Well! A "DougHug". Thanks so much! …
Well! A "DougHug". Thanks so much! My son is twelve, and was officially diagnosed with P.D.D./N.O.S.; I think of it …
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gaylek11 
Being a parent to a child on the autism spectrum is so difficult these days. Our son is 12 years old and as each year goes by I get more and more frustrated.
We need to find a way to be successful and to help our son to someday be "employable".
We worry how he will ever keep a job with his many disorders; unless something changes I don't see him "keeping" a job. He is so stubborn, has so many "strange" habits, and is the messiest kid I've ever met. No matter how hard I try, he is always filthy, makes lots of food messes (worse than my 2 year old granddaughter) and his hygiene is not good. He refuses to wear deodorant and it's so necessary.
Oh, heck, I could write a book but this is just ONE journal entry. : (
My other fear is that someday my husband and I will no longer be here to support him and fight for him. What will happen to him then?
His ADHD,Autism M.D. suggested residential treatment for awhile because of his weird eating habits (eats whole jars of mayonaisse, ketchup, etc.) and we have an open concept kitchen so it's difficult to keep Kris out of the food. We have locked food cabinets, deadbolts on lots of the bedroom doors to keep other stuff away from him, but it's impossible.
The specialist thinks he may have Praeder Willi Syndrome BUT he is NOT obese. We feel that is because he's been on amphetamines for his ADHD all of this time. Dunno!!! He hoards food even though he's never been hungry. He leaves food hidden (out of the freezer) to spoil. Our home will start to smell when we realize that he's found something else to "hide". I don't understand it as much as I'd like to. If you ask Kris he will tell you he doesn't know why he does what he does. I believe him. Because there is no rhyme or reason for it.
His obsessive/compulsive disorders are getting stranger. He now refuses or "forgets" to zip up his zipper after going to the bathroom. He wears his underwear into the bathtub before taking them off. So, they always get wet first.
He still canNOT tie his shoes.
He removes batteries out of every single items that requires them. And, he loses the battery covers. So frustrating.
He refuses to eat at the table. We do NOT want him to eat anywhere but AT the table and it's a real effort to make it happen.
We live like prisoners in our own home. We are so tired. But, to make matters worse we cannot find any residential facilities for him. We hear things like his I.Q. is too high, his disabilities are too great, our salary (which is not alot) is too high.
He does not qualify for SS Disability (nor do I, even though I'm disabled). We cannot find a residential facility for him. We reach out to our community and attend CRCG meetings to no avail. There is NO help for us. We are out there on a limb with no respite at all.
We cry out for help. We don't get it. We are sick of it. We have nowhere else to turn.
If we'd known going into this adoption that there would be no services for Kristopher I just don't know if we'd have taken on the challenge. At the time we thought love was enough. Well, in the case of our son, and all of his disabilities, love is NOT enough. If it were, he'd be great and we'd all be happy.
A disillusioned mother who feels like nobody gives a damn about the challenges we face!!!
We need to find a way to be successful and to help our son to someday be "employable".
We worry how he will ever keep a job with his many disorders; unless something changes I don't see him "keeping" a job. He is so stubborn, has so many "strange" habits, and is the messiest kid I've ever met. No matter how hard I try, he is always filthy, makes lots of food messes (worse than my 2 year old granddaughter) and his hygiene is not good. He refuses to wear deodorant and it's so necessary.
Oh, heck, I could write a book but this is just ONE journal entry. : (
My other fear is that someday my husband and I will no longer be here to support him and fight for him. What will happen to him then?
His ADHD,Autism M.D. suggested residential treatment for awhile because of his weird eating habits (eats whole jars of mayonaisse, ketchup, etc.) and we have an open concept kitchen so it's difficult to keep Kris out of the food. We have locked food cabinets, deadbolts on lots of the bedroom doors to keep other stuff away from him, but it's impossible.
