An Open Love Letter to our Library

Dear Library Staff,

We came to our first preschool story hour two years ago. 

We had to leave because my daughter had a meltdown and tore apart some shelves.  You may not remember that, but I do.  It took all my courage and strength to try it again when school had started and the summer crowd thinned out. But we did it.  And it was a little better.  Slowly but surely, she came out of her shell.  She started to sing along, to do crafts independently.  Then one day, she ran to you and took your hand.  She hugged you and claimed you as hers.  You ceased to be strangers and became one of us.  A safe place, full of friends.

My son loved you immediately.  He talked of nothing but library days and started checking out books by the dozens. I was shocked when he spoke to you, befriended all the staff, charmed you with his facts and brutally honest commentary on life.  He even found a few friends his age there, though he preferred you.  If I lost sight of him, I found him with one of you.  At the checkout counter chatting about our family dog, at the craft table in deep discussion about his plans for retirement, learning to use the Minecraft server, or behind the director's desk laughing at a poop joke. You're his kind of people. A safe place, full of friends.

That doesn't sound like too much.  But these are huge milestones for my children.  Milestones I wasn't sure they would ever see realized.  Progress I was scared they'd never make. 

 

Because two years ago, my daughter was essentially nonverbal.  She could repeat only ten words at two and a half years old.  Her severe sensory issues prevented her from typical daily functioning.  She screamed all day, she wouldn't eat anything but yogurt, she'd never picked up a toy, let alone a book.  At that time, I felt like I'd failed her.  We were in speech and occupational therapy four days a week and awaiting a full developmental evaluation at an esteemed pediatric clinic.  I was terrified and drowning. Fast forward two years, and the gravity of her sitting happily, doing a look and find book, while chattering away about her favorite color and princess may be lost on some, on you even.  But never on me.  Never will I watch her light up and high-five you without marveling and silently sending up a grateful prayer into the universe. 

 

My son flaps with excitement on the way into story hour.  It's cute and sometimes silly.  And it's progress.  That blur that just flew past the checkout desk on his way to the graphic novel section has such severe social anxiety, we've had to give up every other activity we've tried.  You are his only place. Two years ago, he sat through the stories and songs with his hood up.  I don't know if you noticed, but he never pulls his hood up anymore.  Sometimes a baseball cap or sunglasses, but even those are slowly being phased out. I will always be grateful he's expanding his mind through books, but I'm even more so that you're expanding his comfort zone. If it wasn't for you, I'd never get him to a Lego Club, a science day filled with noise, a story hour filled with touchy-feely toddlers.  He doesn't always do the crafts.  His motor skills are delayed and it embarrasses him that he needs my help.  He has vocal and facial tics. Did you notice? If so, you never make him self-conscious or call attention to them. He walks in your door with a swagger in his step (or just running full speed) because you have made it known he's welcome there. That full speed swagger makes my heart sing.

You welcome my children. You respect their differences and encourage their individuality.  You show them what acceptance means. You remind me what it looks like, when I've all but forgotten.

The ones in the front, lying on the rug?  Those are mine.

 You're our place. I consider you part of our tribe; your building, our wigwam. Your acceptance is our peace pipe. And there's no one we'd rather pow-wow with than you. It's a very groovy thing.

With all my love and gratitude,

Seeker and The Prof's over-caffeinated Mom

Us Vs. Them

I'm going to be blunt.  To keep this short and sweet.
My son with autism is not in competition with yours.  Nor is he competing with his neurotypical peers.  Nor is he competing with others on the autism spectrum.  He is doing the best he can to live and thrive with a neurological disorder that makes life confusing and difficult at times.  It is part of who he is.  It's the only life he knows and he doesn't care if he's "as autistic" as someone else, or "more compulsive" than another child.  The only competition he's concerned with right now is winning a computer at our library's summer reading program.

I am not in competition with you or any other parent I know.  I don't envy you your 'typical' child.  I don't feel we've won one for Team Autism when my son knows a science fact yours doesn't.  I don't feel we've forfeited to The Neurotypicals when my son has to leave a store due to sensory overload.  It makes me happy when you accept and include my son.  It makes me disappointed when you avoid him (and me) because you're not sure what to say.  I try to surround myself with people who support me without passing judgment or trying to compete.  Because that's the kind of friend I want, that's the kind of friend I strive to be.

We're human.  We make mistakes.  We do and say things we didn't mean or maybe they just came out wrong.  We dwell.  We want to win.  I get it.

But hear this:
Autism is not a competition.  There is no us versus them.  We are all in this together.  Autism can be an incredible thing.  But some days, it can also kick our butts. Our children are gifted, but autism itself is not a gift.  It's the toughest, most rewarding job you'll never get through if you don't have support and love from people who believe in you. 

And the clincher? 
There is no winner. 

