due diligence to this issue, I will feel it was not a waste of effort. The biggest issue for this workshop - marketing of course!
We have come up with a strategy of trying to associate a CME (Continuing Medical Education) credit with the workshop. This will give doctors credit towards their requirements for professional development. This is where the hard part has been - trying to get the credit associated with the class. We have the content, the presenters, and a few venues in mind, but we are in the process of trying to get Upstate to be our sponsor for the CME credit. Not as straightforward a process as I had hoped. We will get there though.
I am hoping as an outcome of preparing for this workshop, I can learn a little more about presenting families the topic of their child possibly being on the spectrum and how to provide support during this crisis period in their family life. Not all families are alike in how they will handle this, nor what they will want to do for treatment if any. I can only refer to our experience, and I know that the denial was not as strong as some other families go through. I am hoping the professionals who do this on an almost daily basis can provide some guidance to others, such as therapists, who are on the first line of defense, and sometimes are the first to notice that a child may be on the spectrum.
Eventually, I would like to see a process written up into the Early Intervention programs on how to handle these situations. Of course, with budgetary restrictions, they may want to avoid this topic, since handling autism treatment appropriately requires a huge time alottment of services, and this is a big $$ commitment. As short sighted as this may seem, they cannot see their budgets blow up right now in a time of fiscal crisis. It could actually do damage to the program in its entirety.
The other thing I am trying to offer my expertise, OK well, not really, but at least my guidance on is the updating of the website for FEAT of CNY. There is a master programmer already involved, so I just have to butt in and tell my opinion. Finally, something I am good at. We are in the process of overhauling the whole website - to include a new Donation button.
Of course, no discussion of what I am working on would be complete without the never ending mention of New York state insurance reform. 16 states have insurance reform laws - one just added this week. It's good to live in Ohio (added December 8th.)
On October 23rd, 2009, a public hearing on Autism Spectrum Disorder was held in Albany. The New York State Senate Committees on Insurance, Health, and Mental Health & Developmental Disabilities held the hearing on the role of health insurance in the treatment of autism spectrum disorders. In my free time (maniacal laughter in background), I have been watching snippets of the hours of hours of testimony. The hearing was heartbreaking in some ways. One insurance representative referred to those stakeholders of coverage as "players". SLAP Can you imagine having your child's future referred in reference to a game? Players. I was revolted. While I am sure that this woman had no intention to hurt anyone's feelings, it is very evident that she has no idea or care of what we or any other family is going through. Her care is about the bottom line.
It is so obvious what needs to be done. There is a huge public financial burden currently, paying for required services for adults with this disorder. Not only does it make sense, but there are now peer reviewed research to indicate that we can lessen the symptoms of this disorder if treated correctly, making these individuals more independent, and less expensive in the long run.
As a few of you know, I have contacted my local representatives on this issue, and I continue to urge others to do the same. Do you realize that no only is the treatment not covered - the diagnosis is not covered! Currently the US Senate is working on that one. I am hoping to meet with local representatives to discuss this issue. I urge all of you to please help me stay on our state legislators about this. I will let you know what you can do and who to contact if you are interested in helping. By all means, feel free to contact your own states representatives about the federal mandates as well.
My recommendation for insurance reform: get rid of Viagara coverage and take the savings to cover autism treatment, add to that a tax on delivery of those children born to men over the age of 40- this especially makes sense since research now shows a correlation between the age of a man and higher rates of autism. Problem solved.
And the final project of mine is of course, is getting those therapeutic hose on Mom's dear legs.
When I say I am not that nice, I see the other side of this, I try to be a straight talker. I am not one to sugar coat my feelings, despite my mother's constant pleas that "you catch more flies with honey than vinegar". Personally, I find this idiom disgusting. I don't want to catch dirty, poo loving flies. After years of trying to be polite and using flattery to get my way, I found myself more often than not a meek little mouse, who was largely ignored or a volatile wreck who would blow volcanically. In other words, it wasn't in my nature, and it didn't work. If I am nothing else, I am a sincere person. If I give you a compliment, you never had to second guess my intentions, because I truly mean it. I tend to keep my mouth shut more often than not when it comes to really speaking my mind, because I am not always the most diplomatic person, and I know that. That doesn't stop me from putting my enormous size 9.5 in my mouth more often than I like, however. I have to accept who I am, and take the good with the bad, just like everyone else. My goal in this acceptance: I just try to keep that savings account positive where I am doing more good than bad, and hopefully no use of credit.
Speaking of people who are exceptionally nice, I had a recent opportunity to speak with another mother for a group of therapists here in Syracuse. The topic? What to do when you suspect autism in a child. She is the mother of 5 boys, 3 of who are on the spectrum, one has similar issues to Sophie's and there youngest is young enough that they are waiting to see what will be. When I was asked to come in and talk, I never imagined to have so many people in one room. It made me shake a bit, especially after getting their late since the back passenger door in the minivan didn't want to close so I ended up taking Mom's car.
I told the therapists that I couldn't give them the phrase that they would use to speaking with therapists about giving the bad news, that they would have to discover what they felt comfortable with for themselves. Direct, concise, the facts. I told them that they should disclose that they were not able to diagnose, and to have on hand who to refer them to for the dx. I told them giving them names of organizations in the area such as FEAT or CNY ASA. There is nothing pleasant about this experience. You will cause tears. You may shatter dreams. But you will also get people started on a journey. And the earlier the better. I have talked to parents who were deferred by professionals (pediatricians, therapists, etc.) for YEARS. One of the biggest regrets is that they did not recognize what was going on sooner, and get the child the appropriate treatment. This ends up causing serious angst and regret.
One of my projects for next year is sort of on this topic. One of the things FEAT is trying to get going is a workshop for pediatricians on early screening (and ultimately dxing) and management of children on the spectrum. I still hear stories from parents where the pediatrician pooh-poohed their concerns about their child. "He is a boy, they talk later." "He is the second born, they talk later." "He is shy" "Let's wait and see..." Many phrases so consistently heard. So sad to hear. But why? Sometimes it is because of ignorance, or because the practitioner doesn't want to evoke fear, or sometimes it is because they don't want to bother. This workshop will hopefully address ALL of these issues - why it matters, early screening tools, a protocol to handle possible cases, the evidence of early treatment making a difference, how to insurance code these items, the resources available for these children. I am really excited to work on this - and if this gets just one or two pediatricians to pay more due diligence to this issue, I will feel it was not a waste of effort. The biggest issue for this workshop - marketing of course!
We have come up with a strategy of trying to associate a CME (Continuing Medical Education) credit with the workshop. This will give doctors credit towards their requirements for professional development. This is where the hard part has been - trying to get the credit associated with the class. We have the content, the presenters, and a few venues in mind, but we are in the process of trying to get Upstate to be our sponsor for the CME credit. Not as straightforward a process as I had hoped. We will get there though.
I am hoping as an outcome of preparing for this workshop, I can learn a little more about presenting families the topic of their child possibly being on the spectrum and how to provide support during this crisis period in their family life. Not all families are alike in how they will handle this, nor what they will want to do for treatment if any. I can only refer to our experience, and I know that the denial was not as strong as some other families go through. I am hoping the professionals who do this on an almost daily basis can provide some guidance to others, such as therapists, who are on the first line of defense, and sometimes are the first to notice that a child may be on the spectrum.
Eventually, I would like to see a process written up into the Early Intervention programs on how to handle these situations. Of course, with budgetary restrictions, they may want to avoid this topic, since handling autism treatment appropriately requires a huge time alottment of services, and this is a big $$ commitment. As short sighted as this may seem, they cannot see their budgets blow up right now in a time of fiscal crisis. It could actually do damage to the program in its entirety.
The other thing I am trying to offer my expertise, OK well, not really, but at least my guidance on is the updating of the website for FEAT of CNY. There is a master programmer already involved, so I just have to butt in and tell my opinion. Finally, something I am good at. We are in the process of overhauling the whole website - to include a new Donation button
Of course, no discussion of what I am working on would be complete without the never ending mention of New York state insurance reform. 16 states have insurance reform laws - one just added this week. It's good to live in Ohio (added December 8th.)
On October 23rd, 2009, a public hearing on Autism Spectrum Disorder was held in Albany. The New York State Senate Committees on Insurance, Health, and Mental Health & Developmental Disabilities held the hearing on the role of health insurance in the treatment of autism spectrum disorders. In my free time (maniacal laughter in background), I have been watching snippets of the hours of hours of testimony. The hearing was heartbreaking in some ways. One insurance representative referred to those stakeholders of coverage as "players". SLAP Can you imagine having your child's future referred in reference to a game? Players. I was revolted. While I am sure that this woman had no intention to hurt anyone's feelings, it is very evident that she has no idea or care of what we or any other family is going through. Her care is about the bottom line.
It is so obvious what needs to be done. There is a huge public financial burden currently, paying for required services for adults with this disorder. Not only does it make sense, but there are now peer reviewed research to indicate that we can lessen the symptoms of this disorder if treated correctly, making these individuals more independent, and less expensive in the long run.
As a few of you know, I have contacted my local representatives on this issue, and I continue to urge others to do the same. Do you realize that no only is the treatment not covered - the diagnosis is not covered! Currently the US Senate is working on that one. I am hoping to meet with local representatives to discuss this issue. I urge all of you to please help me stay on our state legislators about this. I will let you know what you can do and who to contact if you are interested in helping. By all means, feel free to contact your own states representatives about the federal mandates as well.
My recommendation for insurance reform: get rid of Viagara coverage and take the savings to cover autism treatment, add to that a tax on delivery of those children born to men over the age of 40- this especially makes sense since research now shows a correlation between the age of a man and higher rates of autism. Problem solved.
And the final project of mine is of course, is getting those therapeutic hose on Mom's dear legs.
Friday, December 11, 2009
New Doctor to the Central New York Area
Calling all parents/caretakers/teachers/therapists/etc. to children who have behavioral issues with their child (autism/ADHD/whatever...):
A new clinic is now open at the Upstate: the Family Behavior Analysis Clinic headed by Dr. Henry Roane.
Dr. Roane presented some of his research to us, and it was very compelling. There was an overview of how the clinic runs, and he presented video of some of his work at his previous clinics. It appears that they first work with the family to get a description of the problem behaviors. They then bring the child into the clinic and attempt to bring out the behaviors using various possible antecedents. They have customized software that one of the clinicians uses to track various variables, such as the occurrences of problem behaviors, and other observables. The session is videorecodred. They analyze the data and then attempt a treatment plan. Their goal is to lessen the problem behaviors by 80% for each child - and according to the information he presented, he has been able to achieve that rate (and usually even better) for a majority of his patients. (I want to say 90% of his patients, but I am attempting to recall the presentation from memory and could be wrong.) Once the treatment plan has been tested for efficacy, it can then be documented for use in IEPs. The nice part of the program is that they teach family members how to use the techniques and give them the guidance they need to follow through.
Dr. Roane and his wife, also a clinician, have worked with some really tough cases. They provided pictures of patients who were self-injurious to the point of hospitalization (tantalizing to watch around lunchtime, eh?). One child had gouged his arm continually and the scars resembled that of a burn victim with grafting, another tore her retina (to the point of almost blindness), another client had pica and swallowed everything - he showed an X-ray in which the child had swallowed a safety pin that was closed, but opened while in the throat. These cases are so troubling for these families - and frequently insurance companies refuse coverage citing that it is not a medical condition. Dr. Roane has experience with handling insurance companies and school districts. In other words, he doesn't leave these families hanging with just a report and some ideas on how to manage. He appears to offer them the support they need beyond the treatment plan, with training, and help in resolving issues with IEP's and insurance companies. I do hope his work is as good as presented.
I cannot personally or anecdotally recommend him, but he seems to come with a very good reputation and good credentials. Hank had an aunt who was severely retarded and had self injurious behavior. His interest in the field began in college when taking a psychology course where they addressed such issues. I find that when people have a personal connection to an interest, they are just that much smarter and motivated about the issue.
