Monday, April 28, 2014

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.

Sunday, April 27, 2014

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?  

Saturday, April 26, 2014

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)

Saturday Night Live: Robert de Niro announces terrorist list  (adults only)

British Animal Voice-overs

Taylor Swift: "I Knew You Were Trouble" Goat Version (yes, this STILL makes me laugh)

Justin Bieber: "Baby" Goat Version (yes, this one, too)

Friday, April 25, 2014

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.

Thursday, April 24, 2014

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 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.  

Wednesday, April 23, 2014

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.

Tuesday, April 22, 2014

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.  

Monday, April 21, 2014

Autism Understanding & Acceptance 2014 Day 22: Getting a diagnosis

I got another question from a friend that I will answer here (as well as privately).  The nuts and bolts of the question: how does one get a diagnosis?

Good question!  We've discussed what to say or not to say if you suspect autism in others, but not how to get an autism diagnosis.

There is no medical test for autism; no blood or genetic test*.  It's all done by observation and assessment.  You can screen for autism using the M-CHAT which was discussed earlier this month.  But an actual diagnosis involves a multi-disciplinary team that includes a child psychologist, speech and occupational therapists, a pediatrician, and possibly others.  Our "diagnosis day" lasted an entire day, meeting with these professionals while the others did their assessments & observations with T.

It is possible (I believe) for a pediatric neurologist, child/adolescent psychiatrist, or developmental pediatrician to do a diagnosis as well.  You may not get as comprehensive an evaluation as the multi-disciplinary team approach, but it might be quicker to get in with one of these professionals.  I know that the waiting list for a diagnosis screening appointment at one of our local children's hospitals can range anywhere from 6 months up to nearly a year.  More diagnostic centers are available each year, but there is still a wait.

Here are some websites that may be helpful:

And if you are in Indiana, the excellent Indiana Resource Center for Autism saves the day again with their "How and Where to Obtain a Diagnosis/Assessment in Indiana" publication:

Taking the step of getting a diagnosis can be scary.  Believe me, I know.  In many ways, it was nice to keep my head in the sand for a while before T got his diagnosis.  But as tough as it was, it also gave us direction & motivation.  May it do the same for any of you considering a diagnosis, or for one of your friends considering it.

*While there is no medical test for autism, there may be some underlying medical conditions that contribute to the autism-like symptoms.  Also, genetic testing may be ordered to rule out other conditions.

Sunday, April 20, 2014

Autism Understanding & Acceptance 2014 Day 21: "Sensory Friendly" opportunities

You may have seen me check in at a "sensory friendly" showing of a children's movie recently.  The Autism Society of America and AMC Theaters have partnered for several years to provide this wonderful opportunity for our loves ones on the autism spectrum.  This has been the only way we have been able to take T to a movie in a movie theater his entire life!  It is fun and satisfying to be able to do something that is so normal, so everyday for other families: going to a movie theater, getting popcorn, sitting through a film - we try to go every chance we get.

What makes them sensory friendly and why would that matter?  The lights are not turned down all the way, and the sound is not turned up as loudly as it usually is.  Also, (and this is key for us) their "Silence is Golden" policy is NOT enforced.  Guests may vocalize, get up & walk around, dance in front of the enormous screen - whatever their hearts desire and their bodies tell them to do!  So for our boy, who is happily vocal almost every waking moment of every day, this is a perfect opportunity to go to the movies.  We simply could not go to a regular showing - he just makes too much noise!  And then there is the inappropriate laughing too - sometimes if a scene is getting intense, he'll laugh even if it is a sad moment.  Probably wouldn't go over too well with a typical audience!  And I just don't want to risk the looks or comments, so we stick to the sensory friendly showing of movies, and have a terrific time. 

Increasingly, more performing arts and cultural events are offering autism-friendly or sensory-friendly opportunities to take part in their events.  A local Smithsonian historical outdoor museum, Connor Prairie, has Autism Quiet Zones throughout their park where a person who is overwhelmed can take a break.  These areas are quiet staff rooms or just an unused room where they've put a box with a blanket & fidget toys, and a family can go in there to regroup and stay as long as they need.  I have read that Broadway is offering sensory friendly musical performances (oh how I would LOVE to take T to one of those!!!)  And more sports facilities in our area are offering adapted programs such as adapted Yoga, martial arts, ice skating, etc!  

