Another OT thread that I need to get off my chest

[riffmeister]

Hi Kwak,

Oh my, that is not what a parent wants to hear! I hope things go well for you and your son. We here at H-C are all pulling for you!

Maybe it's my imagination, but it seems like there are an increasing number of kids diagnosed with autism than ever before.

In any event, I sincerely wish all the best to you.

.

[fatback]

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.

 

 

Sorry to hear of your son's diagnosis. My son now 14 was diagnosed as ADHD when he was 3 (which now tends over here in the UK to be diagnosed as Autistic Spectrum (rightly or wrongly diagnosis seem to go in and out of fashion) Anyway at the age of 5 turning 6 he contracted encetholitis (spelling?) which made things quite a lot worse in that he has a reading and writing age of about 6 years old not a great memory and a bit of a speech impediment and not the best control over his limbs (but nothing that bad all in all ) but seemed to knock the ADHD on the head. We ended up with a different child. (not completely)

 

The hardest part the point of diagnosis is letting go of all the plans we men (and probably women) have for their children at a young age. (We would all have to anyway at some point) You will grieve - and it will take a long time, but hopefully you'll turn round one day and you won't miss the man he could have been. This takes a longtime and sometimes I'm better at it than I am at others. (Oh don't feel guilty for feeling that way either)

 

Don't lose sight of your son's individuallity in the diagnosis. What I mean is don't allow the diagnosis to become your son e.g He has autism therefore he must do ..... or he can't do...... (I've seen this happen) use the diagnosis only as long or when it is to you, your son's and your families advantage.

 

On a lighter point fussy eating - my son was a very fussy eater. We tried gluton and rice cakes etc. (the advice of a very expensive dietian - be careful there are a lot of them about) It didn't last - couldn't eat it myself so what did I expect Joseph (my son)to do. Anyway he's beginning to grow out of it now. Still drinks milk by the gallon though.

 

Its a long journey but you'll get there. Oh yes the squeeky gate gets the oil.

 

Phil

[mogami]

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.

 

 

take a deep breath and just do what's right. And smile about it.

[kwakatak]

You know, maybe some of you are right and that I'm being overly pessimistic. Tonight he and I broke out the hose and we played Bellagio (sp) fountains over his little water table. He laughed his little @$$ off.

 

Maybe I'm the one who needs his head examined. Taking care of kids is stressful and in all honesty I could be doing a lot better at it. Today was a low point only because I got myself all worked up and couldn't sleep. Coffee can only get you so far until you run out of steam too.

[Hamhand]

Having a child with challenges is a long road, but look for the light. I was told of our childs limitations for years. Don't accept them as reality. Push him to a higher plane. Mine is 16 now, and working toward a career in graphic arts. Never give up. Frustration is going to happen, but if you let up, the so called experts will not give your child all the help he deserves. And the help is actually a right in most states. Good luck to your young man, may he become President someday!

[JasmineTea]

Kwak,
got your email. With stuff like that I never know how to reply. It's like I can't-for-the-life-of-me put myself in those shoes. My feet fit into a lot of different shoes, but not that kind...about all I can do is wonder.

I guess if I were you I'd take the positive advice, the "hey, you've got a good kid anyway" stuff that's being posted. And don't let it bring you down, maybe there's an oppertunity somewhere in it...bet if you give it some time to sink in, eventualy you'll step back and see it.

[0rbitz9]

Try to be patient and optimistic Kwak. A close friend's son who just turned
four was also diagnosed as having minor autism. It seemed like teaching him
to talk was going to be a long and slow process, even with a speach
therapist. I don't know how it happened, but in just the last few weeks, he
seems to have made a sudden jump in progress, almost like someone had just
turned on a switch, and he started talking.

Now that their son has made it over the speach hurdle, the other problems
such as potty training, and not being able to interact with other kids are
falling into place. It seems like this kid just took a little longer to get over
one of bumps in the developemental road. Adults hit bumps in road too;
life can be cruel, but everything eventually falls into place, as long as you
have friends are willing to help.

You've been blessed with a child that you love, be grateful for that. Don't
take it as a kick in the stomach.

[carguy]

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.

 

+1

[kwakatak]

Orbitz, I'm praying to God that Justin is following that same pattern.

Last night as I was giving little Joey his 2:30AM bottle I did quietly say a little prayer for Justin. As I sit there with the little guy laying and nursing while half-asleep on my lap I looked out the window to my left and saw what I took to be a sign. Beyond the trees of the houses on the street that meets mine is a religious retreat. Normally you can see the steeple with a little light in the bell tower, but not last night. I don't know if it was because of the fog or what, but instead of the usual view there was this shimmering white light.

