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....
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