My 18 moth old daughter just got diagnosed with a rare chromosome disorder. She looks like a " normal" child, but has developmental delays and she doesn't talk yet. Some children with this problem have been known to have mental retardation and or autistic behavior. I am seeking parents with young children with similar problems for support. Thank you
What is the name of the chromosome disorder? I have a nephew that was born the last June with a chromosome disorder that is also classified as very rare. His is Monosome 18 I believe. If it is the same, I can give you my sister in laws info and maybe the two of you can connect. You can email me at ____@____.com.
Thanks!
J.
Hello! My son was diagnosed with Autism just before his 3rd birthday (he's almost 5 now) I live in Sioux Fall, SD but I would be happy to chat with you about our experiences. The best advice I can offer is to get your daughter involved in your states birth-3 program ASAP. They were an amazing resource for us and a great springboard into the school system at age 3.
Good luck and let me know if I can help!
I know we've all heard bad things about MySpace, but they have several WONDERFUL message boards (Groups, they call them) about Autism and related disorders. I believe the one with the most members is called "I love someone with Autism", something like that. The people there are life-savers. There are so many members that you get answers almost immediately. There is very little negative, and if it does get posted, it is deleted right away. No spamming allowed, it is also deleted. I can't say enough about these people. I have made so many friends there, who I will probably be in contact with for the rest of my life. My son was just diagnosed with Pervasive Development Disorder/Aspergers.
After you sign up on MySpace, just click on "Groups" and you can search by keyword. I used keyword "Autism". Let me know if you need help.
Hi I am mommy to an 18 month old (18 months on Dec 14) little boy. He also was born with a rare chromosome disorder. He was diagnosed last March with Opitz G/BBB. We are flying out SLC next Wed to either confirm or rediganose him. He also has developmental delays. He has been belly/army crawling for about two months, cannot four point crawl or cannot pull himself to standing. He just learned to go from sitting to laying and vice-versa. He is not saying any words yet or turning when we call his name. He did finnally pass his hearing test. At this time, we do not think he is austitic but at this point, we are not sure of anything. We have not found alot of people in this area that know much about this syndrome and what to expect. He is now seeing therapists and develpomental specialists. He is a wonderful little guy though and much loved, prob a bit spoiled which might be some of his problems as we have four older children with no such issues. Anyway, I would love to to hear from you and your experiences. ____@____.com
hi A., my name is P. and my 2 1/2 year old son was diagnosed at about 18 mo with autism. we knew something was different about him but we were not sure quite what it was. he had started talking and then just quit. he would not wave or hardly look at us. he clung to me all the time. i could not put him down to play cause he wanted to be on my lap all the time. it was very stressful. he now has therapy 3 times a week, speech, occupational, and developmental. 2 of them are at my house and for one of them i take him to the childrens therepy center in moline. they are wonderful, and have helped him a great deal. he can now say a few words, we are also teaching him sign because his language is not very clear. he actually came up to me today and asked for a drink "wink". autistic children are very special. it may seem overwelming but get as much help for your child as you can, and seeking support like you are is a great start!
I don't know how much support this will be, my son Jacob is 19 months old. He babbles and doesn't make any sense when he is trying to tell us stuff. Until I read your post I had never thought of the possibility that he could have an abnormality. He has had other developmental delays. He is not walking yet and he didn't start crawling until he was 17 months old. He is a you said a normal looking child, but now that you mention it he has a lot of delays in his progression. I know he is behind in his development. How do I get him checked for chromosomal abnormalities?
My 5 year old son was diagnosed last year with high-functioning autism. I agree with one of the other women that you should check into your state agency - they've been enormously helpful for us as well. Good luck, and feel free to message me for any advice (or just a shoulder when you need one - I know what you're goint through!)
F.
