Recently diagnosed & still learning

[Dylansmom]

Hi Everyone,

I am the mom of 2 beautiful children. I have a 9 month old daughter Olivia and a 3 year old son Dylan. My son got diagnosed about 2 1/2 months ago. I kept asking my pediatrician if something was wrong with my son and I even mentioned the word autism but she assured me that was alright and boys developed later. She then tried to sign me up for parenting classes. I took it upon myself to contact my school district. Dylan was still talking in one word labels but not using pronouns or using ing forms of words. And he has trouble if he does not you with eye contact.

A speech pathologists came to our home to evaluate him. And I could tell when she was leaving that something was wrong. She said he qualified for services and maybe a special classroom but would not say anymore. two weeks later we brought him to the psychologists and within 15 mins she looked at me and my husband and said "he has autism". I will never forget that moment it was as if my world stopped and hung on every word that came out of the doctors mouth. And as we sat there she informed me that my daughter has a 50% chance of having autism also. After the testing was over I remember driving in my car screaming and crying and not understanding why my son. But the next day we had the Occupational Therapsit coming for more testing and she was absolutely wonderful with Dylan. She also stated that he needed therapy a few times a week and she would get back to us with the results of the sensory evaluation.

My son then was diagnosed with childhood autism and we are currently in the process of writing his IEP and getting the school picked out that will help him the most. I keep thinking about when this started an my doctor blowing off my concerns with my son and would have happened if I didn't call the district on my own. Now I have been reading when ever I get a chance so I can learn how to help him. But if anyone has any websites or resources they could let me know about I would REALLY APPRECIATE IT!!!! I still feel lost and confused. Here are few things about dylan:

*Always chewing on stuff ie. clothing, toys *loves to paint
*limited diet 5-10 foods *has no emotional reciprocity
*tippy toe walking *does not feel pain
*loves jumping *speaks his own language
*thomas the train is his favorite! *difficulty in new situations
*has difficulty with change in routine

This was more difficult than I thought and words cannot express how grateful I am to be able to get in touch with others how are and have been dealing with autism. Thank you so much!!!

Colleen (Dylansmom)

[AutMom]

Hi, My internet is working slow at the moment.
Sounds like possible deficiencies (chewing on things could be a sign he's low on something).
And diet changes may help since he limits foods it could indicate a problem with some foods. My son can't have milk products.

Here are some sites:

http://autism.com/ari/

http://brain.hastypastry.net/forums/index.php?

http://www.parenthoodplace.com/cgi-...?ubb=forum;f=69

http://groups.msn.com/TheAutismHomePage/

http://www.isn.net/~jypsy/autilink.htm

http://www.autisminfo.com/index.html

http://ani.autistics.org/

http://www.paains.org.uk/autism_forum/index.php

http://autism.about.com/

[Dylansmom]

Autmom,
Thank you so much for the reply! I think my son does have deficiencies. He only eats 6-10 items and it is not well balanced at all! I have been trying to find a doctor in my area that could help. I noticed that you put notes from the DAN conf. up and I was wondering what you know about them? I found a doctor that comes to albany, NY 3x a week and uses the DAN protocol. I was hoping someone could tell me out it. If you tried it? Anything.

I did start my son in cranial sacral therapya couple of weeks ago and he has made improvements with his speech and eye contact. And for the first time he felt it when he fell and got a cut! I think if I could find the right doctor to help with supplements and diet it would make a big difference in his life.

Thanks again for all of the websites!

[Greenclovers66]

Hi!
The chewing on things is called "pica" and it is pretty typical because of sensory issues. Sensory Integration Dysfunction (SID) is very common with autism. That is generally one of the reasons for the limited food intake - textures tend to be a real issue.

A great book to read is "The Out of Sync Child", it is a fantastic resource and it will actually answer many of your questions.

I can certainly understand your frustration with the pediatrician. My little guy's doctor did the same thing, every time I voiced a concern her response would be "my son was delayed in ...." I finally got tired of hearing it and found a different doctor who took my concerns seriously and assisted me in finding the right resources.

[Bethintx]

Sounds a lot like my Ryan in the beginning! We also had problems with him eating rocks! The kind that was on the playground. We stated to give him the fat hard pretzels to help with that stimulus. He's no longer using those. But he still loves pretzels.(if you are on a gluten-free diet this would not be good) Another thing that helps is videos. We taped an episode of Bill Nye The Science Guy that talked about minerals. There was a silly song that said to eat food that has minerals but don't eat rocks! That did it! He never ate rocks again!

He's 13 now and most of those things have been overcome.

Ryan used to get socks and chew them and swing them around making the spit fly! We started getting those mega packs of washcloths so we could keep them clean.

Eventually we moved on to keychains or zipper pulls with the big plastic clip and a small stuffed animal attached (be careful because some have those micro beads and some clips have a small clip with a spring int that could come off) Then we moved to rubbery and/or plastic keychains. We're now trying to phase those out too. He leaves his keychain at home when he leaves for school! The spit doesnt fly like it once did!

My Ryan would eat lots of apples! the texture of the hard red delicious were great for him.

He still will not eat anything creamy like mac & cheese and pudding or ice cream or milk. He loves pizza! That's how he gets his calcium. by eating pizza, lazagna, spaghetti with cheese in them. We also have him drink juices fortified with calcium. We dicsovered that he also loves chicken and broccolli florets(without the stems).

Keep trying. It does get better! Try some Sesame street videos that have songs. One great one that helped Ryan was Cookie Monster singing "Healthy Food."

The challenges are still there, but they do still learn and grow!

I hope this encourages you!
Bethintx

[Dylansmom]

Bethintx,

Reading your reply gives me great hope! What I have started to realize is that I need to hear stories like yours once in a while to give me that little extra to make it through the tough days! Thanks for your advice I really appreciate it!

Dylansmom
Colleen :)

[sharon]

There are local contacts for most area on the DAN websites. You may find someone in your area to discuss your questions and/or concerns.
Good luck!
* As a provider, I have seen some significant changes in some children.