So here we are facing a new year.
Today the paperwork and official diagnostic evaluation was delivered to Early Intervention EI(service and program coordinators), Zach's pediatrician, and the central New York Developmental Disabilities Service Office CNYDDSO.
In the fax to the EI coordinators - we requested an immediate re-evaluation of Zach's current capabilities and to immediately address the recommendation for Yale for ABA type services. To the pediatrician, we hand delivered the report with strict order not to pass the dx to the developmental pediatrician, because I want an independent diagnosis. And to the CNYDDSO, I requested to be briefed on all program and resources Zach is eligible for, and am hoping to find out if we are eligible for a Medicare waiver. I am still learning what all of these things mean. So here we go. Welcome to 2009!
Anyhow, a few people have asked what they can do to help. I have let some people know that we have a wish list on amazon.com with books that we would like. Feel free to peruse and use the list as a resource if you are just interested in creating your own library. I am hoping to blog and give my review of each of the books I have read thus far. Maybe sometime in February?
Well, that is it for now. Time to go hug the kids and ring in the New Year.
Wednesday, December 31, 2008
Sunday, December 28, 2008
The Christmas Miracle
We had the blessings of spending Christmas with our family - well most of them, those who didn't have the flu.
Uncle Mark (the new uncle Mark Steve's brother vs. the old uncle Mark Cathy's husband) couldn't make it in from New Hampshire due to illness. Jackie, Justin and Robbie J. all had the flue too. Wagilia just wasn't the same.
It will certainly be a memorable Christmas. Zach sort of opened a few of his presents. Sophie eagerly helped him open up most of his - and almost took a squatters position of ownership once she did open. Indeed, we didn't have the Christmas that we hoped for, but it was nice nonetheless. There weren't a ton of presents for the kids from Steve or I, we tried to go out and find things, but just a few choices were all that we made. I want my children to appreciate Christmas for more than presents so I sort of liked the simpler way. However, I know that we were missing a certain joy that comes with finding a really great toy for your child that you know they will go nuts for. I was envious of my siblings who got Wii's for their families knowing how much fun they would have as a family with such a great toy - and their kids are all grown up for the most part.
But our families really came through and took up some of the slack for getting the kids neat stuff that they seem to enjoy. Thank you so much!
Steve and I have been pretty consumed with reading the report from Yale andseeing the written words of Zach's diagnosis. It has much more of an impact than I imagined. It confirms the reality - its indisuptable now. I guess I was still hoping for someone to say - "no, he's fine, you are just overreacting." No such luck. Like I said before - how many times in your life would you hope for someone to call you a neurotic mother?
Aunt Cindy will be sorely mssed when she returns to Colorado. I noticed a particular attachment Sophia seems to have for her. Two kindered spirits?
Well, not all of our presents to Sophie are a bust. Sophie has been enchanted with the movie Madeline, so much that she has finall
y declared that when she grows up, she wants to be a nun. Whoa. First of all - Sophie never wants to grow up! Remember the 3 things? Or maybe I forgot to post them. Well Sophie has declared on a few occasions that there are "3 things" which I presume she means to be 3 truths in life to strive for - "1- I don't want to grow up. 2 - I don't want to die. And 3 - I don't want hair on my dupa." I can relate. Aunt Cindy declared that the Pope is likely quivering in his Prada shoes over the possibility. I told Sophie it was most admirable. With her preschool obsession of Nolan, we will just have to see what truly wins out in the end, a celibate life of working for the Lord, or her interest in hyperactive and cute Asian men .Christmas Eve was spend with family at my sister's house. We have decided, for a number of years now, that for Cathy's birthday on the 24th of December, we will allow her to host a party for 25 or so of us in her honor at really muss up her house. She seems to do it with a smile so we will let her continue.
Christmas Day some family came to our house. It was a crazy day for me - Steve and I seemed to be operating in some sort of fog. But dinner came out pretty well. People ate and appeared somewhat merry. We couldn't get Natalie's petite amie to sing for us, but that's OK. The kids were busy doing their thing. And then came the evening. As everyone was preparing their exits, my dear niece Melissa went chasing Zach. I had no idea why. Then as she got her coat on to leave she told me. "Zach just said 'I love you'." She said that as she was getting ready to depart she told Sophie she loved her, and Zach then said to her "I love you." She chased him into the living room to see if she could get him to say it again by telling him "I love you" and sure enough he did it for her again. My sister-in-law Cindy confirmed.
One of my goals for Christmas was to get Zach to say "ho ho ho" when asked what Santa says. This was not fulfilled. But I never get what I want when I want it. God almost always throws me a curve ball when he does throw me a ball. I wasn't there to hear it, and haven't been able to get him to say it for me, but my son told someone he loved them. I don't care if it's echolalia or gustalt, he knew that when someone you love tells you that, you should say it back. If that aint a Christmas miracle, than I don't know what is.
