Autism

 So, it's Autism "Awareness" Month again.  Yep.  

I usually try to stay relatively positive in terms of our life with autism, but recently, I just haven't been able to do it.  I'm struggling with a lot of resentment, bitterness and anger, intertwined with grief in a huge knot.  That knot is a constant for me, spending most of its time caught in my chest.  Today though, it's mostly been in my throat.  The tears have been right there, threatening at times today, while just outright pouring down at others.  I'm not angry at my children, mind you--but at autism and almost everything it has brought into my home.  I'm really struggling right now.  I need a good cry.  I need to yell and scream about the unfairness of it.  I need a good therapist.  Still.  I don't want my children to see or know this side of me.  These are my own personal demons and I don't want to share them with my children.  I need to get out of my own head.  I need to get out of my own way.  Sometimes the weight and enormity of it all just hits me--it's real and it's freaking hard.

Avery's psychiatrist used the word "disability" five times in 30 minutes today.  I know this is the true nature of autism and the word "disability" itself is not a dirty one.  In fact, our society needs to normalize the proper use of the word.   However, it's not a word we use much in our home because we don't ever want our kids to fall back on the "I have autism/adhd/anxiety/dyslexia/etc so I can't" excuse.  There are absolutely things they won't be able to do--but it may not be due to a diagnosis.  We also don't want them to give up trying, or not try at all.  They may have to use a different way to get from Point A to Point B, and it might take them a little bit longer--but we still want them to try.  That said, I do feel they are doing their absolute best in every aspect of their lives.  But as his/their mom--it freaking sucks.  It hurts.  It's hard to hear.  It's a big punch to the gut.  

I put awareness in quotes because if you were to ask any of us within the autism community, we'd tell you there's plenty of awareness.  There seems to be such a shroud of mystery surrounding autism due to its unpredictability in who it will affect, how differently it affects each individual and why it happens, that it absolutely fascinates many people. 

Of course, we're talking about the Hollywood version of autism kind of awareness.  Let's be realistic--very few people likely know someone who knows of someone with autism (the current autism prevalence rate is 1 in 54 children)--so the everyday Joe can relate to autism only as far as the most recent show or movie featuring a character with autism (if that).  Most of these characters range from the nonverbal savant, to quirky and endearing, to, well, portraying a child as a spoiled brat.  Typically I stay away from such shows and movies because 1, I live it, and  2, their representation usually just makes my head explode.  Sometimes these impressions make me angry because they hit too close to home.  Anger is often easier than parental anguish.  I have yet to see a character played by an actual person with autism, and I have yet to see a proper depiction of the downright dirty sides of autism.  While some of the acting may be spot on, it's just that--acting.  These actors are able to leave autism on the set and go home to their neurotypical lives at the end of each day.  There's no real understanding of the totality of this disorder. 

When we talk about awareness, what does that actually mean?  For many, it means being afraid of it for your own child--fearing the unknown.  You count your blessings when it doesn't happen to your child.  Perhaps you know about it only in this vague, obtuse manner because it doesn't affect you--you know it exists, but you don't have any actual knowledge.  Maybe you believe it's the result of helicopter parenting (or some other parental fault), not the result of DNA gone haywire--and you believe you hold all the secrets to parenting better (and feel it's your duty to share them), and/or think it's perfectly fine to compare your neurotypical kid to my kids when I try to talk about our daily life.  Possibly, autism is either Rainman or Sheldon for you, there is no in between.  Or, perhaps you've got some understanding of it so you are more patient with the child having a difficult time in the grocery store--you know he's having a hard time, not giving a hard time.  See the difference?

I'm certain you'd agree with me in my assessment of awareness.  Yes Amy, we get it, your kids have autism.  You're a warrior.  You're a saint.  We get it.  Your kids think differently.  Your kids have meltdowns.  There are certain situations they can't handle.  Yeah, yeah, yeah, we get it.  

The word autism has just about become a buzz word these days.  It's certainly advantageous for many.  There are people with no attachment whatsoever to autism who profit from it, making shirts and hats and pins and magnets and stickers (some of which I purchase, but I try to vet the maker first).  Others profit from making weighted products (for which I'm grateful), fidgets and other sensory and autism related items.  Very few of these people even know of someone on the spectrum.  I obviously can't possibly know every maker's motive--are they genuinely interested in propelling the autism community forward, or are they just in it for the money?--but sometimes it really just rubs me the wrong way.  I love my children and I do not believe their diagnoses to be a point of sale for others.  Autism has almost become a racket--all the therapies, the necessary stim and sensory items, the specialists, the physical provisions other parents need to care for their adult children, law services, day care, home care/respite, and facilities for adult children--all of these are steeply priced (yet incredibly necessary) and for many, out of reach, even with insurance.  

