On Wheelchairs (World Autism Day)

My family and I are vacationing at Walt Disney World.  It really is the happiest place on earth...except at 1pm as we are dragging a weary three year old back to our hotel for a nap on a crowded bus.  We are surrounded by smiling faces and sticky fingers, by princesses and monsters, by magic and innovation.  One thing that I have noticed over and over again is the number of people in wheelchairs.  It's incredible to see how these parks have made it possible for the physically disabled to experience just about everything that my able-bodied family is enjoying.  From the buses and parking lots to the restaurants and rides, there are designated accommodations for individuals and families arriving with wheelchairs. (The Small World ride has a boat specifically for passengers in wheelchairs and their companions.  Amazing.)

Sound-muffling headphones are a simple accommodation
to make Disney World enjoyable for everyone

Tonight, I found myself imagining the world before the invention of wheelchairs.  What was it like to break a leg or suffer some other injury that prevented a person from walking?  What was it like to suddenly find yourself paralyzed from the waist down, or to give birth to a child whose legs didn't work?  Most people were probably bed-ridden, trapped in their homes or medical facilities (or, let's be honest, some sort of depressing invalid ward).  And prospects would have been infinitely better for those experiencing a short-term affliction versus those whose diagnosis meant lifelong confinement.  Families were probably distraught over the loss of their loved ones' mobility, as it would require more time and effort to care for this person, and there was no way he would ever earn a wage or live on his own.

Historians have found evidence from thousands of years ago that the Chinese invented a wheeled device for transporting people, but wheelchairs as we know them didn't come about until the early 1900's, and it was only the passage of the Americans with Disabilities Act of 1990 that led to the wide spread accommodations currently in place.  In other words, it's been a long time coming.  The physically disabled have always been with us.  We haven't cured disability, but we've made it possible to live full lives in spite of it.  (I used to work with a guy who used a wheelchair.  He drove himself each day in a car specially equipped with hand controls.  I'm pretty sure he earned more than me too.)

I can't see the destination but I love watching the journey

And here I am, on April 2nd aka World Autism Day, engaging in a Facebook debate about cures vs. accommodation.  Shouldn't people be researching a cure for autism?  Wouldn't you rather that your child didn't have this neurological disorder?  Maybe it's too late for your family, but shouldn't future cases of autism be prevented?  To each of these questions, let me quote from the website www.cerebralpalsy.org:
  "Treating cerebral palsy is almost as complex as the condition is, and there's no cookie-cutter approach because each individual is affected differently.  Although the brain injury that causes cerebral palsy cannot be healed, the resulting physical impairment can be managed with a wide range of treatments and therapies.  Although there is no universal protocol developed for all cases, a person's form of cerebral palsy, extent of impairment, and severity level help to determine care."
The course of treatment recommended includes:  optimizing mobility, managing primary conditions, controlling pain, preventing and managing complications, enhancing social interactions and fostering self-care, maximizing learning potential, and providing quality of life.  Reads like a caregiver's guide for autism as well.  And this is why I don't think finding a cure for autism is a good use of science or funding.

James' smile is the cure for my grumpy moods

Autism is a neurological difference.  It doesn't need a cure.  It does require a course of treatment, therapies and interventions and managing its effects.  Just as the wheelchair has transformed the lives of individuals with physical differences (be it injury or fatigue or muscular spasticity), our autistic loved ones need accommodation for their brains.  I believe research is better spent finding the Autism Wheelchair.  First, because unlike an autism cure, autism interventions and assistance actually exist.  Second, because this will make not only the lives of future generations better, it will make a world of difference RIGHT NOW.

Over a million Americans use wheelchairs to participate in the world around them, to take vacations and work and go out to eat.  More than 3 million Americans are living with an Autism Spectrum Disorder.  They don't want to be "fixed", they just want to be heard.  Instead of eradicating them, I suggest we listen.

www.autisticadvocacy.org
http://www.autism-society.org
http://muleandmuseproductions.com/blog/
http://jerobison.blogspot.com
https://emmapretzel.wordpress.com

Senior Citizens

Before I had my first baby, long before I became the Insomni-Mommy, people used to say these awful trite parent catchphrases.  They would tell me "Motherhood is the hardest job you will ever have, but its also the best job ever."  (insert eye roll)  I also heard "My children are the ones teaching ME!" and I thought, you saccharine-filled idiot, how stupid do you have to be to learn something from a child?  They come into the world knowing NOTHING, and its only because of adults that they ever learn to function.  Your kid is probably going to wind up on welfare with morons like you for parents.  This is just one of the misconceptions I had before my own baptism of fire called giving birth.  (Another was, My life isn't going to change that much...but that's another blog for another day)

I think its safe to say I have realized my error and in fact learn something almost daily in this season of raising boys and wiping butts and seeking refuge at the computer, where all of my friends live.  Sometimes its a simple as learning new facts from a book about phases of the moon, something that I'm sure Mr. Morrison covered in 9th grade Earth Science, but I missed because I hated Earth Science and Mr. Morrison by proxy.  Did you know that the cobwebs you find while dusting your house (bi-annually) are the abandoned homes of spiders?  They build a new web every 24 hours, eating all the sticky parts of the old one to provide thread for the new one.  I didn't, until I read it a few years ago in a 30 page book about spiders.  (Because that's what mothers of boys read.  Pinkalicious does not find its way into our bag at the library)

