Autism Watch: 2007

Where to begin?

Posted on: February 5, 2008

So much to blog about, so little time.

The last week has been a rollercoaster — up, down, up, down, with a curve thrown in here and there. We’re five weeks casein and dairy-free, with no visible difference. We’re not giving up, but it sure isn’t encouraging. Maybe my son is in the percentage of non-responders, or maybe it takes longer than five weeks? He’s never been a big dairy person, so I’m betting that he’s a non-responder. I still stand behind the GFCF diet — I know too many people whom it has helped — but I do believe that no matter what is said, it does not visibly help everyone. Internally? Who knows. Ds is still having potty accidents, still isn’t ‘regular,’ and we honestly see zero change, but it wouldn’t stop me from recommending to others that they try it, as they may just find their child does improve.

On to the next thing. We made the difficult decision recently to try our son on Risperdal. If you read my blog regularly, you’ve seen my son’s tantrums and meltdowns are worse. The mood swings are horrific, along with the self-injurious behavior, and I’m tired of being hit, bit, kicked, and having ds’s sibs having to tolerate it as well. And hearing him yell to all of us how he hates us, hates himself, wants to hurt himself, wants to die, isn’t liked by anyone, etc…I really pray this medication helps ds get some control over himself. I know he can’t want to be this way. On one hand, it’s heartbreaking to have to make this decision, but when you get to the point where you need to try it, for your child, I think you’ll know it. You need to make that decision for yourself, not for anyone else. I’ve run into my share of ‘you don’t need to medicate your child’ people. That’s fine, they don’t have to medicate their child, they’re right. But I get to make that choice for my own son, and I’d prefer this medication over what he’s doing to himself otherwise, and if this helps him be happy, who has the audacity to say it’s not worth it? Educate yourself on the side-effects and be ready for what may happen as best possible, but in the end, make the decision based on your own family alone.

Until we see some change with this medication, we won’t be dragging ds to any birthday parties. I also won’t be taking him shopping or to other loud, crowded places. It really is that bad. So far, we see more compliance and less anger, so we are continuing to pray this medication holds the key to future improvement, along with continued behavioral and social skills help. Picking your child up from school, and listening to him sob quietly the whole way home…no child should have to feel that way. No parent should have to worry if their child is going to make it through a school day without feeling the entire class hates him, that they are all teasing him, or that everyone’s laughing at him, tattling on him, or trying to kick him away from their lunch table. True or imagined, is it really any better? Something needs to change.

Where will I take my son next week? Disneyland. Yep, Disney, even though it’s loud and crowded. The sensory input from the rides seems to overshadow the downsides, at least for a while, so we’re going to head down again, and as always, get the special assistance pass. SO well worth it. If your child is disabled, autistic or otherwise, Disney is wonderful in dealing with special needs children, so don’t hesitate to ask at Guest Services for the help you and your child(ren) need. Without that help, our annual passes would shrivel up in a drawer somewhere, a lot of wasted money, but instead, those passes are now fun, family-oriented Occupational Therapy.

This week, ds has an orthopedist appointment. We want to see if he still has fat feet or pronated ankles or rotating knees and hip. The whole ‘my legs hurt’ issue is one we definitely want to clear up before he’s growing more, and this appointment should help us determine whether or not there are any real problems or if this is just another part of autism spectrum disorder, as one doctor has told us…but we’re not quite ready to just leave it at that if there’s something we can do to help him feel better.

Back to work now — and go vote!

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4 Responses to "Where to begin?"

I know its a hard thing to decide to put our wee ones on medication, but sometimes the unmedicated child ismuch worse off. We are also using risperdal and are very happy with the results. We had to up it after the 1st month to get all day coverage but other than that every thing has been great. J has much more control over his anger now.
If he starts to get to where he wants to hit me or his brother to get out his frustrations, I put up my hand or a pillow and let him count down from 10 with not too hard punches. when we get to 1 I say “times up, lets hug.” 90% of the time he can calm down during the count down and is smiling by the end.
Have fun at Disney!

Hear hear! For the wonders of Disney and the special passes. The magic of the Kingdom carried on for us long past the time we left those sparkling gates. Occupational therapy indeed. I agree 100 percent!

I understand your decisions. I’ll just note that it took our girls some time before we really noticed the impact of the GFCF diet. I think removing dairy showed quickly but taking away the gluten took months to really show its benefit — AND only with the combination of therapy (speach, occupational and behavioral). It really seemed as if the diet “allowed” our children to respond to the therapy whereas before, the affects of gluten and casein in their bodies prevented them from responding, learning, talking, etc. But, you’re right — it doesn’t work for everyone. And, it’s frustrating. We also found during the process that our kids were intolerant to other foods, like corn and rice. That was fun šŸ™‚

Hello!

I think I have a non-responder to diet. We saw no response taking the foods out and no response when we reintroduced foods.

I see that you were still not seeing a response at 5 months and you wrote that 11 months ago. Did you ever see a response? If so, when?

Thank you

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