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.