[Transitioning to Semi-Independent Adulthood]

11 hours ago, Storygirl said:

I wonder if her reluctance to talk about working and getting a job is related to anxiety, because she has no idea how to go about it. I would hope that the vocational training you have planned might help with this, and that they will include instruction in how to apply for jobs, etc., but it's also something that Vocational Rehabilitation can work on. Making a plan for herself might feel like it is Too Big of an ask, so she wants to avoid thinking about it. I would be careful about having any critical attitude when talking with her about this (not saying that you do, just that it would be easy to fall into).

I think you are going to have to build up to the idea of having a job.

* Has she had instruction in financial literacy? So how to handle money, what kind of expenses are involved in independent living, how to make a budget, etc? I would consider that very important and would add it to her studies as a class, if she has not already learned those things.

Not explicitly yet beyond us working a lot to get to the point where she can comfortably pay for items herself, calculate with money, and count change, etc. I'm planning for her to do a Consumer Math program for 12th grade math and then was thinking of taking her through Dave Ramsey's program for teens as an additional thing.

* Does she have an allowance? Does she know how to do grocery shopping? Can she cook dinner for the family? Can she clean the bathroom? Those are skills she needs that you could work on, either by incorporating them into a financial literacy/ consumer ed course, or by requiring them as a member of your household. If she has not had those responsibilities yet, I would carefully scaffold the teaching of the skills, instead of just imposing a "you will now start cooking dinner once a week" requirement. Yes, have  her cook dinner once a week (I had to do this as a teen) and do the menu planning and shopping for it, but teach her how to do it in little bits.

We live 30 minutes from town so grocery shopping with 6 kids is awfully stressful as it is, lol! However, I do plan to walk her through that process once we are living in town. She can cook simple dinners very competently. We're moving towards cooking more complex things like meals with multiple parts and various different meats. She can clean the bathroom. I always have to go back and remind her of things she missed, but she knows how...she just gets distracted. I like the idea of having her shop for and cook dinner once a week and she would love that; she's always begging to cook!

* Does she have artistic skills, so that she could learn cookie  or cupcake decorating? I just read an article in our local paper about someone who opened her own cookie business. She just does special orders and has a booth at a farmer's market, etc., but is doing well. She makes only one kind of sugar cookie but in different shapes, and they are painted (with royal icing) in different beautiful ways. Having a goal of making one product like that, but doing it to a high standard, perhaps could be achievable, and there would be specific steps you could work toward bit by bit.

Zero artistic skills really, but with some practice she could do the kind of cake decorating grocery store bakeries do. In fact we got her a cake decorating kit for Christmas so we're trying to encourage that!

By the way, our state also offers adaptive driver's instruction for those with disabilities who struggle with driving, so you might look into that.

Yep, already on it! Unfortunately, it doesn't start until age 19 and it's only help with the driver's test, not the learner's permit test, which is what she cannot pass yet. Still trying to figure that one out.

I think the idea of having her live independently but within your home is a good idea. I think about this for my son, who does not have ID but has other disabilities that may limit his ability to have a steady income at a self-supportive level (we are hoping he will be able to support himself, but we also feel cautious). I think that the age that someone could live more independently is going to vary and will depend on the development of life skills, such as cleaning, cooking, managing time, paying for some bills, etc. For DS, I expect those things to take extra time, so I anticipate he would not move into his own apartment until some years into his twenties.

Does she want to live in an apartment? If she has goals for herself, it may be helpful to break those down into smaller steps, so that she can see what it will take for her to get there. If she does not have this as a goal for herself, I think those smaller steps are more likely to be driven by you. In that case, you could mention periodically that she will need to know how to do these things "someday" when she is out on her own, but not necessarily make living on her own the goal you are working toward openly. What I mean is that if she does NOT want to move out, she may be reluctant to work on skills that will lead in that direction, in which case I would downplay that as a goal but still work on the needed skills.

Those are just ideas that I think through for our own situation. And it's not just for my son with disabilities. I have to think about preparing my other kids for adult life, too, in the same kind of ways. All of my kids, for example, need to work on their cooking and cleaning and budgeting skills. So I think about those things, and I know I need to add them into our routine at home, sooner rather than later, now that they are teens.

