Autism Understanding & Acceptance 2014 Day 29: Adult life

I love the questions that have come in.  The most recent question was: Where do you see yourselves in 15-20 years, or even beyond that?  This question in particular warmed my heart because it showed that she is wondering (and I'm sure others of you are too) about what the future holds for a growing young man like T.

Once again, I will answer the question with the easier, matter of fact answer and then delve into the possible realities underneath.

Thomas most likely will be living with us for many years to come.  Rob and I are fine with that; in fact, we cannot imagine life without him.  He will likely stay in the public school system until he turns 22 years old, which is allowed in federal and state special education laws. We hope to keep ABA in his life as long as possible.  As he approaches the time when he'll finish school, Vocational Rehabilitation will be involved in his school day and they will assess his skills and introduce him to different work environments to find a good fit.  (That's how it is supposed to work, anyway.)  He will exit school with a Certificate of Completion, as opposed to a diploma, unless he really stuns us in the next several years.  We try to never say never, but we also try to be realistic.

When he has his Certificate of Completion and is done with school, the Medicaid Waiver services will really come into play for us.  It will be used to create a Person Centered Plan for him, and create "meaningful days".  The hope is that he will have a mix of employment and socialization, volunteer work and outings in the community.  If the waiver we have currently remains unchanged that far into the future, then he will be living with us for the foreseeable future.

If he is able to have a job, we will need to be extra vigilant about his income.  It is likely that because of his developmental disabilities, any income he receives will allow him to remain eligible for Medicaid Disability as his health coverage (he won't be making too much money, in other words).   But if he makes just enough over the income limit, he'd be kicked off Medicaid Disability, his Medicaid Waiver and the Supplemental Security Income (SSI) that he would receive from Social Security, the very programs that provide the services he'd rely on during his adult life.  So we'll need to monitor that very, very carefully.

Those are all the realities, and I've discussed how things should work in the best case scenario.  Now we'll dig a little deeper.

You may recall from my post about Medicaid Waivers that I commented there was "...a lot to say about waivers in our state."  Here's where I'll start saying it, but I'll give some background information first.  There had been a 12 year (minimum) waiting list to receive services.  In reality, that waiting list was stretching longer and longer each year because more people were being put on the list than were being targeted (thank you, explosion of autism diagnoses).  That sort of wait to receive services couldn't be sustained, and if we were to get picky about it, is kind of illegal, but states do it all the time.

Anyway, our state changed the waivers and got the fed's approval, so more federal money poured in, allowing those of us on the waiting list to be given a slot.  The way they did it: give all of us who had no services something, which is better than nothing.  But here's the issue: unless this new waiver is expanded at some point in the future, the budget cap we have now is the only amount we'll ever get.  I won't go into details here, but rest assured, that budget could never allow him to live in an apartment with roommates or live outside of our home, unless (are you ready?): both Rob & I are over 80 years old (so in our case, I'll be 83), or both deceased, or T will have to develop the most serious behavioral issues so that he is a danger to himself or others before we get more assistance from the state.  This is no exaggeration.  I am stating facts as they stand today.

So as you can see, I'm not exaggerating when I say that he will be living with us for quite some time to come.

Okay, that being said, let's take a deep breath.  I do believe that once everyone who has been on these exceptionally long waiting lists have been targeted and are receiving services, the state will expand services...and we won't really be looking at moving him out when I'm 83 and Rob is 80.  I firmly believe this, and am not really expecting him to live with us that long.

But as I look forward, I do see T with us for the foreseeable future -  minimally the next 10 years, probably 15 and maybe longer.  There is both comfort and discomfort with that.  Truth be told, I want him here with us until he is fully into adulthood, but I don't see the wisdom in keeping him with us into his middle age.  Rob and I won't live forever, and how tough would it be to move him out when we're gone, he is 40 or 50, and all he's ever known is life with us?

He needs the dignity of independent living, of an independent life (with Rob & I living VERY close by, mind you), and I'd strongly prefer that we are both around to help him with that transition to as independent a life as he possibly can have.

And as busy and intense as these early years are of his life (early intervention, school, therapies, etc etc etc), he will be an adult MUCH longer than he will be a child.  That part of his life isn't as clear to me, but I've taken the approach of doing the best I know for today, tomorrow and next week - maybe even a few months ahead - and by doing my absolute best now,  the future will take care of itself.

