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Adventures in atypical apartment living

In this very early post, I promised to write about how we found an apartment for Nathan when he turned 18. What follows is the story of how our family handled this transition to independent living.  It involved some risk and significant expense – but the progress we’ve seen in Nathan’s self-reliance has been worth it.

The apartment search for Nathan took place in the summer after he graduated from high school. To give some perspective of what else was going on at the time: our regional center had decided he was ineligible for their services, as described here; the Dept. of Rehabilitation was in the process of deciding whether he qualified for their employment assistance, as described here; and we’d just started the application process for SSI benefits from Social Security, as described here.

Nathan wasn’t interested in looking for a place to live. I was forcing the issue, mainly because I felt that being on his own would help him transition to adulthood (= “grow up”). We also wanted his younger brother Alan to have a more stable home environment for his last years in high school, without his brother continually at home.

But would moving out be too much of a stressful change for Nathan? He had already told us that life was barely tolerable. If it got worse, suicide was his out. While this was a huge concern, ultimately I felt that our home life shouldn’t be forever warped with tension and turmoil because of something Nathan might do if he could no longer live with us.

So that summer I looked at rental listings, called some landlords, and visited the more promising apartments. My search was a balancing act between “low rent” and “safe environment.” Also, we wanted a place far enough away that he couldn’t just show up on our doorstep, but close enough that we could get to him quickly in an emergency (Nathan has never learned to drive, and doesn’t want a bicycle).

Understandably, most landlords I talked to were reluctant to rent to an 18-year-old unemployed male whose parents were doing the legwork for him. A couple of landlords seemed agreeable, but the units they showed us had one or more deal-breakers (such as no bathtub: probably due to sensory issues, Nathan is not a shower-taker).

I must have looked at 15 or 20 listings over several weeks before seeing a “For Rent” sign on an old apartment building with 6 units. The building was not too far from where my husband and I work (which was 5 miles from home). The rent was at the high end of our range, but the neighborhood was pretty good. The landlord agreed to show us the unit, and it met all of our criteria.

Naturally, the landlord (whom I’ll call “Craig”) asked about Nathan. We explained that he is very quiet, no drugs, drinking or smoking, but he has Aspergers and needed to become more independent.

We waited while Craig absorbed this. He slowly started nodding his head. “Okay, I get what you’re talking about: I was a Psych major in college. I’m willing to give this young man a chance, but I’d like to meet him before we make it a done deal.”

If it had been a TV show, the music would have started swelling in the background. Things were looking good, at last!

We met Craig at the apartment again a few days later, with Nathan, who was his usual expressionless self. He answered Craig’s questions as briefly as possible. The landlord was satisfied to proceed with “our little experiment” (as he termed it), and my husband signed the month-to-month rental agreement.

We moved Nathan in a few weeks later, giving him hand-me-downs, and housewares from the dollar store, for essential supplies. We did not provide him with a TV or a computer, but he had his handheld video game system. Nathan was pretty quiet while we packed, moved, and unloaded. When at last we were ready to leave him at his new place, he busied himself placing his books on the bookshelf, not making eye contact with us as we said goodbye and closed the door.

By previous agreement, Nathan had an overnighter at home two days later. I thought that might have been too early, but it turned out to be a wise choice – with a longer wait, too much negativity and anxiety might have built up. As it was, Nathan was proud he had lived on his own for a couple of days. He told us he didn’t like his apartment, but didn’t fight us about going back to it the next day.

We developed a routine where he could come home with us after work on Wednesdays, use the TV and computer until bedtime, and get a ride with us back to his apartment the following morning. As time went on, we’d also pick him up on the weekend for a day visit home.

After several months of this, Nathan asked for more time at home during his mid-week visit. I said, “To do that, you’ll have to learn to ride the bus.” He did. That allowed him to catch a bus in the morning, be at our house most of the day, and either ride back with us in the morning or catch a bus later. It was another step forward in Nathan’s self-sufficiency.

In the first couple of weeks on his own Nathan didn’t go out of his apartment much, but eventually he got into the habit of walking to the library (to read their manga collection), the YMCA (where he could watch TV while using the treadmill), and even the video game store and the bookstore at the shopping plaza a few miles away. Sometimes he’d take a walk at night if he was having trouble falling asleep. One benefit from all this walking, which wouldn’t have happened if he’d lived at home, was that the exercise did his mind and body good. We believe that over time it has helped stabilize his mood.