Is this necessary?  Well...I'll give you an example.  We needed the program at Connor Prairie -  and used it - a few years ago during their "Glorious Fourth" celebration.  There was a gathering outside where the Declaration of Independence was read and flags were waved which was all great fun...until they said "Let's sing the Star Spangled Banner" and everyone started singing.  Yeah, unexpected singing, the bane of our existence.  Thomas started crying and SCREAMING, completely terrified and angry and he was just undone.  We made as quick an exit as possible and found a staff person approaching us, who blessedly had a concerned but friendly expression and said "How can I help?", to which I said "Take us to the closest Autism Quiet Zone!"  We were there within moments, she showed us the box of toys & blankets, told us to stay as long as we needed, and left us to reboot.  15 minutes later, we were back walking the outdoor museum, all of us happy as clams and thankful for that Quiet Zone.  Without it, we probably would have had to leave for the day.      

So these adaptations, these "sensory friendly" opportunities, really open up so much more of the world for T.  

Friday, April 18, 2014

Autism Understanding & Acceptance 2014 Day 20: Church

Easter Sunday it seemed appropriate to post about our churches.  In our experience, they have been an unblinking support to us throughout T's childhood.  He was born into our church choir family in Virginia, and a bigger and more loving extended "family" could not have been desired.  Our kid had more aunties and uncles than he could count!  When he was a year old, we moved to a new state and started over with a new church.  His delays started showing up not long after we moved, and that church wrapped themselves around us through the scary build-up to diagnosis day, then supported us afterwards.  And then a few years later, we made our move to that state's capitol city, where we remain.  That was a scarier church hunt, having an elementary aged child with autism in tow when visiting a new church.  I'm thankful to say that anywhere we "church shopped" we were welcome, but our current church has embraced T beyond tolerance (that word is kind of tricky for me - when I see it on bumper stickers - don't we want to go beyond "tolerance" to embracing & including?).  Have there been bumps in the road?  Certainly - but the constant message is that T is loved and wanted there and we are all going to make it work however possible.

T is not a fan of unexpected singing AT ALL.  And sometimes, even expected singing is completely not cool with him.  But we walk into the sanctuary on Sunday mornings, and he looks at us and says "Sing".  He enjoys it.  He is happy during the services.   It's just more fuel to fire my belief that this child is connected to God.

Sometimes he's quite vocal about how happy he is, and God bless the people who sit near us every week, we've never gotten even a sideways glance.  

Thanks be to God for churches that welcome ALL - and I mean ALL God's children.  

Autism Understanding & Acceptance 2014 Day 19: "The Curious Incident of the Dog in the Nighttime"

Another pivotal book for me: The Curious Incident of the Dog in the Nighttime.  

Unlike The Reason I Jump, this is not written by a person with autism, but instead was written by someone who had worked with several young men with autism spectrum disorders.  This fictional main character is a young adult male who discovers that the neighbor's dog is dead, and the adventure that ensues when he tries to unravel the mystery of why.  Sounds a little dark, I know.  I must add that the character never says that he has autism, nor do his parents (also characters in the story).  But as you read it, especially for those of us who live in the world of autism, you pick up on what's different about this character very early on.  He creates strict routines that he must follow, rules for what constitutes a good day or a bad day, explains why he does not like the color yellow...all of it completely logical but completely different from any train of thought that us NTs (Neuro Typicals) would have.  Fascinating book - and again, I feel I gained insight as to how the mind of these very different but completely abled brains think.

This book had a wide range of reactions by its readers.  Many people thought it was hilarious.  Others found it very depressing.  I can see why both reactions occur.  For me, I was just completely transfixed by this main character and his thought processes.  

As I'm typing this entry, and thinking about yesterday's post about The Reason I Jump, I'm realizing that much of the reading I've done on the subject of autism, and much of what motivates me, is trying to get inside their brains.   Not books on potential cures, exposing "Big Pharma" or books by another mom whose child has recovered.  Nope.  I want to understand how T thinks, if at all possible.  

My confession: I am fascinated by the autistic mind.  (Good thing, isn't it?)

Thursday, April 17, 2014

Autism Understanding & Acceptance 2014 Day 18: "The Reason I Jump"

In keeping with the theme "What has been helpful" this year, I must include books that have opened my eyes in one way or another.  This is the most recent book I've read on the subject of autism.  The Reason I Jump is written by a 13 year old young man from Japan who has autism named Naoki Higashida.  It written and translated in question/answer format.  I felt as I was listening to this book (I do a lot of "reading" via audiobooks these days) that I was getting an honest & true glimpse into a mind that is absolutely different, but not one iota less.

The recurring theme that Naoki shares is: be patient with us.  We don't want to cause heartbreak or stress.  So stick with us when we are having a rough time.  Sometimes we just can't help it. We want to please you, we want to do well.  

