transition planning???

[me-n-mykids]

How do you help a child transition into adulthood and the working world who is extremely afraid of the future and automatically shuts down when the future is mentioned or is just asked what kind of job he wants?

Any suggestions?

Michele

[JanJT]

Hi Michele -- I have some ideas, but first, a few questions -- how old is he, what sort of program is he in (e.g., mainstreamed, special ed, half and half), and is he fearful of other things as well, or just this particular topic?

-Jan

[me-n-mykids]

Hello Jan,

I really hope that you can give me some ideas to pass along to his IEP team.

My son is 17 years old.  His teacher wants to focus on Vocation and Avocation for is transition plan.  I fear that using the words "job, work, future, change" or phrases like "what are you going to do when..." and "How are you going to earn money..." or "What are you going to do..." will send him spinning.  He has told me that he is scared of school, but couldn't tell me why.  His concept of time is Yesterday, Today and Tomorrow, and he cannot picture into the future. 
I feel because he is deceptively verbal that his teacher may get the idea that he can do more than he actually can.  This creates a big problem.  We tried this last year to put him in some Gen. Ed. classes with some supports, but he wasn't doing really well.  The US History teacher wanted him to scan the pages in the book to find answers, but his eyes are physically unable to perform that task.  (His tracking was tested and was equal to that of a 7 year old.)  Try as I might, I could not get the teacher to understand this problem.  At this time my son is on a Home-Hospital IEP due to severe depression and the time to stabalize his medicine.   Any Ideas are welcome since we have to create a plan for next year and re-integrate him back into the school setting.  He has been out since December.

He does have a lot of other fears.

Michele

[me-n-mykids]

Hi Jan,

Well, Now my son is afraid of leaving the house.  He went to sit by himself at Safeway and some one tried to sell him drugs.  He said " this is supposed to be SAFEway." 
He is also now scared of the color orange.  The kid who tried to sell him drugs had an orange cast on. If I don't remove everything orange from his line of site he whines and stares at it until I move it.
Any ideas for this one

Needless to say the weekend has been stressful.

Michele

[JanJT]

OMG...just what you both needed, some punk making life harder! Arg!

Okay, so the current presentation and his amped up anxiety mean that it's probably NOT a good time to be working with him on transition. But...

A couple of things -- make sure you are IN THE FACE of his attending psychiatrist and tell him that your son is now on the verge of a panic disorder with anxiety. Depression often follows long-term anxiety, which seems to describe your son. Yes, the anxiety is (partly) due to the AS, but it needs to be treated aggressively -- as does the depression. He may also be a candidate for a mood stabilizer as well, at least for the time being. The bottom line is you need to get him to a point where he CAN function emotionally, so that he can re-engage with the world. This may take a month or two, so again, get the attention of whoever is handling his meds and make it clear that they are NOT WORKING WELL ENOUGH.

In the meantime, do your best to not allow him to go into 'fear mode' -- without sending him over the edge. So, conversations look like this: "Hon, I'm going to Safeway, and I'd like you to come with me. Remember, what happened before is RARE, meaning it PROBABLY WILL NOT HAPPEN again, and even if it does, we talked about what you do. I'd like you to come so you can pick out your favorite cookies/cereal/whatever, because I can't do that without you. Are you ready?"

The 'conversation' should follow this rough outline:
1) State what behavior you want (come with me)
2) Remind him that it is safe, and that he can control the situation if it is not safe
3) Give him a reason to want to go (ah, bribery...)
4) Restate what you want him to do (get ready to go)

Don't argue. Don't raise your voice. Don't belittle him. f he chooses to not go, tell him that you will not pick out his favorite whatever, but that's okay, he can do so on another trip. And then LEAVE if it's safe to do so.

WRT the orange...I would just repeat -- ad nauseum if necessary -- that it is JUST A COLOR and will not hurt him. In fact, if he responds to humor, you can use humor to get him 'over it' -- like, "Oh my god, look at the purple grapes! They're PURPLE! Oh no! They're going to attack you...aiiiieeeee! Oh no, now they're attacking me!" ASD kids CAN see the humor in their foibles and perseverations, and in fact, it's a tool I use FREQUENTLY with my own Aspie and with my clients. If you're laughing, it's hard to be scared.

