I dont know what to do

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Hi,

My son is autistic and very mildly MR.

For years he was happy all the time, loved school and all activities.
We were 2 peas in a pod always going to activities and having fun together.
I have no family BUT HIM. Its just him and me...

Then he hit 17-1/2 and he was transferred from a school (where he had known all
his classmates all his school life) to a higher academic school where he knew NO ONE.

At first he did well, even getting on the honor roll. Then he suddenly started hitting
me, trying to hurt our dogs, and flipping out at school (screaming at people, breaking
things and throwing things) After the 5th incident I picked him up and took him to the
adolescent hospital and they kept him for 3 weeks and changed his meds. Gave me
supports in the home and a TSS worker for school. Things went better for awhile until
the start of the new school year. One month in he flipped out, attacked his teacher and
his TSS worker, and the school 302ed him. I called a friend I knew in the school system
and she told me to refuse to pick him up when the hospital releases him and demand he
goes into a residential school with more supports. So I refused to pick him up and demanded
residential school at a therapeutic school. The school district refused to pay for the residential
part (they did agree to dayschool), and the county refused as well and the insurance refused as well.
I tried everything!. I was forced to bring him home....

They threw more supports at us. So far all these home supports did
was come and play board games with us. He did well for the rest of the year at the new
therapeutic day school, the supports in the home ended 6 months later and we were reassigned
to a new agency, new supports (the man was fabulous) and a transitional case manager. Then in
October 2013 he started acting weird again. Anger all the time, depression and anxiety and started
pulling away from all activities. Christmas was good, but 2 months later he completely dropped
in mood and one morning he threatened to kill himself and said he hated himself (while on the
phone to his supports) I was told to 302 him. I did. they did nothing this time in the hospital.
No changing meds, no trying him on an anti depressant. NOTHING. I again tried to get him into
residential. No one would pay. Told to try getting him into a group facility, to help with behaviors...
No one would pay for that. Brought him home again...Given a HAB worker to be his "friend"
He was happy for 2 months. then dropped again and one day refused to go out with the hab worker.
Told me he was scared that the hab worker was gonna bite him. Here started the strange comments.
One day he was suddenly scared to get a bath, cause "Im gonna get to be 300 pounds and wont
be able to get out and get stuck" he told me.

Soon the depression started and he told us he wanted to kill himself...I didnt want him back in that hospital
again since they did nothing. Had the hab worker come and chat him up and give him a pep talk. Was
okay for awhile until the new school year...

Started the new school year okay, but soon was experiencing anxiety every morning.
Halloween came and again (like last year) he was saying he was gonna die and ghosts
were gonna kill him and goblins were scaring him. NEVER had an issue with Halloween before
these past 2 years! Says he loves school and his teacher though.
but has huge anxiety in actually going. The school hides 3 incidents from me (hitting a teacher 2xs
and throwing a chair) I am told nothing. I get a phone call in November from the school
telling me that my son wrote an alarming sentence on a spelling test "GUILTY: I am guilty of
throwing my Mother out the window"...Starts to have sleeping problems, where once he slept
thru the night.

Supports dont seem alarmed by these alarming comments. They also dont seem to think his
new imaginary friend Scotty, who he talks to out loud, is alarming either.

The one fabulous supports dude had to quit to deal with family matters. No new supports for 8
MONTHS!

My sons computer gets fried I get him a new all in one model. 2 weeks later he starts taking it up in
his bedroom at night.... When he comes downstairs in the morning he puts it in the livingroom away
from me (The tv and my computer is in the Familyroom) He never brings the comp back in the famroom
from then on out.
He starts having major anxiety over starting this years Bowling season. Wants the police to come
to force him to go to his first game.! !! Doesnt go to the first game but starts banging on the wall to get
my attention that hes not going!

Christmas comes and hes happy a little

Then EVERY DAY BECOMES A HUGE ISSUE JUST TO GET HIM ON THAT BUS FOR HIS LAST
8 MONTHS OF HIS FINAL YEAR OF SCHOOL! A year ago I was diagnosed with pre-diabetes
and my panic attacks have returned. It has made me not feel good and be tired and not as fun
as I used to be. And the stress of the past few years does show on my face.
Every morning this past school year was started with a panic attack, cause I didnt know if he was
gonna be "crazy eyed and unpredictable" or not...Just to get him on that bus took all I had.