Autism Acceptance & Understanding 2014 Day 28: Public School

Last year during these posts, I waxed poetic about how much Applied Behavior Analysis (ABA) has helped T.  That still remains true.  Because our challenges with T arise from his behavior, having Behavior Analysts working with him everyday and coming to our home every two weeks is an invaluable service and support for us.

Toward the end of last year's posts, I mentioned that his full-time ABA coverage (about 37 hours) had been reduced down to 20 hours per week.  Insurance had been covering it full time, but because of his age at the time (11yo) and how long he had been receiving full-time ABA (about 6 years, yes YEARS), our insurer decided that he could benefit from at least some time in the public schools.  Or put another way, they weren't paying for full time anymore unless we could prove that 40 hours a week of ABA was still completely medically necessary.

Rob and I decided that it was time for T to try to go back to the public schools for part of his day.  Honestly, we had already been pondering it.  When the reduction in hours came, we didn't appeal.  We called up our school district, the one which we hand-chose when we moved here in 2007 specifically for its special education services.

Scary?  Yes.  For crying out loud, we're talking MIDDLE SCHOOL here.  Kids are figuring out how to be decent human beings at that point!  They know how to be mean, and fitting in and being like everyone else is THE motivating factor in their lives.  How would my gentle T, who may not understand when kids are being mean, who happily sings & scripts his way through his day, and who flips a bracelet and melts down when "Happy Birthday" is sung, fit in there?

Here's the deal: I knew that my non-conversational, vulnerable boy was safe right where he was.  His every need was met.  His Individual Treatment Plan at the ABA center was tailored specifically to address his deficits, and there were proven curricula in place to help him progress.  He was (is) truly LOVED by the staff there - all the way up to the top tier of administration.  They are personally invested.

And yet, and yet...he wasn't in his community.  He wasn't in our community.  His whole day was spent surrounded by other fabulously "gifted" children like him (I like to refer to our kids as gifted), and the only time he spent with NTs (NeuroTypicals) was in church.  He could still go to the ABA center a few hours a day, but he was about to start back into the public school world for the first time in 5 years.  Talk about a leap of faith.

We are almost through his first year back in school now.  How has it gone?  Well, it depends on what questions you ask - and the answers you are seeking.  Has he gained math skills?  No.  Do we have data & graphs showing progress in all his academics?  No.  Have we seen an increase in some mild aggressive behavior?  Yes.  Is that due to the change, or adolescence?  We don't know.

But...can he now maneuver those busy hallways like a boss?  Yes.  Is he in a science and an English class now, being exposed to ideas and literature he wouldn't have been otherwise?  Yes.  Did he answer a rhetorical question posed by the English teacher out loud one day, taking her pleasantly by surprise? Yes.  Does he have a classmate (NT) that wants to be his lab partner?  Yes.  Are there kids that walk down the hallway with him on occasion, asking him questions and being friendly?  Yes.  Does he now sit with me at home on the sofa and allow me to read children's/young adult literature to him out loud, and seem to be listening and interested?  Yes, yes, and yes.  

Again and again, I've thought about Eustacia Cutler, Temple Grandin's mother, and how difficult and scary it must have been to send her to Arizona after college to live with Temple's aunt and work on her farm.  It would have been safer to keep her home.  But what would the world have missed if she hadn't taken that chance?  We may have never gotten to know the Dr. Grandin that has inspired so many people around the world.  What will T miss if we don't carefully but intentionally expand his horizons?  

Autism Acceptance & Understanding 2014 Day 27: Sense of humor

Keeping and maintaining a sense of humor through the years has been vital.  No, it is not always possible to laugh at situations, especially when you are in the throngs of a meltdown.  But with hindsight, and especially sharing the story with Rob or with my dear colleagues at work who GET IT, laughter usually happens.  I can tell you that among those closest to me, we've all developed a wicked and (at times) rather dark sense of humor.  I really do believe that laughter can be the best medicine.

So, when a day has been particularly rough, I go for my bookmarked YouTube videos that I cannot watch without laughing.  I'll let you in on my little library of laughter...