But then there are the big moments, when being a mother challenges very deep prejudices and misconceptions.  When my heart literally grows bigger because of something I witness in my children.  Like today, when we visited Great-Grandpa Fraser at his nursing home.  A little background on me: I don't like old people.  If your response to that is like Sarah's ("My grandparents are the best people I know!"), then to you I say congratulations.  I don't know what that's like.  To me, old people smell and are kind of worthless, and I can't help but think that if they would all just die, our country would make a huge leap forward in civil rights, race relations, female empowerment, etc.  Recently, I was really moved to try to look at the whole of them differently, however, and I thought a good place to start would be within my own family, within my own county.  So I took the two little boys to visit their Great-Grandpa before naptime.  We brought two books and a toy car, and although I was kind of dreading it (because nursing homes equal death to me), Winston and Michael were thrilled to ride an elevator and run down a really long hallway.  I kept waiting for someone to yell at us (another prejudice I have...old people are mean), but everyone we passed smiled and was just thrilled to see the kids.  We walked into Grandpa's room, where he was asleep in his armchair, and Winston woke him up by throwing the books on his lap.  He woke up terrified, not a great start, but quickly recovered and was genuinely happy to see us.  We talked for a bit, and then I asked Winston to read the books with him, which is when my son really turned on the charm.  He smiled, he laughed, he hung over the side of Grandpa's chair.  He read most of the words ("In a People House"), and Grandpa helped him with the ones he didn't know.  I realized, looking at the two of them, that there is a symbiosis between the very old and the very young.  They both need large print to read, and the "outdoor" voice Winston uses all day long probably sounds just audible to Grandpa.  I feel like we filled the room with happiness and vitality for 30 minutes or so, until Michael decided he was done and threw a fit.  But the boys both gave Grandpa a high five and a nice "Goodbye!" and it was back to the car and lights out for us. 

Such a simple errand, but such a big eye-opener.  I realized that I can be a little uncomfortable, just sit back and watch my darling kids run the show.  They entertained, they enchanted, they did all the work.  And what's more, they had a blast.  It was a great way to spend an otherwise crummy rainy morning.  I never wanted to be that person taking her kids to cheer up the old folks...I didn't even want to be that kid when I was younger!  And so I am extremely impressed by my sons and their impervious charm.  I'm glad we did something different, and I'm actually looking forward to going back.

Autism Awareness

 

April is Autism awareness month...but in my house, every month is Autism awareness month.  Every day of my life is affected by autism, because my son is living autism.  Sometimes it feels like a burden to educate everyone he comes into contact with about his "condition", his "limitations".  Don't get me wrong, I appreciate every single person who cares enough to drop down to his level and ask him questions, those of you who try to involve him in the church programs and the play groups.  But some days I just want him to be able to play and spin and make weird noises and have that be normal.  That's why I love being around other Autism families.  Because the high-pitched shrieks and constant motion don't stick out so much when five or 10 or 50 other kids are doing it too.  I've been finding my people, these other families who know how it is, by doing the Autism Speaks walk and attending Sensory Storytime at the library.  The kindred moms who chaperone the field trips and join the online community through facebook and blogs.  I didn't realize how isolated I felt until I found them, and jumped instantly into the alphabet soup shorthand of special needs... OT and IEP and ADOS, IDEA and DD and SPD.  Our experiences are varied, yet the same.  Does your extended family understand what you're going through?  Do they try to help?  What about friends, neighbors, coworkers?  Do you feel like your child's teachers and therapists are allies or adversaries?  Do you like your doctor?  Do you feel like crap after IEP meetings and parent/teacher conferences?  Do you doubt yourself?  Do you wish your child was "normal" while also loving what he's brought to your life?