Our routine for Nathan included a weekly visit to the grocery store. We’d give him a set amount of money, then wait outside while he bought the food he wanted. What he buys is mostly packaged food and sweets – the only cooking skills required are turning on the oven or boiling a pot of water. (We try to provide healthier food for him during his home visits.)

The grocery store closest to his apartment is about a mile away. After a time, we proposed buying him a folding grocery cart – known in my family of origin as an “Ethel” – so that he could go get his groceries on his own. He agreed, and this arrangement has worked well. Having worn out the wheels on his first one, he’s now on his second “Ethel.”

Our makeshift system for independent living has worked pretty well, but it hasn’t been all sunshine and roses. For one thing, Craig got miffed when Nathan refused to make eye contact or give an answer to his cheery “HI NATHAN, HOW’S IT GOING BUDDY?” We had to explain that dialing it down would get better results – and over time, it has, to the point where Nathan now politely telephones Craig if he needs something. We also know that Craig is concerned about complaints from the other tenants (all of them are young adults with jobs). So far, no one has said anything bad, and some of his neighbors even invite him to parties and so forth. Nathan doesn’t attend, but we appreciate the gesture.

The biggest problem has been Nathan’s lack of cleanliness. While living at home, Nathan had done cleaning chores, but now he refused to apply those skills in his own place. I only went into his apartment a handful of times in the first few years, but each time, I was appalled at what I saw. Among the untidy offenses: papers, cardboard boxes, and crumbs everywhere; his psychiatric meds randomly strewn about; unwashed dishes and utensils, used over and over; boogers wiped on the walls and door frames; and a kitchen sink that was no longer white.

Reminders and nagging about cleaning did no good. However, two incidents brought about improvements. The first incident was a random cockroach rustling through the papers under his bed one night at 3 a.m. This freaked Nathan out. (I know it did, because I got his freaked-out phone call at 3:30 a.m.) With my help the next day, Nathan rounded up all the papers and boxes from the floor. (Additionally, in an act of true motherly love, I searched for and killed the intruding insect.) In any event, Nathan has never again blanketed the floor with papers.

The second incident was around the same time, when Craig and his handyman entered the apartment for a minor maintenance task. Upset by the sights and smells, Craig told me that unless we got the place cleaned up and kept it in better shape, Nathan would have to leave.

By this time, Nathan had grown accustomed to his apartment and didn’t want to relocate. So we did a major clean-up, and now I clean the place once a month. (Conversely, to earn computer time or extra pocket money, Nathan helps clean our house – and does a good job. For some reason, he finds this more tolerable than cleaning his own place.) Because his worst habits have fallen away over time, there has been less cleaning for me to do on my visits. This is a very good thing.

There have been other changes since we started “our little experiment”. For one thing, Nathan now receives SSI benefits. The monthly check pretty much covers his rent and food. Yay! Another change is that a few years ago my husband and I moved to the town we work in. As a consequence, Nathan is now able to walk to our house. He has matured a lot and respects the boundaries we’ve set about coming over. It’s been working out fine.

For the most part I am relaxed about Nathan’s living situation, proud of the advances he’s made, and hopeful that more growing up is yet to come. By no means am I suggesting that what we did is what every family can or should do. We winged it, and stumbled upon a workable solution for us. Still, I am aware that we might need housing alternatives in the future if something goes off the rails.

 

 

 

Yes, there ARE more residential programs!

Many months ago this blog had a couple of posts (6, 16) lamenting that residential programs for teens and young adults with mental health challenges were scarce – at least, I couldn’t find many – and expensive. The “expensive” part is still holding up, but recently I have learned about several more programs. How satisfying it is to find what you’ve been looking for!

The path to this discovery started years ago in, of all places, a waiting room.

In this case, the waiting room was shared by a psychiatrist and an educational counselor. Waiting rooms are usually lacking in charm, but one potential point in their favor are the magazines we might not see otherwise. The issues of Psychology Today on the side table here had many articles I found interesting, about everyday psychology as well as the types of things we were in that waiting room for. I ended up making this one of the few magazines we subscribe to.