The Crazy Nastyass Honey Badger (language alert)
https://www.youtube.com/watch?v=4r7wHMg5Yjg

Saturday Night Live: Robert de Niro announces terrorist list  (adults only)
http://vimeo.com/44169145

British Animal Voice-overs
https://www.youtube.com/watch?v=cV6I1_o6vrY

Taylor Swift: "I Knew You Were Trouble" Goat Version (yes, this STILL makes me laugh)
https://www.youtube.com/watch?v=HLI4EuDckgM

Justin Bieber: "Baby" Goat Version (yes, this one, too)
https://www.youtube.com/watch?v=QOsOMXtak-A

Autism Understanding & Acceptance 2014 Day 26: Medicaid Waiver, a new-to-us service

I mentioned in my last post that we had been on a waiting list for a Medicaid Waiver for seven years. You may be wondering what a Medicaid Waiver is, so I'll explain.

Medicaid Waivers provide staffing, therapies, services & supports for individuals with significant special health care needs in order for them to live as independently as possible in their own homes & communities (hence their full name of Home and Community Based Services or Waivers).  Specifically, it "waives" the requirement that these individuals be institutionalized in order to receive the care that they need (think nursing homes, or the group home in the movie Rainman where Raymond lived before Charlie took him on their cross-country road trip).

That level of institutional care is very expensive, and the option of providing services to people in their homes & communities is less expensive in the vast majority of cases.  In fact, if a person's waiver budget is more expensive than an institutional placement, then that person can be placed in an institution, but this is rare these days.  It is a better use of state & federal dollars for people to be living as independently as safe and possible.  But most importantly in my book: it keeps our loved ones IN the community, PART of the community, not set aside from the community.

There is much to be said about the waiver program in our state currently.   Because of the recession AND because our waiting lists simply weren't sustainable any more (10-12 years long), major changes occurred about 18 months ago.  The state made changes to the program, more federal dollars rolled in, and after seven years, T now has his Medicaid Waiver.

What does this do for us now?  It is paying for Music Therapy and mass amounts of Respite Care.  We are thinking of reducing the amount of Respite and adding some Recreation Therapy, which would be a staff person taking T to parks, gyms, sports activities, and getting him active.  All this is wonderful.  But where we'll really feel the impact is with what comes along with a Medicaid Waiver: Medicaid Disability.

It will be T's secondary policy, and here's the beautiful thing: as long as the doctor or therapist accepts Medicaid Disability, it will cover T's co-pays, co-insurance and deductibles up to our out-of-pocket maximum of our private policy.  And if our primary policy doesn't cover an important therapy, or limits the amount of sessions a child can have?  Again, as long as the provider accepts Medicaid Disability, it's covered.  How is this possible when we are over income for Medicaid?  A beautiful thing called Senate Bill 30 that waives parental income requirements when a child under 18 is on a waiver.

For some families, this is the deciding factor between bankruptcy and financial stability.  Medical treatments & therapies that aren't covered by insurance can quickly mean financial ruin for a family.  We've been very, very blessed that our primary insurance has been so good.

Eventually, the hope is that his waiver budget will allow him to live in an apartment or home with roommates with the staffing he needs.  I will dive into this look into the future before the month is out.

Autism Understanding & Acceptance 2014 Day 25: Respite care

We cannot simply hire the teenager down the street to babysit for us.  This has been true for a number of years.  What do we do when Rob & I want to (gasp!) go out on a date?  We have respite.  Respite is provided by trained individuals through a respite providing agency, and is paid for by the state.  Yes, it is nice - and it is absolutely necessary. 

In this state, funding for respite has come to us in two forms: Caregiver Support hours and Medicaid Waiver Respite.  Caregiver Support is a service that families receive when on the waiting list for the Medicaid Waiver program.  (We were on the waiting list for 7 years.  I'll explain Medicaid Waivers in a future post.)  Currently, our state provides funding for 62 hours of Caregiver Support per year.  It was 125 hours per year when we started, but recessions and budget cuts hit, as they did with so many programs everywhere.  We received funding for Caregiver Support starting with T's preschool years, and continued right up until January of this year, when we were FINALLY targeted, approved and got our Waiver up and running.  Now we have 10 hours a week of respite, a stunning amount to contemplate.  

At first, during the early years, we would use respite time to simply browse a bookstore.  To be out in the community and not be in a rush to finish all your errands before a meltdown occurred was just so glorious.  

Whether Caregiver Support or Waiver respite, here's how it gets started: once we choose a company from whom we will receive services (and there are several), we are given a list of their employees who are available to take new clients.  We chose one or two people and they come meet us and T, get to know him, and then they slowly but surely become part of our lives.  

