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Help with on the Spectrum Teen moving in- Questions for the therapist

justmakingthebest's picture

I am having a conference call with soon to be SS's Therapist this week. Just a reminder: he is almost 18, bipolar and autistic- he is on the higher functioning side. graduating HS soon and coming to live with us. He has spent HS with his grandma after BM2 left since SO is military and was highly deployable. I want to learn as much as I can and do the best I can. Please help with questions I should ask.

What I have come up with:

What is acceptable to "force" time with other people- i.e.- eating dinner as a family? OR going to a movie, etc?
What can I expect for him in terms of getting a job? What would be good employment ideas?
How many classes of community college can he take at a time successfully?
Would he succeed taking a class and working part time?
How do I deal with outburst without making things worse?
What can I expect with contributing to household chores?
What do my kids need to know? What boundaries do I need to set with them around him?

Comments

mommadukes2015's picture

I don't know anything about your state, but I can tell you what I know exists out there-

I'll preface this with I live in NY, but every state has some kind of governing agency that oversees fields like mental health (here it is "Office of Mental Health" or OMH) and services for the ID/DD population (In NY it is the Office of People With Developmental Disabilities ie OPWDD).

Within OPWDD there is a myriad of services ranging from Service Coordination (Holla), to Day Habilitation, Supported Employment (SEMP), Community Habilitation (where a worker is assigned to an individual and helps teach them lifeskills outside the classroom/access/integrate into their communities), Respite Services (essentially, down the bare bones, this is supervision when the primary caretaker needs a break and can be in the community or at a Respite Center), Residential Habilitation (a group home) and I could keep going.

Whatever your state calls it's Service Coordinators (Case Managers, Care Coordinators etc) you need to find a way to get hooked up with one. This person will be your best friend and your guide through all of the services that are available to your SS. They will know how to apply for, obtain and maintain these things on Federal (SSA), State, County (Medicaid) and local levels. This is what I do for a living, so I know it's out there and it never ceases to amaze me how long parents go without ever being told that these services exist.

They can help you outline SS's goals, your goals for SS and develop a how-to plan to get you there both short and long term.

I would ask the therapist if they know anything about any of that so they can point you in the right direction.

Harry's picture

Theses questions can not be answer with out spending time with your SS.
You must know what’s he is capable of doing. Can he show up on time. Can he focus on the job given to him
Should be able to do some type of chores

justmakingthebest's picture

Part of the problem is that he hasnt shown any interest in "adulting". I trust my 10 yr old to use an oven but not him. That is just one example. So, I need to know based on his therapist opinion, is he lazy because grandma lets him be, or is he really not yet capable. If he is not able, what is the next step in preparing him for life.

notasm3's picture

Even if this were your bio child in an intact home I would encourage you to use all resources available to let this child become as independent as possible for his benefit most of all. I have many friends with disabled children - it is SO IMPORTANT for these children to be as independent as possible for their benefit.

I've seen extremely disabled young adults be so happy with their independent life. I've also seen disabled children who were sheltered at home until the last parent died who became inconsolable. Even if siblings were more than willing to take over care the extremely sheltered person could not accept change.

Thumper's picture

I HAVE seen the other end where parents hold back a disabled adult kid from being the BEST they can be.

It is very sad....there is little an outsider can do IF the adult disable kid is allowing the parent to rule their lives.

Thumper's picture

No input other than a share.

MY super BFF had a son the same age as your husbands ss18.He was difficult in primary school, not only was there intermittent mild aggression, also, blurting things out that WE think but never ever would say in polite company. He was mostly a polite funny kid. At around 10 years old he was diagnosed with Asperger's. He did graduate HS and my BFF homeschooled him when her and her dh realized the school could not handled him. It was not for a lack of trying on the schools part because they did. Mom and dad believed he was best educated AND more comfortable at home. The teen went part time at local community college then decided he would drop out. One day going to college the next day a drop out.

Anyway HE (the son) was a huge challenge at a drop of a dime. His age, his size as a young man made things very difficult for mom and dad. Having a child with Asperger's is hard NOW have an adult with Asperger's.

Your DH will no longer be able to access any medical information about his son now that he is 18. What challenges will that bring dh? A LOT.

