Beware: this may gross you out a bit.
Zach has had GI issues since he was 10 months old. Basically, his GI issues consisted of totally out of the blue, without warning, full barfing of all that was eaten within the last 12 hours. These puking incidents averaged twice a week for well over a year. I wrote down the food he was eating to see if there was a correlation between what he ate an his barfing. There was no obvious correlation - he drank milk, ate cheese and yogurt every day - but he only barfed on average, twice a week. Didn't have an obivious milk correlation. The pediatrician told me that some kids were just barfers. Anyone who witnessed one of Zach's barfing episodes knew these were pretty tremendous. He literally erupted. I never accepted the fact that some kids just barfed and had begun researching getting him in to a pediatric GI.
My mother-in-law pointed out that Zach's ears were very red sometimes. Sometimes it was just one ear - on the outside and not on the inside. It didn't seem to bother him. I brought him in to the pediatrician and there was no ear infection. Of course, the ears would never stay red for very long. Hmm.
So a Google search produced a vast array of information about red ears. We read that children with red ears commonly have food sensitivities. We also read that there were instances of parents with kids on the spectrum reported having red ears. We also read that those with celiac's may have the same symptom.
Puking, red ears, autistic symptoms, we're going to try the GFCF diet we decided.
With a little help from Linda, a registered dietitian, a bunch of books and websites, and good ol' Wegman's and NaturTyme - we were off. GFCF stands for gluten free and casein free. Gluten is a protein commonly found in grains such as wheat, barley, rye, and kamut. Say goodbye to most cereals, breads, pastas, crackers, chips. Casein is a dairy protein; there goes milk, cheese, yogurt, and ice cream. So what can you eat? Meat, fruit, vegetables. So - corn and rice are OK, chicken is OK, but not breaded with wheat flour, french fries OK, eggs are OK, and all the unprocessed fruits and veggies he likes.
Almost all procesed foods have some sort of gluten and casein in them. Aside from the obvious, ingredients like malt, modified food starch, and whey must also be avoided. Go read some labels and tell me how many times you find these - they are everywhere! We have to be careful with hotdogs and cold cuts - but have found brands that are safe - Hormel Natural meats are for the most part safe - I always still label check though. Applegate Farms are our source for hot dogs - and they have chicken, turkey, and beef ones so we are fairly lucky since Zach is so picky about eating meat, sometimes this is his only meat source.
So what are the replacements for milk? soy milk, rice milk, hemp milk, almond milk, hazelnut milk, coconut milk. Many of them are pretty good - but it took us a bit to find brands we thought tasted good. (I think 8th Continent soy milk tastes like playdoh for sure.) Wheat flour alternatives include potato flour, rice flour, almond flour cornmeal, buckwheat, quinoa flour, tapioca flour.
The diet may sound restrictive - but think of this - Zach can still eat a filet mignon, with baked potato, side salad and have a chocolate lava cake. He can also have chicken nuggets, french fries, and apple crisp for dessert. Or turkey, mashed potatoes, green beans, and pumpkin pie. How about fried pork hops with onions, a side of rice and squash, with peanut butter chocolate chip cookies for dessert. These are all viable options for him that we have prepared without gluten and casein. Just none of it is purchased - we must make it ourselves for the most part. It's not fast and it is not convenient. But most things in life that are worth it aren't.
Tuesday, January 6, 2009
Saturday, January 3, 2009
Cookies & Outliers
Progress with Zach has been slow with one exception: he can say cookie darn well. Yup. Where there is a will there is a way. We need to start ABA therapy on this kid! I really feel that I cannot push him to do it on my own - I need help. His current services are not producing the results that I know (and the folks at Yale confirmed) he is capable of. This is nothing short of a sin that he has not started these services yet and that I have to jump through my bum to get things rolling.
I was reading this morning about various biochem treatments for autism. Biochem = mostly medications but some supplements too. It finally struck me. Many of the books I have been reading have made a lot of sense to me as an engineer, stating not to waste time with holistic or alternative therapies that are not scientifically proven. They may not hurt your child, but they will waste your time, and time is of the essence. This made total sense to me at the time, but I felt some caution, that these were people who thought too much along the same lines as me, and that perhaps, there were other logical views I should consider.