Thanks! These are super helpful to get my thinking jumpstarted and clarify things! She says she wants to move out but only because others have said that that's what is normal. She'll say anything to agree with others. In truth, I think an attached apartment is where she'd feel happiest...still with the family but with more privacy and freedom to make her own choices...and all in a safe environment knowing we're right upstairs/next door to call if she gets stuck.

 

11 hours ago, Storygirl said:

 

 

[Transitioning to Semi-Independent Adulthood]

12 hours ago, Storygirl said:

Have you looked into county services? In our state, what is offered varies widely from county to county. We recently moved to a county known for offering good services, and our school district has helped connect us to (DS14 has an IEP, and connecting to services is part of his transition plan, so the special ed coordinator has been helping us). DS has qualified for vocational rehabilitation, and he has qualified for a state summer job training program that begins at age 15 and has levels of help that step gradually toward teaching the student job skills so that they can eventually be more independent.

I would not have known how to do any of this without our connection to the school, but the services are there.

Is the vocational program she may participate in focused on food services? When will that start for her (here, vocational ed mostly starts in junior year, but you have to apply earlier).

 

We have contacted the local department for Rehabilitative and Vocational services and talked with them at length. They said they can start helping her this coming summer, but most of their programs would require her to stay overnight at the training dorms for 2 weeks at a time or more. I'm uncomfortable with those kinds of overnight stays in a group environment where we don't know the supervisors or the other attendees. She's very naive despite our attempts to teach her basic self-advocacy and get her just a bit street smart (without shocking or scaring her) and is easily manipulated. They also provide driving programs but you can't be eligible for them until you're 19 so she's 2 years away from that.

She's not in a vocational program. That's just the name for the easier diploma track. The local school has a culinary arts one but she won't be eligible until 11th grade. We plan to try that in 11th or 12th grade for her. Odds are she would fail out again (it's made for average kids), but I'd like to at least give it a try and she's willing.

[Transitioning to Semi-Independent Adulthood]

5 hours ago, Lecka said:

I also think, if you are calling the right agency, it is time to complain.  Calling for two months is ridiculous.  

You can complain from... their parent agency, up to your state legislator.  

It is just ridiculous.  

 

Right?! I'm ready to complain too but my husband is always super hesitant to rock the boat.

[Transitioning to Semi-Independent Adulthood]

12 hours ago, Lecka said:

What state are you in?  I happen to be in New York, and here for the Medicaid waiver, you don’t go through the Medicaid office at first, you go through an agency — there are different agencies (like — there are 2 I could pick from) and you start with them and they help you do a packet and then they are the ones to send the packet to Medicaid, then we wait for a letter from Medicaid.  

But basicall I cannot call the Medicaid office, the person from the agency can call the Medicaid office.  

So if you happen to be in New York, the process is like this.

Is there an ARC near you?  Just if there is, they are a place to try to call, to ask if there is a weird process where you are.  

Where I live, there is a woman who covers a region of the state and part of her job is giving information sessions about how you enroll for benefits.  And then after that to do self-determination (here there are basically two choices, one is enrolling in a day program, and one is self-determination).... you have to attend a 1-hour information meeting, I think they were scheduled about once a month for a reasonable drive for me.  

But this all depends by state.

Is there any way you could be working with your school district because they are supposed to provide transition services (transition-to-adulthood) and I know where we used to live, they would help with filling out paperwork for state programs.  

Just to explain a little more, it has been like this in both states I have lived in..... to some extent, if you are applying for a “waiver” (like an ID waiver), then you are applying for a “waiver program.”  So you apply first to the “waiver program.”  

So you don’t apply to Medicaid for the Medicaid funded waiver program.  As much as this would make sense lolololol.  You apply to the program administering the waiver.  Which could have a different name.  It could be a state agency or it could be a private agency that administers a program.

Be aware in some states they do not fully fund their waiver programs and you go on a long waiting list.  In other states they have great funding.  

Good luck.  My top advice is to call ARC, any organization about a disability, or try the school district, and get help figuring out how this paperwork works.  

Just for example — my son has autism but I went to an information session held at a place that had Cerebal Palsy in the name, because it works that way here.  In the neighboring county I would have gone to an ARC.  Now his agency (which most with autism pick) is called Disabled Persons Action Organization.  

So I would actually start by filling out intake paperwork with them to apply for the Medicaid waiver.  

Good luck!!!!!!!  It is so hard to figure this stuff out!  

