[matthew&noahsmom]

I know this has not got anything to do with weight loss , but I have to ask! This is also a support board & I could use some now.

My son Noah is 2 & 1/2 yrs. old & he was diagnosed at 3 weeks with a rare genetic birth defect ((metabolic)) he can not properly metabolize protein. He is on a special medical diet & has to take medicine 3 times daily. The thing is children with this disorder can & do have developmental delays , but it is not a given , it is essential to their development to keep their ammonia levels controlled & that is what I believed would keep him form being delayed , but I am finding him to be "delayed" now & am concerned .

Noah walked late~ 18 months , is still a little wobbly at times too & did use to say a few words ...baba , mama, dada, cheese, kitty , doggie etc. He is no longer saying these or other words & his eye contact is really hard to catch, he will not look at you for the most part!He is in speech therapy & started to do better , but has regressed again , I asked his therapist if she felt any concerns for autism & she said "yes" & to have him checked by a neuro psycologist. I put a call in to the office & will wait to hear after the holiday.

My question to you all is , are any of you farmiliar with autism or the signs of autism?? I dont wanna jump the gun , just concerned & yes , I have googled "autism symptoms...etc"" I just want a mom or families opinion?!
Thanks for listening!
Cris

[missus]

Hey Cris, I'm a little familiar with the signs. The fact that he won't look at u is one sign, however, it doesn't mean he has autism. But I saw a program on 20/20 (or read in a book) about this genetic condition he has. Seems to me that when u know about the condition early on, u get great results from the diet and meds. Sounds like u are handling it very well. And, I would wait until the neuro doc gives u the 411.


Came back to say my prayers are with you and family.
Hugs

Missus

[babagrlshell]

Hey there Cris. I'm sending lots of your way...
I have a nephew who is 4 years old and was diagnosed with high functioning autism (HFA) at 2 years old. I also have a cousin with a PDD (pervasive developmental disorder) which is in the same class as autism in the DSM IV... I know a lot about autism and I have lots of information (at home) about it. I'm also a senior psychology major and am doing my senior research project/ presentation on autism, the early signs or it, and early intensive behavioral intervention (treatments). I am going to be home this evening and will PM you some information about autism along with some information for parents coping with autism and/or other developmental disabilities...

One thing that I have to mention is that there is a LOT of hope. There are new developments each day and incredible treatment programs out there. My nephew has been in his program since he was diagnosed and will be attending kindergarten in the fall- He'll be in the mainstream classes for part of the day and in a sp. ed. class the other part. He's even telling my sister that he loves her. His program is great. Catching autism early is the first best thing that a parent can do to help their child. I know this might sound silly, but I am proud that you are willing to go forward and be open to any possibility. Its a hard thing for any parent to have their child diagnosed with any disorder, much less two. My sister took it a day at a time and just kept a positive outlook. I'll PM you this evening when I get back home (its a long drive) and we'll chat soon.
-Michelle

[matthew&noahsmom]

Thanks Missus & Michelle:
I really appreciate the thoughts & prayers !! That goes a long way.**HUGS*** back to you both!!
I am looking forward to your PM tonite Michelle with any info. you have , KNOWLEDGE is POWER!!
Thanks for the thought on being proud of me , that made me cry(( good cry , of course!!))
It does take a lot of courage & determination to be willing to ask for the help in diagnosing a child & secondly treating them for the disorder if it is found to be true!
It's tough , cuz I kinda am having a "flash back" to when Noah was first diagnosed with his disorder~ ASA ~& it was kinda like a "death of a dream" if you will . It seemed so overwhelming & unfair & scary at first , but now , although it is still overwhelming at times, it is our "normal" & we are blessed beyond belief to have Noah as our son!
Here's one of my fav. poems that gets me thru things a lot when I think I can't do it !!

WARNING(grab a tissue!!))LOL
Thanks again , really I appreciate your posts more than you know!!!!
Cris
--------------------------------------------------------------------------------

Welcome to Holland!
by Emily Pearl Kingsley

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I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel.

It's like this . . . When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michalangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes and says, "Welcome to Holland." "Holland?" you say. "What do you mean Holland? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place full of pestilence, famine and disease. It's just a different place. So you go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts. But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say, "Yes, that's where I was supposed to go. That's what I had planned." The pain of that will never go away, because the loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn't get to Italy, you will never be free to enjoy the very special, very lovely things about Holland.

[missus]

[CmdyTrgdy]

Mathew&NoahsMom,

I have worked with children and Adults with Developmental Disabilities the majority of my adult life.... As babagrlshell said there are many many new treatments and early intervention programs available now for individual's with autism..... There are behavior intervention techniques, dietary therepies... and more....

Take things one day at a time, one step at a time..... and reach out for help when you need it, we are here for you !

Individuals with disabilites have had the most impact on my life and taught me more about what it is to be a person of dignity, determination, strength, understanding, and love, than others considered "normal" by most of society....
I have been so very blessed to work with the individuals I have, and to assist them in living their lives the way they wished, and facillitating the fulfilment of their dreams ....

My signature is my philosophy about all of us, and I learned it from a young man named Jeremy, who had Cerebral Palsy, was "wheelchair bound,was diagnosed with "severe Mental Retardation", non-verbal, severally agressive......
Jeremy turned out to be quite intelligient, able to speak finally at 19 with a "Dynavox-adaptive communication device", of course he was agressive he'd lived 19 years being either ignored or treated less than...when in fact he could read, understand , and FEEL he Just couldn't talk like you or I.......

Sorry I got carried away, just please know that no matter what your son, is or is not diagnosed with that you will support him to be a loving, contibuting member of society and don't let anyone lead you to believe differently !

Love

[matthew&noahsmom]

cmdytrgdy:
Thanks You so much & I agree with you !
sometimes I think it is my "destiny" to be the Mom to a special needs child (( Noah is already a child with special needs.ya know??))

I too , agree with why Jeremy was frustrated & it is also a fact that most people , not all , are too busy & can't be bothered or just don't wanna take the time it requires to understand & deal with these types of individuals.

When I first started to think of the possibility of Noah having autism , I thought back to a kid that I worked with when I was in my early 20's at a convience store , he was "special" & most of the other employees would really just ignore him & I did not understand why... I made it a point daily to talk to him & try to know him , it was difficult in the typical sense , cuz he had autisic characteristics that did not really allow him to communicate fluently (( for lack of a better term)) But I still think of him today & think how grateful I was to know him & hope that I left the same kind of impact on him & his life! Sounds strange to some , but to me it is just natural !

I always thought I would have liked to work with Special needs kids/adults. Well,as it turns out God agreed with me & I have my work cut out for me for life!! Compassion~I have always had , patience~, I have asked ((prayed)) for God to help me learn ...this is probably the answer to my prayer , cuz this will definitly require patience!

Thanks for the reply. I really appreciate it & I will keep you all updated as it unfolds!
Cris

[CmdyTrgdy]

How are things going, are you okay Cris?

[matthew&noahsmom]

hey there!
Thanks for the post..yes things are going ok , I am actually going in for a meeting tomorrow for us to reopen our early intervention caseload on Noah , so the more therapy for him , the better!!
also in the process of setting up an apt. with a neuro psycologist for him.
Ill keep ya up to date as soon as I know!
Thanks again!!!!!!
Cris