Yes.  You can't get through Etsy, the day's news, college classes, tv, social media and an abundance of other outlets without being made aware of autism.  It's out there, folks!   

So yes, there's plenty of awareness.  

But what of acceptance?  After all, this is the ultimate goal of any parent of a child with special needs--knowing our children will be accepted.  What of public education?

So let's talk about acceptance, then.  Let's talk about education.  As parents, we need to know our children will be accepted and respected--not because of your pity, not for social media likes and other forms of saintly recognition, but because you and your children genuinely believe our children are worthy of such treatment.  After all, don't you want to be treated with respect, and liked based on your own merits, your own personality and your own morals?  For the record, please don't ever confuse pity and virtue signaling with acceptance and respect.  Will you and your children be kind to my children when I'm not there to stand guard?  Will you make them feel seen and heard?  What are YOU teaching your children?  How will they behave when you're not there?  You can be just as aware as you want to be that autism exists, but unless you are properly educated about it, you're still going to judge me as a bad mother and my kid as a brat when he's melting down because it doesn't look like your Hollywood knowledge of autism.  One of my favorites: "He doesn't look autistic!"  Well thank you, that's because we use a lot of make up to cover up that particular blemish!  You still won't be able to comprehend the fights with insurance and schools, the waitlists for therapies and specialists, the absolute need for that piece of paper with the diagnosis on it necessary to receive any sort of help, the meltdowns which leave you and your child feeling like wet noodles, the outbursts resulting in physical harm to you, your child, someone else or property, the mental and emotional fatigue in just trying to get through each day.  I'll share a secret with you: I have yet to read the littles' full evals from our trips to Children's for their diagnoses.  I just can't bring myself to do it.  I've caught bits and pieces as I've made photocopies for specialists and therapists, but I always dissolve into tears.  I know I need to read them, but it's something I just don't feel I have the strength for.  Most nights I go to bed feeling as though I've failed my kids.  That's just how it is. 

I am not a saint.  I am not a warrior.  I'm certainly not Super Woman.  And yes, if this was your only choice, you could in fact do what I do everyday.  Not doing it is simply not a choice--and not doing it well is even less of a choice.  My kids are not your inspiration.  They deal with things far beyond their exterior quirks.  They have executive functioning disorders and higher learning disabilities.  They constantly battle their own brains, which often betray them.  Ezra is behind academically by at least two years.  No amount of rigorous, intense homeschooling is going to catch him up as far as he needs to be--and it's also not fair to him.  He loves school.  He's excited about school.  But right now, he's simply not good at school.   My kids have bottomless anxiety.  I have bottomless anxiety.  When your child is released from the care of any particular therapy, you really want it to be one of those released-from-captivity butterfly moments--the sun is shining, the birds are singing and your little butterfly just takes off!  Instead, it's more like a turtle being released--he slowly takes four tentative steps, he stops, and while trying to turn around, he tips over on his back.  Oh, and it's pouring.  We are in the trenches day in and day out.  Therapies and other necessities often bankrupt many families.  My kids are square pegs in a round hole kind of world.  They aren't going to fit in.  I can't--and won't--force it.  And that's just fine.  My job as their mom is twofold: to help them learn to adapt (not change, mind you) so they can function in this world without me, and to educate the world to allow my kids grace.  For my kids, this means therapies upon therapies, it means daily grace and mercy, it means homeschooling and practicing our coping strategies.  For our world, it's a lot of leading by example, screaming talking about what my kids need and how best to help--it means being an endless loop for them.  Many times, especially when we meet with a dead end, it means circling back around and starting over.  It means doing things our own way and making our own path.  It means teaching my kids from the very beginning it's absolutely necessary to use their voices, to speak up, to advocate for themselves, to ask questions and to answer the unasked questions of others.  

Acceptance means my kids being able to go through life without others questioning them any longer.  It means the parents caring for their adult child no longer have to be terrified of dying before their child, or wondering how they're going to pay for the next case of adult diapers because these things are already taken care of.  Acceptance means insurance pays for necessary therapies and items--and it means those therapies and items are affordably priced.  It means parents receive the help we need when we need it.  Acceptance means more than adequate representation and inclusion within neurotypical communities and activities.

There's so much I want you to learn about autism as a whole, and my kids specifically--but this is a good start.  Just like any parent--Just.  Like.  You.--I want my kids to feel safe, to be safe.  I want them to be loved for who they are and to be comfortable in their own skin.  I want you to get to know them, to really know their personalities beyond autism.

I want the world to see them the way my husband, God and I see them.