The clinic officially opens in January, and they have begun a patient list already. For referrals please contact Kelly Martini at (315-464-3145). I am hoping this clinic can give hope to those parents who are struggling with issues with their babies. BTW - they handle ages 2-21.
A new clinic is now open at the Upstate: the Family Behavior Analysis Clinic headed by Dr. Henry Roane.
Dr. Roane received his Ph.D. in 2000 from Louisiana State University in Psychology with an emphasis on the assessment and treatment of behavior disorders in individuals with developmental disabilities. He completed a pre-doctoral internship in pediatrics and psychology at the Kennedy Krieger Institute and the Johns Hopkins University School of Medicine.I had the chance to meet him and his wife, Heather, last week at a meet and greet luncheon sponsored by FEAT. His wife, also a part of the clinic, specializes in feeding issues. Dr. Roane does not refer to himself as an autism expert, but as a problem behavior specialist. His particular interest includes severe behaviors, in particular, self injury.
Dr. Roane presented some of his research to us, and it was very compelling. There was an overview of how the clinic runs, and he presented video of some of his work at his previous clinics. It appears that they first work with the family to get a description of the problem behaviors. They then bring the child into the clinic and attempt to bring out the behaviors using various possible antecedents. They have customized software that one of the clinicians uses to track various variables, such as the occurrences of problem behaviors, and other observables. The session is videorecodred. They analyze the data and then attempt a treatment plan. Their goal is to lessen the problem behaviors by 80% for each child - and according to the information he presented, he has been able to achieve that rate (and usually even better) for a majority of his patients. (I want to say 90% of his patients, but I am attempting to recall the presentation from memory and could be wrong.) Once the treatment plan has been tested for efficacy, it can then be documented for use in IEPs. The nice part of the program is that they teach family members how to use the techniques and give them the guidance they need to follow through.
Dr. Roane and his wife, also a clinician, have worked with some really tough cases. They provided pictures of patients who were self-injurious to the point of hospitalization (tantalizing to watch around lunchtime, eh?). One child had gouged his arm continually and the scars resembled that of a burn victim with grafting, another tore her retina (to the point of almost blindness), another client had pica and swallowed everything - he showed an X-ray in which the child had swallowed a safety pin that was closed, but opened while in the throat. These cases are so troubling for these families - and frequently insurance companies refuse coverage citing that it is not a medical condition. Dr. Roane has experience with handling insurance companies and school districts. In other words, he doesn't leave these families hanging with just a report and some ideas on how to manage. He appears to offer them the support they need beyond the treatment plan, with training, and help in resolving issues with IEP's and insurance companies. I do hope his work is as good as presented.
I cannot personally or anecdotally recommend him, but he seems to come with a very good reputation and good credentials. Hank had an aunt who was severely retarded and had self injurious behavior. His interest in the field began in college when taking a psychology course where they addressed such issues. I find that when people have a personal connection to an interest, they are just that much smarter and motivated about the issue.
The clinic officially opens in January, and they have begun a patient list already. For referrals please contact Kelly Martini at (315-464-3145). I am hoping this clinic can give hope to those parents who are struggling with issues with their babies. BTW - they handle ages 2-21.
Wednesday, December 9, 2009
Software
Last night I had the doctor next store come over and give the kids' lungs a listen. The cough they had sounds like it is getting worse, and I was nervous that it could be bronchitis, or something worse. he said they sound clear. That makes me feel better.
So, Zach put his mouth on my finger last evening, again, not out of anger. I was anticipating a bite, and he looked me in the eye, and then gave me a kiss. It was as if he had the urge to do it, and stopped himself. Phew.
With Zach getting some computer skills (more than Sophia had at this age I might add), we are now looking into software packages that could help him attain or bring out some of his skills. Zach grossly under-performs for people when in typical learning settings, but when given motivation, he can perform a lot more. Finding motivators for Zach has been difficult. What has been interesting to him one day, may not be the next. We run constant preference assessments on him to see what gets him going. Is it a toy? A video? A food item? A tickle? A bounce on the trampoline?
In the beginning, the therapists started with solely edibles, and in particular, candy to get him going. Zach did not care much about social praise at the time - remember this is a kid that would look right through you as if you didn't exist. The therapists carefully paired social praise with the edibles until the social praise was associated with something positive for Zach, and they were able to fade out the edibles. This is part of the design of ABA.
After edibles, videos came next for Zach. He would even request "mooeee" for "movie". Once he could say movie spontaneously, they actually had him qualify which movie: "Blues Clues"? "Thomas?", "Dora?". He did it. Of course, this was a skill he had at the peak of his summer sessions when he was receiving 35-40 hours of intense therapy a week. Hopefully, we will get there again.
Anyhow, one therapist that Zach really took to was Ali. We privately hired her for the summer to work with Zach, and she would do "her work" with Zach (usually running the discrete trials and programs the lead therapist would leave for her) and then she would end the session on a positive note by going into his bedroom and turning on the computer and playing with him on the computer. Did I happen to mention he mastered more programs during this time period when she was around than at any other time? While we could give all the credit to Ali, I feel like I should have picked up on the fact that she was smart enough to realize the reinforcing quality of that computer. The other therapists didn't quite have the knack of using the computer that Ali did so it was not continued to the extent it was used when she was here.
Light bulb moment recently. So Steve and I were actually considering whipping out some software that would be a game/skill builder and design it to match the skills he has and ones we would like to work on. It is so nice having a master programmer for a husband - and yes, he is probably one of the best programmers out there. Being a geek, I can tell you it was one of the things that attracted me to him. (BTW - he's not just good, he's Google-good - yes, Google contemplated him for a position, but Steve backed out once he saw the cost of living in the areas we would have to move to.)
Ahh, but wouldn't you know, there are already packages out there for kids on the spectrum. A few of them even have an ABA approach! This, of course, makes sense to me, since ABA is methodological and scientific in its approach.
So now we have to choose which program we think we will go with. They are not cheap, so I don't want to just throw money away.
There's Fast For Word at $1300. ( YIKES!)
Discrete Trail Trainer Bundle at $150, a little easier to swallow.
Teachtown, $10 up front, and $40 a month.
These packages in particular are interesting, because they track progress and actually even have an intelligent feature that automatically scales the levels of actitivies and type of activities to the levels the child demonstrates. The other thing I like about this software, versus traditional typical learning software, is that incorrect answers are not rewarded only correct answers. One of Zach's current games will allow you to hit buttons that are non-functional relative to the goal of the game he is playing, but still do something goofy, like make a funny noise or face on a character, which is a reward for him. Sometimes he will play with these little Easter eggs rather than the game, which makes the game last a little longer with nothing gained. In other words, it wastes time.
One thing I have read that I need to be acutely aware of is that we need to limit the time on the computer. There are a lot of children on the spectrum who become addicted to it, and won't leave the computer, when asked to (OK let's be real here, when forced to.) Some children will actually become combative. So glad I could talk to and read some of the veterans experiences before going down this journey - hopefully I will avoid a few land mines now. Some of this software has built in timers to help you with this. I am also looking to see if there is a built in timer function we can add to our computer generically to do the same thing - Sophia could use it, and let's face it, so could I! Once in awhile, I just can't seem to get off facebook. :)
There is a plethora of gaming software out there. Still need to go through it some more and talk to teachers, therapists, and other parents on their opinions of it. If anyone has used something- I would love to learn what you think - so send your comments in!
So, Zach put his mouth on my finger last evening, again, not out of anger. I was anticipating a bite, and he looked me in the eye, and then gave me a kiss. It was as if he had the urge to do it, and stopped himself. Phew.
With Zach getting some computer skills (more than Sophia had at this age I might add), we are now looking into software packages that could help him attain or bring out some of his skills. Zach grossly under-performs for people when in typical learning settings, but when given motivation, he can perform a lot more. Finding motivators for Zach has been difficult. What has been interesting to him one day, may not be the next. We run constant preference assessments on him to see what gets him going. Is it a toy? A video? A food item? A tickle? A bounce on the trampoline?
In the beginning, the therapists started with solely edibles, and in particular, candy to get him going. Zach did not care much about social praise at the time - remember this is a kid that would look right through you as if you didn't exist. The therapists carefully paired social praise with the edibles until the social praise was associated with something positive for Zach, and they were able to fade out the edibles. This is part of the design of ABA.
After edibles, videos came next for Zach. He would even request "mooeee" for "movie". Once he could say movie spontaneously, they actually had him qualify which movie: "Blues Clues"? "Thomas?", "Dora?". He did it. Of course, this was a skill he had at the peak of his summer sessions when he was receiving 35-40 hours of intense therapy a week. Hopefully, we will get there again.
Anyhow, one therapist that Zach really took to was Ali. We privately hired her for the summer to work with Zach, and she would do "her work" with Zach (usually running the discrete trials and programs the lead therapist would leave for her) and then she would end the session on a positive note by going into his bedroom and turning on the computer and playing with him on the computer. Did I happen to mention he mastered more programs during this time period when she was around than at any other time? While we could give all the credit to Ali, I feel like I should have picked up on the fact that she was smart enough to realize the reinforcing quality of that computer. The other therapists didn't quite have the knack of using the computer that Ali did so it was not continued to the extent it was used when she was here.
Light bulb moment recently. So Steve and I were actually considering whipping out some software that would be a game/skill builder and design it to match the skills he has and ones we would like to work on. It is so nice having a master programmer for a husband - and yes, he is probably one of the best programmers out there. Being a geek, I can tell you it was one of the things that attracted me to him. (BTW - he's not just good, he's Google-good - yes, Google contemplated him for a position, but Steve backed out once he saw the cost of living in the areas we would have to move to.)
Ahh, but wouldn't you know, there are already packages out there for kids on the spectrum. A few of them even have an ABA approach! This, of course, makes sense to me, since ABA is methodological and scientific in its approach.
So now we have to choose which program we think we will go with. They are not cheap, so I don't want to just throw money away.
There's Fast For Word at $1300. ( YIKES!)
Discrete Trail Trainer Bundle at $150, a little easier to swallow.
Teachtown, $10 up front, and $40 a month.
These packages in particular are interesting, because they track progress and actually even have an intelligent feature that automatically scales the levels of actitivies and type of activities to the levels the child demonstrates. The other thing I like about this software, versus traditional typical learning software, is that incorrect answers are not rewarded only correct answers. One of Zach's current games will allow you to hit buttons that are non-functional relative to the goal of the game he is playing, but still do something goofy, like make a funny noise or face on a character, which is a reward for him. Sometimes he will play with these little Easter eggs rather than the game, which makes the game last a little longer with nothing gained. In other words, it wastes time.
One thing I have read that I need to be acutely aware of is that we need to limit the time on the computer. There are a lot of children on the spectrum who become addicted to it, and won't leave the computer, when asked to (OK let's be real here, when forced to.) Some children will actually become combative. So glad I could talk to and read some of the veterans experiences before going down this journey - hopefully I will avoid a few land mines now. Some of this software has built in timers to help you with this. I am also looking to see if there is a built in timer function we can add to our computer generically to do the same thing - Sophia could use it, and let's face it, so could I! Once in awhile, I just can't seem to get off facebook. :)
There is a plethora of gaming software out there. Still need to go through it some more and talk to teachers, therapists, and other parents on their opinions of it. If anyone has used something- I would love to learn what you think - so send your comments in!
Monday, December 7, 2009
uugghh
He couldn't just let me have a good day now, could he?
Zach bit me tonight. Twice. Only me. He wasn't mad. He was acting spazzy; running around, jumping, jumping on me, kissing me, and then whammo he tagged me. Later on, was just about the same thing, he was running around, jumped on me, pulled my hair, and went for it.
Oh please please please please may this not be a new behavior. And please please please, may he not do this to anyone else!
Zach bit me tonight. Twice. Only me. He wasn't mad. He was acting spazzy; running around, jumping, jumping on me, kissing me, and then whammo he tagged me. Later on, was just about the same thing, he was running around, jumped on me, pulled my hair, and went for it.
Oh please please please please may this not be a new behavior. And please please please, may he not do this to anyone else!
