Possible special needs at 16-I'm going to cry
My worst nightmare is about to come true. My SS16 has always been a really weird kid, weird behaviors and no friends. He use to go in rages and have temper tizzies (like a toddler, until he was about 13), he flaps his arms, does strange body movements and facial gestures, he slaps his hands and makes all kinds of noises, acts like a 5 year old. I have always known there was something seriously wrong with the kid but DH and BM were in total denial. We (my expert friends and I) thought it was Asperger’s but I kinda always wished that the kid was just very odd. After many years, with the therapist’s help I finally got DH to go see an expert and to consider an eval. We went yesterday to a consult with the dr. DH is in the f’ing clouds over this and the kid’s mannerisms we did have some disagreements over the degree of SS’s weirdness. The dr feels the boy is in the 85% range of the Asperger’s scale. It is worth than I thought, the doc really didn’t give me much hope the kid would have a normal life…..like live on his own. The kid goes for his eval in mid-Oct. I am sick because I didn’t sign up for this! BM is totally out of the picture…she wants nothing to do with him. And….well……um……I don’t want to be caretaker of a special needs adult child……his behavior has been changing as he ages. I love my husband….but…..this is a bit much to be hit with. I am just sick to my stomach.
I can't imagine what this
I can't imagine what this must be like for you. My heart goes out to you....
oh i am so sorry for you....
oh i am so sorry for you.... i don't what to say, but i can only send my thoughts and prayers your way.
My sympathy on your SS's
My sympathy on your SS's prognosis. However, this may not be as life limiting for you and DH as you may think. There are group homes for people with these types of disabilities. When I was in the restaurant business I hired people regularly from these group homes for dish washer, bus boy, and even cook and host/hostess roles.
They did a great job and were some very good and reliable employees. It was a bit disturbing to be told every day "I am going to kill you Rags" but I leaned who was serious and who was not and released those who were a true threat. The home administrators and state worked very closely with me and were very supportive in integrating these remarkable people in to my business.
In the interst of full disclosure, the state did reimburse me up to minimum wage for their wages. However, non of them were my lowest paid employees after their first year. Their performance and reliability was better than many of my supposedly "normal" employees. For some reason that I was not able to assertain I could only pay them up to a limited wage. I would have gladly paid them more. They really were great people and enjoyable employees.
One of my closest childhood friends was eventually diagnosed with schitzophrenia and is incapable of functioning on his own. Ultimately his parents petitioned to have him made a ward of the state which opened access to significant support resources and programs that have benefited him. His parents still are highly involved with him and his life and in fact he lives in an appartment attached to their home. However, his medical, therapy, etc ... is all administered by the state. In the event of the death of his parents he would go to a state funded group home. He is 48 and has far exceeded the life expectency of schitzophrenics with his severity of the disease. It is my understanding that most kill them selfs in their late 20s to mid 30s.
Apparently he has had an amazing life. I get letters from him periodically containing the locations of secret bank accounts and safety deposit boxes containing $millions as well as the access codes for getting the money. We speak several times a year and I do visit him when I am in the area where he lives. Unfortunately not frequently enough.
Keep your chin up. It may turn out okay.
Best regards,
I am going to soooo sick.
I am going to soooo sick. Like Rags said these kids can grow up and work....the dr's son delivers pizzas. But they may have trouble holding down jobs and/or finding employment that they casn really support themself on.
I always knew there was something really wrong here and I said I would feel better if diagnosed. Now, I'm not too sure. My therapist the Dr rated him REALLY high, not a good thing. BUT the good thing is he is the Dr the state uses so he knows all the programs.
DH....already started with not knowing if the kid will go there. I am the one that picks him up from school, I won't tell where he is going, if he refuses to get out of the car. The dr's will take him out for me. Dh already said no meds, the kid said he won't take them anyway. DH has never read about AS, he disgreed with my perceptions of the degree BUT not knowing the symptoms he helped the dr out.
If it was up to me I would put the kid in a group home right now. I know how much coddling gones on here and I think it is going to get worst. The therapist said all of us (me, DH, BM) have to be on the same page and she doesn't see that happening with DH. She thinks DH will coddle SS even more.
I know the kid has it, it just a matter of getting him eval'ed and figuring out to what degree he has it.
I am shit scared that I will me stuck with this kid forever. My perception really changed last night. I picked him from driving school and was making an appt, he interupted once to tell me he signed up for the SAT's but doesn't know when then are. We interupted again, when the girl and I were chatting about math classes. He said something about Math 105...the girl snapped at him that there was no such thing. Then when we went to dinner he was fixating the entire time on Chinese characters. Before I thought this was just f'ing annoying.....now I feel I guilty that I think its f'ing annoying because the kid has a problem.
Dh and I haven't even talked about it yet...we are going out to that dinner tomorrow night...I guess this is what we will be chatting about.