Additional pictures at my picasa public site.
Thursday, December 25, 2008
The Report has arrived
We went to Mass on Christmas Eve and arrived home to find a FedEx box with the report from Yale on the doorstep. What a Christmas present.
It's 14 pages, some of it regurgitation of information we provided for them, but in a report form. The other describes the results of the evaluation which consisted of the following procedures: Mullen Scales of Early Learning, The Vineland Adaptive Behavior Scales, Expanded Edition, and The Autism Diagnostic Observation Schedule Module 1 (ADOS-G).
Zach's motor skills and language skills are significantly delayed. According to the Mullen Procedure, his motor skills are operating at around a 20-month old level (Zach is 27 months) but may appear more delayed than his ability. Zach does not imitate much, thus he didn't attempt several of the tasks presented to him. The Vineland procedure indicated less of a delay, having Zach operating at a 23-month old. I feel that these areas will eventually flourish for him.
Zach's language skills area another story. According to the Mullen Procedure, his receptive language (what he understands of what is spoken to him) is operating at around an 8-month old level. His expressive, slightly better, at 15-months. The Vineland procedure indicated more of a delay, with his receptive once again at an 8-month level, and his expressive language at a 9-month level.
Zach's social behavioral asesesment, using the ADOS-G, seemed to emphasize some of his issues such as lack of eye contact, and of course language. But it also showed some very positive traits that Zach has - namely that he can be redirected and engaged. The report said that his performance during this part of the evaluation indicated that "Zach is ready to learn language and basic rules of social communicative exchanges...". My favorite part of the report is, of course, the description of my beautiful son as a"delightful little boy". And he is! What a blessing that is, and I appreciate it every day I have it, especially after reading stories of those with ASD children who display violent behaviors to others, and themselves.
The other notable in the report, is his tensing of his arms. This tensing usually consists of Zach stretching out of his arms, fanning his fingers, and shuddering. Sometimes a facial tensing also occurs. These behaviors do not appear linked to any particular activity, sometimes they occur with no obivious outside stressors. This is why we will be seeing a neurologist in a few weeks.
The recommendations are basically an intervention program for a child with an ASD - as opposed to a child with some basic delays. This includes speech language therapy (SLT), occupational therapy (OT), educational therapy, adaptive skills training, and social skills training with typical peers. 15-20 hours overall.
The report also listed resources, 13 to be exact to be used by those working with Zach. We currently have a few of them. I will likely list these at some point for others to puruse.
So there you have it. The report is here. We have something official, we are no longer neurotic parents, we have a path to follown and more importantly, we have a path we that those professionals who can help us make a difference can go down. Right now I am saying a prayer that it will lead us to the land of independence and happiness.
It's 14 pages, some of it regurgitation of information we provided for them, but in a report form. The other describes the results of the evaluation which consisted of the following procedures: Mullen Scales of Early Learning, The Vineland Adaptive Behavior Scales, Expanded Edition, and The Autism Diagnostic Observation Schedule Module 1 (ADOS-G).
Zach's motor skills and language skills are significantly delayed. According to the Mullen Procedure, his motor skills are operating at around a 20-month old level (Zach is 27 months) but may appear more delayed than his ability. Zach does not imitate much, thus he didn't attempt several of the tasks presented to him. The Vineland procedure indicated less of a delay, having Zach operating at a 23-month old. I feel that these areas will eventually flourish for him.
Zach's language skills area another story. According to the Mullen Procedure, his receptive language (what he understands of what is spoken to him) is operating at around an 8-month old level. His expressive, slightly better, at 15-months. The Vineland procedure indicated more of a delay, with his receptive once again at an 8-month level, and his expressive language at a 9-month level.
Zach's social behavioral asesesment, using the ADOS-G, seemed to emphasize some of his issues such as lack of eye contact, and of course language. But it also showed some very positive traits that Zach has - namely that he can be redirected and engaged. The report said that his performance during this part of the evaluation indicated that "Zach is ready to learn language and basic rules of social communicative exchanges...". My favorite part of the report is, of course, the description of my beautiful son as a"delightful little boy". And he is! What a blessing that is, and I appreciate it every day I have it, especially after reading stories of those with ASD children who display violent behaviors to others, and themselves.
The other notable in the report, is his tensing of his arms. This tensing usually consists of Zach stretching out of his arms, fanning his fingers, and shuddering. Sometimes a facial tensing also occurs. These behaviors do not appear linked to any particular activity, sometimes they occur with no obivious outside stressors. This is why we will be seeing a neurologist in a few weeks.