Who takes care of SS18 social security checks each month? What challenges will that pose you dh now?

Are you and DH ready and I mean, really ready to meet the demands of SS18. What about when he becomes physically aggressive.?

What plans has dh made to secure the future of his son? Where will son go IF DH passes away unexpectedly?

There was a documentary titled "Best Boy". Look it up.

I encourage you to watch it sometime. I am not saying your husbands ss18 is like Philly.

Some times things are bigger than we are. Some times we cant see the forest thru the trees.

Sometimes we don't want to see what is best for someone else because we think we know what is best for them.

Best wishes and by the way---Hopefully the Grandparents can continue to enjoy the rest of their days. VERY difficult to raise a grandchild.

justmakingthebest's picture

We already have a power of attorney ready to go in place which will help with a lot of tgis.

MoominMama's picture

I live with a high functioning AS Stepson now 18 (still at school). I have been around him since he was 8 years old. He was very Autistic with a lot of difficult behaviours etc. From the way BM and her family treated him it was aparent that he could do better. DH had tried to improve his behaviour and teach him some skills but BM undermined everything he tried. Her attitude was 'but he's autistic, he can't do anything'.

BM then left DH and of course left both her children with him. She graciously had them eowe. Later, I come along and having worked in education and had training in behavioural issues and therapy plus experience with autism, I could see that a large part of the problems he displayed were behavioral and not in fact due to AS (although compounded by AS). We set about working on these problems, BM of course, set about undoing everything we did. As he spent most of his time with us it eventually began to work. BM did not like this but was too self centered and lazy to do anything herself.

OP - what I would say to you is that grandma has had him for a long time right? She would be the one that I would ask these questions. His school too. A good talk with them should give you a lot of information. Some people seem to have the idea that people on the AS spectrum cannot learn or improve their abilities with regard to social situations, getting along with others etc. How to behave. They can, but it's very slow and needs constant repetition and a LOT of hard work. If you do not keep up with reminders and guidance they immediately begin to fall back.

Do you really want to take on all this responsibility? As a non bio parent it is really hard. I have now mostly disengaged unless his behaviour directly affects me and just give support and some guidance to my DH who is a hero with all the rubbish that boy and his estranged mother throw at him.

It sounds to me as if your SS is likely to be permanently dependant. In the UK only 16% of people on the AS spectrum have a job. Think about this. Do you really want this?

justmakingthebest's picture

Do I want this, no. Of course not. I wish that his son was perfectly fine going off to college and living on his own.

He is a good kid at heart. He is just more like a 12 yr old than an 18 year old. It is what it is. SO is retiring soon and we will either buy a home with a mother in law apartment or build one. Him truly living INSIDE my house is only for a couple of years. We plan on him living as independently as possible. Hopefully with the right occupational training and all the help we can get with social services, etc. he will be out of our supervision within some years. Who knows though?

Grandma has had him for the last 4.5 years. It has been hard on her. She is widowed, so the world revolves around what works for SS, not what works for her. It is easier that way. I totally get it. She should have been allowed to be grandma not the primary parent, but the cards fell as they did. I want what is best for SS and what will be best for my kids and mine and SO's relationship. We are looking at getting married this summer, and I know many people are rolling their eyes thinking I need to run. Here is the thing though: I have been married 2x. To my bio's dad for 10 years. He was suicidal and had terrible PTSD. We didn't make it. It sucked. I married again... he was an abusive son of a b!tch. I did run from true marriage and step-hell. That was how I found this site.

SO and my relationship is the best I have ever been in. He is great to me, he is great to my kids. He is involved in their lives and loves them like his own. I feel the same about his kids. He has great kids. Yes, older SS has some challenges. He has a mouth from time to time. Most of the time it cracks me up. Like when he looked at me across the dinner table, gave a dramatic sigh and said "how long do I have to be social today? I just can't deal with people talking..." - all I could think was "me too kid, me too". We set boundaries, he is respectful. He is good at heart. Drives me crazy with talking about video games because he really doesn't know the difference between fantasy and real life, but we are working on it. This will be a challenge. It will bring stress. It will probably make me cry from time to time. I am not entering with rose colored glasses but when you find a man that is as good as mine, you don't let him go because he has a kid that - through no fault of SO or the kid or even BM for that matter- has issues.