After hearing this young man's book, I have doubled my efforts not only to keep my cool when T is having a rough time, but also to imagine what he is going through at that moment.  It doesn't make those times easier necessarily, but it does help me get out of my own head during those times.

Wednesday, April 16, 2014

Autism Understanding & Acceptance 2014 Day 17: Craniosacral therapy, Myofacial release, Reiki: alternative energy work

Over the years, we have tried lots of alternative treatments & therapies, not wanting to leave any stone unturned.   We have kept a group of treatments that I will categorize as Energy Work in T’s regular treatment plan: Craniosacral therapy, Myofascial release, and some Reiki when possible.   One of his previous therapists even knew how to do muscle testing, and created wonderful liquid tinctures that T’s body “told her” it needed.  All of this gets difficult for me to explain in definitive terms…except that I keep it up for him because I believe that it is helping.  He is a child whose body is almost always on the move.  Flipping a bracelet, bouncing & jumping when happy – this kid is active!  But during these sessions, I can see his body completely relax and be still.  His stress level dissipates, and the looks of love and peace that come over him (and that he shares with me and his therapist) absolutely convince me that he is benefiting from these treatments.  And that’s enough for me to keep it going.   

But beyond that, I believe that this quiet time also feeds him spiritually.  Of course I don’t have any hard evidence of this, except that I sense that this child growing young man is very deeply connected to God and the spiritual realm.  It doesn’t hurt that the women who have provided these therapies to him see him as an absolutely pure soul.  They see no disability, and see his differences as a gift to be nurtured and cherished despite the world not understanding or seeing.    

Tuesday, April 15, 2014

Austim Understanding & Acceptance 2014 Day 16: Kind words from professionals

Today, I was reminded how truly lovely and uplifting it is to hear positive words about T from the very professionals that work with him or just know him.   This happened today quite unexpectedly and it has left me smiling inside since this afternoon.  I went to pick up T from middle school, as I do everyday.  I go inside and hang out in the entryway, waiting for T to arrive.  During that time, I usually enjoy a few moments to chat quickly with his teacher - to hear how he’s doing, if there were any great or not-so-great things that I needed to know about, etc.  Nine times out of ten, I am hearing about cool things that T did (or tried to do), and little triumphs he had that day.  I usually come away feeling pretty good about where T is spending his days and his time. 

Today his teacher wasn’t available to chat for long, so I waited for T to pack up his backpack & put on his coat (completely independently, by the way!).   The assistant principal, who was monitoring the hallways during class change time, saw that I was on my own and approached me, asking if I was T’s mom.  He then told me just how much they enjoy having T at school everyday, and how well he is doing.  I grinned and thanked him, and said that he does have a way to getting into people’s hearts.  The assistant principal agreed wholeheartedly, and proceeded to tell me that the students & teachers really like him.   He then put his hand on my shoulder, looked me in the eye, and said, “Never underestimate how important it is that he is here.  The students learn so much having him here.  He makes them grow up and think less of themselves.  And he learns so much from them too.  It is so good to see.”

Looking back at him, I took a deep breath to take that all in, and thanked him for those kind words – and told him it meant a lot to hear that.   At that moment, T was approaching with his huge smile, and I said to the assistant principal, “Look how happy he is here.  He is really happy being here.”

And with that, the bubble burst.  One of the para-educators from T’s classroom walked up with T and proceeded to tell me how much the zipper on his backpack really made him mad.  (Um, yeah – he looks really mad with that wide smile across his face.)  So I just said that yes, that can irritate him but it is usually short-lived.   This is not the first time, or the only para, that brings him to me with this sort of update.

Then I started thinking about communication.  How often do we, as parents of children with disabilities, hear about every minor infraction, every frustration expressed, every mis-step?  If the para were to bring him to me everyday, I would probably get very little feedback other than “the backpack irritated him”, "he was grumpy today" or “he pushed me away” or some other imperfection of his day instead of how hard he tried in math class, or the cool experiment he got to see and help with in science.  

It was a fantastic “compare and contrast” moment.  Have no fear: the little minor frustration expressed by the para in no way diminished the wonderful exchange I had with the assistant principal. 

Parting words: if you are professional working with kids with special needs (or heck, ANY kid!), don’t start off a conversation with me by telling about every minor infraction or frustration you have with my son.   If you need to brainstorm with me, ask – I’m happy to do so.  But remember, any minor frustration you have, we experience at home every other hour of the day.  I know about them and don’t need to hear about them.    In the words of a dear departed friend: “Three rules of communicating with others: Be kind.  Be kind.  Be kind.”   Thanks, Mr. Assistant Principal, for being kind today. 