He told me he didnt want to graduate till 2016. That he didnt wanna be successful! Told me
he was stupid.

Given 2 new supports people who actually seem to be able to get in my sons head!
Things go well, and they convince him to leave his computer downstairs on school nights.
We establish that the high academics from the new school 3-1/2 yrs ago actually made him
melt down, cause it was way too much pressure for him and he missed his old friends.
We established that the "normal' students at that school picked on him and bullied him.

One day i asked him, 'why he doesnt wanna do any activities or go anywhere anymore
and why doesnt he wanna watch tv with me in the tv room?"
He didnt answer, but a few days later came to me and said that, " I dont wanna go anywhere or do
anything and dont wanna be in the tv room anymore cause Im afraid Im gonna hurt people!"

His support people dont seem alarmed by this either.

My son was so depressed and it was showing big time and nothing was happening!
No new meds, and the supports helped a bit but the same issues were still there.

Found out he was stealing some stuff out of my room. The supports talked to him about it
and he yelled at us and banged the table! She told me he needed to be hospitalized.
BOTH his supports think hes exhibiting Schizo or Bipolar symptoms...

In February he got a sinus infection and was given Zithromax, and was fine for 2 days then BOOM
he had major regression and the supports no longer worked. He stopped participating in therapy..
He needed to be back in the hospital, but he was now an adult and refused...Finally the Dr gave
him an anti depressant but it did the opposite. It made him AGGRESSIVE and HOSTILE.
Took him off of it and he went back to just being depressed. Refused school.
I was MELTING DOWN, I needed help!
Begged supports for him to go to a RESPITE HOME to give me a break. COULD NOT
FIND A RESPITE HOME FOR 1 MONTH!
One day I fall asleep at night on the couch and at 4am I'm awakened by a crazed son dismantling the entertainment system, almost pulling the tv over on himself. He screams at me that HES PISSED OFF I WONT LET HIM STEAL MY STUFF FROM MY ROOM! Telling me hes happy im having a panic attack! He himself is shaking with his anxiety and hes got the crazy eyes and so I call 911 and hes back in the hospital.
Hospital says nothings wrong with him...! !! !! !! !! !! !! Say they are gonna release him!
His supports people finally find a respite home for him in a GROUP HOME. So he goes from the hospital to the Respite/Group Home...

The supports say they are applying for a special funding waiver for him, for a group home, to
help him work on his behaviors. They told me that I would do all the fun things and holidays with him.
They got the funding 1 week into him being at the group home.

3 weeks into being at the group home/respite, he gets 302ed from school cause he beat up his teacher 3 days in a row.
Teacher said he was acutely psychotic during the incident.
The hospital FINALLY took this time seriously!
I was so happy! I was LIKE "YES!! THEY WILL GIVE HIM THE RIGHT MEDICINE AND HE WILL BE BETTER AND HE WILL BE BACK TO MY HAPPY LOVING SON AGAIN! AND HE WILL BE ABLE TO LIVE WITH ME!" YAY!! !! !! !
They put him on HALDOL and Klonipin but only diagnosed him with Impulse Control Disorder and he went back to the Respite/Group Home.
He got out 3 days before Graduation. I called his supports and asked if it would be a good idea to tell him Id bring his computer up to him if hed attend graduation that Friday. They said it would be good.
He said NO to graduation.

We all didnt want him to have his computer yet so he could work on socializing with the others at the HOME.

The following Saturday I call the group home to tell them Im coming up to bring him his computer and other things.
When I get there the next day they REFUSE TO LET ME IN, CAUSE THEY SAY I UPSET HIM!! !! !! !
Apparently my phone call about graduation upset him and he destroyed everything in his room!! ! BROKE
EVERYTHING!
I had to call 3 people to finally be let into see my son.
I asked him what he was doing for the 4th of July, he said GOING TO FIREWORKS!
My heart sank! I thought I was supposed to be "DOING THE FUN STUFF" with him!?
I saw GRADUATION BALLOONS in his room. They threw MY ONLY CHILD A GRAD PARTY WITHOUT ME!
Since hes been at the group home they have not called me even once.
His SUPPORTS people are all telling me HES DOING SO WELL!
How is beating up his teachers at school 3 days in a row and getting 302ed and DESTROYING EVERYTHING IN HIS ROOM in the space of 1 month "DOING WELL"????
How is allowing him to DESTROY everything in his room "helping him work on his issues" ??