The recommendations are basically an intervention program for a child with an ASD - as opposed to a child with some basic delays. This includes speech language therapy (SLT), occupational therapy (OT), educational therapy, adaptive skills training, and social skills training with typical peers. 15-20 hours overall.
The report also listed resources, 13 to be exact to be used by those working with Zach. We currently have a few of them. I will likely list these at some point for others to puruse.
So there you have it. The report is here. We have something official, we are no longer neurotic parents, we have a path to follown and more importantly, we have a path we that those professionals who can help us make a difference can go down. Right now I am saying a prayer that it will lead us to the land of independence and happiness.
Wednesday, December 24, 2008
Merry Christmas!
So, yesterday we received a copy of the 100 day kit from Autism Speaks, an autism advocacy organization . Much of the information, we were already aware of. However, I still recommend for those with a new diagnosis to get a copy as a primer on what to do with a new diagnosis. Its a concise and easy read that offers suggestions and a road map for getting started with treatment. Also a good resource to photo copy out of when you want to relay information to loved ones who would like to help.
While at work, Zach played on the computer with his Babcia Morphet and Aunt Cindy who came into town for the holidays. Apparently, the screen saver came on the computer at some point, and Zach said to his Babcia "Oh -look at that." Cool cool cool.
Zach quickly adjusted to having his Grandma added into the house, and his Aunt Cindy too. We are just really sad that Uncle Mark won't be able to join us for Christmas - he was sick and unable to make the 7 hour drive. This has Sophie sad since she was excited about having her "new" Uncle Mark around to play with.
Today I contacted the Central New York Developmental Disabilities Services Office for an intake for services for Zach. I am not even sure what this is going to get him, but we will find out.
The problem right now is that everyone wants to see the evaluation report from Yale. I am guessing that we won't be receiving it until after the new year. Uugghh.
It appears that a diagnosis (or dx as I may refer to it) is so critical to getting him services.
We will get it. Push push push.
Very excited about Christmas and all the joy my children will have with their new presents and family parties. May everyone out there have a very
Merry Christmas!
While at work, Zach played on the computer with his Babcia Morphet and Aunt Cindy who came into town for the holidays. Apparently, the screen saver came on the computer at some point, and Zach said to his Babcia "Oh -look at that." Cool cool cool.
Zach quickly adjusted to having his Grandma added into the house, and his Aunt Cindy too. We are just really sad that Uncle Mark won't be able to join us for Christmas - he was sick and unable to make the 7 hour drive. This has Sophie sad since she was excited about having her "new" Uncle Mark around to play with.
Today I contacted the Central New York Developmental Disabilities Services Office for an intake for services for Zach. I am not even sure what this is going to get him, but we will find out.
The problem right now is that everyone wants to see the evaluation report from Yale. I am guessing that we won't be receiving it until after the new year. Uugghh.
It appears that a diagnosis (or dx as I may refer to it) is so critical to getting him services.
We will get it. Push push push.
Very excited about Christmas and all the joy my children will have with their new presents and family parties. May everyone out there have a very
Merry Christmas!
Monday, December 22, 2008
Day one without him, can I get a bone?
Wow. Life seems so surreal lately. I kept on looking for him all day long. When I went to go get the mail, I began to call to Buddy like I usually do as he loved to run outside in the snow as I walked down the driveway. He did this just Saturday.
Steve and I discussed what's next. We both agreed - no pets for awhile. Steve is pretty wounded by this, too. What a kidney punch after all the other punches we've been taking lately. Nothing to kill us, just enough to make sure we really feel it.
We discussed our childhood pets, and Steve recalled that 2 years after his dog Shep passed, his folks came home with Rusty. He could still recall being angry at them, as he felt that there could be no replacement for Shep. This is why I love Steve, and why we belong together. Once we allow another soul to enter our heart, it can never be replaced, but there is always room to add more. So one day, there will be another dog, I am sure. He won't be Buddy. He won't mean the same to us, but he will be loved nonetheless. Someday.
Telling Sophie brought out a side of Steve I have never seen. Sophie didn't seem too upset though, unless you call asking if this meant she could have a kitty now as a means of dealing with her pain. Still, I know she is still processing it. She told her teacher at her Christmas party today, so obviously it triggered something. What does a four year old understand of these things - what do I understand of these things?
-----------------------------------
Zach's class was cancelled today. Speech therapy and OT went so-so. However, he has begun what I believe to be some imitation. During his Saturday class at MyGym, he mimicked putting an item on his head and then "sneezing" (saying "achoo") and letting the item fall off as they do routinely iin circle time. Then, Sophie and I had a pom-pom fight, and he joined in throwing the puff balls around. Yeah yeah. Way to go Zach.