Saturday, April 12, 2014

Autism Understanding & Acceptance 2014 Day 15: Professionals who LOVE him

Another thing that has been helpful on this journey: Professionals who fall in love with T.

This has been one of the unexpected blessings on this journey: the people that have come into our life because of T who end up falling in love with him.  The beautiful thing is that he loves them right back.  He still talks about his speech therapist from his preschool days, and he is 12 years old!

I know - if you work with kids, you are supposed to maintain a professional distance.  Yeah, yeah.  T doesn't respond to professional distances.  He responds to energy, he responds to engagement, he KNOWS when a person loves him.

I have long said that anyone that works with T has to love him.  When I say that, I'm not joking.  In our decade plus of having professionals come and go from our lives, the ones that have made an impact are the people that didn't just do their job.  They fell in love with this kid and in doing so, became passionate about reaching him, engaging him, and helping him learn.

Autism Understanding & Acceptance 2014 Day 14: Patience

Perhaps it could go without saying, but one of the most important abilities to have when raising a child with autism (or any special need, for that matter) is an unimaginable amount of patience.   Now, I know parenting any child requires patience.  I get that.  The amount of patience I'm talking about is a whole different ball game.  Every step of any new skill needs to be taught.  He needs a lot of prompting to begin a task.  And the intense scripting, especially when he is stressed, can really try even the most saintly person.  But blowing my top or rushing him or yelling only results in crying and more intense repetition of words, so patience it is.  

Regarding T: he has a tremendous amount of patience too.  As with all of us, he has his impatient moments!  But I think about what it must be like to want to communicate something, or need something - and not be able to say it - how incredibly frustrating that must be.  It also must feel odd to have people talk about you right in front of you; making decisions for you, discussing what you can't do, or every minor infraction that occurred at school, etc.  How much patience must he have - to live in a world not built for him?  

So we are patient with each other - as best as we can be.

Friday, April 11, 2014

Autism Understanding and Acceptance 2014 Day 13: My visit (if religious talk offends you, skip this one)

I debated long and hard about whether to post this one or not.  I am not one who easily talks openly about matters of faith.  It is a deeply personal subject for me and I get very uncomfortable sharing something that I feel is private.  I have been a member of the Christian faith for my entire life and attend church weekly.  It is a vital part of my life, whether I speak of it or not.  But sharing openly about my faith: that's a tough one.

That being said, if am I continue with the theme of what has been helpful, this moment was a pivotal one.

I mentioned in my previous post that I had a profound moment when I was near a nervous break during those early years.  I haven't shared this too often because it was a deeply personal moment, and it happened immediately after a moment I'm not terribly proud of.  But that's what makes it so profound, and I'm not making this up.

At this point in time, I was frantic to get T to check off more items on those developmental milestones lists.  We had five therapy appointments a week with three different therapists coming to our home, all working with him to make progress where he was delayed.  I was determined that if I worked with him hard enough during the off hours, put in the time and did it right, I could make the delays go away and everything would be fine.  For crying out loud, I was a full time stay at home mom at that point - if anyone could do it, I could.  But T was not on the same page.  I will never, ever forget the endless hours at our kitchen table, just T & me, trying to engage him, get him to do anything.  Nothing.  He'd just stare blankly off into the distance.  When I'd try to help him hold a crayon or do anything with his hands, they just went limp.  I couldn't reach him.  So there I was, frantic, and there he was, just placidly sitting at the table, NOT reachable.

After weeks and months of this, I hit the boiling point.  I stood up, slammed my chair back from the kitchen table and in doing so, accidentally hit the spindled chair rail behind us.  I was yelling at the world, frustrated and frightened beyond where I had ever been.  Spindles went everywhere and T was frightened and started to cry.  Then, sitting across the kitchen table from me, was Jesus.

I know, I know - I probably just lost some of you.  Believe me,  I don't fall into the category of Christian that feels they have a deep, personal & intimate relationship with Jesus.  (That's a little too cozy & casual a thought for me personally.)  But I'm telling you: He was there.  The calm, simple and clear message from him was: Suzanne, stop.  And I could sense Him smiling but shaking his head at me.  Sympathetic, present, loving.  And then He was gone.

A bit shaken but much calmer, I put the spindles back (nothing had been broken, luckily).  T calmed down, and so did I.  I apologized to T for frightening him, and moved forward, knowing I was not alone in this journey ahead of us.

Knowing I am not alone in this journey has been vital as we have passed through challenging times.