Sorry guys, but there aren't blue ribbons and gold trophies waiting.  Because it was never a competition.  There is no Us vs. Them.  ASD vs. NT.  Organic vs. Monsanto.  ABA vs. Floor-Time.  PECS vs. AAC.  None of it really matters.  What matters is support.  What matters is listening.  What matters is bravery and advocacy.  What matters is doing what is best for the child you have.  What matters is love.  Loving your child.  Loving yourself.  Loving your community.  Loving all of them enough to say no more competition.  No more negativity, no matter who it's directed toward. 

 

We're all in this together.  No more mockery, bashing, or negativity toward any group of people.  I cringe when I see people ask for "autism acceptance," yet throw dirt at "NTs" or families with "typical" children.  And I ask you please, no more.  Just love from me.  Just love for my spectrum boy.  Just love for yours, boy, girl, spectrum, or not.  Just love for the kids who don't quite know what to say when my son stims.  Just love for the moms who don't know what to say about their kid not knowing what to say.  Just love for the 'typical' kids who made MVP and went to summer camp.  Just love for the moms who are rightfully proud of their accomplishments. Just love for the mom who cries at night because her child might never live alone.  Just love for the one struggling to get hers through the store.  Just love for the moments and the life we have, not the one we see someone else living.  Just love for progress, no matter how small.  Just love.

The A Train

My husband and son both fall on the spectrum.  I often try living their 'autistic experience' by listening to their feelings and perspective.  I ask them lots of annoying questions, since they rarely offer lengthy (or even brief) verbalizations of feelings or thoughts without my badgering prompting. 
So, I ask and I listen.  And I try to imagine.  The hypersensitivity required to feel the vibration of the window air conditioning unit running in an upstairs bedroom by touching a counter in the room one floor below.  How stressful the need to rely on attributes like voice and hair length to recognize friends and family due to almost total face-blindedness. To remove theory of mind and experience the confusion and unpredictability brought on by being perpetually surprised by the actions of others. To become adept at conversing only in song, movie, or book quotes; at using someone else's words to express feelings or communicate needs and wants.  The calm stimming provides, creating mental 'white noise' to prevent over-stimulation. The need to tic that like the urge to sneeze, can't be stifled.  The literal language barrier. The need for sameness, for order.  How upsetting someone's summer haircut or furniture rearrangement can be to a person who catalogs a friend's identity according to long hair or whose mental map of  home is based on the current couch placement. And when those things change, imagining an entire mental file that has to be deleted and rewritten according to the new standard.  When your entire world, thought process, and actions are built upon these rules and orderly files, having to rewrite too many at once or having them unexpectedly deleted, causes mental havoc, and can even temporarily crash the entire system.

I'm fascinated and awed by my spectrummy boys' life experiences. It's the same life I'm living, yet not really alike at all.  It's as if we're on two separate trains heading the same direction.  Their rail line runs parallel to mine. While we pass the same country, same scenery, eat popcorn in the dining car, our tracks may even cross one another, and we will eventually arrive at the same destination (preferably Hogwarts), my beloved boys are riding on a narrow gauge steam engine, while I'm stuck on a diesel (make Thomas the Tank Engine jokes about diesels here).  Our destination and method of transportation are similar, but our journeys are so vastly different.

You don't know autism unless you're riding the A train, using the ASD operating system to navigate the switches and level crossings. I've known my husband for half of my life.  I learn something about him and his journey each day.  My son constantly enlightens me on what his autistic brain is like (I had no idea he was essentially faceblind until a few days ago!).  My husband, my son; they know autism. It is their method of transport, their operating system. To presume you know it for any other reason; well, that simply fails us all. Without acceptance and respect for their journey, a journey in which they see detail and minutiae that is blurred through my fast-track diesel train window, we do the world a disservice.  To assume their operating system is 'less' because it is different, is like saying a ride on an engine powered with coal is less than a ride on the one the diesel train because it takes longer to travel the same distance.  People are used to diesels.  They see the narrow gauge and struggle to understand, to know it.  They want to take it apart, disassemble it to see how it runs. What makes them it brilliant, so odd, so quirky, endearing, and at times, even dysfunctional.   

This curiosity is not a crime. We can learn, and learn much, from people with autism.  I devour the works of autistics like Temple Grandin, Jacob Barnett, and John Elder Robison; grateful and fascinated by the look inside their mind and way of thinking.  It's like reading a brochure or manual for that other railway, that other engine, from my seat on the diesel train.  And while I believe education about something is the fastest way to bring about a modicum of respect for it, I've also found that knowing autism isn't what matters most.  Before you disassemble the train to see how it works, accept and respect that it does work.  Maybe not in the same way as a diesel, but this does not make it defective.  Respect that the tracks look different and the engine is unique.  Learn all you want.  But before you try to take the train apart, remember this:

Acceptance and love trump knowing any day. If education is how you begin your journey to love and respect, I urge you to get your information from someone who knows autism. So, when the trains stop at the station, cross the tracks and visit the narrow gauge platform. It's the one resplendent with detail and full of intriguing characters. You won't be sorry.  You might even fall in love. 