I am seriously losing my mind here. I miss him so much and I have no other family and my life is basically all about HIM
and I dont think hes doing well and What am I going to do with myself the rest of my life. I enjoy being a mother and doing holiday things. i love taking him places and going to his activities with him. He says he wants to be with people his own age, but they arent facilitating that,. Hes currently with 3 elderly non verbal people!

i just dont know what to do...My heart is breaking...

There is so much going on for you and I'm not sure what to suggest.

But one has to start somewhere. And then, hopefully, maybe things start to get just a little better at a time. In a perfect world, what do you wish would happen next?

In a perfect world my son would be home watching tv with me sharing things together on our computers, or hed be playing video games or basketball with a friend.

And thered be no more pain

Is anyone supporting you?

i went to therapy in 2003 got my life and head in order...
Things were great for many years until my son turned 17-1/2
Feb 2014 I went to a therapist again but she fell asleep in my session.
So that turned me off to therapy for awhile.
I know all the steps to get "better" but honestly sometimes those things dont help if
the actual "cure" is that your son is happy and well again and you have him back.
If its about your kids its an incurable hurt. ya know?
The best time of my life was spent with him at the baseball field cheering him on.

I am sorry this is happening. And it must be such a shock to see your child go from happy to having so much difficulty. Not that anything could prepare you for that.

If I am understanding what you wrote you do not feel comfortable bringing him home with you full time now, but that is your goal? And you want help working toward that.

So if that's the case I guess you need to sort out what needs to happen for you to feel he is ready to come home. And ideally other people will help get him ready to come home.

I am wondering if where you live has a parent advocacy group or if where your son is has a caseworker who can help?

My issues are as follows:

1) This current group home was only supposed to be a temporary respite home. They were supposed to be looking for a group home with "kids" his age to transfer him to after he got the waiver. This has not occurred and he doesnt want to be where he is. This makes me appear (in his eyes) to be a liar. I have told him he will be having friends his age and be able to play video games and shoot hoops with people after school every day like any average kid does. I have been told by 2 of his supports that this was true, but now they say hes staying where hes at ...
SUB ISSUE: Everyone in his life has been making promises to him for years that they never fulfill. They tell him they are going to have 2 xs a month video game socials, which only occur 2 times in 3 years. They tell him they will take him to see the computer place and 2 yrs later they get around to it. They tell him they are going to pair him up with kids his age for "playdates" (for lack of a better word) that never happens. hes probably angry at this. His ex baseball coach told him he wanted to take him fishing, then never did it. My son was sad.

2) They misrepresented my role in his life at the group home. They told me from the get go that ID BE THE ONE TO DO ALL THE FUN THINGS WITH HIM AND HED COME HOME ON THE HOLIDAYS! This appears to not be true and when I speak to anyone at the group home I feel dismissed and judged. Had I known Id have a very minimal role in his life Id have never agreed to him going to this place at all.I wanted him to go to the Group Home for behaviors...I NEVER wanted to stop doing activities or holiday things or being his mom.

3) They misrepresented what group homes do. They told me theyd WORK ON MY SONS BEHAVIORS AND ISSUES. Like a residential therapeutic school for adults. Again this has turned out not to be true. Again, how is allowing him to break everything in his room HELPING HIM CONTROL ANGER AND FRUSTRATIONS?