I believe he also accidentally let out an "up" when reaching for me in an effort to get me to pick him up. I have been working on this one what feels like forever. It wasn't repeated, but he did it without prompting - so I am pretty sure it is in there. Come on Zach - give me the Christmas present I desperately want.
Still no report from Yale. Steve called today. Apparently, the professor who did the evaluation was out of town. It might not be here until after the New Year. This is not what I expected or was told, and I am dissappointed. I really need to read what is in that darned report. In the meantime, I am reading "More Than Words" and another book that came last week: "Do Watch Listen Say" .
We are trying to get Zach setup for a school called Jowonio for the fall. Everybody with experience with kids with special needs is telling us this is the place to be for him. Well, 200 other people on the waiting list seem to think it is where their kids need to be, too. uugghh. I am just asking the guy upstairs to throw me a bone on this one.
Sunday, December 21, 2008
Farewell my little boy
His name was Teddy - but everybody referred to him as Buddy, so sooner or later he became Buddy officially. He saw me through bad boyfriends, my father's death, my marriage, my master's degree, the birth of my two children. In fact, when in labor with Sophie, Steve slept, but Buddy stayed by my side as I timed my contractions. He asked for nothing but some love once in a while. We loved him immensely, because he did the same.
No more fences, no more leashes, no more pain my little boy. Say hello to Morgan and Rusty. I know they'll love having you there. We will miss you so much. Goobye.
Saturday, December 20, 2008
Wow, things really stink
So it's five days before Christmas, and I have noticed that Buddy has been sleeping more than usual these past few weeks. Well, then this last week I noticed his breathing has been quite rapid. We were supposed to bring him to the vet yesterday, but alas, the winter storm kept us from doing much of anything.
Today, while I took Zach to his class, Steve took Buddy to the vet. Buddy has the tumor the size of a grapefruit on his spleen. They are not sure if it is cancer or a large blood mass. But either way, he will not survive. They didn't give us a prognosis - but made mention that depending on what he has (the cancer or the blood mass) he likely has weeks to months.
Despite this, he was acting pretty normal. Until this evening. He insisted on going with us to Church (no we left him in the car...) and all seemed OK. Then we arrived home and he refused to eat his dinner. After we ate ours, I took him into the family room to cuddle. After 20 minutes, he got up off the couch and jumped to the floor. He walked around a bit and then he collapsed. We were able to get him up to the mud room where he is now. He won't take the pain pills that the vet gave to us.
So now Steve and I are standing watch over him. He has been a terrific family member and I don't want to see him suffer. I let him know that it's OK and that he can leave me now, that he doesn't have to take care of me anymore. Steve will take care of us now and keep us safe. I love Buddy very much; more like a child than a pet. He has seen me through some really tough times, and taught me not to be selfish. He has done his job.
I ask that God take him in as painless way as possible.
What an absolute tough Christmas this is turning out to be.
We have a lovely home, two great jobs, food on the table - so many things to be grateful for. But when the people (and pets) you love are in distress, none of that other seems to matter. I would gladly live in a shack with the basic necessities if I could have those I love not have to go through all this.
Today, while I took Zach to his class, Steve took Buddy to the vet. Buddy has the tumor the size of a grapefruit on his spleen. They are not sure if it is cancer or a large blood mass. But either way, he will not survive. They didn't give us a prognosis - but made mention that depending on what he has (the cancer or the blood mass) he likely has weeks to months.
Despite this, he was acting pretty normal. Until this evening. He insisted on going with us to Church (no we left him in the car...) and all seemed OK. Then we arrived home and he refused to eat his dinner. After we ate ours, I took him into the family room to cuddle. After 20 minutes, he got up off the couch and jumped to the floor. He walked around a bit and then he collapsed. We were able to get him up to the mud room where he is now. He won't take the pain pills that the vet gave to us.
So now Steve and I are standing watch over him. He has been a terrific family member and I don't want to see him suffer. I let him know that it's OK and that he can leave me now, that he doesn't have to take care of me anymore. Steve will take care of us now and keep us safe. I love Buddy very much; more like a child than a pet. He has seen me through some really tough times, and taught me not to be selfish. He has done his job.
I ask that God take him in as painless way as possible.
What an absolute tough Christmas this is turning out to be.
We have a lovely home, two great jobs, food on the table - so many things to be grateful for. But when the people (and pets) you love are in distress, none of that other seems to matter. I would gladly live in a shack with the basic necessities if I could have those I love not have to go through all this.
Thursday, December 18, 2008
Still waiting
So Babcia (Grandma) M. is back in town and staying with us for the holidays. It is very likely we will once again hold her hostage and help us through the next month or so as we traverse the path of getting the services Zach requires with his new diagnosis.