Caveat to the following: I am no doctor of medicine by any means! I don't even play one on TV. There are various diseases and disorders that are catchalls for groupings of symptoms more than a specific type of causation. Leukemia and epilepsy come to mind. Autism is also like this. The thing about autism, is that it seems that unlike some of these other afflictions, it manifests itself uniquely to every individual, thus, I like to call it the snowflake disease since no two persons with an ASD seem to be alike. Indeed, I have read cases that even identical twins who both have ASD may have different symptoms.
So, knowing a little about the scientific process, how does one go about doing a study whether it be a single or double blind study, if the subjects can vary so much, more so than just about any other disorder/disease out there? You need a group to test on that are alike - and autism just doesn't have a lot of groupings that seem to work this way. This is the reason that autism took so long to be defined in the first place. In fact, did many of you know that the medical community readily accepted that autism was caused by "refrigerator mothers" who unwittingly showed a lack of love to their child? This was widely accepted well into the 1970's until it was disputed by a Dr. Rimland. However, the damage had been done, parents were blamed for their children's condition, and many people still argued for this insane theory well after the fact.
My point is, with such a complex set of symptoms that manifest themselves in so many ways, how does one go about studying what is effective to all children of autism? How do you control this study when it requires statistically identical groups? Early Intervention has noted that an individualized plan is required for each child because they are so unique and have different needs. Indeed, the medical community is going to need to recognize the same. Some things may work for some and not for others. Thus a lot of anecdotal evidence vs. the sound scientific reasoning are pitted against one another.
We just don't have the studies and the statistics for all these treatments, that does not mean they are not affective. It just means the science/research/medical communities need to get off their duffs and start doing what it takes. There is too much anecdotal information for these things to be ignored. Someone has to devise a way of studying these things that will give the appropriate level of proof needed to say if and when these treatments are affective. Autism affects 1 in 150 children, and 1 in 94 boys. Where is the funding for this research when it affects so many?? (I'll give you a guess - how about AIDS, substance abuse, tobacco - all things that there are known preventatives for. Don't believe me - check out the National Instute of Health's website about where your tax dollars are going http://www.nih.gov/news/fundingresearchareas.htm)
Parents do need to try things on their children, and tell the doctors that their academic background, credentials, and experience are too limited to effectively deal with this disorder.
I have always been a misfit - I was tall, blond, geeky, an engineer. I am used to being the one who doesn't fit the average case. Just try and go shopping for pants with me! I was told not to pursue electrical engineering due to my sex. Steve has his master's degree at the age of 21 and like me is a geeky engineer. Just because something is an outlier statistically, doesn't mean it doesn't have relevance. In fact, sometimes is shows that there is an error in the theory.
Zach will not be on the average curve - but neither were Steve and I. Who wants to be average anyway?
I was reading this morning about various biochem treatments for autism. Biochem = mostly medications but some supplements too. It finally struck me. Many of the books I have been reading have made a lot of sense to me as an engineer, stating not to waste time with holistic or alternative therapies that are not scientifically proven. They may not hurt your child, but they will waste your time, and time is of the essence. This made total sense to me at the time, but I felt some caution, that these were people who thought too much along the same lines as me, and that perhaps, there were other logical views I should consider.
Caveat to the following: I am no doctor of medicine by any means! I don't even play one on TV. There are various diseases and disorders that are catchalls for groupings of symptoms more than a specific type of causation. Leukemia and epilepsy come to mind. Autism is also like this. The thing about autism, is that it seems that unlike some of these other afflictions, it manifests itself uniquely to every individual, thus, I like to call it the snowflake disease since no two persons with an ASD seem to be alike. Indeed, I have read cases that even identical twins who both have ASD may have different symptoms.
So, knowing a little about the scientific process, how does one go about doing a study whether it be a single or double blind study, if the subjects can vary so much, more so than just about any other disorder/disease out there? You need a group to test on that are alike - and autism just doesn't have a lot of groupings that seem to work this way. This is the reason that autism took so long to be defined in the first place. In fact, did many of you know that the medical community readily accepted that autism was caused by "refrigerator mothers" who unwittingly showed a lack of love to their child? This was widely accepted well into the 1970's until it was disputed by a Dr. Rimland. However, the damage had been done, parents were blamed for their children's condition, and many people still argued for this insane theory well after the fact.