Sunday, December 6, 2009
Mouse Leg Balloon
Hot off the press:
Zach has learned to move a mouse independently. I am still in shock. He still has to learn how to fine tune his movements, but he definitely gets it and that is step one. The game he was using doesn't require him to click, so that will be the next step. He still has more fine tuning when it comes to how much to move the mouse around, however, he is proficient enough to play this particular game independently ~85% of the time. Lesson learned: when motivated, he will learn.
Verbally, we noticed he is spontaneously saying words more frequently. His old words of banana and apple are most obvious, although he referred to an orange as an apple which I had to correct. Problem is - orange is a hard word for him to say. It will come in time I am sure. He has also said cracker, chip, ting, milk, juice, bubble, ball, tickle, spontaneously although when referring to an object, is was usually within sight or sometimes visually prompted by holding the object before him to make a choice. But not always. A few evenings ago, while he was sitting near me, he said "leg" and gestured for me to rub his leg. Last night, we were at Wegmans and they gave us balloons. Before we said anything, Zach said "aboon" without any other prompt. What is particularly interesting is the leg and balloon are not things we are working on, they again were just highly motivating.
As for his school program, good things happening there, although I feel that in some areas he is doing less for them than he can do at home. His OT reported that he needed help completing puzzles and simple shape sorters - and we were really surprised by this. He was given one shape sorter with about a dozen different shapes last Christmas, he had it figured out on hiw own within 3 days. But then again, the PT wrote that he had ridden his tricycle independently across level pavement for ~ 20 feet, and we haven't seen that at home!
We were able to get candy canes that are GFCF, no artificial dyes, and organic. At $3.25 a box - I have to shudder a bit, but they are one of his favorite food items right now, and I am thrilled that I could find them at all! A highly motivating item that will be sent to his school. Let us see if that creates any results.
But right n0w, all I can say is something is going down with this little boy, and it looks good.
Zach has learned to move a mouse independently. I am still in shock. He still has to learn how to fine tune his movements, but he definitely gets it and that is step one. The game he was using doesn't require him to click, so that will be the next step. He still has more fine tuning when it comes to how much to move the mouse around, however, he is proficient enough to play this particular game independently ~85% of the time. Lesson learned: when motivated, he will learn.
Verbally, we noticed he is spontaneously saying words more frequently. His old words of banana and apple are most obvious, although he referred to an orange as an apple which I had to correct. Problem is - orange is a hard word for him to say. It will come in time I am sure. He has also said cracker, chip, ting, milk, juice, bubble, ball, tickle, spontaneously although when referring to an object, is was usually within sight or sometimes visually prompted by holding the object before him to make a choice. But not always. A few evenings ago, while he was sitting near me, he said "leg" and gestured for me to rub his leg. Last night, we were at Wegmans and they gave us balloons. Before we said anything, Zach said "aboon" without any other prompt. What is particularly interesting is the leg and balloon are not things we are working on, they again were just highly motivating.
As for his school program, good things happening there, although I feel that in some areas he is doing less for them than he can do at home. His OT reported that he needed help completing puzzles and simple shape sorters - and we were really surprised by this. He was given one shape sorter with about a dozen different shapes last Christmas, he had it figured out on hiw own within 3 days. But then again, the PT wrote that he had ridden his tricycle independently across level pavement for ~ 20 feet, and we haven't seen that at home!
We were able to get candy canes that are GFCF, no artificial dyes, and organic. At $3.25 a box - I have to shudder a bit, but they are one of his favorite food items right now, and I am thrilled that I could find them at all! A highly motivating item that will be sent to his school. Let us see if that creates any results.
But right n0w, all I can say is something is going down with this little boy, and it looks good.
Wednesday, December 2, 2009
Never Give Up
I found this tonight amongst a bunch of scrap paper that Sophia had scribbled on. Sophia never used to like to color. Never used to like to draw. She avoided it at all costs and became irritated when anyone tried to help her - teachers, therapists, sitters, but mostly me. Writing was the thing we noticed that she was so behind in that led us to her evaluation, and then we really learned a lot about what was going on with her. She has had therapy 2x a week since September of 2008, she had preschool where teachers worked with her, we hired an OT major to work with her for 10 hours a week this past summer, and still, she struggled to trace the letters in her name, let alone independently draw them. One day a few weeks ago, I gave Sophie an old notepad, half used. And then there it was. Something clicked. She drew things on every page and then came and asked me for another notepad. She all the sudden had a voracious appetite for sketching. She brings notepads in the car with her and sits at the kitchen table, drawing, sketching, writing. When I saw this piece above, unsolicited, a piece of scrap paper with all 26 letters in order on it, some correct, some not so much; my heart filled with joy. It has come to her. Was it the therapy? Was it a teacher? Was it her time? Yes. Lately I have become concerned that Zach may have a cognitive disability. A close relative insinuated recently that it was wishful thinking on my part that I don't believe that Zach has cognitive challenges. Mind you, I love him so much, and no matter what label anyone sticks to him, I will never love him less. I asked a therapist to comment, and she quickly diverted the conversation. I am sure it is an uncomfortable topic. I am not sure if she did this on purpose or not. But I began to question this more. This unknowing seems to take the wind out of my sails. Then there was tonight. I was hastily cleaning up, found the pile of scrap paper with scribbles, with the alphabet hidden in the middle. I was just about to dump the whole pile of scribbled scrap in to the recycling bin, when something made me stop and look through it. I had begun to think after all we have done with Sophia that nothing would ever get her to write. I remember thanking God for the keyboard, knowing how proficient she was becoming using it to play games. And voila. Last week Zach uttered a decent number of words spontaneously that we have never heard him say before .... and haven't heard since. Zach does not understand the concept of exchanging ideas or thoughts, but that doesn't mean he doesn't think. He doesn't say much, but that doesn't mean he is not understanding the information being presented to him. Sometimes all this therapy doesn't feel like it is doing much because of my perception which might not be reality. It's easy to feel like it might not be worth it. I am glad I have Sophia as a reference. She is writing! More importantly, she is trying to write. I often wondered if the reason she wouldn't even try was out of fear, knowing that it was so difficult for her. Could this translate to Zach? I think so. I am glad that the Big Guy upstairs sent me this little wake up call to see that indeed, all things are possible. I just need to keep my eyes and ears open. Oh yeah... and never give up. And I will gladly accept scrap paper or notepads if anyone wants to make a donation. We are beginning to run short!
Tuesday, December 1, 2009
Manding and Tacting
Manding and Tacting (nerd speek for requesting and labeling)
A quick and dirty look over the past week.
A quick and dirty look over the past week.
- Zach has been spontaneously manding for milk, apple, pretzels, and chips (potato chips) at home this last week when the item was present (sitting on a counter or table).
- He also manded for "tickles" after a prompt.
- He has had a lot of spontaneous tacting this past week to include: penguin, square, circle, blue, green, Thomas (and a few others I didn't document nor can I recall) as well as the phrase: "wake up", and "boo" (wanting to play a peek a boo type game).
- He has shown us that he is able to play another game on his computer that we did not realize he could play. (That makes 2 new games this month) It is a sort of shape-sorter game.
- He also has responded to some 1-step directions: sit (when standing on his chair), lift your dupa (when getting dressed while laying down in an effort to get pants up), give me your foot (when putting shoes on), pick up and put in after being prompted.
The Meeting
I believe that we may have had success. We met with the lawyer before the meeting. I was a Nervous Nelly and spent most of this pre-meeting time rambling. I said a prayer that I got it out of my system before the meeting. Then there was the meeting. I kept on reminding myself to "listen, don't speak, listen, don't speak". I did.
I found out as entering into the room to have the meeting that the school district was not notified that we were bringing a lawyer. They dealt with that very well, and said if we came to an impasse, they would halt the meeting, and reschedule until their lawyer was there. I appreciated that.
We had asked our previous BCBA to conduct a VB-MAPP on Zach a few weeks ago. She ran this tool, which indicates levels of verbal skills, problem behaviors, and transition abilities. Transition abilities indicate if the child is progressing in a pattern that is successively more independent in an effort to get them in the least restrictive environment educationally. This same tool was used in May and in August.
The results of the VB-MAPP indicated that Zach has shown a regression of skills since entering the school program. When I first reviewed these results, I was shocked at the level of regression. I was deeply saddened about this and actually considered if we were doing the right thing by having him in the school at all. We reviewed all of the options again to see if there was a more appropriate fit. I consulted with the "experts/specialists" to indicate what the best option was. The combined school with itinerant services seems the best option. A school option alone is not meeting all his needs, a home program in practice was not fully effective in our experience, Zach was resistant to therapists at home and the home environment was becoming an aversive.
Zach loves going to school. He is getting the idea of structure and routine. He is accepting other individuals into his life. These are all important.
During the course of the meeting I did review Zach's schedule at the school. The county representative actually requested an additional session of speech a week ( he will now be receiving speech 5 times a week). I was surprised by this - but actually OK with it. What I feared was that they would reduce anything else we requested by the this time.
The school then asked the director of the ABA program at Zach's school what she recommended to get Zach back to his progression of this summer. She deferred the question to me. I hated this. I really wanted her to speak to this. I was a little flustered since I oh so intentionally was trying to keep my trap shut. Had I gone in there expecting to speak to this, I would have probably unintentionally rehearsed some key phrases. But here I was having to respond on-the-fly. I stumbled a bit, but the gist of my request was that I wanted 2 hours a day of in the home ABA on top of the school program. I did not request a 1:1 aid in the classroom. Although I think this is a good idea, it wasn't top priority. However, I am in the process of trying to devise a strategy that would in effect do this. I will be attempting to find a few interns at SU or LeMoyne who are looking for internships for next semester and hoping that SPICE can add them in?? BTW - if you know of anyone, let me know! PLEASE!
We then discussed the "who" of this matter. I basically stated that H. our EI BCBA therapist would be a good fit: 1) because she was familiar with the case, 2) because she used the same approach and had a similar philosophy to Dr. P (the ABA director at Zach's school), and 3) because she was available.
There are some major contractual issues (hoops that need to be jumped) in order to get things in place. The problem is, they can only bill a speech person for 1 hour a day - this is the goofiness of how contracts work - they have nothing to do with the reality of the situation. I hate when protocol/policy/process dictate how to do something and one has to retrofit what makes sense into some limited scope. Uugghh. Saw this at work, read Dilbert cartoons about it, and now have to deal with it with my kid. I pray that we receive good news by the end of the week that this can be worked out somehow. 1 hour a day saves us roughly $12,000, 2 hours will save us $24,000. (I am not going to lie to you - I still have hope that we can one day redo our kitchen as we intended when we bought our house... I am trying to keep that dream alive. LOL)
So there you have it - good news, but not smooth sailing. Please say a prayer that they can finagle a way to handle this situation. I keep on thinking that we are set until May, and then what? Take each day as it comes....
I found out as entering into the room to have the meeting that the school district was not notified that we were bringing a lawyer. They dealt with that very well, and said if we came to an impasse, they would halt the meeting, and reschedule until their lawyer was there. I appreciated that.
We had asked our previous BCBA to conduct a VB-MAPP on Zach a few weeks ago. She ran this tool, which indicates levels of verbal skills, problem behaviors, and transition abilities. Transition abilities indicate if the child is progressing in a pattern that is successively more independent in an effort to get them in the least restrictive environment educationally. This same tool was used in May and in August.
The results of the VB-MAPP indicated that Zach has shown a regression of skills since entering the school program. When I first reviewed these results, I was shocked at the level of regression. I was deeply saddened about this and actually considered if we were doing the right thing by having him in the school at all. We reviewed all of the options again to see if there was a more appropriate fit. I consulted with the "experts/specialists" to indicate what the best option was. The combined school with itinerant services seems the best option. A school option alone is not meeting all his needs, a home program in practice was not fully effective in our experience, Zach was resistant to therapists at home and the home environment was becoming an aversive.
Zach loves going to school. He is getting the idea of structure and routine. He is accepting other individuals into his life. These are all important.
During the course of the meeting I did review Zach's schedule at the school. The county representative actually requested an additional session of speech a week ( he will now be receiving speech 5 times a week). I was surprised by this - but actually OK with it. What I feared was that they would reduce anything else we requested by the this time.