4) Ideally I do want my son home, and Im certain he wants this too. but I feel as if the past 4 months and 4 yrs has driven a huge wedge between us, that currently his supports and the group home are facilitating and not helping repair. His supports are taking longer to return emails and calls and Ive not received a call back from the group home after leaving several messages for the senior worker.
Sub Issue: In 2008 I started getting sick after working hard to lose 65 pounds. I did not have as much energy, and felt sick at times. it took 2 years to diagnose me with gallbladder disease, but after I had it out I still wasnt right and wasnt as chipper and raring to go anymore! Then 2 years ago I was diagnosed with prediabetes and all that comes with it...Maybe my son thinks this was HIS FAULT. That my tiredness and depression meant I was sad with HIM. Being tired and not feeling peppy anymore and not feeling up to some types of activities isnt about HIM, its ME. I desperately WANT to have the energy again to do tons of activities and be smiling all the time. Sometimes yes, I do feel like a wet blanket around him. But it isnt ABOUT HIM. For years ive been waiting for him to graduate and get out of school so we can hit the road and do tons of trips. but his therapist tells me now that hes at the group home I can do those by myself now. huh?

5) All his issues are not being worked on STILL after all these years. Hes been complaining hes depressed for 3 years now, how is living in a group home with elderly non verbal people (2 in wheelchairs and one on oxygen) helping his depression.

6) I still believe he has not yet received a proper diagnosis for these new issues. My son never had issues controlling himself at school or at home for years until he turned 17-1/2, why suddenly is he being diagnosed with IMPULSE CONTROL DISORDER? Impulse Control Disorder does not have depression and anxiety and paranoid thoughts and comments. All of which just showed up in the past 4 years. The so called AGE that major mental illness shows itself.
We can stand in line at any Amusement Park for 45 mins or more with heat and all kinds of people and crying kids and he never bats an eye, but hes got an IMPULSE CONTROL DISORDER????
i literally watched my son, pull away from everything and me and turn into an angry paranoid, panicked and depressed person and I witnessed all his supports tell me it was puberty and teen behavior. I was BEGGING for anything that would work. They just brought board games.

7) 3 Years ago they had no money for residential schooling, yet 3 yrs later they are throwing money at my son now that he isnt living at home with his family? I got a weird phone call 2 weeks ago from the insurance company (medicaid) They thought they were calling the group home, but dialed me accidentally, asking if my son needed any money cause hes got plenty coming to him! Never once in the past 13 yrs has the Ins Co. EVER CALLED ME. But when hes at a state run agency they are throwing money at him....hhhhmmm! So basically they try to do very low cost minimal therapy for many years until you get so stressed out that you beg for your child to go into a group home and then they throw big bucks into the STATE RUN COFFERS for THEM TO MAKE MONEY.

People with autism need SOCIALIZATION and BEHAVIOR CONTROL THERAPY, yes? But they also need to have NORMALCY and part of that normalcy is to establish normal kid and teen socialization every day after school and at home ESPECIALLY for autistic kids without siblings and cousins like my son. Many autistic people without siblings and cousins just sit at home in the evenings and weekends and never get that paling around in the basement or neighborhood rabble rousing and slumber partying and secret telling NORMAL TIME. my son has been watching videos on youtube of kids doing LARP activities and putting on shows and Paling around for years. And I think he has realized hes different than them and he might never get that social time in his life and he now hates himself cause hes different...Where are the programs that focus on the after school at home and weekend social time...They only seem to have activities where YOU go to an event, and the event is over after 2 hours and you go home to tv, video games or the computer and no real friendships occur. For instance, at Challenger Baseball you are focused on the "game"... There is no actual socialization time. After 2-3 innings you get in the car and go home. This is what our kids need to establish friendships that will sustain them.
Furthermore regular kids my sons age, 20, are off at college or out with a GF/BF, they are over friends houses, partying, socializing, planning (in the backs of their minds) their futures and marriage and careers...They see meaning in their lives!. But LIFE, to a person of my sons abilities and social level starts to hollow out and things that he once enjoyed are boring and have less meaning.You can only go to so many Christmas Craft Parties or go to yearly Zoo or Aquarium Trips at the nearby Township Building before you go insane, right? I saw it the past 3 years on his face taking him to his annual birthday trips! Where once he was smiling and happy on the drive out there it was slowly feeling hollow on his face like he was going thru the motions.
In the past I could buy him 3 sports magazines and a Happy Meal on a Saturday and that would satisfy him all week.
So, how do you motivate a now adult person who views the world and life as hollow and meaningless, to get happy again?? Especially if hes been taken away from everything he has ever known and all his things?