Was it a sign? Only time will tell, but I have a good feeling.

Now I ask you : is this the face of an autistic child?



This picture was taken a little over 13 months ago on the day that the IKFC OM-03R arrived. It was also the day we first interviewed with an early intervention agency to get him some speech therapy. He's a little bigger now but no less charming.

[jeffcoop]

He's a beautiful boy, and lucky to have you as a father.

 

It's amazing what you learn. Before Noah came along, I never would have thought of this as a face of autism:

 

 

And yet here we are.

 

Things may be rough for awhile. Having a newborn is exhausting and stressful, as you know, and caring for a newborn and an older sibling simultaneously is exhausting and stressful, as you know. Add onto that the things you'll need to do to address Justin's condition, and you'll be very, very busy. But you can do this, and it sounds like you're off to a great start.

[eor]

you're on the right track. talk to your case manager/doctor/whatever and find as many resources in your area that he might be eligible for. he might be eligible for free life long support, as i know we had that out here in ca for kids with autism.

also, consider a special school for him. and no matter what school he ends up in, be involved, especially if he's in a public school. get to know the teachers and aides and anyone that may watch over him (well, now and always, i guess). many people aren't trained/don't understand/have no idea how to reach/don't have the patience to deal with someone like justin, so make sure he isn't being mistreated. he may not be able to express it himself. seen it happen.

also, behavioral therapy is great; try to go that route. seen a lot of kids get (heavily) medicated and tossed aside, floundering through their days. pills aren't magic and it's going to take work from all sides for him to make progress (him, too).

lastly, if you're up to it, educating yourself might help. flip through a dsm manual for his particular diagnosis so you have an idea of what they think he has and how they got to that conclusion. there could be a lot of wikipedia in your future.

love,
eor

(worked in a children's mental health provider for a few years; picked up a few things)

ps- wash your damn socks.

[DeepEnd]

 

Sorry to hear of your son's diagnosis. My son now 14 was diagnosed as ADHD when he was 3 (which now tends over here in the UK to be diagnosed as Autistic Spectrum (rightly or wrongly diagnosis seem to go in and out of fashion) . . .

 

Our daughter was diagnosed with ADHD in early grade school. We have her on medication. She's very bright and creative and she's been an honor student for much of the intervening time. She'll be a freshman in high school in the Fall. Each child presents unique challenges and that's why each set of parents is unique. You're in my thoughts and prayers. If that's any consolation, you'll all be fine.

 

God bless,

David P.

(DeepEnd)

[fatback]

Our daughter was diagnosed with ADHD in early grade school. We have her on medication. She's very bright and creative and she's been an honor student for much of the intervening time. She'll be a freshman in high school in the Fall. Each child presents unique challenges and that's why each set of parents is unique. You're in my thoughts and prayers. If that's any consolation, you'll all be fine. God bless, David P. (DeepEnd)

 

 

Thank you for that.

 

We're optimistic - we hope to get him into college to do a foundation in land management - including woodlands in a couple of years. Things are very settled at the moment - things generally improving. We've just got the ADHD removed from his statement - its not there anymore (as I said the encephalitis did for the ADHD. The reading and writing might take some time but he's bright and confident gutsy and brave. He's a patrol leader in his Scout group - and a bit of the leader of the pack - (this is quite rare considering he goes to special school and the rest of the Scout unit mainstream) He will try anything once. Just learned to ride a bike last year. Thats one hell of a delay compared to his sisters but every year he regains something new.

 

Congrats with your daughter - long may it continue.

 

Phil

[rsgars]

I have a 14-year-old son who is a mish-mash of challenges, autistic tendencies but not diagnosed as autistic, seizure disorder, behavior challenges. Take each day as it comes. Try to be encouraging and at the same time consistent and diligent with the things you really want him to learn/know/enjoy. There are basic skills that we still work on with my son consistently and there are those times when, out of the blue, he suddenly gets it.

One of the most important lessons I learned (Although I still forget it sometimes) is that when kids like mine appear to be non-compliant or not listening to what you told them, they really don't remember what you told them or asked them to do. It's not that they are being disobedient as much as it is like you never said it to begin with. That's not the case 100%, but be observant and you will be able to tell the difference.

Get in contact with your local ARC chapter (Association for Retarded Citizens). I know that sounds scary and not very politically-correct, but they can be an excellent resource, including for things like respite services. I know our local chapter is invaluable to us.