Our current respite provider, M, has been with us for at least 5 years now.  We've seen her go from college student to graduate, and then on to employment at T's therapy clinic!  Our previous providers have selfishly gone and gotten married, had children...you know, lived their lives.  Honestly, don't they know one we love them they aren't allowed to do that?  (Sarcasm, people!!!)  

We've also been lucky to live in a city where one of the biggest therapy clinics sponsors a Parent Night Out program.    Because it is a big enough city where we live, the location rotates around the city each week to 4 different locations.  Register for your week, and from 6-10pm on Friday nights,  your child with special needs is entertained, fed snacks, shown a movie, taken to a playground, all by trained staff people.  And while all that fun is going on, the parents are doing WHATEVER THEY WANT.  

Autism Understanding & Acceptance 2014 Day 24: Celebrities & friends

Celebrity spokespeople can be a mixed bag, especially in the autism community.  Holly Robinson Peete is nothing but wonderful.  Having good friends with whom you can share this crazy, frustrating, awe-inspiring, bring-you-to-your-knees journey of life with autism: priceless.  Thanks for asking me to join you tonight, Patty.

Honestly, the new friends you meet - like-minded, fellow parents of kids with autism - and the friends you had previously who have stuck around, are among the most important things you can have on this journey.

Autism Understanding & Acceptance 2014 Day 23: Unexpected Singing

Another question was posed to me recently, by a dear friend who has known me - and my love of singing - since we were in middle school.  "I am wondering how you, a vocal performance major/former professional singer handles the bad reactions to singing. Do you sing at home and is that okay with T?"

Well, there is the superficial answer and then the deeper one.   So let's start just on the surface: he is okay with me singing with my professional voice.  He actually joins me or echoes me on my warm-ups and it is so darn funny that my heart just melts.  Sometimes, if he's in a really good mood, I can sing arpeggios way up to the top of my range and then sustain the top note, and he smiles, covers his ears and laughs and laughs.  He loves it.  So he is okay with me singing at home, but most of the time it is only with my classically trained voice.  There are some nights before he goes to bed that I can sing him lullaby after lullaby, and he snuggles with me and sings along occasionally.   Precious moments to me.  So these are the situations where singing is okay.

And as I posted earlier this month, he is okay with most of the singing in church.  (There was one time that the youngest children's choir attempted to sing but ended up shouting & yelling most of the song, which completely undid him.  We had to leave the sanctuary because he started crying & screaming himself.)  He tolerates the voice lessons that I teach, but increasingly he just heads to the basement.  When he was about 5 years younger, he'd actually sit and listen to a lesson.  

He was okay with his Kindermusik classes during his preschool years, and he still stuns me occasionally by suddenly singing one of those Kindermusik songs that we haven't heard in 7-9 years.  Music has a deep impact on him.   I think that part of what is going on is that he wants to have control over this very intense experience his body goes through when hearing music.  

When it is not okay to sing: any other type of singing around the house.  No fun songs, no whistling, no happy children's tunes, nothing.  No singing of the Doxology before a meal at a family gathering.  No singing Christmas carols around the piano with the family.  Transition music between stories on NPR: not okay.  Singing on commercials: nope.  Singing guests on Good Morning America: no.  Stories on the news that involve singing: nope.  Singing during Youth Group: no.  And when I say no, I mean that his hands go over his ears, his eyes get very wide and intense, he hums loudly so he can't hear the offending sounds, and when it is done, he'll look at me and say "It's all gone" repeatedly...and that's is if he's in a good mood.  If he's already on edge, the phrase "it's all gone" turns into crying and yelling, having what I describe as an out-of-body experience.  It's a good 15 minutes and sometimes longer before he is back.  

So this is a huge deal in our lives.

Going deeper, this is one aspect of our life that I would change in a heartbeat if I could.  It breaks my heart.  He has such a tremendously gifted ear and sings beautifully, but won't let anyone join him.  The first time the children's choir sang at church, I felt like my heart was being ripped out.  My son, with a gorgeous voice and nearly perfect pitch, could not be up there.  And the sorest cut: I assumed that I would sing with my child(ren) for the rest of my life.  I don't want to be too dramatic or post anything negative about my beautiful gift of a child.  This does have a tremendous impact on our lives multiple times a day, and I wish, oh how I wish he could be relieved of the apparent pain and fear that goes along with unexpected singing.