9) In my life as a Mother I never can recall ONE time that any agency PREPARED me for what my sons adulthood would look like. I was never invited to a meeting to discuss his life after school or limitations he might have going forward. All I knew for certain is that my son LOVED SCHOOL and was HAPPY at that time and I wanted that to stay that way even if he did not get a job and I also knew he would, more than likely LIVE WITH ME THE REST OF HIS LIFE. And I had no desire to change that. I wanted him to stay with me.
When I was a newly single Mother in 2002, I got him into services. The services agency told me he did not qualify for Wrap Around Services. In spite of ME, his mother being a single mom, with no other family and obviously struggling with her own childhood trauma and without any supports or guidance or anything. I got nothing for many many years.
I cried so hard when I found out that there was challenger baseball for him.
That agency that told me he did not qualify for Wrap Around i believe is the reason me and my son are so broken today.
Honestly we BOTH should have gone to the group home to keep us together and get major therapy.

10) In the end I miss my son terribly, I want him to live with me. but I also think that the root cause of his issues are either being misdiagnosed (MEANING: Why not take into account what multiple supports and therapists are saying and not just a 2 day stay in the hospital to make a diagnosis) or not addressed (Meaning: If you keep promising him he will have friends that will come over and pal around like typical kids that might give his life meaning and that never occurs FOR GODS SAKE HE HAS A RIGHT TO BE ANGRY AND DEPRESSED!! !) FFS, the Supports agency needs to start a program hat just deals with social groups that do typical "dude" activities like walk thru the woods and collect frogs, skateboard, walk to the store for soda and Slimjims, joke around, tell secrets, sleep in a tent with no technology, that is how you socialize, not Christmas Crafts or endless repeat trips to the Zoo or Aquarium.

Im just heartbroken and I just dont see a happy ending here.

The only happy ending I can see since you want him home with you would be if you could talk to him and find out whether he would like that as well. It seems like it's taking a big chance to bring him home and might not work. But it seems like maybe you want that, so I guess the question would be, since the supports don't seem to be preparing him......is be able to choose and can be exert the self control to live with you? And if not, yes it is heartbreaking and undoubtedly people have stewed up but then the answer is to look for another focus for yourself. Or to turn over every stone and I mean every stone looking for supports to bring him home. Probably current supports would be dubious, so you'd have to be ready for that. And you'd have to be ruthlessly focused on your goal which means not wasting any energy thinking about what didn't happen along the way and that's not easy at all. It's just my opinion, though. But do other people tell you any different?

Are you legally his guardian? Because if you have nothing in place, he ages out at 18, and you have no more control over him as you would any other 18 year old child.

In my state people scramble to get this all in order, because if not, your son can tell you to pound sand, or the people/agencies can more or less fluff your off.

If you are not his guardian, legally the group home doesn't have to tell you anything. Have you talked to the home manager?

I think the reason the mental health workers gave him that diagnosis, is it will be easier to move him around in the system. Once you have a diagnosis of bipolar disorder or schizophrenia, it limits where the person can be placed. Those are considered severe psychiatric conditons, and not every group home will take those clients. The staffing ratio is different.

I have heard children getting your son's diagnosis, so they won't be saddled with a heavy duty psychiatric diagnosis.

Do you legally have the right to pull your son out of that home? If you are truly his guardian, you can. You can go there tomorrow with a van and pack up his stuff and go. It sounds to me as you do not.

I have other suggestions, but they hinge on if you legally control him or not.

Im just his Mom...
Ive signed no papers. And he has told his therapist he doesnt want to be there. He tells her he wants to be with People his own age.

Tawaki? is that why they diagnosed him with Impulse Control Disorder yet gave him HALDOL?
Haldol doesnt seem to be scripted for ICD.
So what you are saying is he has one of the BIGGER illnesses and they are treating it but not diagnosing it that way?

So I'm thinking you want him in a different group home and don't feel it's safe to have him home now?

Tawaki makes a good point. Would you want to become his guardian? Or do you need to let other people handle this?

Your name makes me sad. It sounds like you need time doing something that is good for you. The stronger you are the more strength you bring to advocating for your son.