My point is, with such a complex set of symptoms that manifest themselves in so many ways, how does one go about studying what is effective to all children of autism? How do you control this study when it requires statistically identical groups? Early Intervention has noted that an individualized plan is required for each child because they are so unique and have different needs. Indeed, the medical community is going to need to recognize the same. Some things may work for some and not for others. Thus a lot of anecdotal evidence vs. the sound scientific reasoning are pitted against one another.
We just don't have the studies and the statistics for all these treatments, that does not mean they are not affective. It just means the science/research/medical communities need to get off their duffs and start doing what it takes. There is too much anecdotal information for these things to be ignored. Someone has to devise a way of studying these things that will give the appropriate level of proof needed to say if and when these treatments are affective. Autism affects 1 in 150 children, and 1 in 94 boys. Where is the funding for this research when it affects so many?? (I'll give you a guess - how about AIDS, substance abuse, tobacco - all things that there are known preventatives for. Don't believe me - check out the National Instute of Health's website about where your tax dollars are going http://www.nih.gov/news/fundingresearchareas.htm)
Parents do need to try things on their children, and tell the doctors that their academic background, credentials, and experience are too limited to effectively deal with this disorder.
I have always been a misfit - I was tall, blond, geeky, an engineer. I am used to being the one who doesn't fit the average case. Just try and go shopping for pants with me! I was told not to pursue electrical engineering due to my sex. Steve has his master's degree at the age of 21 and like me is a geeky engineer. Just because something is an outlier statistically, doesn't mean it doesn't have relevance. In fact, sometimes is shows that there is an error in the theory.
Zach will not be on the average curve - but neither were Steve and I. Who wants to be average anyway?
Friday, January 2, 2009
What's next? Surprises.
So here we are in 2009. No real resolutions being made - just trying to figure out this new world we are living in.
Trying to stay normal is the hardest part for me. This is so intense at times, I feel like there is so much for us to learn; I am constantly reading books, talking to professionals, talking to other parents with kids on the spectrum, documenting what is going on, case managing Zach, researching on the Internet. I have a hard time having a normal conversation with anyone. My thoughts almost always lead me to something to do with ASD. I am sure people get annoyed with me this way. Why can't I just talk about the latest restaurant, band, political event, whatever like everyone else? Because if I look up I might miss something crucial.
But there have been some surprises with people wanting to reach out to our family. A few friends have contacted me, sometimes just to talk about life like we used to pre-diagnosis, some to get updated on what is going on. A cousin of Steve's has provided references to people who know a lot about ABA therapy. An aunt called to check in with Steve at Thanksgiving time. I know he appreciated that. Christmas cards were terrific with people writing to wish us a great holiday and sending notes all giving us some hope and support. An Aunt of mine told me that she read this very blog. I was so touched, and she probably never realized how much. I know she is going through some pretty serious health issues of her own, and like my mother, is limited in what pain medications she can take and what can be done to help her. This really blew me away. So many people care. We are so lucky.
Today Sophie will be going with her cousin to have some special time. She may even go to her first movie in a movie theater. I can remember very clearly taking this same niece to some of her first movies. I loved loved loved spending time with my nieces and nephews. Still do. They are all pretty much adults and living their own lives, and are frequently too busy to spend time with their old cranky aunt with the crazy family, as is the natural progression of life. I will always cherish those trips to the zoo or the science museum or the park, but mostly the sleepovers where we would dance around in our PJs and watch movies and eat junk food. I will always view each of them through those memories. I was so lucky their parents shared them with me!
My friends are terrific too. My friend called and is going to take Sophie for a bit tomorrow and then have us over for lunch. She has three kids 4 and under and she is going to tack on one more. She is probably one of the best mothers I have ever met. (I am frequently jealous of her ability to keep schedule with her kids and seem so calm and have an active social life.)