MoominMama's picture

'when you find a man that is as good as mine, you don't let him go because he has a kid that - through no fault of SO or the kid or even BM for that matter- has issues'

I absolutely agree. It is exactly the same for me. DH is wonderful, loving and supporting. I would not want to be without him and have put up with the skids because of this. I helped DH to get SS on the right track mostly because of this. SS was violent etc so something had to be done.

Sounds like you have a good set up in mind, having the mil apartment. At least you should get some peace.

mro's picture

Have you spoken with the special ed department at his school? He should have an IEP (individualized education plan) and have been involved in transition planning since he was 14. You don't just graduate from high school and transition into adulthood without a lot of help in this situation. If he has not qualified for SSI or Medicaid before because of family income, there's applying for that too. As an adult, he probably will be paying rent. If he doesn't, his SSI could actually be reduced.

As far as your questions go, those are good ones. In answer to the first one, he is an adult and I wouldn't force family time on him. A crucial consideration is what kind of supervision does he need and can he be left alone. If he has public benefits, he should be eligible for some assistance from a Medicaid independent provider or agency to provide supervision and assistance with shopping , personal care, etc.

Have you discussed the power of attorney with an attorney? I'm not an attorney but I'd question whether or not it is valid. If he can't mane decisions for himself how can he consent to a POA? An attorney may recommend guardianship instead.

Where is his father? I admire you for taking this on, but this really should not be your primary responsibility. I'm a parent of a special needs adult and I can tell you there are many other aspects to consider.

justmakingthebest's picture

Thank you!!

I have that call this week as well. We are setting up the power of attorney to be signed on his 18th birthday so that we will have control of everything. You are right about the guardianship. I will talk to the therapist about that as well. It may be better than the POA.

His dad is right here with me. He is super supportive and is getting me everything that I think we need, both in support and materially. He has been active duty military for SS's whole life. With his job he has never been the primary care giver. When SS was little SO's aunt came to live with them and help take care of him as a baby and toddler. Then SO married and BM2 was the caregiver. It is fairly typical with highly deployable career fields. My ex had the same type of job. We saw him on average 3 months out of the year. It was a week here a few days there. SO's job isn't like that anymore but it was up until a year ago. At that point we (grandma, SO and I) didn't want to move SS in his junior or Sr. year of high school, the adjustment would be too hard. This will honestly be a lot of learning for both of us.

mro's picture

Sounds like you're on the right track. Yes, I would definitely get legal advice on the POA versus guardianship. POA should allow you to act in his stead, but he will still have authority to make decisions on his own. Guardianship is a more comprehensive deal of course. It has its pros and cons. Without knowing his abilities and behaviors, impossible to say which is best.

Also like some others have recommended, your County Board of developmental disabilities should be involved if they aren't already. You'll probably get more help from them than from any mental health agencies. The mental health agencies are really strapped for funding. The county board of developmental disabilities should assign him a support administrator who can help you find agencies and day programs or work programs. Just be aware, there is an ongoing trend from the do-gooders think that all "institutionalization" is bad to push disabled people out into the community to compete for jobs with more able folk. Don't let them bully you into this if your feel that a more sheltered setting is better for him. It's his right.

Seeing how it goes with you is probably a good place to start before making a commitment to a larger house or in law suite. We are actually going through the same discussions here at my house. My daughter wanted to live by herself and rented a small condo that I bought. It's very difficult for these individuals to income qualify for rentals. It's also often difficult for them to live with roommates who have their own challenges. Preferences change over time and after several years she decided she wanted to live with a roommate again . She's going to give it a try soon. We'll see.

justmakingthebest's picture

Thank you for the tip! I am going to research the board today. We do have a couple of years left in the military before we get our forever home, so we will have time to see what will be best for him. It would be amazing to think that he could have a real apartment or condo in a few years. I don't really see that happening though... We figure even with a MIL suite or apartment, we have 3 other kids that could use it after college or if our parents (mostly his mom) wanted to come live with us we would have space for them in the future.