Another OT thread that I need to get off my chest

[kwakatak]

Our 3 year-old son was diagnosed with autism on Friday, confirming both my suspicions and my worst fears. The psychologist kind of sugar-coated it saying that it appeared to be a mild case but still and all it feels like a kick to the gut.

 

My wife is fine with it and just wants to get treatment started, but she's not the one home alone with him and a 3 month-old all day. I can't take my eyes off the 3 year-old and naturally the same applies to the baby as well.

 

I've been doing some research online and am starting to get an idea of how truly challenging the road ahead of us is going to be. Besides trying to get financial assistance from the state for his disability so that we can get help at home with him, I'm also looking into what I can do with his diet. I've heard some good things and some bad things about the GFCF diet and several variations thereof.

 

Anyway, I've already e-mailed some folks about this but couldn't get through to everybody so I figured I might as well air my dirty laundry. I might not be around as much since I'm beginning to frequent the autism and parenthood message boards in search of some support. I just wanted to get this off my chest and get back to my third cup of coffee.

[smatel]

Just when I start to feel sorry for myself, someone reveals something about their lives which results in a tendency for me to feel shame at my self indulgence. Your family will be in my thoughts, kwatatak.

[kwakatak]

Just when I start to feel sorry for myself, someone reveals something about their lives which results in a tendency for me to feel shame at my self indulgence. Your family will be in my thoughts, kwatatak.

 

 

Thanks, smatel. I appreciate it.

 

Now to keep it on-topic and allow me to try and keep my sense of humor I have to also ask: how the heck do you get sand and/or baby vomit out of a guitar?

[AugTPD]

Sorry to hear that Kwak. But it sounds like your son is truly blessed having a Dad who is already working so hard to help him.

[Sisyphus2]

This diagnosis is always a shock for parents and the uncertainties that go with it are really scarey.
on the otherhand my partners Brother is autistic - hes one of the nicest most caring people Ive ever met. He plays the guitar and loves listening to the sound of the wind - we would not be without him.
Best way to get baby vomit out of a guitar is to wait for it to dry - then it comes out in nice snack sized pieces.....

[Freeman Keller]

Neil, you've got a bunch of friends and a pretty strong support group here. You, your wife, and your family will be in my thoughts, and I'm sure everyone elses.

[simplygoodmusic]

Though I am sure that this means more work then you would like... but who knows, it is not unheard of autistic children being especially gifted at, say, music.

[Rickkkk]

Neil -

With autism, I'm guessing that no 2 cases are identical, but I thought a personal story might encourage you a bit. My young cousin is autistic and is now 41 years old and living a happy, independant life. While we were growing up, I remember his parents (my aunt and uncle) and his older brother (2 years difference) being patient and loving with him. When he got a bit older, they got some help sending him to a special school that really did wonders.

You and your family will be in my thoughts.

Sincerely,

[denvertrakker]

Our 3 year-old son was diagnosed with autism on Friday, confirming both my suspicions and my worst fears. The psychologist kind of sugar-coated it saying that it appeared to be a mild case but still and all it feels like a kick to the gut.

 

 

OK, Neil, it's full disclosure time. My daughter is a Speech/Language Pathologist who specializes in working with autistic-spectrum kids. The reason I say "spectrum" is that there is truly a wide range of involvements with the diagnosis. Some kids are at the bad end of the curve, many (and more all the time) are at the mild end of it. Being aware of it at three certainly gives you a head start, and it's amazing the new treatments that are coming on stream.

 

One of her most interesting areas of involvement is with Asperger's Syndrome - characterized as a mild form of autism. She's even got me convinced that I've got a mild form of it - and I have to say, when she recites all the indicators, she may have a point.

 

My point is: You've identified it early, and that gives you a head start towards a satisfactory outcome. Good luck with it and keep in mind, listening to music is constantly mentioned as a treatment....who better than Dad to do that? And you may want to take to heart Rory Block's quote in my sig - you and your wife can make a difference.

[babablowfish]

I know that it is a shock to you and your family. Still, there is no reason that your son cannot have a happy life. He will be different and his life may not be the way you envisioned, but it can still be a happy and satisfying life for him. There is a woman I have read about who has autisim who has written extensively on the subject and who has a PhD. I recall also hearing her interviewed on NPR a few years back. Anyway, good luck to you and your family in making this adjustment; I know you will be feeling OK again in a while.

[brahmz118]

Neil, as a music therapist I have worked with many children diagnosed with autistic spectrum disorders or pervasive developmental delays. I always felt that there was something special about all of these kids. And I don't mean that as a euphemism -- they often had extraordinary creativity and unique perspectives that taught me to think differently.

A music therapist named Juliette Alvin wrote an excellent book called Music Therapy for the Autistic Child, and she described both positives and negatives of using music with this population. This probably seems obvious, but sometimes music facilitates communication and interaction, while other times it encourages self-absorption and isolation. The book is available through Amazon, but you are welcome to have my copy if you want it.

If possible I would encourage you to look up some music therapists in your area. I really believe they can help.

