A Grand time at the Grand Hotel

My parents invited us to join their 55th wedding anniversary celebration over Memorial Day weekend.  It was a very generous and loving offer which we quickly accepted - most importantly to spend precious time together as a family, but also to have the opportunity for us to experience the very lovely and historic Grand Hotel as actual guests.  When Rob & I were youthful summer campers Up North, we have spent the $5 (now $10) for the privilege of spending time on The Porch, but had never been guests of this summer hotel and resort ourselves.  

Once we agreed, the slight panic set in.  There is a dress code.  T is 12 years old; no longer a little boy.  He would be expected to be in a shirt, tie and coat.  Deep breath.  Can he do that?  

I called the hotel a few months ahead of time.  I asked for clarification on the dress code for young men, and it turned out that there was a little wiggle room.  A dress shirt and pants would be fine for older boys.  The tie and coat are optional, but still desired if possible.  I explained about our boy, and chose not to play the "A card" - but instead said that he has intellectual disabilities and while he is a very happy and well behaved boy, he has just has never had to wear dress clothing before.  No problem, I was told.  Dress shirt & pants are perfectly acceptable.  Whew.  There was an out, a Plan B.  I breathed a sigh of relief.

But then I set my sights on the goal: why not try it?  Could I even imagine that he'd be willing and able to wear a shirt & tie?  With the dream of seeing my boy dressed up, I headed to the mall for what I thought would be a relatively easy shopping trip.  

Then came the comedy of errors: trying to find two dress shirts in stock that fit this boy that is growing leaps and bounds everyday, along with a decent looking clip-on tie that is long enough for a tall 12 year old.  I started with what I thought was a slam-dunk: the pre-packaged dress shirt and clip-on tie.  Nope.  Size 14 too small.  Returned for size 16.  Nope, too small in the neck.  Seriously???  Back to square 1.  Oddly enough, the size Izod XL boys dress shirt from JCPenney worked, but the Land's End XL was too small.   After a month of buying & returning and about 10 receipts in my wallet, I plopped down the credit card for the last time.  Half the shopping mission accomplished.  

There are more options for non-tying ties than I ever imagined.  I was continually pointed to the zipper ties (I honestly still cannot see in my mind how they work), but that was a no-go.  T won't allow anything over his head with the exception of shirts.  No ID tags, necklaces, name tags - nothing.  And most clip-on ties are for the little guys, so they are short short short.  I finally got lucky and found one lone, longer, honest-to-goodness clip on tie at Sears (see picture above).  I spent more time at our local malls for this trip than I have the entire last 12 months!  So two weeks before the trip, and about two months after starting the quest, we finally had the gear.  Now we just had to see if he'd deign to wear it.  

The two dress shirts, one in white and the other in blue, along with the tie, were taken to his ABA clinic daily for two weeks.  When I picked him up after the first day, his therapist came out with a big smile and a thumbs-up.  He wore the shirt buttoned all the way up and the tie for about 10 minutes.  Then 20 minutes the next day.  She paraded him around the center each day while he heard multiple accolades about how very handsome and grown up he looked.  After a week, he was wearing it for the full 2 1/2 hours.  Now it was in our hands.  

And why not go all the way and find a suit or sport coat?  Some friends with older boys gave us an outgrown blazer, and I also found a spring-weight full suit at our local children's consignment clothing store.  A $14 gamble - why not?  

He loved the boat ride out to Mackinaw Island.  At first he was a little stressed, with all the newness of getting luggage out of the car, waiting in a line for a boat, heeding the presence of others around him and not "cutting in front" of people lined up politely to get on the boat, but once the engine started and the water started splashing against the side of the boat as it moved, it was all smiles and loud laughter.   From there on out, he was such a trooper.  Riding in a horse & carriage up to the hotel?  No problem.  Brand new hotel decorated with large florals and bright patterns?  A harp or piano playing pleasant music live?  No worries.  The only stressors were when he was getting too far ahead of us on an excursion and we had to call to him to come back.  Turns out we move too slowly for this growing (nearly teenage) boy at times.  

We checked into our hotel rooms, took in the views, opened the windows to hear the clip-clop, clip-clop of the horse & carriages going by, and relaxed until dinner.  Then came the deciding moment: would he let me put his shirt & tie on?  And could I dare imagine that he'd agree to putting on the coat?  

As you can see from the picture above,  the answer was yes, yes and yes.  

The whole weekend was like a dream.  He was such a good kid.  He did just fine with the evening cocktail receptions as long as the crackers and cheese were plentiful.  Sat through the 5 course dinners both nights like a pro, wearing his shirt, tie and blazer.  He even let Daddy (Rob) give guidance on what buttons on his blazer should be buttoned while standing, and which should be unbuttoned when sitting at the table.  (Well, there was a little consternation, but it was pretty quiet and very short-lived.)  

I was - and still am - so very proud of him.  And I'm proud of myself for setting the goal and sticking to it.  I'm proud of my parents for taking the risk of inviting us to such a nice locale.  Proud of Rob for how he's guiding T so well.  I'm just so proud and happy and pleased - and a full week later, I'm still pinching myself.

My take-away: given the right supports, this kid can accomplish great things.  Really, really great things.    

Autism Understanding & Acceptance 2014 Day 30: Family

The theme of this year's posts was "Things that have been helpful".  We have been blessed with an immediate and extended family that has been more supportive that I could have ever imagined.  None of us have had any direct experience with raising a child with significant special health care needs or developmental disabilities.  Yes, there has been heartbreak and trauma in our backgrounds, but not with this particular family challenge.  And yet, everyone has risen to the occasion.  Grandparents, aunts, an uncle, cousins, and even extended family of great aunts, uncles & cousins, "twice-removed's"...all love him without reservation.  I dare not list the multitude of examples of love, care, compassion & action that our family has taken, for fear missing something.  Rest assured, this child could not have been born into a family more ready to embrace him.

It hasn't been easy, I'm sure.  Very few people are born knowing how to interact with someone who doesn't talk in a typical way, or knowing how to react when a beloved grandson/nephew/etc doesn't want a hug.  It's been a learning curve for us all.  But they have all loved and supported us in their unique ways.  This kid has one heck of a circle of family love around him.

And I would be remiss if I did not give a shout out to the best daddy for which a child could hope, and the best partner for which I could have dreamed: my husband and T's father, Rob.   I have received much praise from many of you gentle readers in the comments on my posts both this year and last year, but I could not be the mother I am without the incredible man that I was smart enough to marry almost 17 years ago.  This has been a team effort.   I could not have done any of this without him.

Family.  One of the most vital things that has gotten us through.  We are lucky to have a really good family.  I love you all, and thank you.

And thanks to all of you for sticking with me for yet another year.

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.