As to his whining and staring -- I don't know your son, but you may just need to let him whine if he is really in no danger of going into a psychotic break over the darn orange clock sitting on the desk. Tell him, "I am aware that you are whining over the clock, but I know, and YOU know, that the clock is not going to hurt because it is orange. I love you, but you need to get over it, because I am not going to respond." If he responds by throwing the clock across the room, which pops into my head as a possibility <grin>, tell him to pick it up and put it back, and walk away.

I know that he really does have these fears, but to the extent possible, and in a kind but straightforward way, you need to try to have him cope with them. If you remove all of the orange stuff in the house, you are in effect reinforcing the fearful behavior (damn psychology), and I know that's not your goal.

As to transition -- my first thought is that your son needs to be in a school that is better suited for him. Clearly, his school is very much missing the mark with him. I would STRONGLY urge you to look into a residential school for Aspies, hire an educational advocate, and then put then make your district pay for it. It's a huge battle, but if you don't have the financial resources to pay for a private school yourself, it's the alternative I would recommend. He will do FAR BETTER throughout his adult life if he gets the help he needs now, before he turns 18...

Let me know your thoughts, and in the meantime, take good care of yourself. This IS very stressful!

Best,

Jan

[me-n-mykids]

Just to clarify.
My son has Autism- however is High-Functioning, but not as high as Aspies.
A residential school is not an option at this point.
I am trying to get started with a behavioralist, but is a slow start.
I am totally stressed out!!
i CAN'T GET AHOLD OF ANY SUPPORT PERSON - THE DIRECTOR OF THE CHILDREN'S CENTER SAID THAT THE PROBLEM IS ONE THAT HIS COUNCELOR NEEDS TO ADDRESS AND NOT THE PSYCHIATRIST, BUT SHE IS NOT IN UNTIL TOMORROW AND LORD ONLY KNOWS WHEN SHE WILL CALL ME.
mY BRAIN IS SCREAMING!!!!
BUT WITH NO SUPPORT FOR ME AND ME BEING THE ONLY SUPPORT FOR HIM IT IS NOT A GOOD THING .  SORRY. ESPECIALLY IF I SEEM AGRESSIVE.  JUST NEED TO TALK THIS OUT WITH SOMEONE AND IT IS LIKE NO-ONE GETS IT OR NO-ONE IS AVAILABLE.

[Jen]

Michele,
Sorry, I have been out of town and out of internet and just now saw your posts. I am so sorry you are having to deal with all of this. I will see what I can find resource wise. A friend of mine and another member of this forum, Kristi Sakai, lives in the Northwest and might be able to give you some info on help in that area- her email is under her membership name or on her website at www.kristisakai.net . Please know we are here to support you, you are not alone!
Take care of yourself and hang in there.

[me-n-mykids]

everything is crazy right now.  Hopefully when I can arrange for Zac Carr to work with him things will smooth out.  Oh and his counselor never did call me and I left a message on tues, weds and thurs.  Really great support HUH?  I just feel like they don't care if he goes postal or not.  I guess they only pay attention when he throws a postal nutty while he is there.  Tonight he is extremely depressed and tired.  I don't know if it is the come down from the anxiety or if this is just him letting his gaurd down.  He has been sleeping alot lately too.

I just hope we can get him evened out enough to send him back to school next year.   We might just have to have him stay in one room, but I don't know.  I'm just the mom. 

We do have an IEP meeting on Monday to get the ESY added into his plan.
From the sound of it they are going to approve 4 weeks, 3 hours each week for his teacher to come out and work with him.  It will mainly have an academic focus, but his teacher is really good at being creative to get the academics in under his radar.

Hope all was well on your trip!