The school then asked the director of the ABA program at Zach's school what she recommended to get Zach back to his progression of this summer. She deferred the question to me. I hated this. I really wanted her to speak to this. I was a little flustered since I oh so intentionally was trying to keep my trap shut. Had I gone in there expecting to speak to this, I would have probably unintentionally rehearsed some key phrases. But here I was having to respond on-the-fly. I stumbled a bit, but the gist of my request was that I wanted 2 hours a day of in the home ABA on top of the school program. I did not request a 1:1 aid in the classroom. Although I think this is a good idea, it wasn't top priority. However, I am in the process of trying to devise a strategy that would in effect do this. I will be attempting to find a few interns at SU or LeMoyne who are looking for internships for next semester and hoping that SPICE can add them in?? BTW - if you know of anyone, let me know! PLEASE!
We then discussed the "who" of this matter. I basically stated that H. our EI BCBA therapist would be a good fit: 1) because she was familiar with the case, 2) because she used the same approach and had a similar philosophy to Dr. P (the ABA director at Zach's school), and 3) because she was available.
There are some major contractual issues (hoops that need to be jumped) in order to get things in place. The problem is, they can only bill a speech person for 1 hour a day - this is the goofiness of how contracts work - they have nothing to do with the reality of the situation. I hate when protocol/policy/process dictate how to do something and one has to retrofit what makes sense into some limited scope. Uugghh. Saw this at work, read Dilbert cartoons about it, and now have to deal with it with my kid. I pray that we receive good news by the end of the week that this can be worked out somehow. 1 hour a day saves us roughly $12,000, 2 hours will save us $24,000. (I am not going to lie to you - I still have hope that we can one day redo our kitchen as we intended when we bought our house... I am trying to keep that dream alive. LOL)
So there you have it - good news, but not smooth sailing. Please say a prayer that they can finagle a way to handle this situation. I keep on thinking that we are set until May, and then what? Take each day as it comes....
Sunday, November 29, 2009
Friends and pursuing lofty goals
What happens to friends? Sometimes they seem to be little Energizer Bunnies who go on and on. Sometimes they fade quickly. And sometimes they go on to a point and then fade. Does the energy that went into the relationship dissipate or does it go somewhere else?
Relationships require work - some are easier and more fluid, and of course this all depends on your circumstances. Since I basically sucked at relationships before all of this craziness, I am surprised anyone has stuck with me, especially with my definite negligence. There are a few friends I have who do not have children and probably think I am just a whiny fool - and they would be right by the way - but as I hear stories of being single and dating issues or work issues - I feel that is a world so far away from my own right now. I sometimes get nostalgic. I remember purchasing my first new car, driving down 81 speeding with the moonroof open on a beautiful morning, with my makeup perfect and music blaring, no gray hairs BTW, and a cute outfit, on my way to my job, where I would then go to grad school after work and hang out with more smart people, grab a bite on the hill, and look forward to a weekend where I would be wined and dined by a cute guy. I become a tad wistful - and then I laugh remembering that I would be jealous of friends who already had families. Of course, no one I knew at the time had a child with special needs. Would I have still been jealous?
I want others to know: as much as I rant/complain/b*tch/etc., I am happy. I am probably not very balanced. I am teetering between out of control and merely stressed - so easily. Things are sort of pushed just shy of the limit - operating at 95% duty cycle, not quite 100%, but almost. Then something unusual happens that really isn't all that bad, or sometimes is all the bad, and now the system is requiring more than 100%, and that is where we run into trouble. Life is like operating on schedule all the time, with almost no slack
If you have no idea what I am talking about, think of it this way:
Scenario 1: you give yourself 25 minutes to get to an appointment that usually takes 15 minutes to get there. The trouble is, you get behind a school bus dropping off students every 100 feet, and then there is a police check on the on-ramp to the expressway. When you arrive at your location, all the spaces in the parking lot are filled. You park illegally praying not to get a ticket, and find out when you enter, that you have been misdirected and are at the wrong location. You run back to your car, which hasn't been towed or ticketed, thankfully, only to discover the car has a flat tire. You go to call the office where your appointment is to tell them you will be late, and realize your cell phone battery has died. You then realize you left your wallet at home. And then it begins to rain.
Scenario 2: Or you give yourself 15 mintues to get to your appt and all goes smoothly.
Its a crapshoot as to how life is going to be day to day. Time is the problem with most of our circumstance. Everything we do takes triple the time it used to prior to our intervention. We live a life of exceptions: special diets, therapists, doctors appointments, research, ailments.
I have always hated the term "sandwich generation" for some resason. I am not sure why. I think there is an implication that this phenomenon of taking care of multigenerational family members is a new one - although in my ethnic family background, it is very typical. I guess I am in that circumstance right now. I am taking care of wee little ones, and have an aging widowed mother to help out with. And both the wee ones and the elders have much going on: SPD, autism, lung cancer, COPD, asthma, and a hip replacement.
Have I ever mentioned that I am not a "foot" person. If you are like me, you know what I am talking about. Feet give me the heebie jeebies. All, except cute baby feet. Sophia's feet are beginning to lose that appeal now that they are a size 1.5 ( and she is only 5!) Alright, so I am cleaning up puke, poop, snot on a regular basis, right? I can do gross stuff with ease. But my new duty to my mother is to get her orthopedic socks on in the mornings. Yes, I have to deal with old people feet. Mom doesn't read the blog - and you all better not snitch on me, but I gotta tell you, this is not a fun task for me! But I do it.
It's hard to communicate to anyone that there are so many things you do in life you do not enjoy, you do not like, and you have to do them anyway. And all these things that you really don't want to do, but know you have to do, take time. And time is limited. These things you do take away time from things you would rather be doing - like hanging with friends. But what tends to happen to me, is after Zach is off to school, Sophia is put on the bus, the visit to Mom's to take care of things like putting orthopedic socks is done, then there is housework to do, phone calls to make, paperwork to file, etc. and then Sophia is off the bus, and it's time to get Zachy from school, and then a quick lunch, and on to therapy, and the doctors appointments, ballet, dinner, homework, baths, reading, passout, and begin to do it all over again the next day.
I know a lovely young lady pursuing her degree in medicine. She is bright and talented, but her endeavor still requires her to work, and work hard. When I had the opportunity to speak with her at Thanksgiving, I realized we probably had similar lifestyles. She said she knew med school would be tough, but she didn't realize how tough. She didn't get the chance to elaborate, but I felt I could probably figure out why. It's the commitment level - it's the never ending studying. No breaks. No time for socialization or partying anymore. When you are trying to achieve something, more often than not, you have to sacrifice other things that are important to you too.
I feel honored that I can help take care of my mother and my children. It gives me a peace of mind knowing we don't have to rely on strangers to do everything. I am sure a lot of people in my life think I just don't "make the time" to do things like take care of friends. They do end up getting the short end of the stick. I do care, I still love them. In fact, I miss them. I miss my family too. I don't see them much. However, right now, I am an Olympic athlete in training. The sport? Zachary autism triage.
The good news - things are happening with Zach. Things are sort of clicking with him. He is accepting more people in his life than he ever did before. He laughs with people, will even pursue engagement with people. He still perfers people he is more familiar with. So if you want to have a relationship with Zach, realize this, this is not about the occasional "quality time". I always felt the notion of quality vs. quantity time when it came to children was interesting. People who feel that structure, planned events with their children can make up for their lack of presence are being naive. You can't force moments to happen. But then again, old school thinking of not playing with your children but jsut being around, and letting them figure out things on their own is insufficient and somewhat negligent too. Just because you are nearby your child doesn't make you present. I think of all the times when I start to tune Sophia's never-ending ramblings out, and if I did that all the time, I would surely miss some of the best philosophy of the 21st century! Zach's autism has made the notion of quantity and quality extremely clear for us. If you are just around Zach, he will tolerate your presence, but if you want him to ever come up to you, look you in the eye, and try to engage you, that is going to take some regular commitment of purposeful playing with him. Just ask his teachers who came to the house during Thanksgiving break!
Tomorrow is a big day, as you may know. We meet with the school and the county. The $25,000 question will finally be answered after much delay. The stress of this single event has been more than any final I ever took, more than any presentation I ever gave, or just about any other event I can recall from my past. Thanks to all of you who realize I do care, even though I don't often make the time to show it. I appreciate the cheering squad more than you know.
Relationships require work - some are easier and more fluid, and of course this all depends on your circumstances. Since I basically sucked at relationships before all of this craziness, I am surprised anyone has stuck with me, especially with my definite negligence. There are a few friends I have who do not have children and probably think I am just a whiny fool - and they would be right by the way - but as I hear stories of being single and dating issues or work issues - I feel that is a world so far away from my own right now. I sometimes get nostalgic. I remember purchasing my first new car, driving down 81 speeding with the moonroof open on a beautiful morning, with my makeup perfect and music blaring, no gray hairs BTW, and a cute outfit, on my way to my job, where I would then go to grad school after work and hang out with more smart people, grab a bite on the hill, and look forward to a weekend where I would be wined and dined by a cute guy. I become a tad wistful - and then I laugh remembering that I would be jealous of friends who already had families. Of course, no one I knew at the time had a child with special needs. Would I have still been jealous?
I want others to know: as much as I rant/complain/b*tch/etc., I am happy. I am probably not very balanced. I am teetering between out of control and merely stressed - so easily. Things are sort of pushed just shy of the limit - operating at 95% duty cycle, not quite 100%, but almost. Then something unusual happens that really isn't all that bad, or sometimes is all the bad, and now the system is requiring more than 100%, and that is where we run into trouble. Life is like operating on schedule all the time, with almost no slack
If you have no idea what I am talking about, think of it this way:
Scenario 1: you give yourself 25 minutes to get to an appointment that usually takes 15 minutes to get there. The trouble is, you get behind a school bus dropping off students every 100 feet, and then there is a police check on the on-ramp to the expressway. When you arrive at your location, all the spaces in the parking lot are filled. You park illegally praying not to get a ticket, and find out when you enter, that you have been misdirected and are at the wrong location. You run back to your car, which hasn't been towed or ticketed, thankfully, only to discover the car has a flat tire. You go to call the office where your appointment is to tell them you will be late, and realize your cell phone battery has died. You then realize you left your wallet at home. And then it begins to rain.
Scenario 2: Or you give yourself 15 mintues to get to your appt and all goes smoothly.
Its a crapshoot as to how life is going to be day to day. Time is the problem with most of our circumstance. Everything we do takes triple the time it used to prior to our intervention. We live a life of exceptions: special diets, therapists, doctors appointments, research, ailments.
I have always hated the term "sandwich generation" for some resason. I am not sure why. I think there is an implication that this phenomenon of taking care of multigenerational family members is a new one - although in my ethnic family background, it is very typical. I guess I am in that circumstance right now. I am taking care of wee little ones, and have an aging widowed mother to help out with. And both the wee ones and the elders have much going on: SPD, autism, lung cancer, COPD, asthma, and a hip replacement.
Have I ever mentioned that I am not a "foot" person. If you are like me, you know what I am talking about. Feet give me the heebie jeebies. All, except cute baby feet. Sophia's feet are beginning to lose that appeal now that they are a size 1.5 ( and she is only 5!) Alright, so I am cleaning up puke, poop, snot on a regular basis, right? I can do gross stuff with ease. But my new duty to my mother is to get her orthopedic socks on in the mornings. Yes, I have to deal with old people feet. Mom doesn't read the blog - and you all better not snitch on me, but I gotta tell you, this is not a fun task for me! But I do it.
It's hard to communicate to anyone that there are so many things you do in life you do not enjoy, you do not like, and you have to do them anyway. And all these things that you really don't want to do, but know you have to do, take time. And time is limited. These things you do take away time from things you would rather be doing - like hanging with friends. But what tends to happen to me, is after Zach is off to school, Sophia is put on the bus, the visit to Mom's to take care of things like putting orthopedic socks is done, then there is housework to do, phone calls to make, paperwork to file, etc. and then Sophia is off the bus, and it's time to get Zachy from school, and then a quick lunch, and on to therapy, and the doctors appointments, ballet, dinner, homework, baths, reading, passout, and begin to do it all over again the next day.