So if anyone has been wondering what they can do and they don't want to buy a book as mentioned in another post - look at what some of these others have done. An occasional phone call, email, or card to let us know you are thinking of us is always appreciated. Bake us some cookies, make us dinner, tell us whats going on in your life, stop by and visit us, invite us over to your house, or just read this blog. Those are all great ways to support us and we appreciate it all.
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Zach told Sophie he loved her after she told him a few days ago. I was there to witness it this time. I am ecstatic over this. I don't care that he couldn't say it to me or his Dad. His sister has really been itching to have him talk, and wondering if he loves her like she does him. This was a terrific present and more important for me to hear him say it to her than to me. Sophie is going to be a rock in Zach's life- I just know it. She really likes him and loves him. and I know she will stand up for him whenever she can, most likely with that bully kid at school that will call Zach a retard or something equally cruel. Oh... how I don't look forward to those events.
Maybe not. Maybe by the time Zach is in school, more kids will understand and be compassionate. Maybe no one will ever notice that he is a little different. What surprises lie in store for us - the next year will likely give us a pretty good glimpse of what is in store for our future. Surprises.
Trying to stay normal is the hardest part for me. This is so intense at times, I feel like there is so much for us to learn; I am constantly reading books, talking to professionals, talking to other parents with kids on the spectrum, documenting what is going on, case managing Zach, researching on the Internet. I have a hard time having a normal conversation with anyone. My thoughts almost always lead me to something to do with ASD. I am sure people get annoyed with me this way. Why can't I just talk about the latest restaurant, band, political event, whatever like everyone else? Because if I look up I might miss something crucial.
But there have been some surprises with people wanting to reach out to our family. A few friends have contacted me, sometimes just to talk about life like we used to pre-diagnosis, some to get updated on what is going on. A cousin of Steve's has provided references to people who know a lot about ABA therapy. An aunt called to check in with Steve at Thanksgiving time. I know he appreciated that. Christmas cards were terrific with people writing to wish us a great holiday and sending notes all giving us some hope and support. An Aunt of mine told me that she read this very blog. I was so touched, and she probably never realized how much. I know she is going through some pretty serious health issues of her own, and like my mother, is limited in what pain medications she can take and what can be done to help her. This really blew me away. So many people care. We are so lucky.
Today Sophie will be going with her cousin to have some special time. She may even go to her first movie in a movie theater. I can remember very clearly taking this same niece to some of her first movies. I loved loved loved spending time with my nieces and nephews. Still do. They are all pretty much adults and living their own lives, and are frequently too busy to spend time with their old cranky aunt with the crazy family, as is the natural progression of life. I will always cherish those trips to the zoo or the science museum or the park, but mostly the sleepovers where we would dance around in our PJs and watch movies and eat junk food. I will always view each of them through those memories. I was so lucky their parents shared them with me!
My friends are terrific too. My friend called and is going to take Sophie for a bit tomorrow and then have us over for lunch. She has three kids 4 and under and she is going to tack on one more. She is probably one of the best mothers I have ever met. (I am frequently jealous of her ability to keep schedule with her kids and seem so calm and have an active social life.)
So if anyone has been wondering what they can do and they don't want to buy a book as mentioned in another post - look at what some of these others have done. An occasional phone call, email, or card to let us know you are thinking of us is always appreciated. Bake us some cookies, make us dinner, tell us whats going on in your life, stop by and visit us, invite us over to your house, or just read this blog. Those are all great ways to support us and we appreciate it all.
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Zach told Sophie he loved her after she told him a few days ago. I was there to witness it this time. I am ecstatic over this. I don't care that he couldn't say it to me or his Dad. His sister has really been itching to have him talk, and wondering if he loves her like she does him. This was a terrific present and more important for me to hear him say it to her than to me. Sophie is going to be a rock in Zach's life- I just know it. She really likes him and loves him. and I know she will stand up for him whenever she can, most likely with that bully kid at school that will call Zach a retard or something equally cruel. Oh... how I don't look forward to those events.
Maybe not. Maybe by the time Zach is in school, more kids will understand and be compassionate. Maybe no one will ever notice that he is a little different. What surprises lie in store for us - the next year will likely give us a pretty good glimpse of what is in store for our future. Surprises.
Wednesday, December 31, 2008
Happy New Year!
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.
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.
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!
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