Oh yes.  These people get me.  But in honor of this fantastic blue month, I want to share three things I've learned as an Autism Mommy that maybe you don't know.  They are the three things I wish I'd heard from the smug neuro who leveled us with a diagnosis and an indifferent attitude about how our lives would be different from those of the typical families.
What the doctor should have said:
1.  If you've met one person with autism, then you've met one person with autism.  I hadn't experienced much first hand before becoming a mom.  I only knew one person for sure that I'd interacted with who was autistic.  My son is almost nothing like that other boy, except they share a medical diagnosis.  Never assume what an individual is capable of based on one word.  Because its a "spectrum" disorder, these people are all over the place in terms of skills, knowledge, communication, interests...but they are all people, all worthy of love and freedom and life.  Which leads me to...
2.  Different, not less.  I can't even say these words out loud without crying.  They mean that much to me.  My son is ABSOLUTELY different from typical children; he knows it, they know it, anyone spending five minutes with him knows it.  But he is in no way LESS of a person, less worthwhile, less loveable.  He is a circle to his brother's straight line; he is a square peg in a world of round holes.  His mind is a mystery, even to me, the one who birthed him and carried him and spent every day with him, but it is a joy to discover how it whirs and contemplates and makes sense of this life he's been given...
3.  Watch and learn.  Too many doctors give a "prognosis"...fancy medical term for incapacitating fear instilled in parents without much basis in reality.  We sit in the sterile rooms and look at the framed diplomas and imagine these men and women to be masters of the body and conquistadors of the brain, and when they say horrifying things like "Your child will never talk" or "Your child will never be able to have a real friend" or even something completely absurd and incalculable like "Your daughter will never go to Prom", we listen.  We readily accept as truth something that NO ONE has any way of knowing.  Remember #1 on my list?  Yeah.  So when you meet an autistic individual, especially when you parent or grandparent or are an uncle or aunt to someone like my son, put it all out of your mind.  Just pay attention.  Become a student of your child, just like any other parent does, and you will learn their triggers and their shortcomings, yes, but you will find out so much more.  You will see fans where you never noticed them before, you will be aware every time a school bus passes, you will see a snake not as a horrifying predator but something to be stroked and loved.  You will see a boy in a wheelchair and look beyond the disability to see the beautiful person inside.  You will notice every time another person cries, whether it is your baby or a stranger, and you will feel distress because that person is sad and you can't take it away.  You will know where every McDonald's is in your county, and you will shake your fist at those all-too-visible golden arches and wonder why there are so many.  You will realize that the only worthwhile part of cupcakes is the frosting.

I hope I can educate people and dispel the myths surrounding people like my son.  I am so grateful to the other moms and dads who share their everyday experiences and moments of transcendent wonder in ways that are poetic and informative, and I will keep striving to achieve that here (someday!).  And now I leave you with the immortal words of Ms. Jamie Lee Curtis:
"Different means nobody's ever the same.
All bodies are different and so are all brains.
Different is what makes this world so great.
Different is never something to hate."

Two Little Boys

Today was amazing.  I am totally buzzing and ready to drop from too little sleep and too much activity, but I am so glad that I was able to do everything I had planned.  After five months of attending all-day school, I was finally able to spend some time observing my son's class, and I was blown away.  My sweet James is almost six years old, and much of his education has been adapted to meet his special needs as an autistic.  This has mostly centered around speech therapy and efforts to fully develop his fine motor skills so that he can someday write and speak to the world at large.  The process has been long and difficult, for, as his first speech therapist explained, she had to start at zero to teach him language.  But this current school year has been marked by tremendous progress on every front, most noticeably an increase in communication.  One example is the yes or no question; for so long, a question asked in this format got no response, then if prompted to answer "yes or no", he would simply repeat "Yes or no."  So we were overjoyed when he began to answer a straight "Yes" or "No", in accordance with his actual wants and needs.

Therefore, I was completely floored to hear my son sing along with FOUR different songs with his class in circle time, followed by an individual recitation of the Pledge of Allegiance.  Does my son know what "One nation, indivisible" or "Liberty and justice for all" mean?  No.  But he said those words, that unifying pledge, without hesitation, and I wanted to cry, my heart was so full.  James actually has a friend in his class, his buddy from the bus, Sam.  I met Sam on the first day of school.  Its hard to miss him.  He's the boy in the wheelchair.  Now, for all the difficulties and extra services needed to raise a child with autism, I cannot imagine how much more Sam's parents have to do for him.  I will admit, whenever I see anyone in a chair, I just think of how much WORK the people around them have to put in.  And here I sat, in this classroom full of children with special needs, feeling so proud of my child and all he has overcome, and then Sam spoke.  He talked back and forth with the teacher about how he lost another tooth over the weekend.  He smiled and participated in the circle time.  A little later, during their free time, with my son happily crashing cars on the floor, I found myself sitting beside Sam.  Somehow spider webs came up, and how that is a spider's home.  I turned to Sam and asked, "Do you live in a web?"  I didn't know what to expect; with my own children, I don't get much of a response from the imaginative conversation attempts.  Sam turned his mega-watt smile on me, and said, "No."  He waited.  "Do you live in a tree?" I asked.  He thought about this for a moment, and his smile got even brighter (how that was possible, I don't know).  "YES!" he said.  "I live in a tree!  Tell the teacher!  Tell her right now!  I live in a tree!"  I started cracking up at his answer, and then we looked around the room and decided that two other boys in the class live in a cave in a mountain, and James and Sam live together in a house in a tree.  In that moment, that small conversation, I got a glimpse of what his parents must feel every day...not how difficult he is, but what a JOY he is.  Yes, his food has to be mashed and thickened for every meal.  An adult is needed to push his chair around the building, and he rides the special bus that has a lift to get him on and off everyday.  But that's the what.  Sam is the who.

It seems to be the theme of my adult life, this realization that every person is actually a person; not a stereotype or a label.  No one thing defines me, nor my children, so why do I always assume that it does others?  Today was amazing.  Not just because my son is getting a fantastic education, but because I am too.