Off topic...does anyone else have a child with an Autism Spectrum Disorder?

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KerriH
Regular Member


Date Joined Mar 2008
Total Posts : 316
   Posted 7/5/2009 4:29 PM (GMT -7)   
Hello Everyone,
 
I hope you are all doing well!
 
I haven't been posting in a while, because I have been a bit preoccupied.  We found out our
2 1/2 has PDD-NOS (a disorder on the Autism Spectrum).
 
Anyway, does anyone here have a child with PDD-NOS?  Do you know of any good forums, where the parents appear reasonable? 
 
I'm having difficulty navigating my way through all of this because, as with Fibro, there is no known cure but a ton of theories and opinionated people about what does and doesn't help. 
 
If anyone here can guide me in a good direction, I would be very appreciative.
 
Thanks a lot!  :)
 


Sherrine
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Date Joined Apr 2005
Total Posts : 17101
   Posted 7/5/2009 7:14 PM (GMT -7)   
Kerri, I have a nephew with autism and my niece has been following Jenny McCarthy and what she has done with her son.  My nephew seems to be responding nicely.  If you google her name you will see a lot of info.  You may know all about her already but I thought I'd mention it just in case.
 
Sherrine
Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7


KerriH
Regular Member


Date Joined Mar 2008
Total Posts : 316
   Posted 7/6/2009 6:33 AM (GMT -7)   
Thanks for responding, Sherrine! :)

I was curious about Jenny McCarthy's methods. Skeptical, but willing to at least read what she has done. Glad to hear that your nephew has responded well to her chosen methods.

Has your nephew been following a gfcf diet? I asked Owen's neurologist and she said that there was no scientific proof, but most of her clients try it anyway.

Kerri

Fibromyalgia since 2007

"No pessimist ever discovered the secret of the stars or sailed an uncharted land, or opened a new doorway for the human spirit."
 
Helen Keller


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17101
   Posted 7/6/2009 8:12 AM (GMT -7)   

Yes, Kerri, he is on a gfcf diet and it seems to be helping him.  He is on probiotics, also.  He is now 4 years old and is starting to talk in sentences and he rarely has outbursts of crying.  He even likes being around other people and children.

She has him in a nursery school, but she goes with him so she can help him.  A regular nursery school couldn't handle him by themselves.  This one-on-one learning is really helping and he is functioning in the classroom.  My niece does work with him all of the day.  It is exhausting but it is paying off.

The DAN doctors are so expensive so that makes things really difficult.  There is a wonderful school for autistic children in our area but it is $35,000 a year!  No one can afford that so what my niece is doing is the next best thing.

My nephew has put together a nice web site explaining their trials and what they have been doing.  Check your regular email.  I'm emailing the site to you.  You might get some ideas from it.

I know this is a difficult time for you, but hopefully your efforts will pay off big time!  These children are so precious. 

Sherrine


Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7


Anne092
Regular Member


Date Joined Nov 2008
Total Posts : 52
   Posted 7/6/2009 8:27 AM (GMT -7)   
Hi I have a daughter that has ppd. I read Jenny McCarthy books. I also did my research with the gluten free diet. She is going through programs at her school. But I still would like to get additional speech for her. Since she began her program she now potty trained, talking more, and will have eye contact and respond to you when her name is called. She also will interact with other children. I did not want to change my daughters diet. There is a boy in her class that is on a gluten free diet and I don't see a difference between both children.

Does your town offer classes? I would go to the school in your town and get a IEP done.

Anne

KerriH
Regular Member


Date Joined Mar 2008
Total Posts : 316
   Posted 7/6/2009 9:35 AM (GMT -7)   

Sherrine,

That is so helpful, thank you! I appreciate you sending me the web site info. It sounds like your niece is a devoted, wonderful mother! I am glad that your nephew is making such great progress! I will pick up Jenny's book (the latest one) and give it a read.

We won't be going to DAN! doctors, as we really just cannot afford it. But, he is receiving some early intervention services (though, I'm not certain he is getting enough) and is slated to be evaluated by the school system over the summer. If all goes well, and they do not resist providing what his doctor recommends, he will be going to a special preschool full time days, starting in the fall (he turns 3 Aug. 30th).

Anne,

I am so glad to hear that your daughter is making progress. For how long has she been receiving therapy? We are going through EI & the IEP process now. I hope the school system recommends the amount of therapies we want for him.