Michele

[JanJT]

God, Michele, this is really too much for anyone to cope with, and I'm sorry that you aren't getting the local support you need. It's unconscionable that the school district isn't doing more and that no one got back to you last week. I know you have enough on your plate right now, but if you have any energy, I'd write a letter of complaint to the center, and I would send a copy to the state licensing board. Here is the contact info for the state board:   

--------------------------------------

Washington State Department of Health
Health Professions Quality Assurance
310 Israel Rd.
Tumwater WA 98501
- If your complaint involves a health care facility, please
    contact:
             Department of Health
             Facilities & Services Licensing
             at 1-800-633-6828
-------------------------------------------------

I would strongly urge taking the 30 minutes or so to compose a letter, outlining everything that has happened to date, how many times you have called, what the response has (or hasn't been) and what is happening with your son. The board will take this seriously, and will contact you with suggestions and requests for more info. It is their job.

The center will get the message LOUD AND CLEAR that you mean business, and they need to get off their butts and help.

WRT to the IEP -- remember that 'throughout the school day' means all aspects of your son's daily life, NOT JUST ACADEMICS, so it should include his interactions with others, his ability to take care of himself, get from one place to another, have some socialization time, organize himself, etc. From the way you describe it, his focus should be on just maintaining, not on academics. It's great that you've gotten four weeks, but that begs the question of what you will do for the rest of the summer. Just because they don't have the services available that you need is not an excuse to not provide them -- legally, if your son needs 1:1 for the whole summer, they need to provide someone to work with him. Can you at least get some respite care from your regional center? You need to have some time to yourself.

The behaviorist should help, because this appears to be the brunt of the issue right now.

I wish I could at least be there to hold your hand, Michele. But do know you have a lot of encouragement and support from the folks on this board. If there is something any one of us can do, just ask. We have all been through this, and it does take a whole darn village to get through it sometimes!

Best,

Jan

[me-n-mykids]

Well, Yesterday Christopher told me that Orange was OK if it was edible.  But other orange stuff was dangerous.

He does have an appointment with his counselor on thursday if nothing else happens to cancel that one as well.
We are actually only going to that center, because it was the only way we could get into see Dr. Lam, who is well known up here for his knowledge on autism and cooccurring illnesses.  But when the Center Director screens all of the doctors calls and determines if they are important enough to give to him or pass it to the counselor.  I don't know It just seems wrong.

I'm going to ask the doctor if there is some other way that I can contact him, since this happened and no-one is wanting to deal with it.

I already know that the school district will say no to a 1-on-1, not just for the summer but for all areas.    I do know that there will be a new LifeSkills teacher next year and I am hoping that this teacher will "get" as in understand my son.  Not many people do.  I always tell people that my son has a remarkable talent for rubbing people the wrong way.  Most people end up butting heads with him and then it becomes a power-struggle and a lost cause.  The one thing that I have learned in dealing with my son is that you have to be the one who changes, because he can't.  I had to change the way I thought in order to get along with him, in essence I had to try ans see things the way he saw them to understand where his perception of events came from.   And we all know that those darn autism lens can be tricky.

I am hopeful that we will be able to start with "Behavior as Communication" this week.  Well at least start the evaluation anyway.  Zac is Awesome and well worth the time, money and energy that is invested in him developing an individualized plan.  And he will even train the teachers, as well as totally immerse himself in life of the kiddo during school hours and after.  He trains the family Too.  He put 110% into every plan he makes.

Thanks,
Michele

[JanJT]

One of the hardest things to help people understand is the uselessness of arguing with someone who has a different 'reality' -- whether they are autistic, schizophrenic, bi-polar, whatever. If someone sees blue as green, it is fruitless to argue with them that blue is blue and not green. We are in effect trying to 'impose' our reality on them, and guess what? It doesn't work.

The good news is, is that the college students who are studying special ed now are going to be far better and far more sensitive to our kids than many of the current crop out there today. Sadly, it won't help our kids, but it will help those who follow.

Best wishes on your IEP on Monday. I'll send a passel of good thoughts northernward!

Jan

[me-n-mykids]

Thanks for the good thoughts.  I am sure that the IEP meeting will go OK.

