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10/21/2010 11:44 PM

support for parents of adult (age 20) with PDD NOS

chibimama
Posts: 2
New Member

Hello

My son is 20 and has, among other things, a diagnosis of PDD NOS, which I didn't realize until last year was actually on the autism spectrum, for years the schools and therapists blamed me and then him for his behavior issues.

I recently remarried and my husband, although he has known my son for over ten years, is struggling to deal with the behaviors, which compared to what things were like before meds and counseling are actually quite mild. He thinks my son should just fit in and feels he is held hostage by the situation.

Of course, it doesn't help that my son is suffering from an acute exacerbation of his anxiety due to moving, the new living arrangements and some recent medical issues that I had

I don't think I can vent or talk with my husband, he is partially upset because I have been upset, so maybe I can vent a little here.

I have to say, I am tired of dealing with this, but I love my son, and am hoping that things will calm down a little for all of us. Sometimes I feel like my husband is asking me to choose between our marriage and my son, and I basically told him that isn't a choice, I have to make sure my son is going to be okay, or at least have done as much as I can.

I know it isn't fair to expect that the other family members deal with his issues, but wouldn't they do so if he couldn't walk or was blind...he can help some of his behavior, but not greeting everyone or being talkative isn't really something he can do at this point.

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10/23/2010 01:38 PM
gillihan989
 
Posts: 65
Member

My son didn't get the diagnosis until he was 13. I know how you feel with feeling like everyone blames you. I really felt let down by the school district and I am on the school board and I am a teacher myself. I thought he had ADHD really bad. Homework was a nightmare and in my mind as a teacher you have to do your homework. So we really did homework to get it done. The doctor we saw for the ADHD said his grades were our grades too. I told him I couldn't even go and switch the laundry around, he said well don't do that sit there with him. Oh, it was soooooo terrible. It is sooo much better now. In 8th grade he started going to a theraputic school and wow what a difference--like heaven.

I understand how new situations cause anxiety. If I come home and say we are going to do an errand he does get discombobulated. I remember when we would go grocery shopping and I would get something that was not on the list that was terrible or if we were running errands and I said we need to stop at another stop that I hadn't planned on, it threw him off as well. Things like that still do but I am much better equipped with telling him and helping him to adjust.

The other hard part is that in his mind everyone is his friend--even if they aren't.

We still have trouble with hygeine issues--I just don't get that part at all. He is also a huge procrastinator and not organized at all. I am very organized and have tried to teach him to be organized but is hasn't worked yet in 16 years.

It is often hard for others to "get it." I would look for some books for your husband to read. That may help him as well. Rodney Peete (a football player) wrote a book Not My Son or Not My Boy that I thought was very good.

I know before I always thought of autism being where the child doesn't talk and just kind of stares in space--but there is soooooooo much more to it than that. That is why there is a whole spectrum.

I worry about my son as he gets older and what life has in store for him. He wants to go to college but I don't know the reality of that or what kind of job he will be able to handle. It is scary.

Right now we are teaching him to drive. He has his drivers permit and in drivers ed. I don't know that he will ever drive anywhere by himself.


10/23/2010 04:33 PM
missymoo918
missymoo918  
Posts: 1299
Senior Member

I just wanted to pop in and say hello! Both of you are pretty new so I'll introduce myself. I'm Melissa, I have 3 kids, 2 girls and one boy. My boy is 4 and has autism.

chibimama, it must be so hard to worry about your husbands feelings while trying your best to support your son and his needs. It sounds like your husband doesn't really grasp the reality of your son's disability. Did you husband accept your son and his differences before you were married? Did something change for him to see him differently or not be so accepting?

gillihan989, the theraputic school sounds great! Is it a school just for kids on the spectrum? I bet my little guy would love something like that.


10/23/2010 08:17 PM
gillihan989
 
Posts: 65
Member

The theraputic school is not just for kids on the spectrum. There are various reasons kids attend. Most of the kids have not had a good experience in school. Many of them need the smaller more caring environment for a variety of reasons. Some of the kids have experienced the loss of a parent or live with their grandparents for one reason or another. The kids that I have met have all been very nice kids and get along very well with Joshua. We had the loss of my mom, then 9 months later my dad, and then 6 months later my father in law. That plus the struggles of school and puberty created a lot of stress and anxiety for all of us. We did go to a therapist for grief counseling and that was very helpful for us as a family.

01/16/2014 09:23 PM
Alsacecat
 
Posts: 2
New Member

Just a quick shy "hello". I have not been part of a discussion group for a while, suffered burnout among other things. But I am ready to mix again with other parents. My youngest child is 23 and is nonverbal PDD-NOS. He now lives in a group home with 4 other adults. He is doing the best he can. Unfortunately, my job situation changed and I now live 3 hours away. So I do not get in-person visits as much as I would like. We tried to move him down here to the same company's facility in our new town. But he made it REALLy clear that he prefers his San Antonio location. So be it. My baby is growing up and apparently will survive without me. Which is what we want for all our kids, right? Even the NTs among us. Anyway, thanks for letting me join in. FYI my initials spell CAT and sometimes my paws and the keyboard do not mix. Autocorrect is not always my friend, so thank you in advance for showing tolerance of typos.

Post edited by: Alsacecat, at: 01/16/2014 09:27 PM[u]

Post edited by: Alsacecat, at: 01/16/2014 09:28 PM


01/16/2014 09:32 PM
Alsacecat
 
Posts: 2
New Member

I remarried 17 years ago. Hubby inherited not only my precious Asa but a teenage girl and a rebel eighth grade boy. He's hung in there all these years. It can work, but yes, sometimes you will get very tired of being pulled in different directions. Remember to take time for YOU, your sanity will depend on it.

01/17/2014 12:34 PM
lola1945
Posts: 3
New Member

I hope I can jump in here and say that I have a daughter that is 42 and only about 2 years ago have I thought. I knew what was wrong. Her 6 year old was diagnosed with PDD-NOS. I began to read about it and it was HER. He acted just like her. BUT because she has always been so difficult and I had no idea why our relationship is destroyed. We went three years without speaking and only re-connected 2 and 1/2 years ago. We promised each other we would never do that again no matter what. Well because things are so crazy it has just happened again. she has gone into shut down, will not talk about anything ever.so nothing gets resolved.

Her husband was diagnosed with ADHD and he has no idea about anything. He can't remember anything nor does he notice any details. The whole thing is so hopeless and so stressful for me. Her youngest is 4 years old. she has spoiled him, babied him and he pitches fits like I have never seen. I can't believe this is my daughter and how mentally ill she has become by living in denial and lying to cover up her craziness of forgetting everything. her 18 year old told me his Mom is never wrong. I don't know what is going to happen to her or me. II can't sleep. dDon't know what to do. autism is a terrible disorder especially if never diagnosed. And to top it all off she has 5 kids and getting ready to adopt for china.

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