The current issue has a special section called “Treatment and Program Guide” in the back, presenting information on 40 facilities in the US that offer treatment for substance abuse. Thankfully, our family is not confronted with addiction, but I flipped through the section anyway. And, Eureka! While some of the facilities specialize in addictions of various sorts, others treat “co-occurring disorders” or those with “dual diagnosis” (both of these terms mean mental health challenges occurring along with addiction), and in some, treatment is targeted for young people like those who are the focus of this blog.

Some of the places in the Treatment and Program Guide that serve young people are therapeutic boarding schools. Some of these schools also offer a transition program for those who have finished high school. Other programs don’t have a school per se, but provide transition support for the teens/young adults to learn how to get along in life while they work or attend local colleges/trade schools. The participants share apartments in a community setting with lots of guidance from therapists, psychologists/psychiatrists, life coaches, and others.

For those of us who aren’t fabulously wealthy, the big challenge is cost: these programs tend to run several thousand dollars either side of $10,000 a month, usually with a minimum of three months. In my opinion the charges are probably reasonable considering what is offered and what can be gained: the transformation of our troubled, drifting young person to a functional young adult. We would hope health insurance would cover a good chunk of the expense, but for the most part we would be wrong. These programs range from totally not being covered to “maybe you can get reimbursed”. (Can’t help noticing that the treatment centers for addiction and eating disorders DO tend to be covered by insurance, but those dealing with mental health or autism spectrum challenges generally ARE NOT).

Anyway, here is what was happened since I made this discovery: I emailed three of the schools/treatment centers serving the Cinder Cone-like young people. One has not responded; another sent an automatic email with a couple of brochures attached, and the promise to follow up with me; and the admissions director from the third place called me back and graciously answered my questions. I’ll feature that treatment center in at least one future blog post, since I gained a lot of information to share, plus I may have a conversation in the future with that program’s executive director.

And finally, I went to the Psychology Today website and explored the Find a Treatment Center page. This resource has many more programs than those featured in the latest issue of the magazine. I entered our ZIP code – and found a very appropriate program less than 5 miles away! I’d never heard of it, and none of the professionals we’ve seen in the area ever mentioned it. I’ve sent an email to this program a little while ago.

By the way, here’s one resource the admissions director mentioned in our phone call: there is an organization called NATSAP, the National Association of Therapeutic Schools and Programs. Click the link to their website to find lots of useful information. I especially like the “For Parents” section, including “Questions to Ask” and “Selecting a Program”. It turns out you can (and maybe should) hire a professional to find the best program for your family’s needs. I didn’t know such professionals existed – they may be the topic for another blog post, once I learn more about them!

It’ll be exciting to continue learning and sharing about these programs. Anybody reading this who’s had experience with such a program, either on the staff or on the receiving end of the services: I’d love to hear about your experiences!

A unique housing program

It has been a while since my first post on housing. A look back at that post revealed I promised follow-up discussions of several topics.  It’s important to keep promises, isn’t it?  So here goes, with a look at a facility that offers housing and other services.

I had to dig deep in the file box to find the name of this place in Concord California (which is sort of in the Bay Area): The Center for Adaptive Learning (CAL.) I first found it on a Google search when Nathan was 16 or 17. They provide housing, counseling, employment support, life skills training, social events, etc. Their clients are 19 years old and older and have ADD, learning disabilities, obsessive/compulsive disorder, Asperger’s, are on the autism spectrum, or some combination of these. Please follow the link and click around. It sounds just about ideal, no?

So what’s the catch? Here’s one that will stop many of us. I’ve pasted the following from CAL’s FAQ page:

Q: How much does our program cost?

A: The Annual Program Fee for CAL is $38,520.00*. The Program Fee does not include the client’s living expenses (rent, groceries and utilities). *Fees are subject to change without notice.

Elsewhere, the website says that the fees may be funded privately, through Regional Center membership, or through school district eligibility.

I don’t know how one would become eligible through a school district; I’m guessing one would have had extensive dealings with the special education department, with maybe a lawsuit or two in the mix? As for Regional Center, we tried and failed to get Nathan accepted as a client (and yes, that will be the subject of a future post. There’s a link to the Inland Regional Center on the Resources page of this blog.)  Since we don’t really have $40,000+ per year to spare, the Center for Adaptive Learning was not an option for us.

I’m not suggesting that the fee is unreasonable, given what is being offered. Possibly, these days, some of it would be covered by health insurance. One year at college can run about the same amount of money. I just think you’d have to be convinced of a likely positive outcome before going down this road.