I can understand about not wanting to change your daughter's diet. It's a big decision, as it's not the easiest or most frugal way to eat - plus, I'm not sure about your daughter, but my son is the pickiest eater I've ever encountered! I have been resistent to trying it, but am open to reading more and finding out more about it. Part of me wants to try it, just in case what I'm feeding him is contributing to his problems. Then again, part of me is not convinced that really does aggravate it in the first place.

Anne, do you belong to any forums for PDD's? I have checked out some, but I'm leary of joining one where the members push one way of doing things onto others.

Thanks again....Kerri



lost in philly
Regular Member


Date Joined Jan 2009
Total Posts : 243
   Posted 7/6/2009 11:58 AM (GMT -7)   
Kerri, Hi. I have taught children with special needs for many years and worked at a private school for autistic children here in the Philadelphia are.
The finicky eating that you described is very common among these kids and often we saw children who had intense and constant cravings for salt or carbs and sugar. The earlier you can find anything to minimize that struggle with food, the better off you will be---imagine a teenager who is much bigger and stronger than you that will only eat a very small range of foods!
When we worked with the children, because these kids dont often get the same enjoyment out of typical praise, hugs etc. we would need to find something else that would motivate them to learn and do school work. So I would also think that finding things that motivate him, anything he gets excited about is also very helpful for the teachers later on. You would be surprised what you can get a shy, tactially defensive kid to do if you promise them play time with an Elmo doll! lol
In school (a good one anyway) he will be exposed (in a therapeutic way) to all the things that typical autistic children avoid (sensations, food, eye contact, noises), all in the hopes of desentizing him.
You said that the private schools were too expensive in your area--however if you go to their websites, they may have alot of resources and know of support groups/ sites that you may want to go to. I hear you that there are many very strong-opinionated parents out there on this subject. But every group will have a few more even keel types who are looking for someone more like themselves. Google autistic schools/ programs in your area and find out what type of speech therapy, play therapy etc that the more reputable schools are using--and then see if you can get books or info about how to start those programs at home. The earlier the better! Most of what we did at school would be very easy to do at home and especially with the speech therapy (e.g using Picture Exchange Cards) it would make a night and day difference with our students.
For what it is worth, regarding diets--we saw that it only minimally helped the students who obviously had stomach issues/ allergies. Limiting white sugar/ flour will help most any kid (esp those that are ADHD) to settle down more. But we never saw a huge difference. We had some families that did the chelation treatments, I dont know what those are like (IV?)--all I know is that the child would cry the entire next day and it was very sad.
Dont give up hope, sounds like you are on the right track with getting all your supports in place! Your child can learn and he can learn to be expressive, affectionate and to have his own special talents. I have seen miracles happen! You will too.

Best of luck,
lost in philly

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Fibromyalgia, Endometriosis, Migraines, Asthma, Chronic Fatigue

Savella, Topamax, Morphine, Percocet, Wellbutrin, Abilify, Crestor, Resoril, Loestrin, Imitrex

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KerriH
Regular Member


Date Joined Mar 2008
Total Posts : 316
   Posted 7/6/2009 5:31 PM (GMT -7)   

Wow, Lost in Philly, your post brought tears to my eyes! 

I will definately see which types of therapies we can do at home.  Come to think of it, what his developmental specialist does with him each week would be easy to do at home.  We do mirror what she does throughout the day, but we could have our own "sessions" as well.  I will be sure to see what the private schools in my area are doing and also ask our therapist for book recommendations.

I have read about offering other types of rewards for performing a specific behavior, but I'm not sure how much he understands what I say, so I am unclear if he will know what it is I'm trying to have him do.  Perhaps, we should start small.  I'll give some thought to what that might be.  We are having a sensory profile done on him soon, so hopefully this will give us some insight into how he learns best.
 
Thank you for sharing your observations of children following gfcf diets.  I believe if our son would eat more produce, any mild gastrointestinal symptoms he might show (and there is very little) might correct itself.  I finally got him to try watermelon the other day!!  This was a HUGE accomplishment, because he usually will not eat anything "wet". 
 
Very sad about the kids who had chelation therapy crying all the next day.  cry    Poor things. 
 
Thank you again for your reponse!  :)

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