I know a lovely young lady pursuing her degree in medicine. She is bright and talented, but her endeavor still requires her to work, and work hard. When I had the opportunity to speak with her at Thanksgiving, I realized we probably had similar lifestyles. She said she knew med school would be tough, but she didn't realize how tough. She didn't get the chance to elaborate, but I felt I could probably figure out why. It's the commitment level - it's the never ending studying. No breaks. No time for socialization or partying anymore. When you are trying to achieve something, more often than not, you have to sacrifice other things that are important to you too.
I feel honored that I can help take care of my mother and my children. It gives me a peace of mind knowing we don't have to rely on strangers to do everything. I am sure a lot of people in my life think I just don't "make the time" to do things like take care of friends. They do end up getting the short end of the stick. I do care, I still love them. In fact, I miss them. I miss my family too. I don't see them much. However, right now, I am an Olympic athlete in training. The sport? Zachary autism triage.
The good news - things are happening with Zach. Things are sort of clicking with him. He is accepting more people in his life than he ever did before. He laughs with people, will even pursue engagement with people. He still perfers people he is more familiar with. So if you want to have a relationship with Zach, realize this, this is not about the occasional "quality time". I always felt the notion of quality vs. quantity time when it came to children was interesting. People who feel that structure, planned events with their children can make up for their lack of presence are being naive. You can't force moments to happen. But then again, old school thinking of not playing with your children but jsut being around, and letting them figure out things on their own is insufficient and somewhat negligent too. Just because you are nearby your child doesn't make you present. I think of all the times when I start to tune Sophia's never-ending ramblings out, and if I did that all the time, I would surely miss some of the best philosophy of the 21st century! Zach's autism has made the notion of quantity and quality extremely clear for us. If you are just around Zach, he will tolerate your presence, but if you want him to ever come up to you, look you in the eye, and try to engage you, that is going to take some regular commitment of purposeful playing with him. Just ask his teachers who came to the house during Thanksgiving break!
Tomorrow is a big day, as you may know. We meet with the school and the county. The $25,000 question will finally be answered after much delay. The stress of this single event has been more than any final I ever took, more than any presentation I ever gave, or just about any other event I can recall from my past. Thanks to all of you who realize I do care, even though I don't often make the time to show it. I appreciate the cheering squad more than you know.
Wednesday, November 25, 2009
Speek Softly and Carry a Big Stick
Speek Softly and Carry a Big Stick. Or in our case, say as little as necessary and let the team do their thing. IEP meeting time, you see. November 30. Gonna move Thanksgiving back a week in fact. Just kidding.
We have a lawyer this time, a recording device, an updated evaluation from an MD with a recommendation for increased therapy plus a 1:1, an updated evaluation relative to Zach's verbal ability which shows regression as compared to this summer, and a verbal agreement by the director of the ABA program at Zach's school to concur with the recommendation/request for Zach to receive additional hours at home. The director will be present at the meeting, and has indicated that she will speak to the data we will present, and has discussed her recommendation to the director of the school who said she will also be present at the meeting. According to the ABA director, both her and the school director are on board for the request. Also to be used, as needed, is the case that a fellow student of Zach's has just received approval for both the school program and home based services simultaneously, showing precedent of "double stacking" or providing a school program and itinerant services simultaneously.
The data we will present shows a regression. Actually, a huge regression. If you were wondering the reason for my silence a few weeks ago - that has a lot to do with it. Since putting Zach into the school, he has been less verbal. However, when I reviewed the recent report our in home therapist wrote up, and in particular the graph of his skills, I was nothing short of overwhelmed with how deep a regression this is. My sails deflated, I moved nowhere.
Do I still think the school program is the right option? Yes - if we get home services provided as well. Zach cannot be in the home all day receiving services - it doesn't work for him. He gets edgy and wants to leave, cries and tantrums. He can handle some home based services, but not 40 hours a week worth. 15 hours I believe would be OK. Plus, lets not forget trying to get the right cast of characters for a home based program. Yikes.
This is hard stuff. I pray that things go smoothly. I know I have right on my side. I know they have financial restrictions and a bad economy on theirs. The more now, the less later. I do believe. Good may prevail. I just have to keep my big trap shut.
We have a lawyer this time, a recording device, an updated evaluation from an MD with a recommendation for increased therapy plus a 1:1, an updated evaluation relative to Zach's verbal ability which shows regression as compared to this summer, and a verbal agreement by the director of the ABA program at Zach's school to concur with the recommendation/request for Zach to receive additional hours at home. The director will be present at the meeting, and has indicated that she will speak to the data we will present, and has discussed her recommendation to the director of the school who said she will also be present at the meeting. According to the ABA director, both her and the school director are on board for the request. Also to be used, as needed, is the case that a fellow student of Zach's has just received approval for both the school program and home based services simultaneously, showing precedent of "double stacking" or providing a school program and itinerant services simultaneously.
The data we will present shows a regression. Actually, a huge regression. If you were wondering the reason for my silence a few weeks ago - that has a lot to do with it. Since putting Zach into the school, he has been less verbal. However, when I reviewed the recent report our in home therapist wrote up, and in particular the graph of his skills, I was nothing short of overwhelmed with how deep a regression this is. My sails deflated, I moved nowhere.
Do I still think the school program is the right option? Yes - if we get home services provided as well. Zach cannot be in the home all day receiving services - it doesn't work for him. He gets edgy and wants to leave, cries and tantrums. He can handle some home based services, but not 40 hours a week worth. 15 hours I believe would be OK. Plus, lets not forget trying to get the right cast of characters for a home based program. Yikes.
This is hard stuff. I pray that things go smoothly. I know I have right on my side. I know they have financial restrictions and a bad economy on theirs. The more now, the less later. I do believe. Good may prevail. I just have to keep my big trap shut.
Sunday, November 22, 2009
Ruminations of Chuck E Cheese
We had our first ever visit to Chuck E Cheese's to help Sophia's friend celebrate her birthday.
Sophia and Zachary both appeared to have a decent time. Of course, this is two sensory kids going to a place that insults my not as sensitive senses, so I am not sure what this felt like to them. I can tell you this, at two hours into the festivities, they wanted out. No meltdowns, just out. Steve wanted out likely more than anyone.
A couple of observations about Chuck E Cheeses:
1) I now know where all those people that I see at the State Fair are in the off months.
2) The amount of serious cleavage and revealing clothing I saw (and found rather disturbing) rivaled that of the pick up joints I traversed in my wild younger college days. Are people actually looking to mate there?
Like almost everything in my life, I cannot go very far without meeting someone who I end up talking to who brings me back to a connection with autism. A woman was asking about getting together for a playdate, and I mentioned afternoons were busy because Zach had therapy, one thing after another, and she is good friends with the woman who began FEAT. We talked for almost an hour, making the CEC experience a lot easier to tolerate for me. She was incredibly sweet, someone I could see befriending.
I love it when I meet terrific people who are understanding and don't have any children on the spectrum. She knows what ABA is, what the GFCF diet is, what regressive autism is, the number of hours of therapy, the sensory issues. Guess that's what love does - she has a friend whom she loves and has had to watch go through the autism business, now she will likely forever be sensitive to others. Thanks be to God for people like this.
As for Chuck E Cheeses, Sophia said that's where she wants to have her next birthday, Daddy says he thinks not, and the proceeded to douse her with hand sanitizer. 3-4 day incubation period for most common viruses/germ based illnesses, so let's see how we are doing this Wednesday. Could be an interesting Thanksgiving.
Sophia and Zachary both appeared to have a decent time. Of course, this is two sensory kids going to a place that insults my not as sensitive senses, so I am not sure what this felt like to them. I can tell you this, at two hours into the festivities, they wanted out. No meltdowns, just out. Steve wanted out likely more than anyone.
A couple of observations about Chuck E Cheeses:
1) I now know where all those people that I see at the State Fair are in the off months.
2) The amount of serious cleavage and revealing clothing I saw (and found rather disturbing) rivaled that of the pick up joints I traversed in my wild younger college days. Are people actually looking to mate there?
Like almost everything in my life, I cannot go very far without meeting someone who I end up talking to who brings me back to a connection with autism. A woman was asking about getting together for a playdate, and I mentioned afternoons were busy because Zach had therapy, one thing after another, and she is good friends with the woman who began FEAT. We talked for almost an hour, making the CEC experience a lot easier to tolerate for me. She was incredibly sweet, someone I could see befriending.
I love it when I meet terrific people who are understanding and don't have any children on the spectrum. She knows what ABA is, what the GFCF diet is, what regressive autism is, the number of hours of therapy, the sensory issues. Guess that's what love does - she has a friend whom she loves and has had to watch go through the autism business, now she will likely forever be sensitive to others. Thanks be to God for people like this.
As for Chuck E Cheeses, Sophia said that's where she wants to have her next birthday, Daddy says he thinks not, and the proceeded to douse her with hand sanitizer. 3-4 day incubation period for most common viruses/germ based illnesses, so let's see how we are doing this Wednesday. Could be an interesting Thanksgiving.
Friday, November 20, 2009
RES (Red Ear Syndrome)
Go ahead, I dare you. Google red ear syndrome. Google red ear autism.
As I amused myself yesterday afternoon cleaning the you know what that I discussed in my previous post, I realized something that the teacher told me two days ago while picking up Zach from school:
After months of going through this we determined there was a correlation. He doesn't always puke when his ears are red, but there is a better than average chance when it happens. Since putting Zach on the GFCF (gluten free/casein free) diet, his puking went down from 3 times a week, to maybe once a month. Big change. Not annihilated, but a lot better, and a much welcomed difference. And the red ears - maybe 5 times in a years time.
Anybody around Zach before the GFCF days can tell you - the kid didn't vomit - he exploded. Every family member, several close friends, and even some not so close friends had the opportunity to witness this. I can recall July of 2008 being seated at a table close to the bride and groom at this lovely wedding of Steve's cousin. I remember thinking to myself "damn - why did they seat us here." We were seated with some lovely grandmother types, friends of the bride's grandma, and Mt. Zacharius erupted. The bride and groom came running over to see if all was OK. I was mortified. On a separate occasion, my childhood girlfriend came into town whom I hadn't seen in like 20 years, and sure enough Sir Barfs Alot did it again. There was no escaping the wrath of the Vomit Monster.
When my mother in law happened to notice Zach's red ears, I knew that Steve and I were not paranoid parents - there indeed was something unusual with the way his ears (almost always just one) would turn very red and even swell. I brought him in to the doctor - no ear infection.
I Googled and saw a strong number of parents having similar complaints. I spoke with other parents, and heard the same complaints. In this 1% community called those with autism, it doesn't always appear, but it certainly doesn't feel like it is a negligible percentage either.
You know what is hard about being an outlier - if you don't meet the set patterns the researchers and scientists have made their laws about, you don't mean anything meaningful.
Pediatricians, an allergist, and a gastrointerologist have given us nothing other than the standard: "the gluten free and casein free diet has never been proven to help kids on the spectrum." The allergist at least threw us a bone and told us that she had other clients who were using the GFCF diet and also indicated that it was helpful.
I am trying to figure out how they would study this diet with the appropriate statistical environment.
If you ask me if it is the gluten or the casein - I really can't tell you. It may be one, neither or both. I am hoping that we can one day get him off of it - it is tiresome somedays. But we are OK with it. Thank God for Wegmans, NaturTyme, and the manufacturer of all those products that help those with celiac's and other allergies. We are marking one year on the diet. A lifetime of it? I hope not. But if it helps, we will do what we need to do.
At some point, we will gluten challenge Zach. What makes his ear go red? I don't know. But I just don't by the "some kids just" business.