And that brings us to the report. It should arrive either today or tomorrow. I am dreading reading it, yet am in great anticipation of receiving it. The report contains the findings from Zach's evaluation at Yale. It should be an approximate 30 page report that includes details of his evaluation, their findings, and their recommendations for treatments.
Some of these items we already have begun to work on, as we were briefed while still in Connecticut. One thing we have taken initiative on is getting Zach into a pediatric neurologist to check out his arm tensing (most likely a self stimulatory behavior that many autistic kids have also referred to as a "stim") to determine if this is seizure activity. A study that I read recently has indicated that when there is regression in normal development, as was the case with Zach, their is a higher risk for epilepsy.
Another area we have scheduled Zach for is an ABR or auditory brainstem response hearing test. Since they were not able to 100% confirm that Zach had no hearing loss back in July using the normal sound booth testing, the folks at Yale recommended this. This ABR test, however, requires sedation, and has me feeling uneasy.
Recent research has shown that children with autism spectrum disorder process sounds slightly slower than other children, which may be linked to listening and language issues of children with an ASD. I don't believe that we will be able to get that detailed information from this particular test. But this is interesting, nonetheless. I would love to know why he does not respond to his name - something that can be so very frustrating to me. Will I ever know?
When is that report going to get here!
And that brings us to the report. It should arrive either today or tomorrow. I am dreading reading it, yet am in great anticipation of receiving it. The report contains the findings from Zach's evaluation at Yale. It should be an approximate 30 page report that includes details of his evaluation, their findings, and their recommendations for treatments.
Some of these items we already have begun to work on, as we were briefed while still in Connecticut. One thing we have taken initiative on is getting Zach into a pediatric neurologist to check out his arm tensing (most likely a self stimulatory behavior that many autistic kids have also referred to as a "stim") to determine if this is seizure activity. A study that I read recently has indicated that when there is regression in normal development, as was the case with Zach, their is a higher risk for epilepsy.
Another area we have scheduled Zach for is an ABR or auditory brainstem response hearing test. Since they were not able to 100% confirm that Zach had no hearing loss back in July using the normal sound booth testing, the folks at Yale recommended this. This ABR test, however, requires sedation, and has me feeling uneasy.
Recent research has shown that children with autism spectrum disorder process sounds slightly slower than other children, which may be linked to listening and language issues of children with an ASD. I don't believe that we will be able to get that detailed information from this particular test. But this is interesting, nonetheless. I would love to know why he does not respond to his name - something that can be so very frustrating to me. Will I ever know?
When is that report going to get here!
Wednesday, December 17, 2008
Rumsfeld
So, many people have tried to show their support of us and we appreciate it greatly. More often than not, people have done what we asked from them, and not dropped us out of their normal world as the people with "all the problems" and "the weird kids".
Sometimes people try and be too understanding. They try and show that they understand what we are going through even though we know darn well that they haven't a clue. For those with children, have you ever had a person who doesn't have children explain to you how to handle your children? People without children make the best parents.
Having a kid with special needs is like that. If you don't have one, you don't get it. Those who thought that their child might have had autism do not understand what it is like to have a child who actually has autism. The fear of the possibility and the horror of actually having it be reality are two different things.
I can recall when I first realized that my fears were no longer unfounded. I would wake up every morning feeling pretty good, and thinking it was just a nightmare. Then as I would get some sense about me, this weight would drop on my chest, and I would realize that it was not a bad dream after all, it was my life.
The hardest parts now are the unknowns. Autism can manifest itself in so many different ways. I like to call it the "snowflake" disorder - because no two kids seem to be identical. This is one of the subtle nuances of the disorder that, I find, make it more difficult. No one knows any child's fate, but it feels like their are even more unknown unknowns with a child with autism. Can research and medicine advance fast enough in his lifetime to effect great possibilities for him?
Zach is only two. I don't think you can get a handle on the personalities and possibilities of any two year old. Surely, Sophie has surprised me with her interests and abilities when I look back on who I thought she was at the tender age of 2. Zach smiles and seems bright. But what things are bubbling in that mind of his that I haven't seen yet? The great unknown.
The Unknown
As we know,
There are known knowns.
There are things we know we know.
We also know
There are known unknowns.
That is to say
We know there are some things
We do not know.
But there are also unknown unknowns,
The ones we don't know
We don't know.
—Donald Rumsfeld, Feb. 12, 2002, Department of Defense news briefing
Sometimes people try and be too understanding. They try and show that they understand what we are going through even though we know darn well that they haven't a clue. For those with children, have you ever had a person who doesn't have children explain to you how to handle your children? People without children make the best parents.
Having a kid with special needs is like that. If you don't have one, you don't get it. Those who thought that their child might have had autism do not understand what it is like to have a child who actually has autism. The fear of the possibility and the horror of actually having it be reality are two different things.