Be Good to Yourself

In the event of a loss of cabin pressure, please secure your own oxygen mask before assisting others....

Anyone who has flown before has heard instructions of a similar sort.

Just as you would secure your own oxygen mask to avoid passing out before you could save your children, you have to stop and take a deep breath in every day life.  Lately, it seems self-care has become a buzzword.  We all realize its necessity and purpose. But we also need the mindfulness to know what it looks like for our unique situation. To know what it looks like for you, you've got to slow down long enough to know yourself. 

My self-care ten years ago looked vastly different than it does today. My self-care has changed drastically since having a second child four years ago.  What worked and made me happy then, doesn't fit the bill today.  What was once enjoyable (window shopping or maybe a spontaneous trip to a theme park), literally makes me cringe to think about today. I am a greatly variable entity, and chances are...so are you.  So, stop right now and ask yourself.  Who am I?  You might be surprised at what you find.

Image credit: www.jkhnelson.com

Once you know who you are and what is most important to you, explore your self-care options.  HINT:  If you don't enjoy it, it probably doesn't count as self-care.  Other than that, there are few rules in this area.  Your budget, whether and how often you are able to find trusted care for your children, your time constraints, your work schedule... all those things are factors, but ultimately, you choose.  Still balking at the whole self-care phenomena?  Here are a few tips to send you in the right direction.

1.  Self-care does not have to cost money.  We run a family budget so tight, it squeaks.  Frankly, spending cash on myself when I know it's straining our budget elsewhere does NOT relax me.  Other than an occasional Mcdonald's latte or trip to the local discount store for a dollar bottle of nail polish or lipgloss, I tend to steer clear from self-care that costs.  Some argue that errands are not self-care.  But for an autism mom who has been through a grocery meltdown, I can say with confidence, a grocery trip made alone with a coffee in hand can feel like total liberation.  Whether you choose to leave the house or stay in, being good to yourself doesn't have to strain your budget.   

2.  Self-care can happen at home.  I'm not good at leaving my kids.  The only people who have ever babysat for us are immediate family members, and this only happens two or three times a year.  As much I'd love to go out with my husband or even alone, sometimes it is just not worth the stress, planning, and fallout from an interruption in routine and familiar.  More often than not, daily self-care for me is getting to do my nails without interruption or sitting down to eat my dinner before calling the kids to eat.  That may sound grossly simple, but you'd be surprised how relaxing it can be to sit and eat an entire meal without having to assist someone, cut up food, clean up spills, and run for extra napkins half a dozen times before sitting down to your own (now cold) plate.

3. Self-care is not selfish.  Becoming a parent does not exclude you from anxiety, depression, stress, or frustration. You will get angry with your children, your spouse, yourself.  You will feel overwhelmed and under-assisted.  More than once. You will feel that no one in the entire world understands just how exacting and tireless the demands of your life can be.  This is normal.  In fact, I would raise an eyebrow at anyone who claims to have never felt this way. Self-care is necessary for your mental, physical, and emotional well-being.  It's not selfish to take a soaking hot bath when you've been carrying a colicky infant for 6+ hours a day to lessen their screaming.  It's not selfish to send your wild and sugar-hyped kids outside to play so you can read a chapter of your book in the quiet.

4.  Special needs parents self-care may not look like self-care at all.  Getting groceries alone?  Sitting down to eat dinner?  Painting your nails?  Getting a three dollar coffee?  Yes, I realize these probably don't count as self-care to some people.  I know a few parents with typical children who have their kids go to the grandparents for the weekend, go out for drinks after bedtime, or get massages with their girlfriends.  It's great!  This is self-care! More power to them!  For me (and many of the special needs parents I know) these things aren't always, if ever, possible.  My child's anxiety won't allow them a sleepover with Grandma.  For some, maybe respite care can't come past 9pm.  Maybe they've had to pay co-pays and buy therapy equipment and there's just no money left for a deep-tissue massage (no matter how badly they could use it). Self-care is unique to the individual. Just remember to respect what it might look like for others.

5.  Self-care can mean relationship care.  Now, this one is for all types of relationships.  Spousal, significant other, mother, father, sister, brother, etc.  I talk.  A lot.  My husband does not.  But he understands my need for verbal expression and he listens and talks to me. He encourages me and validates my capability.  It is extremely likely he is on the autism spectrum, and verbal communication is not his favorite. I feel privileged and valued when he takes the time to talk with me.  In turn, I try to communicate his way.  I make an effort to do things that may not be priority for me, but that matter to him. Most importantly, I do them not out of a sense of duty or obligation, but out of respect, caring, and love.  I want to build him up and validate his capability, as he does mine.  We are individuals with many differences, and we make a point to highlight the good in each other. Take advantage of your support system, whatever form it may come in. These people love you. Let them. And return the favor.