For us too, in the counties in this part of the state, there will be one city per county that has these kinds of offices, and so you may not live that close.  But a lot can be done by phone and for my son right now they will come to us.  They have to see him in person once every 3 months or something, but right now they go to his school and see him there.  But over the summer they do have to see him by making arrangements with me, but they can come here, I don’t have to drive him.  

But anyway — it may depend on just where you live.  I hear about county disability boards on here, but I have not lived a place that had them.  It will just depend.  

 

We live in VA and we did contact the agency in charge of it (I forget at the moment, but it's a long drawn out name). She was in public school and their transition services were basically nonexistent. They offered nothing but focusing on graduation, self-advocacy for her hearing impairment, and they really wanted her to learn how to use a chromebook (which she used to play kindergarten games online rather than do schoolwork). We are in contact with the department of rehabilitative services which is what the school would have connected her with by senior year, but they can't do anything with her until this coming summer (apparently they have to be 11th grade and up).

[Transitioning to Semi-Independent Adulthood]

14 hours ago, DawnM said:

I was in your shoes when my son was 17.  

Is she working with a therapist?  Does he/she have insight?  

Each child is so different, it is hard to put perimeters on exact milestones that should be accomplished.

One thing my son's therapist told us was that he was 3-4 years behind socially and emotionally, and in some cognitive ways.  That helped ME to slow down......when he was 17, I expected him to achieve what a neuro-typical child would achieve at 13-14.  He is now 21 and we are seeing more of what a 17-18 year old would be like.  That is now in MY head, completely acceptable and reasonable, given his limitations.

I don't know any resources for you as my child has Autism, so my resources are about Autism.

Does she qualify for Job Corps type program?  My friend's son did, he has Down's.  They put him up in a shared apartment and helped him work 20 hours per week.  They also taught him life skills.

 

Thanks! You know, reminding myself that she's mentally only 12-13 is actually super helpful! I just wish legally she wasn't going to be 18 in 10 months 😞

I didn't realize Job Corps could accept students with significant disabilities like that! Hm, that is definitely worth checking out!

[Transitioning to Semi-Independent Adulthood]

My daughter with mild intellectual disability, hearing loss, adhd, etc. is 17 now and I am officially freaking out about transitioning her to adulthood. Right now she's in 10th grade (she was held back in 1st grade when she lived with her birth family before any diagnoses).

Currently she is enrolled in Seton Home Study and on track to get some sort of Vocational or Standard diploma there. She's doing 5th grade Science and Religion, Pacemaker's Pre-Algebra (very remedial - she was doing Math U See successfully but started capping out in Zeta so we switched gears), Writing Skills 1 (by Diana Hanbury King), and reading middle school level books and writing adapted book reports or doing multiple choice tests on them (Little Women, Anne of Green Gables, Harry Potter, Misty of Chincoteague, etc.) Some literary concepts definitely go over her head, but she's comprehending them reasonably well and enjoys reading them. She should graduate at 19.5 years old right now. She tried twice to get a Learner's Permit and failed the test both times so we're putting that on hold and maybe have her try again in a few years but we're assuming now that she won't be able to drive.

So! What is the next step? Our relationship is strained lately because she feels like we expect too much from her and she acts like it's a personal affront any time we mention her getting a job someday or anything. She wants her own apartment after high school and is adamant about that but has no desire/plan to work really so, um, short of us winning the lottery that's not happening, lol!

We're looking to buy a house with a basement apartment with a separate entrance.

If we are able to find one, when would be a good age/stage to transition her to living semi-independently in an attached apartment vs a bedroom in the main family home?

Also, we started the process for SSI and that has been SLOW. We have tried to start the process for the Medicaid ID Waiver and they haven't called us back...it's been like 2 months of us calling regularly trying to catch someone. Even if she does get SSI it looks like it's a tiny amount, like $500/month, so definitely not enough for her to rent an apartment ever.

She wants to be a baker. I think maybe that'd be possible, maybe not. I'd like for her to try at least and our small town community might support her in a home-based endeavor where she baked cakes for people's celebrations, extra treats, etc. I'd have to do all the business end but she could do the cooking just fine. I've also thought she might enjoy working at Subway (cooking...but not totally, lol!) or a pizza restaurant (again, sort of cooking but with a set recipe/repetition), or a coffee shop/bakery but don't know how to get her there.

Anyway, what would you prioritize at each age? Where is the magical checklist of things to teach/do/prepare at each age for a teen with intellectual disability? 😛

For example, this year at 17 I should focus on ............