I can recall when I first realized that my fears were no longer unfounded. I would wake up every morning feeling pretty good, and thinking it was just a nightmare. Then as I would get some sense about me, this weight would drop on my chest, and I would realize that it was not a bad dream after all, it was my life.
The hardest parts now are the unknowns. Autism can manifest itself in so many different ways. I like to call it the "snowflake" disorder - because no two kids seem to be identical. This is one of the subtle nuances of the disorder that, I find, make it more difficult. No one knows any child's fate, but it feels like their are even more unknown unknowns with a child with autism. Can research and medicine advance fast enough in his lifetime to effect great possibilities for him?
Zach is only two. I don't think you can get a handle on the personalities and possibilities of any two year old. Surely, Sophie has surprised me with her interests and abilities when I look back on who I thought she was at the tender age of 2. Zach smiles and seems bright. But what things are bubbling in that mind of his that I haven't seen yet? The great unknown.
The Unknown
As we know,
There are known knowns.
There are things we know we know.
We also know
There are known unknowns.
That is to say
We know there are some things
We do not know.
But there are also unknown unknowns,
The ones we don't know
We don't know.
—Donald Rumsfeld, Feb. 12, 2002, Department of Defense news briefing
Tuesday, December 16, 2008
I just received the book, "More Than Words" by Fern Sussman. It was recommended by the folks at Yale, our SLP, and a few books and websites we researched. Prior to going to Yale, I had already looked into purchasing the book.
Its basis is to help parents promote communication and social skills in children with ASD. Only through page 18 so far. They recommend to read the book in its entirety first, which I plan to do. Thumbing through the book, I notice it gives lots of practical suggestions and explains the underlying concepts along with the pragmatics.
But can I get Zach to say "ho ho ho" by Christmas?
Its basis is to help parents promote communication and social skills in children with ASD. Only through page 18 so far. They recommend to read the book in its entirety first, which I plan to do. Thumbing through the book, I notice it gives lots of practical suggestions and explains the underlying concepts along with the pragmatics.
But can I get Zach to say "ho ho ho" by Christmas?
Monday, December 15, 2008
The apple of my eye...
Roughly 4 weeks ago, Zach started to put the "pop" in Pop Goes the Weasel when I sing it to him. He consistently has done this - and loves doing it - even with an audience. This makes Momma so-o-o happy. Especially since he consistently does it. This is a big deal folks.
Then he saw a picture of the Sesame Street sign and said "Elmo". I then grabbed a picture of Elmo - and he said "Elmo" then too. Whoa! Spontaneous labeling AND consistency.
A few evenings ago, he told Steve to "wake up" when Steve was pretending to sleep. We weren't sure at first, but then he repeated it again, when Steve pretended to go back to sleep. WHOA!
I think it is so cool when he says phrases, but Steve has reminded me that he really isn't saying sentences, as explained to us at Yale. The term is called gestalt language and means a phrase is learned in its entirety as one concept without comprehending the individual words. Thus, my working with him to say "up" when he would like me to lift him into my arms is still not there yet. However, I still appreciate his achievement; spontaneous, consistent, socially appropriate language and not just a noun or a label!
Zach's SLP canceled for today. So today after dropping Sophia at her preschool, we took a trip to Wegman's (one of the great things about living in upstate NY) to go shopping. We brought our returnable cans and Zach loved putting them in the machine to be crunched. He really seems to be where he should be with his motor skills - I hope that stays the same.
As we walked in the store - a table filled with well polished apples was nearly straight ahead. Zach began repeating "apple", "apple", "apple" louder and louder. I quickly grabbed one, ran into the women's room, washed it, and zipped back out and gave it to him with tears in my eyes. My mother-in-law was there to witness the whole event. I kept on repeating to myself, "I will not cry in Wegmans, I will not cry in Wegmans". Never heard him say apple before. And he wanted one. Can more words get added to make such requests?
His occupational therapist came and no real language came out - although last week when he first met her, and she played a game of knocking, he said "Who's there?". Who is there? Who is my little boy? Can I get him to say more to find out? I can see so much in him without speech - there can only be more. I can't wait to find out.
Then he saw a picture of the Sesame Street sign and said "Elmo". I then grabbed a picture of Elmo - and he said "Elmo" then too. Whoa! Spontaneous labeling AND consistency.
A few evenings ago, he told Steve to "wake up" when Steve was pretending to sleep. We weren't sure at first, but then he repeated it again, when Steve pretended to go back to sleep. WHOA!
I think it is so cool when he says phrases, but Steve has reminded me that he really isn't saying sentences, as explained to us at Yale. The term is called gestalt language and means a phrase is learned in its entirety as one concept without comprehending the individual words. Thus, my working with him to say "up" when he would like me to lift him into my arms is still not there yet. However, I still appreciate his achievement; spontaneous, consistent, socially appropriate language and not just a noun or a label!