As I amused myself yesterday afternoon cleaning the you know what that I discussed in my previous post, I realized something that the teacher told me two days ago while picking up Zach from school:
Zach's ear was red today, but I noticed just the one ear was red.Damn damn damn. Of course he puked, his ear was red. He came into contact or ingested something. This is the stuff that drives me nuts. We used to tell the doctor about Zach's puking. "Some kids just puke" was the response. We told the doctor about the red ears: "nothing to be concerned about, it's just he way he is."
After months of going through this we determined there was a correlation. He doesn't always puke when his ears are red, but there is a better than average chance when it happens. Since putting Zach on the GFCF (gluten free/casein free) diet, his puking went down from 3 times a week, to maybe once a month. Big change. Not annihilated, but a lot better, and a much welcomed difference. And the red ears - maybe 5 times in a years time.
Anybody around Zach before the GFCF days can tell you - the kid didn't vomit - he exploded. Every family member, several close friends, and even some not so close friends had the opportunity to witness this. I can recall July of 2008 being seated at a table close to the bride and groom at this lovely wedding of Steve's cousin. I remember thinking to myself "damn - why did they seat us here." We were seated with some lovely grandmother types, friends of the bride's grandma, and Mt. Zacharius erupted. The bride and groom came running over to see if all was OK. I was mortified. On a separate occasion, my childhood girlfriend came into town whom I hadn't seen in like 20 years, and sure enough Sir Barfs Alot did it again. There was no escaping the wrath of the Vomit Monster.
When my mother in law happened to notice Zach's red ears, I knew that Steve and I were not paranoid parents - there indeed was something unusual with the way his ears (almost always just one) would turn very red and even swell. I brought him in to the doctor - no ear infection.
I Googled and saw a strong number of parents having similar complaints. I spoke with other parents, and heard the same complaints. In this 1% community called those with autism, it doesn't always appear, but it certainly doesn't feel like it is a negligible percentage either.
You know what is hard about being an outlier - if you don't meet the set patterns the researchers and scientists have made their laws about, you don't mean anything meaningful.
Pediatricians, an allergist, and a gastrointerologist have given us nothing other than the standard: "the gluten free and casein free diet has never been proven to help kids on the spectrum." The allergist at least threw us a bone and told us that she had other clients who were using the GFCF diet and also indicated that it was helpful.
I am trying to figure out how they would study this diet with the appropriate statistical environment.
If you ask me if it is the gluten or the casein - I really can't tell you. It may be one, neither or both. I am hoping that we can one day get him off of it - it is tiresome somedays. But we are OK with it. Thank God for Wegmans, NaturTyme, and the manufacturer of all those products that help those with celiac's and other allergies. We are marking one year on the diet. A lifetime of it? I hope not. But if it helps, we will do what we need to do.
At some point, we will gluten challenge Zach. What makes his ear go red? I don't know. But I just don't by the "some kids just" business.
Why Autism Stinks... Literally
OK - so here is a difference between kids who are typical vs. those with autsim:
Zach threw up yesterday.
In the living room.
On the nice new wool rug and glass coffee table.
He told not a soul.
I found it today all dried and hard and impossible to clean.
Yuck yuck yuck yuck yuck yuck yuck yuck yuck yuck yuck yuck yuck yuck yuck yuck yuck.
Have you ever tried to clean dried up barf before on your lovely slightly delicate formal living room decor?
Zach likely came in where I was right after doing it. A kid with typical communication and social skills would have told me "I barfed" or "puke" or at least "I don't feel good". Zach likely jumped around like a little Tigger and asked "chips" or "tings" immediately afterward. No warning, no notification.
As I was cleaning (or attempting to clean) the mess, Sophia came in the room and announced that "the troublemaker is now Mr. Stinky Pants". By age 3 we had Sophia potty trained. When can we expect this for Zach?
Zach threw up yesterday.
In the living room.
On the nice new wool rug and glass coffee table.
He told not a soul.
I found it today all dried and hard and impossible to clean.
Yuck yuck yuck yuck yuck yuck yuck yuck yuck yuck yuck yuck yuck yuck yuck yuck yuck.
Have you ever tried to clean dried up barf before on your lovely slightly delicate formal living room decor?
Zach likely came in where I was right after doing it. A kid with typical communication and social skills would have told me "I barfed" or "puke" or at least "I don't feel good". Zach likely jumped around like a little Tigger and asked "chips" or "tings" immediately afterward. No warning, no notification.
As I was cleaning (or attempting to clean) the mess, Sophia came in the room and announced that "the troublemaker is now Mr. Stinky Pants". By age 3 we had Sophia potty trained. When can we expect this for Zach?
Wednesday, November 18, 2009
Brain: The Body's Ocean
We love NASA in this country, don't we? We love the thrill of space, the daring astronauts risking their lives, the occasional astronaut donning a diaper, the scientific discovery of super glue and Tang, OK neither one really were invented at NASA, and the antiquated space mobile aka the "Shuttle" that is about as reliable as a 1986 Plymouth Reliant with 197,000 miles on it. We love exploration I guess. And what is more fantastic than not leaving our own gravitational pull and entering the depths of the ocean?
Anybody old enough to remember Jaques Cousteau? Whatever happened to these adventures? He was a household name for heaven's sakes. Anyhow, I hate deep water. It freaks me out. However, I love to be near and in the ocean. The ocean is a very compelling area of the Earth. It covers so much of it, we have only seen so much of it, and it contains mysteries and history. The irony of the ocean is that it is largely unexplored although totally exploited. We have overfished the waters and dumped pollutants in it. I realized only recently that the human brain is much like the ocean waters. We know it's important, however, we don't really understand it, have likely only scratched the surface in researching it, and abuse the snot out of it.
Zach went to the neurologist the after conducting a sleep deprived EEG a few weeks ago. I have yet to write about it because it let me with nothing, well flabbergasted and hopeful and questioning at the same time, for a sum total of nothing.
Leanne's Overly Simplistic Science Nugget of the Day; An EEG, or electroencephalogram, is a test that monitors electrical activity and patterns on the brain. These patterns can indicate seizures/eplipelspy, brain tumors, even infection or injury, although MRIs are more typically used in the latter. Can it measure intelligence though??
We have not seen the actual EEG results or the write up. Last time we were able to see what two doctors besides our doctor interpreted on the EEG. The two doctors stated that there was a spike in the frontal lobe that looked anomalous, but that they did not believe it to be epilepsy. Our doctor said she could tell where they might interpret that from, but that she doesn't believe it was anything extraordinary that warranted any attention. My take: I have a kid who has a disorder that affects roughly 1% of the population, and I have a kid that has something noteworthy by two physicians to warrant a remark although not a condition or dx. Are the two somehow related? Is there something to investigate? I think like much of other parts of our world of autism, if we were to pursue this we would have to think about that once we get further information, what would we do with it? The fact is, there is no rulebook for kids on the spectrum and neurological brain activity, as measured by the EEG. Since there are no defined or accepted characteristics of autism and brain activity, there will be no treatment options. After our first visit, the doctor told us he was fine and likely a little math genius, not to worry. She also recommended a second EEG since two give a more accurate portrayal of what is going on, so that is why we scheduled the second.
What did the doctor say to us this go around? He has an EEG pattern of an older child. She actually stated he likely had a high IQ - closer to that of a six year old. Where did she get this from? She states the maturity of the wave patterns. She then remarked: "You don't have him in some intensive program do you?" Insinuating that it is unnecessary. Mind you, this is a woman with a PhD and an MD from prestigious Ivy League schools and a stint at the Mayo Clinic, leading me to believe she has an IQ much higher than my own. But does that mean she really knows what she is talking about, especially in regards to my beautiful son?
Off I went, into the wild wild west of published papers on the topic of intelligence, IQ, brain wave acitivity, and EEGs to find these recent studies:
These were nice to read - but there was a lot of research on the topic and even though individual researchers made conclusions about this (some say yeah and some say nay BTW) there doesn't appear to be any overarching body declaring these findings.
I would love to believe that Zachy is really intelligent - don't we all want to think that about our kids? However, so what's up when it comes to him not talking and communicating? Right now when I talk to Zach, I feel like we are on a Charlie Brown special where the teacher is going "wa wa wa" (sound of muted trumpet I believe.) He knows a few words (sort of like when Buddy was around, he heard "ride", "treat", "Buddy", "no" and everything else is just noise. What good is all this hidden intelligence?
Nobody "knows" - from what I can gather, the brain is too unique to each individual for them to make the assertions they can about our other organs. The brain is still such an unknown part of the human body still needing much more exploration.
So what the heck am I supposed to do with that information? I am not sure what my gut is telling me anymore. At the time I wanted to slug the doctor and hug her at the same time. Confused? You bet. I guess my instincts tell me to feel hope that he will be functional, keep the therapy up, keep the supplements/diet up, give school a chance, fight for more services, and most importantly play often, smile even more, and love endlessly.
Anybody old enough to remember Jaques Cousteau? Whatever happened to these adventures? He was a household name for heaven's sakes. Anyhow, I hate deep water. It freaks me out. However, I love to be near and in the ocean. The ocean is a very compelling area of the Earth. It covers so much of it, we have only seen so much of it, and it contains mysteries and history. The irony of the ocean is that it is largely unexplored although totally exploited. We have overfished the waters and dumped pollutants in it. I realized only recently that the human brain is much like the ocean waters. We know it's important, however, we don't really understand it, have likely only scratched the surface in researching it, and abuse the snot out of it.Zach went to the neurologist the after conducting a sleep deprived EEG a few weeks ago. I have yet to write about it because it let me with nothing, well flabbergasted and hopeful and questioning at the same time, for a sum total of nothing.
Leanne's Overly Simplistic Science Nugget of the Day; An EEG, or electroencephalogram, is a test that monitors electrical activity and patterns on the brain. These patterns can indicate seizures/eplipelspy, brain tumors, even infection or injury, although MRIs are more typically used in the latter. Can it measure intelligence though??
We have not seen the actual EEG results or the write up. Last time we were able to see what two doctors besides our doctor interpreted on the EEG. The two doctors stated that there was a spike in the frontal lobe that looked anomalous, but that they did not believe it to be epilepsy. Our doctor said she could tell where they might interpret that from, but that she doesn't believe it was anything extraordinary that warranted any attention. My take: I have a kid who has a disorder that affects roughly 1% of the population, and I have a kid that has something noteworthy by two physicians to warrant a remark although not a condition or dx. Are the two somehow related? Is there something to investigate? I think like much of other parts of our world of autism, if we were to pursue this we would have to think about that once we get further information, what would we do with it? The fact is, there is no rulebook for kids on the spectrum and neurological brain activity, as measured by the EEG. Since there are no defined or accepted characteristics of autism and brain activity, there will be no treatment options. After our first visit, the doctor told us he was fine and likely a little math genius, not to worry. She also recommended a second EEG since two give a more accurate portrayal of what is going on, so that is why we scheduled the second.
What did the doctor say to us this go around? He has an EEG pattern of an older child. She actually stated he likely had a high IQ - closer to that of a six year old. Where did she get this from? She states the maturity of the wave patterns. She then remarked: "You don't have him in some intensive program do you?" Insinuating that it is unnecessary. Mind you, this is a woman with a PhD and an MD from prestigious Ivy League schools and a stint at the Mayo Clinic, leading me to believe she has an IQ much higher than my own. But does that mean she really knows what she is talking about, especially in regards to my beautiful son?
Off I went, into the wild wild west of published papers on the topic of intelligence, IQ, brain wave acitivity, and EEGs to find these recent studies:
- Research published in Clinical Neurophysiology in 2005 concluded that neural efficiency and increased brain complexity is positively related to intelligence.
- Other research also had some similar findings, one article entitled "Intelligence and neural efficiency: The influence of task content and sex on the brain–IQ relationship" had similar findings in both 2001 and further research conducted in 2005.
These were nice to read - but there was a lot of research on the topic and even though individual researchers made conclusions about this (some say yeah and some say nay BTW) there doesn't appear to be any overarching body declaring these findings.
I would love to believe that Zachy is really intelligent - don't we all want to think that about our kids? However, so what's up when it comes to him not talking and communicating? Right now when I talk to Zach, I feel like we are on a Charlie Brown special where the teacher is going "wa wa wa" (sound of muted trumpet I believe.) He knows a few words (sort of like when Buddy was around, he heard "ride", "treat", "Buddy", "no" and everything else is just noise. What good is all this hidden intelligence?