You will always be his mom. Who is handling things like he needs to go to the dentist? He needs to see a doctor? Does the home handle everything or do they have to call you and you have the final say? Who is paying his bills?

Do you have any legal right in your son's care? This is important. You son can say whatever he wants, but others will decide what is "best for him" if he is deemed not able to handle his life.

It might be worth to swing by legal aid and see anything can be done.

Haldol is to shut people up. It is used for anyone who is out of control, drug addicts, alcoholics, psychotics.... Have you talked to the prescribing doctor? It sounds like everyone is holding you at arm's length. I don't know if they can legally do that, or they are just jerks because I don't know your legal relationship with your son.

You big problem is, there are so little services for the mentally ill and adults with autism. In my state you age out at 18, 21 or if you have really on the ball, aggressive parents, 26. The residential treatment places stop at 18 for the state playing the bill.

Do you know of any other homes you can him to? Is coming home an option? Will the home discharge him into your care? Where I live, they would be more than happy to punt an 18 year old behavioral problem patient back into family care. There would be burn marks in the street from the van racing over to your home.

If you don't be a mega b***h, aggressive advocate, no one will more their collective asses. I hate to be that blunt, but having dealt with group homes and nursing homes for 20 odd years that is the only advice I have. My sister and I basically did the leg work for those LAZY social workers and case workers. My sister has 4, 3 inch binders of all the paper work we had to do. We scouted out more appropriate setting for my mom and uncle. We called and spoke to the group home operators. Arranged for all aspects of the transfers. Nightmare.

I really feel bad for you. Our system for the disabled blows chunks, and no one makes it easy to navigate the system.

So last night at 3pm I called the home and asked them if my son was still wanting to go with them to their Fireworks and she asked him and he said he wanted to go with me.
So I picked him up and we went to the fireworks and I gingerly questioned him about a few things.
He was totally checked out. No affect at all, not once did he smile. He sat in the same position all night.
He said the new drugs made him feel loopy.
I asked him if he had told the Dr that the other day at medcheck he said no.
I told him he had to tell his Dr these things, so they know whats going on.
I asked him if he thought he could control himself better, he said 50-50.
They seem to let him sit in his room a lot...
I asked him if he was going back to school for the last few weeks of ESY,
He said "Ill try"...
I asked him what he was going to do after school is over for good.
He said hed see what happens...

I asked him If he could have anything he wanted in the world what would that be....
he said he didnt know.

The spark in his eyes is gone...

I need to find a real psychiatrist and meaningful supports.

I can't offer any advice, but I am very happy that you did get to see your son for awhile. While it doesn't sound like living at home with you right now is the best option, I don't think the place he is in is a good fit. Maybe you can just keep trying to find something that is more age appropriate for him that will be able to address all of his struggles right now. I am so sorry. Reading your story really makes me sad. I am going to pray for you and your son. .In the meantime, try to take care of yourself, and please keep us updated here as to how things are panning out.

The good things....

Your son got out, and "kept it together", even if he wasn't feeling his best. YAY! That's huge.

You could have a conversation with him, and it didn't get nasty. YAY! That isn't easy for even NT teen boys.

Medications making him feel bad. What sometimes happens is the doctor will put a patient on a higher starting dose, and start scaling it back after a few weeks.

I have bipolar disorder. 20 years ago I had a rip roaring mania which landed me in the hospital. I was put on Lithium and Depakote. They said I was an aggressive and obnoxious PITA. I don't doubt that. I can remember feeling doped up to the gills, but I was a safety hazard to the workers, and couldn't be reasoned with. No one wants a broken jaw or arm.

The doctors slow pulled back the Lithium, and I was discharged on just small dose of Depakote. Now I'm not on anything because I dodge my triggers, and am very aware of what can escalate my moods.

I'm sure you son feels like crap because he's not home, he's in a group home, he's 18 and not doing 18 year old guy stuff. I believe your son will not always be like this.

Hopefully once the aggressive behavior cools down, he can be moved to a better home. That is the biggest factor for placement. No one wants their workers hurt.

I thought about you two all weekend, and hoped things would be a tiny bit better.

((hugs))

Tawaki