We Will All Be Better For It

We have two amazing and incredible boys with disabilities.  They both rock extra special hearts as well as Individualized Education Plans at school.  Amon’s disabilities are less noticeable than Leo’s and honestly, that’s why I talk more about Leo’s.  If you are around Leo for any amount of time you will see it.  You’ll see his autism shining through.  You’ll notice the special way he talks and acts.  You’ll see it on his precious little face.  When you’re around Amon you likely won’t catch Amon’s disabilities at all.

Leo has given us this small & yet huge direct doorway into the goodness and crappiness of other people’s humanity.  While we know Leo and absolutely see how he brings value and magic and love to the world…that the world needs more Leo’s…not everyone thinks this way.  In fact, I can see how Leo is treated differently than Amon among people and out in the world.  And that’s pretty damn crushing as Leo’s mom and dad.  I think it’s fair to say, a lot of parents in similar situations likely can relate.

As parents I think we’re prone to notice all the things regarding our children.  We know where our kids are 94.2% of the time.  We’re keeping our eyes on them in large crowds.  We’re noticing all the little ins and outs of growing and changing…are they hitting milestones, are they not.  As parents of children with disabilities I feel like this gets heightened a bit.  If something is off with Amon or Leo my mind kicks into overdrive.  Like if Leo randomly falls asleep one day before nap time my head moves into investigation mode.  Why?!?!?  Why is he already falling asleep so early?!?!?  And I start moving through my mental & physical checklist.

Fever?

Heart Failure?

Sickness?

Low oxygen saturations?

Fluid around his heart?

Just tired because he didn’t sleep well last night?

A fluke?

We’re trained to notice all the things and then work through those, alone and with medical professionals, to find answers because sometimes it means life or death or a doctors visit instead of a hospital stay.  We are constant investigators.

These observant tendencies carry over into regular day life.  As parents of one child with more noticeable disabilities and parents of another child with typically unnoticeable disabilities we see how they are treated.  When someone doesn’t want their child near Leo, we notice when they move their child to another location because of some lame ass excuse they are verbally saying out loud to themselves…AKA saying it out loud because they are trying to make us think “IM NOT MOVING MY KID BECAUSE I DON’T WANT THEM NEAR YOUR KID.”  When a parent only hovers when Leo is around, we notice.  When they strategically place their child where they can’t physically get to Leo or Leo can’t physically get to their kid, we notice.  When people stare, we notice.  Can I just pass out stickers and tees that say, “Staring isn’t caring, asshole.”?!?!?!   When they mumble words under their breath or shoot someone else a look about Leo, we notice.  When people talk or point out all the ways Leo struggles VS all the goals he has met or the way he works so hard, we notice.  And by God, when someone else thinks they know how to parent Leo better so he “just won’t act the way he does”, we notice.  All the different ways others go about trying to limit their or their child’s interaction with Leo, WE NOTICE.  It does not go unseen.  They are not being sneaky or clever or discreet or smart.  They are being unkind and dumb and rude and exclusive.  And they are missing out on one insanely awesome kid!!!

What kills me is Leo works so damn hard.  If only you lived in our home and could see the ground he has covered in his short 18 months home.  He is at the doctor every week for blood draws and cardiology checks.  He goes to modified pre-school where he does speech and language therapy.  He does physical, occupational and sensory therapy.  And he has ABA therapy every day.  He works so hard on literally changing the way his little brain processes and teaching it new things.  Sometimes I sit and try and imagine what it’s like to be in Leo’s brain.  To be so little and to work so hard…it makes me teary and also so insanely proud of his hard work and determination.  He’s a big hitter and pincher and literally is grinning ear-to-ear when he does it.  He hit a kid the other day and when I told him he had to be soft and tried re-directing him he said, “Play.”  His precious little brain just works differently.  He’s not trying to be malicious.  He’s excited and trying to fill his sensory needs and play all at the same time.

Leo is brilliant a thousand different ways.  He also absolutely knows and recognizes people who really love and appreciate him as the human he is….exactly as he is now…no changes necessary.  His siblings are all smitten.  I laughed because Leo recently hit Amon on the back and Amon didn’t even blink, but turned around and squeeze hugged Leo which was just what Leo wanted.  My kids get it.  It’s not always easy, but they understand the magic of Leo.  My friend Ashley’s kids, Abram and Lorelei, are the same.  They both gush over Leo.  Abram always offers up a big hug for Leo and it’s fair to say Leo is slightly obsessed with Lorelei and I really believe it’s because he knows she genuinely likes him just the way he is.  I’ll never forget one time when they were swimming together.  Lorelei was swimming over to Leo and he got so excited that he chucked a pair of googles at her.  I told him no and re-directed while Lorelei just smiled sweetly at him.  Later Ashley told me that Lorelei said, “Leo can throw stuff at me any time he wants.”  Hahahahahahaha.  Gah I love that.

I’m not saying it’s always easy being buddies with Leo, but are any good relationships easy anyways?!?!  Nope.  Because we’re all human and we all struggle in areas and valuable relationships take work from all parties, but it’s well worth it.  Leo will love you unconditionally and forever and you’ll get a front row seat to his sweet enchantment and goodness.  He’ll teach you just as much as you teach him.  And after he sees you, you’ll be the topic of his stories and he’ll talk about you non-stop.  My friend Bekah, who is our carpool angel in the afternoon for Winter and Amon, is the perfect example.  Bekah adores Leo and loves on him every chance she gets.  She got her car stuck in the ditch in our front yard and it was all Leo would talk about FOREVER.  “Bekah.  Car.  Fell.”  But then Bekah brought him an icee when he was in the hospital a few weeks ago and now Leo has a new story, “Bekah. Icee. Leo.”  Bekah always chats with him and waves when we pick up Amon and Winter or she brings him a popsicle out to the car.  She gives him big squeezy hugs every time she sees him.  She gets down on his level and treats him like her own.  This week we were in Disney World and Bekah and her family were there too.  We ran into them and through the sea of people Leo saw Bekah and then nothing could have stopped that boy from getting to his Bekah.  He got to her and gave her the biggest hug and proceeded to remind her, “Bekah.  Icee.  Leo.”  Word on the street is it made Bekah’s day because Leo is a day maker.

I don’t really have a ton of answers.  I wish I did.  Like how do we make everyone more inclusive and accepting of all kinds of different human beings.  How do we all just chill out a bit and choose to soak up the beauty that’s found within all of us.  How do we teach parents to breath easier and offer grace instead of freaking out when their kid gets pinched by another child with a disability who cannot control their actions and behaviors all the time.  How do we teach people not to stare and that one of the best things we can do is offer up a kind smile.  How do we teach people that unless they have parented or taught children with  disabilities then they have no leg to stand on and their opinion on how to parent our child is actually void and completely unnecessary.  How do we teach the world that being an asshole isn’t cool.  How do we teach our people that everyone is worthy and amazing and we all have plenty to offer this world.  How do we educate an entire world on the fact that we’re better together and we each contain love to enrich and give to others.

A disability does not make you less of a person or change the amount you contribute to this world.  People with disabilities aren’t to be pitied.  And we’re certainly not to form relationships out of obligation or pity, but out of a desire to get to know a person and have a beautiful, mutual, flourishing friendship.  We learn from one another and become better humans together…not apart.  And a friendly reminder, parents of kiddos with disabilities pretty much see everything, so maybe next time think twice and instead encourage your child to form a friendship instead of choosing exclusiveness and avoidance.  They will be better for it.  You will be better for it.  We will all be better for it.  I promise.