[simplygoodmusic]

One of her most interesting areas of involvement is with Asperger's Syndrome - characterized as a mild form of autism. She's even got me convinced that I've got a mild form of it - and I have to say, when she recites all the indicators, she may have a point.

 

 

Both my brother and my father have this form of autism, and from what I understand, it is extremly common.

[kwakatak]

Thanks, folks.

 

Like I said, they told us it was a mild form. Justin's sociable (nonverbally) with adults and older kids but he rarely interacts with kids his own age - be it in preschool or just out on the playground. He just fixates on one thing, does a lot of repetitive motions, makes a lot of random noises and flaps his arms a lot. He's also prone to temper tantrums and will only eat 2 or 3 different foods, but never in combination.

 

On the bright side of things, he seems to be gaining some verbal skills. At 2 years he used maybe a dozen words overall and only 2 or 3 repetitively. Now he's said at least twice that and associates the words with foods, activities, things, etc. This past couple of weeks he's finally started reciting along with a speech DVD that we bought over a year ago and he's even sung along with a Dan Zanes song - and remembers/recites it spontaneously. I suppose that if you'd only heard the song once you wouldn't recognize it, but garbled as it is when it comes out of his mouth we can't help but smile.

 

The hard part for me right now is balancing the two of them. My in-laws come over and help but there's no rhyme or reason to when they'll come over since they're retired and living the good life.

 

Another thing I'm having difficulty with is getting Justin to eat more than just a couple of things. As a baby he wasn't fussy at all and when he started solid foods he'd at least try different things. I can remember him eating a whole banana at least three times a week along with a PBJ sandwich. Nowadays all he wants to do is guzzle down milk and eat a 1/4 jar of peanut butter in one sitting - and God forbid there should be a slice of bread anywhere near it. Even then he doesn't finish it, will throw anything in reach when he's had enough and then runs off to get PB everywhere. Or OTOH he'll be halfway through with what's on his plate and start signing for "more" while gesturing at the jar/box of whatever's interested him at the time. Then he'll eat 2 more bites and run off. Heck, he's even gone so far to throw his food while either yelling out "uh oh" or singing "dean dup (clean up)"

 

I'm seriously considering putting him on a gluten free diet but as my wife say, there's no guarantee that he'll even eat what we put in front of him.

[kwakatak]

Both my brother and my father have this form of autism, and from what I understand, it is extremly common.

 

 

From what I've heard, 1 in 150 children has some form of autism. That's one child diagnosed every 20 minutes.

 

I don't know what the cause is but I can tell you I'm seriously considering on not letting our pediatrician give our baby any more vaccinations. I also feel that our eating habits are atrocious and may also be part of the cause. I have no basis in fact to reject the shots, but I am doing homework on several of these gluten-free variant diets.

[MattSkibaIsGOD]

Neil your son sounds a lot like my brother. It's very frustrating at times, but I love him. Wish you the best of luck.

[jeffcoop]

kwakatak, my five-year-old son is on the spectrum as well. They've only narrowed the diagnosis to Asperger's recently, but we've known for a couple of years that he was somewhere on the spectrum. So I have a sense of what you're going through.

 

All kids are different, so it would be foolish for me to say that your son's progress will track Noah's. But your brief description of Justin sounds a lot like Noah at 3--and he's made enormous progress since then. His receptive language is now age-appropriate, as is his expressive vocabulary (although he uses it oddly). And he's now interested in interacting with his peers (although he has little idea how to do it). More importantly, he's also an unparalleled delight a good percentage of the time, and I could not possibly love him more.

 

(We also have a two-year-old daughter, so let me warn you: prepare for some sibling issues--they'd probably happen anyway, but you really need to watch it).

 

In any event, hang in there. It isn't easy, but there's so much that can be done with early intervention now.

[doug osborne]

My 18-year old son is highly gifted and on the autism spectrum (not Aspergers, but close). He can be a challenge, but thankfully he is super smart and he will find his way.

My girlfriend's son is farther down the spectrum. He is 13, functionally about 10. The gluten-free diet has been very good for him as has ADHD medication (a daily patch). He is in a special school, and gets lots of support, but we're not sure if he will be able to support himself in the future.

My girlfriend is writing a book on the various ways parents of autistic kids can get support. Autism isn't a death sentence. The best treatment IMO is behavioral - commonly, these kids are all ego and need to know what others feel, because that part of their brains isn't functioning properly. There have been studies that have showed that the increase in autism while mercury-containing vaccinations were used was purely coincidental, so that might be a red herring. Be prepared for a few fun decades of constant care.

[guit30]

Neil,
It is great the support you have gotten already, I will be praying for you and family. My advice, don't live too far in the future, it may not be as bad as you have been told.
Best
Jim

[bjorn-fjord]

Kwak,

I don't feel quite right saying I'm sorry for your news because that implies that there is something "wrong" with your son, and from what we now know about autism, that's not necessarily true. But, as the father of a toddler I can completely relate to your comment about the news coming as a gut punch.
Ever since becoming a father, any kind of negative stories about children, whether it be on the evening news or something closer to home, hits me right to the core in ways I've never experienced before. I can honestly say that I had never felt anything quite as deeply as I have since my daughter was born. So, speaking from that perspective, I really feel for you and your family and, not to sound like a complete flake but, I am sending you all the positive energy I can summon.
A previous poster gave you advice that really helps me when the sh*t hits the fan: Try to live completely in the present and life's challenges won't seem so daunting.