The specialist thinks he may have Praeder Willi Syndrome BUT he is NOT obese. We feel that is because he's been on amphetamines for his ADHD all of this time. Dunno!!! He hoards food even though he's never been hungry. He leaves food hidden (out of the freezer) to spoil. Our home will start to smell when we realize that he's found something else to "hide". I don't understand it as much as I'd like to. If you ask Kris he will tell you he doesn't know why he does what he does. I believe him. Because there is no rhyme or reason for it.
His obsessive/compulsive disorders are getting stranger. He now refuses or "forgets" to zip up his zipper after going to the bathroom. He wears his underwear into the bathtub before taking them off. So, they always get wet first.
He still canNOT tie his shoes.
He removes batteries out of every single items that requires them. And, he loses the battery covers. So frustrating.
He refuses to eat at the table. We do NOT want him to eat anywhere but AT the table and it's a real effort to make it happen.
We live like prisoners in our own home. We are so tired. But, to make matters worse we cannot find any residential facilities for him. We hear things like his I.Q. is too high, his disabilities are too great, our salary (which is not alot) is too high.
He does not qualify for SS Disability (nor do I, even though I'm disabled). We cannot find a residential facility for him. We reach out to our community and attend CRCG meetings to no avail. There is NO help for us. We are out there on a limb with no respite at all.
We cry out for help. We don't get it. We are sick of it. We have nowhere else to turn.
If we'd known going into this adoption that there would be no services for Kristopher I just don't know if we'd have taken on the challenge. At the time we thought love was enough. Well, in the case of our son, and all of his disabilities, love is NOT enough. If it were, he'd be great and we'd all be happy.
A disillusioned mother who feels like nobody gives a damn about the challenges we face!!!
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I am sorry things are going so badly for you. I do not have a lot of resources, either. My Noah does go to a wonderful school. Does your son like his school? Why do you live like prisoners in your home? I usually try to take Noah on all family outings and I keep a tunnel vision on him and do not pay attention to people's reactions. I know you are having qualms about his adoption, but just think how worse off he would be if he had stayed with his biological mother, or wound up in a children's home! You should look into respite care in your comminity. This way, you could have someone come into your home to watch him while you and your husband go out to eat or run errands. I have heard that respite care is fairly inexpensive. My fiancee and I usually spend time together when my Noah is in school. Good luck! Let me know if you need anything!
noahsmommy
School is my respite. . . the only respite I get. He was recently moved from one middle school to another because they have a behavior unit at that middle school. He seems to like it and has even brought home homework and done it of his own accord. In the ARD I made it clear I would NOT force him to do homework. Our home can become a battle ground easily because of Kris' Oppositional Defiant Disorder and I can't fight him every night to do homework among the other problems I have with him. It really starts to affect the way I feel about him and treat him. : ( So, I don't make him do it. But, for some reason, at this time, he is doing his homework willingly. : ) So, that's a good thing.
The reason we are prisoners in our own home is because everything has to be locked up. The bedrooms are all locked up, some of the cabinets are locked up, all of the walk-in closets are locked up to keep Kris out of stuff he shouldn't mess with . . . from food stuff to DVDs, batteries, VHS tapes, etc.
Recently we found out he got into our daughter's wedding video on DVD. It's all scratched up. We will be able to make another copy from our daughter's dvd but it is just too much sometimes. We all need to have stuff that is JUST ours. And, Kris does NOT understand that element even though he's had psychologists, therapists, and in home behavior specialists all of his life. He just doesn't get possession.
The only thing he really understands is that if he gets into my purse I go ballistic. That is just way too much.
I've learned over the years NOT to value anything personal . . . from pictures, to trinkets, etc. Because he will ruin things. He is a human being and more valuable than any "stuff". But, still, it's tied to my memories and I need my stuff. But, not as badly as I need to remember that my child has a disability and some of this he just can't help.
And, so far, we have been denied respite help (financial) because his IQ is too high or our salary is too much. : ( It's difficult.
He did go to Camp this year and I only found one camp in the entire state that would take him. He was excluded from so many for different reasons.
hugs,
gaylek11
gaylek11