New to all this

iVillage Member
Registered: 08-24-2006
New to all this
Thu, 08-24-2006 - 12:32pm
Hi. I've read your posts, and think maybe you could help us. My son is 17. I know that is a little older to be seeking diagnosis, but it has been an ongoing thing. He was a preemie, as were his two older brothers. His older brother is ADHD(!!!) so I was appreciative of Stephen's easy going attitude. He developed fine, first words, etc. on time for a preemie, was a sweet child. When he was three, we noticed he couldn't find words. He knew what he wanted to say, but would end up in tears trying to remember the word. I got pretty good at finishing his sentences, or prompting his conversations. I taught him very literally, because that is how I think, so he grew up with short, easy to follow directions. When he went to school, the teachers all thought he was smart, sweet, but immature. He was interested in toys and activities for younger children. He was retained in 5th grade, because the teachers did not think he was ready for middle school. He was in speech, but the speech teacher did not find any problems. He enunciates clearly, he just can't find the words. He was recommended for LD classes, but the only "help" that was available was limited academic courses. He reads very well, and is very good in the maths and sciences. I didn't think the coursework that was provided was challenging for him. He didn't mind. If left to himself, he could, and would, daydream all day. No class work just meant more time for himself. I got him in advanced and honors classes, and he makes the same grades there that he made in the other classes. He seems to do as much as I push him to do. He loves people, but he is clueless about relationships. He blurts out, does not know the meaning of the word "tact," walks into a room with a conversation going on and starts talking about something else to one of the people. He acts like he is the only person on Earth. He very pleasantly does whatever I ask him to do, if I am there while he is doing it. If left on his own, it just isn't going to happen. My brother's son has Asperger's, and a lot of the behaviors are similar, especially the lack of social ability. He repeats, paces, looks at his feet. He seems to crave attention, but doesn't know how to respond to people. Middle school was pretty rough with bullies, but High School seems to be much better. Most of the students seem to have adopted him, and think he is "sweet." We are not sure what happens after High School. I have tried to teach him to use a planner. I can get him to write down his assignments if the teachers remind him and sign, but I cannot get him to check his planner to make sure he has actually done what was assigned. We got him in to see a psychiatrist this past year, and she put him on Focalin and Lexapro, but I am not sure it has helped. He seems to do best when he is surrounded with people, even though he is so bad about interacting. Does any of this sound like something you have seen before? The doctor says PDD-NOS, but I think it may be a "catch-all" diagnosis.
iVillage Member
Registered: 06-25-2003
Sat, 08-26-2006 - 9:32am

Hello and welcome.

I agree that it sounds like you have done a great job with little support.

I was wondering about the word retrieval issues. Has your son seen an neurologist and had a full neurological workup? I know word retrieval issues are common in Aspergers and similar disorders, but word retrieval


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iVillage Member
Registered: 03-26-2003
Fri, 08-25-2006 - 4:46pm

Hey there, some of it does sound familiar.

Recently I have been helping with IEP's of teens who have no guardian and have been learning some good stuff. At this age your main focus (as you mentioned) should be what happens after school. He likely needs some good job skills training. I don't know what state you are in but there should be some resources to help him learn job skills. You definitely want to look into it now as after 18 it may be a completely different ball of wax.

Does he have an IEP or 504 plan at all? If he has an IEP then he should have a transition plan in place with things to do for preparation for adult life. If not, you may want to nicely approach the special education staff at your school. Explain your son, that he was recently diagnosed with PDD-NOS. Just ask them if they can point you in the right direction of resources for job training. That even though he hasn't needed educational help, he does need some help with learning job skills and do they know of numbers or resources in your area.

I would suggest keeping it a low key type phone call. Once the casemanager figures out he is 17 they are not even going to want to test for an IEP because it would take longer to get it all in place then he would be eligible for it. They balk at that kind of thing. But most likely they are the best resource for who to contact for job training since they have to write transition plans all the time.

In our area it is called "workability" is one program. There are a couple others too. I don't think a child has to have an IEP to benefit from them.

Also, I know in our area Goodwill provides job training, placement and support for people with disabilities. Since he is old enough to work and nearing the age of majority (18) you may want to call them and see what is availabe.

Otherwise it sounds like you have everything in control and doing great just by being mom.