Zach's SLP canceled for today. So today after dropping Sophia at her preschool, we took a trip to Wegman's (one of the great things about living in upstate NY) to go shopping. We brought our returnable cans and Zach loved putting them in the machine to be crunched. He really seems to be where he should be with his motor skills - I hope that stays the same.
As we walked in the store - a table filled with well polished apples was nearly straight ahead. Zach began repeating "apple", "apple", "apple" louder and louder. I quickly grabbed one, ran into the women's room, washed it, and zipped back out and gave it to him with tears in my eyes. My mother-in-law was there to witness the whole event. I kept on repeating to myself, "I will not cry in Wegmans, I will not cry in Wegmans". Never heard him say apple before. And he wanted one. Can more words get added to make such requests?
His occupational therapist came and no real language came out - although last week when he first met her, and she played a game of knocking, he said "Who's there?". Who is there? Who is my little boy? Can I get him to say more to find out? I can see so much in him without speech - there can only be more. I can't wait to find out.
Thursday, December 11, 2008
Never when I am around.
So I heard my son did things today in his therapy that I cannot believe. Here are some excerpts from our speech language pathologist (SLP):
"He engaged well and let me re-direct him several times. He also produced some spontaneous words to label (ie; pig, car, choo choo, bubbles, in) and imitated several more words. :) :) :)
He also said 'bye' unprompted and with a smile. Eye contact was sporadic but enough so that he was able to stay with me.
His session was the highlight of my morning! "
We needed that after all the disappointments we have had to face. Now to get this ball rolling a little faster.
"He engaged well and let me re-direct him several times. He also produced some spontaneous words to label (ie; pig, car, choo choo, bubbles, in) and imitated several more words. :) :) :)
He also said 'bye' unprompted and with a smile. Eye contact was sporadic but enough so that he was able to stay with me.
His session was the highlight of my morning! "
We needed that after all the disappointments we have had to face. Now to get this ball rolling a little faster.
Tuesday, December 9, 2008
Pavlov's dog and the mutts in the insurance industry
So one of the key recommendations that came out of our visit to Yale was treatment options. There are several forms of therapies out there that have shown to be effective on various levels. There are traditional therapies such as speech, occupational therapy, physical therapy, and special education. My estimation is that these treat symptoms of ASD (autism spectrum disorders) but not the autism itself. Kids on the spectrum frequently have issues in one or more of those areas - Zach has definite issues with speech which was the impetus that lead us down this path in the first place.
Other therapies more specific to ASD include TEACHH, Floortime/DIR, and ABA. I know - acronym city. I'll probably get a post in here that is all acronyms at some point. Anyhow, ABA which stands for applied behavior analysis is what Yale recommended for Zach. " Applied behavior analysis (ABA) interventions focus on teaching tasks one-on-one using the behaviorist principles of stimulus, response and reward,and on reliable measurement and objective evaluation of observed behavior." (plag'ed from Wikipedia) . I have read about all of these therapies and the plethora of others. ABA certainly appeared to make the most sense for Zach based on his current needs, and also happened to have the most scientific evidence to back up its efficacy. Their recommendation made sense and we will start down a path to getting him this therapy.
The folks at Yale went and researched the Syracuse area for ABA therapists for us, which was much appreciated. They came across the SU Parent Project at Syracuse University and we have begun an initial contact with them to see what they can offer us. We also contacted our Earlty Intervention service coordinator through the county to see what was available through the various agencies. The service coordinator didn't think that we would be able to get covered the amount of services that the folks at Yale recommended via Early Intervention. We anticipated this. And thus began our unpleasantries with our health insurance administrators.
Steve had contacted our HR department regarding getting a copy of our policy to see what was covered. We were told that we didn't have the policy that Excellus Blue Bross Blue Shield held it. Our company is "self insured". Don't let that term delude you into thinking they can tell us what is covered though. They told us to contact BCBS directly. I did that. I was told that asking to see if ABA was covered wouldn't be sufficient- they required a 5 digit procedure code (not to be confused with a diagnosis code). OK. So I google to see what is out there in terms of codes that people have used for ABA and I call BCBS again with my list of codes. After a a little research, I was told that coverage "depends" on this "other" policy. They give me access to the policy. I read it. It makes things about as clear as mud. *sigh*
So, Steve decides to once again employ the services of our HR benefits rep. That evening, Steve was unusually quiet. I thought that something the kids had done had set him off. He refused to talk to me about what was plaguing him. As bedtime approached, he finally was calm enough to disclose that our HR rep said that there would be no coverage. He was so distraught, and I totally understood why. I had to remind him that this is how the "real world" of insurance works - if you asked them, they probably would tell you a flu shot was not covered - that doesn't mean that it really isn't, you just have to find out the right way of asking. We would find a way. We will take care of this one way or another. We began to consult a family member for a child advocacy lawyer in our area just in case. I really don't want to go there.