We do have a Neurologist appointment this morning.
That appointment is usually pretty short.
I'm not anticipating any huge problems there either.

Things are not yet back to normal, but I think that it will take quite some time.
He is really depressed, as well as High anxiety.

Thanks everyone for letting me go postal on here during this last week.
There was just no one here that I could depend on for support.
The man that will be working with Christopher was out of town for the past two weeks helping other kids in crisis,  otherwise he would have been available.

talk to you later and thanks again,
Michele

[me-n-mykids]

Hello,

I just wanted to let you guys know that the IEP meeting and the Neurologists appointment went well.

At the IEP meeting I asked the teacher if we could up the time from 3 hours per week to 4 for the 4 weeks that she will be coming out.  She said that she would talk to the Special Ed director.  I know him and he is an OK guy, but I don't know whether he will approve it or not.
I will also talk with Zac on friday about what he can work out for Christopher and also if he can help with the transition back to school in the fall.  The teacher said that she would definately take his reccommendation into account when planning Christopher's day.   I also took a list of things that Christopher and I compiled for his safe area.  She said that it was totally doable.  We'll see if there is follow through.

The Neurologist said that things were looking good and that as soon as Christopher's other meds were stablized we could look at trying to wean him off of the depakote.  We are hoping that he outgrows the seizures.  I told the doctor that he hasn't had any of the motor seizures since we uped the dose and that he only had one episode Peite-Mal within the last year and it was because of the new strobe lights that they are putting on the police cars now.
We also talked about the possibility of switching him over to Lamictal if seizures are still present when we start weaning him off of the depakote.

I also told the doctor that if Christopher did have a motor seizure that I now have a video camera and could tape it so he could see him going though one of these.  We are not sure if they are a seizure or an autistic escape, it could be either. 

That med thing won't happen for at least six months.  I told the doctor that I want the other meds stable first and he said to call him when we feel that the meds are OK and we will talk about it.

So everything there went OK as well.

Hopefully the rest of the week will be good.
Christopher was really tired and the doctor did say that depression probably still a huge part of what is going on.  I have ANOTHER call into the Psychiatrist to discuss his medicine.  Right now he is on Abilify, Trazadone 1/2 tablet, Concerta, and Lexapro that the psychiatrist is dealing with anyway.  My son also has to take fiber, vitamin A, benedryl (in addition to the trazadone to sleep), Depakote and Carnitor.  Every once in awhile I have to give him a few days worth of Dolcusate (Stool softener) or he will be spending up to 45 minutes in the bathroom.

Well I guess that is enough rambling on for tonight.
I really do apprciate the time it takes for people to read and comment.
I am really searching out some support of any kind and just being able to spell it all out helps.
Thank you so much for being here.

Michele

[me-n-mykids]

You'll never guess what my son said this morning.
He came out of the bedroom and said that he couldn't find a short sleeve shirt that was not tiedye.  I remarked "I thought you liked tiedye." He said "Tie dye has orange in it."

So much for thinking that he was working himself past this.
That will teach me.

Michele

[JanJT]

 

I'm sorry, Michele, but I'm laughing because our kids are so damn impossible some times!

Something I tried with my son many moons ago worked in a situation much like this. I'm a bit creative, and so when he went through a phase of being fearful of germs (which really scared him because they were invisible), I wrote a short story on the computer, got a few pieces of clip art, and printed it out. I read it to him about 5 times over about two weeks, and the episode was over.

The story was funny, and talked about a 'good germ' named Al (for Alimentary Track) and how he was scared for his life because all of these humans were trying to kill him and if he and all the other good germs died, how no one could poop any more, and they'd all get really sick.

I know your son is quite a bit older, but you might ask him something like -- what about rainbows? How do we get the color orange out of rainbows? Would it still be a rainbow without orange? Something to reframe the fear, generalize it out into the world.

Anyway, hang in there...I'm glad the meetings went well, and hope that you can get some much-needed help and respite. Feel free to dump any time -- we ALL need it!

Jan