Nobody "knows" - from what I can gather, the brain is too unique to each individual for them to make the assertions they can about our other organs. The brain is still such an unknown part of the human body still needing much more exploration.
So what the heck am I supposed to do with that information? I am not sure what my gut is telling me anymore. At the time I wanted to slug the doctor and hug her at the same time. Confused? You bet. I guess my instincts tell me to feel hope that he will be functional, keep the therapy up, keep the supplements/diet up, give school a chance, fight for more services, and most importantly play often, smile even more, and love endlessly.
Monday, November 16, 2009
I don't want to be normal.
While perusing YouTube for ABA clips and the latest AutismSpeaks video that created some controversy, I found some interesting clips of a young woman who claims to have high functioning autism. After watching the first video I thought she might be part of a hoax.
I loved her interesting inflection, tone of voice, her lisp, word choice. I was intrigued. I loved the obvious editing. Her refusal to say grapheme color synesthesia made me laugh. I happen to know someone who has this condition - which I find so fascinating myself. After watching this video, I was still concerned that someone may be playing a cruel joke.
And then I saw Whitney's second video. One look at the bird on her head and I knew this was likely no hoax. LOL She rocked throughout the video and had to take frequent breaks to look away from the camera (something that was pretty compelling to me alone since she didn't just merely move her eyes, but made body movement to look away). It had so many terrific lines in it, amongst them my favorites included:
Many people have always teased me about my word choice. I tend to use a mix of the vernacular (hip phrases to make me appear modern) with not often used word choices that as one friend told me "seem like I am trying to be British or something." I guarantee you that this has never been on purpose. Some of my language I think is derived from my mother and perhaps because of the nearly 40 year difference between her and I, I have unusual although appropriate word choices. For instance, instead of saying "that is great" my inclination is to say "that is wonderful" or instead of saying "he is a nice guy" I might say "he is a nice fellow" or even worse "he is an affable fellow". Let's not even get into the rubbish vs. garbage thing! :) My mom is a walking dictionary - quite good at crossword puzzles (which I am most certainly not) and likely has a distinct vocabulary.
I do not do this on purpose. Besides Madonna, who does? However, I think it does lend itself to having some people make fun of me, and some people comment on how "well spoken" I am. Uhh, OK.
Another item I have noticed - I am terrible with my friendships. Not many people come rushing up to me on facebook I tell you. First off, the perceived "I'm not listening" thing probably doesn't get me very far in this area. Furthermore, I have very bad instincts when it comes to what another person wants me to do. I have difficulty initiating any contact with people, e.g. I am petrified to call anyone on the phone. I am usually one of the last people to leave parties or get togethers, and guess that I tend to overstay my welcome. I am good at the eye contact thing. However, when I make an effort to understand all that is being said to me, I would guess that some find me staring because I tend to overly concentrate on what they are saying to me in order to really get it. In the end, I care about other people very much (in fact my mother always said I was too sensitive), but likely am not meeting their needs of feeling heard and understanding their needs, so a lot of people likely just stay away. It's too complicated to be my friend. Indeed when I look at those who I would call true friends in my life, I would have to say they are an exceptional bunch who have stuck with me and my social shortcomings. They call me, check in with me, and realize that even though I may not do the same with them always, it isn't because I don't care, I am just a freak.
The last line I quoted above is the one I currently find most compelling.
I don't have that in my own life right now. I want that. Most importantly, I want that for my children above all else. And I want to make this point vehemently clear. One day, Zach may read these vignettes I have written about life, and our experiences with autism. I never want him to feel that we do not love him with every bone in our body, just as he is, autism and all. I never want him to feel that he was a burden, because he most certainly is not. He is a joy in my life, that I would be so miserable without. Had I known that he was autistic while in the womb, I may have contemplated what that meant, however, I will never regret having him. He has brought new meaning to my life. He is teaching me much about myself and about love, and life itself. He has helped me not take life and it's simplistic gifts for granted. He is a perfect little boy who I want to be happy and proud.
I once worried what all of the huabaloo in our lives would mean to Sophie - so much attention and time devoted to little brother could be vexing to such a young psyche. I don't worry as much now. I realize that one day she, too, will also realize so much more about life because of her little brother. I hope she will realize her gifts in this world and learn how to use them in unconventional ways. I pray that she will not become yet another cog in the wheel of society, merely getting through the day to earn another paycheck. (BTW - I am all about financial security and don't take that for granted.) I hope that she will understand the imperative of serving others who are different than herself, not unfortunate, just different, helping them to find their path in this world, whether it be her life's work or through small gestures.
I may not be the most normal person, even though I would like to be moreso. But I would have to guess that wanting my child's happiness is very normal, so maybe I am OK anyhow.
I loved her interesting inflection, tone of voice, her lisp, word choice. I was intrigued. I loved the obvious editing. Her refusal to say grapheme color synesthesia made me laugh. I happen to know someone who has this condition - which I find so fascinating myself. After watching this video, I was still concerned that someone may be playing a cruel joke.
And then I saw Whitney's second video. One look at the bird on her head and I knew this was likely no hoax. LOL She rocked throughout the video and had to take frequent breaks to look away from the camera (something that was pretty compelling to me alone since she didn't just merely move her eyes, but made body movement to look away). It had so many terrific lines in it, amongst them my favorites included:
"I enjoy having an obscene thirst for knowledge. "Of course, when I read these things I am drawn to them because of my same sentiments. I realize, although I am not autistic, that there are elements in my personality that are very parallel to this disorder. I am very socially interested in people, yet can be very awkward. I love love love learning although am only a marginal student. I realized recently that I have been told throughout my life that "You need to listen". I bought book after book about this. I thought I had a reading comprehension problem. Then, in the last year after learning so much from my children, I realized that I may have a more overarching problem with perceptive language. I am not always good at deciphering metaphors, and can recall hating high school English because of the constant need to analyze the symbolism in stories. After realizing that it was going to be the only way to survive those classes, I would pick something randomly int he story and come up with a grandiose story of what it symbolize in the universe. I would receive praise for my unique thinking, get my god grade, and feel like a complete phony since it all felt so contrived to me. It just wasn't in my nature.
"I love having time to research any topic that happens to strike my mind."
"I really don't have friends....I don't want a whole bunch of friends. That is too much work... I actually find it very draining to be in a social situation with more than four people."
"I thoroughly enjoy being autistic."
"To me it is a difference in perception"
"I am proud of who I am... I am perfectly happy the way I am."
Many people have always teased me about my word choice. I tend to use a mix of the vernacular (hip phrases to make me appear modern) with not often used word choices that as one friend told me "seem like I am trying to be British or something." I guarantee you that this has never been on purpose. Some of my language I think is derived from my mother and perhaps because of the nearly 40 year difference between her and I, I have unusual although appropriate word choices. For instance, instead of saying "that is great" my inclination is to say "that is wonderful" or instead of saying "he is a nice guy" I might say "he is a nice fellow" or even worse "he is an affable fellow". Let's not even get into the rubbish vs. garbage thing! :) My mom is a walking dictionary - quite good at crossword puzzles (which I am most certainly not) and likely has a distinct vocabulary.
I do not do this on purpose. Besides Madonna, who does? However, I think it does lend itself to having some people make fun of me, and some people comment on how "well spoken" I am. Uhh, OK.
Another item I have noticed - I am terrible with my friendships. Not many people come rushing up to me on facebook I tell you. First off, the perceived "I'm not listening" thing probably doesn't get me very far in this area. Furthermore, I have very bad instincts when it comes to what another person wants me to do. I have difficulty initiating any contact with people, e.g. I am petrified to call anyone on the phone. I am usually one of the last people to leave parties or get togethers, and guess that I tend to overstay my welcome. I am good at the eye contact thing. However, when I make an effort to understand all that is being said to me, I would guess that some find me staring because I tend to overly concentrate on what they are saying to me in order to really get it. In the end, I care about other people very much (in fact my mother always said I was too sensitive), but likely am not meeting their needs of feeling heard and understanding their needs, so a lot of people likely just stay away. It's too complicated to be my friend. Indeed when I look at those who I would call true friends in my life, I would have to say they are an exceptional bunch who have stuck with me and my social shortcomings. They call me, check in with me, and realize that even though I may not do the same with them always, it isn't because I don't care, I am just a freak.
The last line I quoted above is the one I currently find most compelling.
"I am proud of who I am... I am perfectly happy the way I am."
I don't have that in my own life right now. I want that. Most importantly, I want that for my children above all else. And I want to make this point vehemently clear. One day, Zach may read these vignettes I have written about life, and our experiences with autism. I never want him to feel that we do not love him with every bone in our body, just as he is, autism and all. I never want him to feel that he was a burden, because he most certainly is not. He is a joy in my life, that I would be so miserable without. Had I known that he was autistic while in the womb, I may have contemplated what that meant, however, I will never regret having him. He has brought new meaning to my life. He is teaching me much about myself and about love, and life itself. He has helped me not take life and it's simplistic gifts for granted. He is a perfect little boy who I want to be happy and proud.
I once worried what all of the huabaloo in our lives would mean to Sophie - so much attention and time devoted to little brother could be vexing to such a young psyche. I don't worry as much now. I realize that one day she, too, will also realize so much more about life because of her little brother. I hope she will realize her gifts in this world and learn how to use them in unconventional ways. I pray that she will not become yet another cog in the wheel of society, merely getting through the day to earn another paycheck. (BTW - I am all about financial security and don't take that for granted.) I hope that she will understand the imperative of serving others who are different than herself, not unfortunate, just different, helping them to find their path in this world, whether it be her life's work or through small gestures.
I may not be the most normal person, even though I would like to be moreso. But I would have to guess that wanting my child's happiness is very normal, so maybe I am OK anyhow.
Saturday, November 14, 2009
Things I Don't Write About and Silence
There are things I don't write about. I have begun to wonder why. Some of it is my self censoring - I don't want to write about things that even though I experience them/think about them/ feel them, they would be extremely offensive or upsetting to many. Some things are too personal and only between me and the individual and not meant for public consumption. Then, there are the things I am just embarrassed about that I cannot bring myself to disclose them.
In the end, I do try to give as honest a description as I can render up. I haven't been running in 2 months. Yep. Embarrassed about that one. I am likely in depression, trying to avoid pharmacological answers to this one, but struggling. Not exactly proud of this one either. Our marital difficulties - well, they are more than I ever could have imagined coming from the two of us. Two people put in the worse experience of their lives together doesn't always produce the tight bonding moments Hollywood would have us believe. Will we come through this? I think we have to - but is sure is hard. We are both exhausted and unlike the exhaustion we used to have of just being parents to young children, this exhaustion has a mystery. You never really know what is going to happen to your kids or what their future might be, but with typical kids you can take certain things for granted: walking, talking, eating, toilet training, getting dressed on their own, learning to ride a bike, going to school, playing sports, making friends etc. What of these steps of development will occur with Zach "naturally" and what will require specific teaching methods? What can he accomplish at all?
After reading an article recently, I realized how scary the future can be. Say we get Zach talking, even going to school with minimal services, but not quite fully functioning - what is his future then? From what I am reading, most support services for adults are offered for those with IQ's below 70. There is a pretty significant group of kids who fall in the middle here - neither retarded and eligible for services/support nor are they fully recovered/functioning. What happens here? I read the story of a child who has an IQ of 170 - however, when someone approached them and introduced themselves to him, he turned to his dad and said "What am I supposed to say?" This is a kid who would beat the pants off of most everyone on just about every standardized academic test there is. Will he be able to function in the workforce where so much of the world is based on social skills and not just talent/abilities?
Whenever I get into a place where there are hard decisions to be made, I usually procrastinate and avoid people which usually ends up leading me to a sine (270) or a negative phase of my being: depression. Here I am, lingering. At some point an epiphany of sorts usually appears that everything becomes clear, and I go forward. Where is my epiphany? I am stuck out of phase with life.