Can you imagine what it feels like to be told a diagnosis by one of the world's recognized researchers (she is helping to write the next revision of the DSM) in developmental disorders that your child has an ASD, that he requires 25 hours of this sort of ABA therapy, that time is of the essence - and then have a bunch of people who are able to help your precious child get this treatment seem to give you nothing but bad news or roadblocks or shrugs?
BCBS covers ABA therapy in Minnesota. (Huh?) I can barely handle the winters in central NY - we are not about to move there. Another odd fact, the Department of Health of New York State recognizes and recommends this therapy as a treatment for ASD. Hmmm. What will we do? More research of course.
Let's hope the good folks at Early Intervention are going to be able to help us out. $80, 000 a year is just a little salty for us.
This all leads me to a a deeper understanding of the gifts we have been given: We are by no means rich, nor are we the smartest people in the world (although Steve is pretty damn smart if you ask me) but what do people do who don't have the resources we have to deal with these situations? I must say a prayer for them. I ask that everyone who reads this do the same.
Other therapies more specific to ASD include TEACHH, Floortime/DIR, and ABA. I know - acronym city. I'll probably get a post in here that is all acronyms at some point. Anyhow, ABA which stands for applied behavior analysis is what Yale recommended for Zach. " Applied behavior analysis (ABA) interventions focus on teaching tasks one-on-one using the behaviorist principles of stimulus, response and reward,and on reliable measurement and objective evaluation of observed behavior." (plag'ed from Wikipedia) . I have read about all of these therapies and the plethora of others. ABA certainly appeared to make the most sense for Zach based on his current needs, and also happened to have the most scientific evidence to back up its efficacy. Their recommendation made sense and we will start down a path to getting him this therapy.
The folks at Yale went and researched the Syracuse area for ABA therapists for us, which was much appreciated. They came across the SU Parent Project at Syracuse University and we have begun an initial contact with them to see what they can offer us. We also contacted our Earlty Intervention service coordinator through the county to see what was available through the various agencies. The service coordinator didn't think that we would be able to get covered the amount of services that the folks at Yale recommended via Early Intervention. We anticipated this. And thus began our unpleasantries with our health insurance administrators.
Steve had contacted our HR department regarding getting a copy of our policy to see what was covered. We were told that we didn't have the policy that Excellus Blue Bross Blue Shield held it. Our company is "self insured". Don't let that term delude you into thinking they can tell us what is covered though. They told us to contact BCBS directly. I did that. I was told that asking to see if ABA was covered wouldn't be sufficient- they required a 5 digit procedure code (not to be confused with a diagnosis code). OK. So I google to see what is out there in terms of codes that people have used for ABA and I call BCBS again with my list of codes. After a a little research, I was told that coverage "depends" on this "other" policy. They give me access to the policy. I read it. It makes things about as clear as mud. *sigh*
So, Steve decides to once again employ the services of our HR benefits rep. That evening, Steve was unusually quiet. I thought that something the kids had done had set him off. He refused to talk to me about what was plaguing him. As bedtime approached, he finally was calm enough to disclose that our HR rep said that there would be no coverage. He was so distraught, and I totally understood why. I had to remind him that this is how the "real world" of insurance works - if you asked them, they probably would tell you a flu shot was not covered - that doesn't mean that it really isn't, you just have to find out the right way of asking. We would find a way. We will take care of this one way or another. We began to consult a family member for a child advocacy lawyer in our area just in case. I really don't want to go there.
Can you imagine what it feels like to be told a diagnosis by one of the world's recognized researchers (she is helping to write the next revision of the DSM) in developmental disorders that your child has an ASD, that he requires 25 hours of this sort of ABA therapy, that time is of the essence - and then have a bunch of people who are able to help your precious child get this treatment seem to give you nothing but bad news or roadblocks or shrugs?
BCBS covers ABA therapy in Minnesota. (Huh?) I can barely handle the winters in central NY - we are not about to move there. Another odd fact, the Department of Health of New York State recognizes and recommends this therapy as a treatment for ASD. Hmmm. What will we do? More research of course.
Let's hope the good folks at Early Intervention are going to be able to help us out. $80, 000 a year is just a little salty for us.
This all leads me to a a deeper understanding of the gifts we have been given: We are by no means rich, nor are we the smartest people in the world (although Steve is pretty damn smart if you ask me) but what do people do who don't have the resources we have to deal with these situations? I must say a prayer for them. I ask that everyone who reads this do the same.
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