I can't spend the rest with a set routine that keeps this kid happy and I don't want to spend the rest of my life with this kid walking 10 feet behind me flapping and drooling. I stop the kid from flapping but he thinks I am too stupid to figure out that he is flapping when he is behind me. The Dr said he works with the kids and this flapping shit can be stopped.....but the kid is 16 almost 17.
I'm just sick/
I know nearly nothing about
I know nearly nothing about functional disability levels but it sounds to me that if your SS can drive and perform at the HS academic level and can take the SATs that he has a very good chance of functioning at least at a low level in society.
I hope that is the case.
OldDart may have some useful input on this topic.
Best regards,
Rags...we are going thru the
Rags...we are going thru the driving nightmare right now. DH sent him to school because of three near death experiences just going around the block......he almost flipped the car. He lacks awareness and he was clueless to where the turn was, DH was in the front seat screaming ....GO STRAIGHT....I was in the backseat praying....he took the turn at 45 mph. The driver instructor said several times when she told him to slow down he speeded up. ANyway, a few weeks ago he took the driving test...he had 3 pages of fractions.....which included running a red light and a near miss with a city bus. The school said....they have never had a student fail so bad. I don't think he should be driving...he can't remember the address and when we walk he gets confused when we are 2 houses away.
He gets gets good grades at school, but every 3rd marking period he seems to get d's and f's. We are going to really watch that this year...we think he may be Bipolar....BM is. He signed uo for the SAT's BUT he doesn't know where are when they are. He doesn't know when Fall break is.
I kinda figure he can funcation at a low leverl...maybe...but DH refuses to ket him work. When the kid does work...he had him move wood up at the cabin. He worked 15-20 mins and ran into the bedroom to play with himself (he has a serious issue with that....the therapist is involved).
DH thinks he is going to follow his footsteps electrical engineering and a minor in Chinese and go over to China. If he does go to college....which I see a meltdown happening.....it will be more liberal arts.....stress free.
I'm just really sick right now....it was different before.
Old Dart did answer....its scary.
argghh...some reason this
argghh...some reason this double posted and I can't delete it!
Old Dart, the school has
Old Dart,
the school has been useless, our atty asked for an eval years ago and was told there aren't any funds for that. Plus I am dealing with BM who is Bipolar and DH that is in denial. The good thing is the dr we are going to does a lot of work for the state disabilty depart, so he can help us with the programs. The therapist he and I go to specializes in AS and she is doing a grant program in Jan on Life Skills.
He has no clue what he wants to go to college for. DH and I just consider college an expectation, I have never been sure of this one and I honestly don't see him being successful. DH is pushing for engineering, that ain't happening. I am pushing for accounting. I worked in the field for years, I am finally getting my degree and I have been tutoring kids in the subject for a few years. I know he will be able to maintain at least at 3.0GPA. Public accounting is out for him, he has linmited social skills, but I think he might do ok in a small or mid size co's accounting dept.
The problem in 6 years, when he would be finished with college....my DH plans on retiring and going into teaching. We already have a retirement home, we are in the middle of the federal forest. There are no apts close by. We have also talked about maybe selling the house and going to Costa Rica. Bringing the child with us, wasn't in my plans.
I know there are programs and support groups....but at this age he has to be on board too...I question that he will be.
Right now I am just wallowing in hopelessness.
That's a tough situation Time
That's a tough situation Time and one can hardly blame you for being despondent. The upside is now that its finally in the open and a plan of action is being formed you will eventually see something at the end of the tunnel.
Wait until that happens. If you can deal with the situation then obviously do so. But it it seems like you're in over your head make it clear to your husband that he'll have to consider your feelings also. If that means a group home then so be it.
Dad can keep the level of care up by dropping by the home each and every day if he wishes. And you can pitch in to the degree you feel comfortable with.
That is what I am struggling
That is what I am struggling with...my WORST nightmare. I have always known this kid had a problem and I thought getting him eval'ed would make it better.....NOPE.
Part of my SS's problem is he was/is coddled. That was a BIG mistake. He should have been given tough love since he was young. The therapist said he was very difficult to deal with when given a task...he would stand there and do nothing....waiting for her to come in and do it. We had the discussion last week if his problem was nature/nurture. I perceive learned helplessness and at time the therapist feels the same thing.
My advise is to do tough love with this your SS and make sure he develops daily life skills.
This is really scary.....
I completely understand how
I completely understand how you feel. My SD is a special needs child with Angelman Syndrome. She will never be able to live on her own, and needs pretty constant supervision (she's 12). She is basically a happy kid, but can barely do anything for herself as far as basic needs..it gets extremely frustrating, especially if she is acting out. It doesn't help that my SS is the rudest, most negative, surly 14yo ever born. You will have to get used to the stares from others when out in public and just ignore it. Basically, we just deal one day at a time. There's not a whole lot else to do. It will likely take some time for an official diagnosis to sink in, esp. for the bioparents. Since your SS is older, you probably will want to start exploring resources- the state should have some programs that can help you or point you in the right direction.