A sidenote about autism. With the prevalence of recent autism diagnoses, I think it's pretty clear that many of us weirdos would have probably been diagnosed the same way had the research been at the level it is now when we were kids. I bet it's way more common than we think. Stay strong, bro.

[Dan Hall]

Well hell Neil. It's always something, as Gilda used to say. God bless him and you and the whole bunch of you for sure.

[d03nut]

One of her most interesting areas of involvement is with Asperger's Syndrome - characterized as a mild form of autism.

 

 

 

My thoughts exactly. lets just say someone very "close" to me has it. amazing math skills. also, my nephew's autistic. very musical.

 

still, while I agree with the "positive" posts here, I must confess that I did feel -and feel for you- your initial "shock" even from afar. somehow, the internet, seems to be an even more "powerful" resource today.....

 

I wish you strength.....

[kwakatak]

You guys are right - it's not a death sentence. We already knew that he was delayed but up until now he wasn't formally diagnosed. As early as 10 months old he was already flapping his arms and he seemed more intent to learn to walk than crawl. Even now he's very timid when it comes to climbing ladders, but get him near a couch or an endtable...!

 

As for being all ego, I don't know if that's 100% sure. Lately I swear he's been doing bad things on purpose, yelling out "noooo!" then giving me a sidelong glance to see if I'm paying attention.

 

FWIW, Justin is an amazingly happy kid with a big toothy grin. I have no doubt that once he gets the verbal skills he's gonna be alright. Right now it seems to be all about his attention span more than anything.

[Michael Martin]

Neil--

You're not alone in this, even among us AG forumites. My second daughter isn't autistic, but she has significant mental/physical "developmental delays" (the euphemism for what they used to call retardation) that are undiagnosed. It's a lifelong issue and a challenge to deal with. We know she will never be fully independent as an adult (now 13), but we love her and support her and hope for the best in the years after we are gone.

 

I don't know about social services in PA, but here in IA there are some really great support networks that provide much relief (respite, recreational stuff with other kids, life-skills development)...also, the public schools have some really really fine people who know how to work with her. All that, with two parents as relentless advocates, adds up to quite a bit.

 

I don't know whether it takes a village to raise a typically-developing child, but the "village" has been invaluable to our family in this case.

[Greymuzzle]

Keep the faith Neil. You have been diverted on to a different road, but you never know where the road you were on was taking you anyway.

 

WBYeats, perhaps the greatest of all the Irish Poets, suffered from a form of autism.

 

On your side of the pond the woman who probably has done more in practical terms for animal welfare than anyone else in the world, and is also a University Professor, Temple Grandin, is autistic

 

I know that in your circumstances that time to read is going to be hard found, but please take time to read Grandins book 'Animals in Translation'

 

Though written by an academic it is accessible and intensely personal and it builds bridges and provides insights that can inform, inspire and explain.

 

What do you think of Carbon Fibre guitars? Dishwasher proof?

 

All the best to you and yours.

[larry50]

Dear Neil:

My daughter was diagnosed with Juvenile Rheumatoid Arthritis (JRA) at 13 months. I can't speak to the issues involved in raising a child with any form of autism, but I can speak as a parent raising a child with a chronic illness. It is important, my wife and I have found, to take each day as it comes, the good ones and the bad ones, and try not to get too up or down, to try and maintain a consistent demeanor and approach with our daughter. My wife suspects that one of her vaccinations brought upon the onset of her disease, and God knows that there is a lot of anecdotal evidence about vaccinations causing all sorts of problems, but who knows. Stephanie has been on a gluten free and lactose free diet since she was about 15 months. That means no pizza, no cookies, no birthday cake, no peanut butter sandwiches (with bread at least), but we have noticed an improvement when these things were removed from her diet. She is also on a corn-free diet (no soda, no anything using high tech corn syrup sweeteners) which also helps. Perhaps other adjustments in your son's diet might show some benefits over time. Keeping an even keel is key for the parents, lest they go crazy. Sometimes this is hard, but not reacting strongly one way or the other gives your child some sense of stability. Stephanie cannot help being so stiff some mornings that she can't get out of bed, and your son cannot help the reactions and emotions arising from his condition. The parents, at least, can control their own reactions and keep an even keel in the household.

I know the heartache of not being able to help your child. Just like autism, with JRA there is no magic wand, no magic pill or potion that can cure the problem. Only time will tell what brings for our children. Any parent raising a child with special needs issues will have the utmost sympathy for your wife and yourself. Many autisic children, I have read, if their condition is relatively mild, grow up to live relatively normal lives. We will all pray to God that your son is fated to nothing more than a normal life.

It's times like this, I guess, when you can spend some late nights or whatever with your OM-O3R that we find what the ability to make music really means for us personally.