For us, a couple of factors made Nathan’s success at CAL a long shot. Like most people on the spectrum, Nathan is not a fan of change, and going to live at CAL would have amounted to total upheaval in his life. He has had big problems with much smaller changes in his routine. He never would have consented to go there, and if forced would have been totally uncooperative. (Wouldn’t that be the case with most of their potential autism-spectrum clients?) Secondly, Nathan’s refusal to work and his intense dislike of almost everyone he meets would not have gone well in this employment-oriented group setting. So, I have a wistful, nose-pressed-against-the-glass attitude toward CAL:  “if only…”

If there are other facilities like CAL out there, I haven’t come across them in several searches over the years, except for one in England. Please share if you know of any.

I once met a representative of a housing facility that serves people with developmental disabilities. He heard my brief description of Nathan’s diagnoses and situation, and indicated that Nathan potentially qualified to live in their community care facility. Individuals who live there are pretty self-sufficient, but need prompting for some daily routine activities or guidance in social situations. When I asked how we’d go about starting the process, he said, “Well first, get Nathan into the Regional Center….” Gah!

This facility and others like it may sort of meet some of the needs of some of our CinderCone people, but they are far from a perfect fit.  If some philanthropy or millionaire is looking for a worthy cause to spend its/his/her money on, I humbly submit that creating housing for young adults with mental health challenges is an excellent one. Not much competition to worry about – the field is all yours!

Housing options: as limited as I think they are?

I have optimistically included “Housing” as a category in this blog, even though I don’t have much information on it. I am hoping that YOU, Dear Readers, will be able to share housing options I haven’t stumbled across yet. Or are the options really as limited as they seem?

A little background on our situation:  our son Nathan has a unique combination of chronic severe depression, Asperger’s, and AD/HD, with some other disorders thrown in. He is smart and in some sense capable of either going to college or holding a job – but he is also incapable of doing either of those, even with ongoing meds and therapy.  Maybe it’ll take more time, or maybe he will never get there – that’s the reality. But in the meantime, …?

He could have lived with us indefinitely, which is a choice many families make. In our case, Nathan’s continued presence in our house after turning 18 would have been toxic to the family overall. I felt he also needed to experience more independence – not to have his parents take care of his every need.

Part of the benefit of going off to college is living away from your parents, right? The dorms, fraternities/sororities, co-ops etc. provide valuable life lessons (not always pleasant ones) for young adults, apart from what they learn in the classrooms.  And although I don’t have first-hand experience with the armed forces, I’ll bet part of what shapes our young military personnel into adults is their experience of living away from home.  College and the military provide a transition stage of living arrangements, where many needs are taken care of – but not by parents.  In a few more years, these young adults will be on their own, searching for places to live, dealing with utilities, figuring out where their hot meals are coming from. In other words, they’ll be dealing with adult issues, as adults.

But what about our kids? Where are the facilities that give our kids that away-from-home transition to independent living?  Hmmm.

One family I know bought a mobile home for their son in a quiet mobile home park. He has a scooter to get around, and the other (mostly senior citizen) park residents kind of keep an eye out for him.

Our family counselor once heard of a ranch somewhere near Temecula, CA that is run by young adults with Asperger’s. Neither she nor I has been able to find it – and we’re pretty good at scoping things out. This ranch sounds like an urban legend, doesn’t it?

I’ve also been told of an apartment complex in Redlands, CA that caters to people with mental health challenges. The tenants live independently, but the apartment manager keeps an eye out and is familiar with the issues the tenants face. I haven’t been able to find this complex yet, but need to keep trying.

There are some facilities that provide housing, job counseling, life skills training etc. to young adults on the autism spectrum and/or with other mental health challenges. In a later post I’ll list a few. The catch is that they are VERY EXPENSIVE unless the young adult is, say, a client of a Regional Center (which will be the subject of  later posts.)

Your local County Department of Mental Health (or Behavioral Health, or whatever they call it in your county) should have some resources to suggest. You can also check with your local NAMI chapter. (I’ll be doing posts on these organizations later also.) And there may be other local non-profits that help the disabled with housing options. Mostly what I have heard is that the board and care places run the gamut from “sort-of-okay” to “I wouldn’t put my dog in one.”

I’ll discuss what we did for Nathan in a later post.

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