The big issue plaguing me: Is Zach making progress that we are comfortable with? Answer: No.
Do we go back to a home based program? Do we add home services to the school program? Do we move to Rochester for better services? What about my Mom if we do? Is the ABA not right? Is it the service providers? What about the homeopath we saw - do we start down this path?
More biomed? Am I messing him up when I work with him at home? Uh... yes. Learned that lesson this past week.
Zach now wants to say "ting" every time he wants something from me whether it be milk, to be picked up, a food item - they are all "tings". What is a "ting" - ahh... think of a cheetoh minus the cheese. He loves these and they are very "reinforcing" for him. The developers of his current programs had decided to use them as one of the objects he requests (or using the Skinner language "mands") since they are so reinforcing to him. This was the only edible object on the list of 5 requests we make Zach say before providing the item/action. The other words on his request list are: squeeze, jump, train, and up (as in pick me up).
When Zach was home with what I believe may have been H1N1, I attempted to work with him. Out of all the words on his list, currently, the ones he finds really reinforcing at home are "up" and "ting". Indeed, when he was ill, there was no way to get him to squeeze, jump or train. Well, I think I may have overdone it on the "ting" because now he is overgeneralizing the use of the word - in other words - everytime he wants something from me, he seems to say "ting". They aren't seeing it as much in school, which makes me think that I am the royal screw up in this mess.
The overgeneralizing is likely caused by me not varying his requesting words enough. *sigh*
In the past month I have been told the following:
One day at a time, right? It doesn't work out that way when you are being told by some of the experts that every day counts at his age. You need to push, but not so hard that things break. Not so hard, that you cannot handle it. I hate the fact that this makes me weaknesses and failures so apparent. I hate the fact that my weaknesses and failures can be a huge detriment to my children.
He is happy. We have fun. I feel lost. Is this what life will be like for awhile?
Off to get Mom's orthopedic socks on and wash her hair. The life of luxury I tell you.
In the end, I do try to give as honest a description as I can render up. I haven't been running in 2 months. Yep. Embarrassed about that one. I am likely in depression, trying to avoid pharmacological answers to this one, but struggling. Not exactly proud of this one either. Our marital difficulties - well, they are more than I ever could have imagined coming from the two of us. Two people put in the worse experience of their lives together doesn't always produce the tight bonding moments Hollywood would have us believe. Will we come through this? I think we have to - but is sure is hard. We are both exhausted and unlike the exhaustion we used to have of just being parents to young children, this exhaustion has a mystery. You never really know what is going to happen to your kids or what their future might be, but with typical kids you can take certain things for granted: walking, talking, eating, toilet training, getting dressed on their own, learning to ride a bike, going to school, playing sports, making friends etc. What of these steps of development will occur with Zach "naturally" and what will require specific teaching methods? What can he accomplish at all?
After reading an article recently, I realized how scary the future can be. Say we get Zach talking, even going to school with minimal services, but not quite fully functioning - what is his future then? From what I am reading, most support services for adults are offered for those with IQ's below 70. There is a pretty significant group of kids who fall in the middle here - neither retarded and eligible for services/support nor are they fully recovered/functioning. What happens here? I read the story of a child who has an IQ of 170 - however, when someone approached them and introduced themselves to him, he turned to his dad and said "What am I supposed to say?" This is a kid who would beat the pants off of most everyone on just about every standardized academic test there is. Will he be able to function in the workforce where so much of the world is based on social skills and not just talent/abilities?
Whenever I get into a place where there are hard decisions to be made, I usually procrastinate and avoid people which usually ends up leading me to a sine (270) or a negative phase of my being: depression. Here I am, lingering. At some point an epiphany of sorts usually appears that everything becomes clear, and I go forward. Where is my epiphany? I am stuck out of phase with life.
The big issue plaguing me: Is Zach making progress that we are comfortable with? Answer: No.
Do we go back to a home based program? Do we add home services to the school program? Do we move to Rochester for better services? What about my Mom if we do? Is the ABA not right? Is it the service providers? What about the homeopath we saw - do we start down this path?
More biomed? Am I messing him up when I work with him at home? Uh... yes. Learned that lesson this past week.
Zach now wants to say "ting" every time he wants something from me whether it be milk, to be picked up, a food item - they are all "tings". What is a "ting" - ahh... think of a cheetoh minus the cheese. He loves these and they are very "reinforcing" for him. The developers of his current programs had decided to use them as one of the objects he requests (or using the Skinner language "mands") since they are so reinforcing to him. This was the only edible object on the list of 5 requests we make Zach say before providing the item/action. The other words on his request list are: squeeze, jump, train, and up (as in pick me up).
When Zach was home with what I believe may have been H1N1, I attempted to work with him. Out of all the words on his list, currently, the ones he finds really reinforcing at home are "up" and "ting". Indeed, when he was ill, there was no way to get him to squeeze, jump or train. Well, I think I may have overdone it on the "ting" because now he is overgeneralizing the use of the word - in other words - everytime he wants something from me, he seems to say "ting". They aren't seeing it as much in school, which makes me think that I am the royal screw up in this mess.
The overgeneralizing is likely caused by me not varying his requesting words enough. *sigh*
In the past month I have been told the following:
- DAN ! protocols don't work (diet, supplements, meds)
- He is high IQ - that of a 6 year old, do not put him in a intensive program.
- His program is not intensive and individualized enough.
- He doesn't need a special diet - he needs to address his physical symptoms homeopathically.
- He has "vaccinosis" and needs a treatment that will likely cause skin eruptions (boils).
- You need to find time for yourself.
- Zach needs more targeted and specific attention from you and your husband.
- You need to get a private program going for Zach.
- You should go back to work.
- You should do more advocacy work - you are good at it.
One day at a time, right? It doesn't work out that way when you are being told by some of the experts that every day counts at his age. You need to push, but not so hard that things break. Not so hard, that you cannot handle it. I hate the fact that this makes me weaknesses and failures so apparent. I hate the fact that my weaknesses and failures can be a huge detriment to my children.
He is happy. We have fun. I feel lost. Is this what life will be like for awhile?
Off to get Mom's orthopedic socks on and wash her hair. The life of luxury I tell you.
Saturday, November 7, 2009
And it goes on.....
This kids are OK. However, Zach's cough has changed and increased. He is coughing a bit more than before - although no fever. It is no longer that weird barking cough, but instead a "have something dripping down the back of my throat" cough. His eyes have a slight dark discoloration under them which leads me to believe this is something sinus/nasal. He is not eating well and in fact has thrown up a few times a day or two ago after gagging on what I believe is stuff running down his throat. Poor little guy. He wavers between happy/compliant/engaging to cranky/wining/wanting to be held. I am so glad that when he is not feeling well, he does not push me away. However, with this blessing, there is also the curse of not being able to attend to other tasks - including cooking and cleaning let alone any me time. Steve has been out of town until today so things have fallen apart a bit.
In the 6 days that have passed where Zach was not in school, I let him just lie around if he appeared really tired. But when he was more affable, I took advantage of the opportunity to work with him on the programs in his curriculum plus a few things we do at home. Right now, his overall curriculum is pretty basic. The director at his preschool has slimmed down the initial programs she developed for him, after observing that he didn't seem to respond as anticipated based on the profile the EI team passed on to them.
We noticed that some skills had regressed of his, and that he was saying less since in the school program. This is when we asked the school district to provide some additional hours in his home environment. We felt that the intensity and individualization has been substantially toned down since entering the preschool only program and that by adding in some 1:1 time at home, he would have all his requirements met. He has benefited from school program, we have seen an increase in his social interactions and transitions (response to change). He has shown his teachers a lot of affection which I know means he likes it. A November 16th meeting will help to seal the fate of if the school district/county will provide this for us. The way it works is at this meeting, the school district will decide if he needs it and the county will be there to represent their interests which is basically financial - they are the one who foots the bill. As of Friday last week, we now have legal representation to help us through the process. I am hoping that this guidance will make all the difference.
I am typing this as I stay up listening to my sweetie cough in his sleep. Will my sleep overcome my worry and allow me a few hours tonight?
In the 6 days that have passed where Zach was not in school, I let him just lie around if he appeared really tired. But when he was more affable, I took advantage of the opportunity to work with him on the programs in his curriculum plus a few things we do at home. Right now, his overall curriculum is pretty basic. The director at his preschool has slimmed down the initial programs she developed for him, after observing that he didn't seem to respond as anticipated based on the profile the EI team passed on to them.
We noticed that some skills had regressed of his, and that he was saying less since in the school program. This is when we asked the school district to provide some additional hours in his home environment. We felt that the intensity and individualization has been substantially toned down since entering the preschool only program and that by adding in some 1:1 time at home, he would have all his requirements met. He has benefited from school program, we have seen an increase in his social interactions and transitions (response to change). He has shown his teachers a lot of affection which I know means he likes it. A November 16th meeting will help to seal the fate of if the school district/county will provide this for us. The way it works is at this meeting, the school district will decide if he needs it and the county will be there to represent their interests which is basically financial - they are the one who foots the bill. As of Friday last week, we now have legal representation to help us through the process. I am hoping that this guidance will make all the difference.
I am typing this as I stay up listening to my sweetie cough in his sleep. Will my sleep overcome my worry and allow me a few hours tonight?
Thursday, November 5, 2009
I got my Tigger back
Boy was yesterday sad. Zach didn't drink, he didn't eat, he didn't move. He was so lethargic. His fever got as high as 102.7. He refused medication - and made a mess in the process of his refusal. No playing today - just a lot of cuddling. As previously noted, when the kids get sick, Zach always gets hit harder than Sophie.
I am not sure if I mentioned Zach's most prominent stim lately. First of all, for those of you who aren't aware I'll give a brief description of stim. A stim is a "self stimulatory behavior" that is commonly seen amongst children with sensory issues, autism and other neurological disorders. Many kids with autism either rock back and forth or hand flap. They say that these behaviors "feel good" to the children and are meeting some sensory input the kids need. Zach used to shudder his arms, then he occasionally has a weird facial tick, but the most prominent of them all (at least for the last 6 months) has been jumping up and down, quite like Tigger. We have a trampoline which he will use, and he loves any bed, but the plain ol' floor will suffice too. I never thought I would say this - but I am so glad to see my little Tigger again. A day of listlessness, no eating, no drinking, fever, and vomiting, and no way to communicate to Zach what is going on, or have him explain how he feels; not fun.
No fever for Sophie for two days, so back to school she went. Zach had no fever this morning. If he follows Sophie's pattern, it will be back tomorrow. I really wish I knew if this was swine or not. The doctor's office didn't want to see him or have him tested, so I just don't know. The barking cough the kids had was a very distinct and common symptom that some of the local people I know who tested positive for H1N1 had. Hopefully it was swine, and it's is done and over with in the Morphet household.
Hope all area healthy elsewhere.
I am not sure if I mentioned Zach's most prominent stim lately. First of all, for those of you who aren't aware I'll give a brief description of stim. A stim is a "self stimulatory behavior" that is commonly seen amongst children with sensory issues, autism and other neurological disorders. Many kids with autism either rock back and forth or hand flap. They say that these behaviors "feel good" to the children and are meeting some sensory input the kids need. Zach used to shudder his arms, then he occasionally has a weird facial tick, but the most prominent of them all (at least for the last 6 months) has been jumping up and down, quite like Tigger. We have a trampoline which he will use, and he loves any bed, but the plain ol' floor will suffice too. I never thought I would say this - but I am so glad to see my little Tigger again. A day of listlessness, no eating, no drinking, fever, and vomiting, and no way to communicate to Zach what is going on, or have him explain how he feels; not fun.
No fever for Sophie for two days, so back to school she went. Zach had no fever this morning. If he follows Sophie's pattern, it will be back tomorrow. I really wish I knew if this was swine or not. The doctor's office didn't want to see him or have him tested, so I just don't know. The barking cough the kids had was a very distinct and common symptom that some of the local people I know who tested positive for H1N1 had. Hopefully it was swine, and it's is done and over with in the Morphet household.
Hope all area healthy elsewhere.
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