Next year at 18 I should focus on............

After graduation I should focus on............

Also, anyone have great blogs, books, articles, anything that can help me envision what life might look like for her as a young adult with mild ID? I need encouragement and inspiration for sure!

[High School Diploma for Special Needs Student]

I have a 17 yo DD with a very similar profile to your son's! (mild sloping to profound deafness in both ears, borderline intellectual disability, adhd, etc.) I suggest either just issuing him a parent homeschool diploma. He completed the work, he's clearly capable in language arts, and he needs the piece of paper. Public high schools issue diplomas to kids with special needs who are lower functioning than your son all the time. For kids like your son and my daughter, they often offer "creative" ways to fulfill the requirements for graduation (they lower the graduation score requirements, offer alternative math courses, etc.)

Now, if the trade school or whatever program you're thinking of for him might put up a stink about a homeschool diploma, you could always enroll him for 1 year in a distance learning program. Seton Home Study (a Catholic option, though I think they'd work with a non-Catholic student?) does this regularly through their special services program for young adult students who for whatever reason were unable to get a regular diploma during the usual high school time. Then there'd be an accredited school saying for sure that he met the requirements and that he has graduated high school. This is what we're doing for my own daughter because with her level of functioning I know she wouldn't be able to argue her point if an employer or trade school ever put up a fuss about her homeschool diploma. So she'll get a Seton diploma which will be nice to have.

However, I really think in your situation you can just issue him a homeschool diploma dated to the year he 'graduated' (18 or 19 years old) and let him use that. 9/10 times that is all people want to see and the young adult is good to go. Type up a professional transcript yourself too. Simply code courses as "English 9, English 10, English 11, English 12" and "Basic Mathematics, Algebra I, Consumer Math" and so on. No need to worry about the specific books he needed to use in each level. We're doing middle school novels and a remedial writing course this coming year but it'll still be "English 10" on my daughter's transcript.

And I hear you on SSI and everything being a pain. Hearing aids aren't covered here either, which is really rough! They were covered 100% in our prior state :/  And the SSI amounts are awfully minimal and all. We're like you and really aiming for our daughter to be as self-supporting as possible because to live on SSI she'd definitely need to live with us AND seek other sources of aid, all of which I'd need to do for her since she wouldn't be able to navigate the system (I have a college degree and it makes my head spin!).

Good luck, and I hope you're able to get him everything he needs to get into a training program!

[Pre-Algebra with a Mild Intellectual Disability]

39 minutes ago, PeterPan said:

Have you looked at the Walch Powerbasics?

 

Oh my goodness, I had looked at them ages ago but it wasn't the right choice at the time for what we needed. However, looking at their Algebra text it actually looks like something DD16 could do next year. Thank you so much for reminding me! I'm going to check out their Basic Mathematics curriculum as a Pre-Algebra option too. Have you used their curriculums before? 

[Pre-Algebra with a Mild Intellectual Disability]

My daughter, 16.5 yo, 10th grade, is finishing up Math U See Zeta (decimals) and is struggling big time. MUS worked beautifully for her from Gamma through the first half of Zeta. But now she's struggling with the concept of decimals. She keeps making illogical mistakes and is struggling to understand the more complicated stuff (multiplying, dividing, solving for the unknown, area of a triangle, etc). She doesn't understand equations...that the letter represents a number we don't know. My other kids love this concept, they think it's fun to figure out the "mystery" number "hiding' behind the letter. Oh well! Also, the place value of decimals is really eluding her in spite of all the hands-on manipulatives and explanation from both myself and her tutor and the MUS program videos. 

In any case, I had planned for her to use MUS through Algebra. I knew Algebra would be a bit of a stretch, but doing it in her Junior/Senior year with lots of help I figured we could make it work and then she'd be eligible for a regular diploma from Seton Homestudy. Unfortunately, if she's struggling this much with Zeta I'm afraid Pre-Algebra might be where she tops out. 

I really just need something good enough for basic high school credit so she can pass and move on to consumer math. We've already gone back to the start and remediated with her...I'm not planning to do anymore intense remediation as our big goal now is to let her move on with life and get to working in a culinary job or hair salon. For that she just needs a high school diploma ? 

Does anyone have recommendations for Pre-Algebra/Algebra curriculums that are more approachable/basic?