My Imaginary Friends

I have a group of friends at my son's school. OK, maybe the word "friend" is a bit of a stretch in the normal sense of the word. In the normal context, a friend is someone that you know very well. Someone that you care about and share interests with. In this case, these people don't quite fit that definition. I'm not sure I know the last names of any of them. There are two that I'm not sure I even know their first name. I don't know where they live, nor have we really spoken outside of school or parties. But these people--these moms, dads and caregivers are my Band of Brothers so to speak. Our children are all in an AMAZING preschool for autistic children. The goal is to get them the skills they need to attend "regular" school with "regular" children once they finish. We have been together for the last 1-2 years watching, hoping and yearning for our kids to get to the point of graduation. Some only need 1 year of intensive therapy--others, like Noa needed 2 solid years before he could matriculate into a "regular" kindergarten.  I know these people and they know me. Even though we don't share neighborhoods, phone numbers or outside interests (not sure any of us have time) we share the same hopes, anxieties and dreams for our special little ones.
Somehow, after a short period of time, we came to understand each other's worried looks, sad faces and faces beaming with pride.

There was a time that every Wednesday that I dropped Noa off was horrible. He would fight and cry and cling to the door and it would take forever to get him in. I would leave, stressed and feeling like a failure, half expecting the school to call me and tell me that Noa needed to be picked up. My fellow moms and dads in the struggle would see and give me the "nod" or a quick arm squeeze that would tell me that everything would be OK and that they too had been there. I think in a "normal" school Moms and Dads would say "Oh, its going to be alright. He'll be fine." but my People know that things like that are just hollow words and not at all reassuring. We know that sometimes its not fine and that a minor meltdown can escalate into a major mess and we have to pick up the pieces to put things back together.

We celebrate the little things, that our other friends won't really appreciate.  About how our kid was able to make it an entire day without being put into a sensory suit, or how he made a complete sentence or how he was able to introduce himself to another person while making eye contact. We comment on our kids accomplishments, we quickly talk about therapies, diets and things we've heard about in the hallway on the way to and from pick ups. We celebrate the mundane because we understand how much work it took to get to that little moment. We don't take things for granted. We appreciate each other. I appreciate that we don't have to lie to each other. We don't talk about going to dinner or grabbing  a coffee because honestly, we don't have the time. Between jobs, other kids, spouses, and family we are barely carving out moments to just BE. I know that and THEY know that and we are happy to exist in that "OK-Maybe-One-Day" space. We know that maybe one day things will be different and our children won't need as much time and energy but for right now we are doing as much as we can with very little time and energy.

Nothing excites us more than a birthday party. Because this is one of the few, fleeting moments that we get to come together to truly celebrate. We get to talk, to catch up and most importantly, our kids get to go somewhere where they aren't the "only" ones. We don't have to explain to the other moms why our child acts "odd". If one of our kids has a sensory meltdown we don't bat an eye and protect each other from the disapproving gaze of others who don't know what's going on. Its lovely not having to explain to everyone around you that your child is different. To just relax and let my guard down because I know they all understand. We are all in the same struggle.
All too soon it will be time for Noa to finish this school. We will go on to "regular" school where we won't know anyone and where I'll have to explain to everyone that Noa is different. I will miss those understanding looks, those supportive nods and those quick talks. I will miss the solidarity and support.  I'll even miss the Moms and Dads with no name. 😉 They were my very REAL best friends.

Your Blues Ain't Like Mine

Noa sees things that we just don't see.

He sees the extra angles that differentiate a dodecahedron from a decagon (go ahead, Google it, I had to 😉).

He sees shapes and numbers in everything around us.

He sees colors. Not just our mundane reds, blues and greens. He sees crimson, ceylon and hunter. Some how Noa decided that one of those colors was his favorite. It was blue. Not just any blue but a royal blue. The blue that had the perfect balance of yellow and green that wouldn't make it too light or too dark but sufficiently vibrant. He could find the blue anywhere. If we were out and he'd see a sign with "his" blue he'd sit and want to stare at it. I made the unfortunate mistake of finding a shirt with just the right royal blue. That shirt became "blue shirt" and he would ask for it all the time. Getting him out of the shirt was almost impossible and the tantrums that would ensue after trying to take it off were epic. It became a way to control him (to a certain extent)—

"Ok Noa, we are going to go in the store, if you are a good boy you can have Blue Shirt when we get home"

The even mention of the “Blue Shirt" usually caused him to perk up and to stop whatever behavior that was brewing.

The shirt love expanded. I went so far as to buy more of the “Blue Shirts”. I combed kids stores in search of the blue. I knew his blue but sometimes I was off. My eye couldn’t discern the exact blue that Noa needed. The blue that calmed him.

When I did find the blue I would buy several. For almost two years, Noa rarely wore anything but royal blue shirts. Everyone that knew him knew that it was his “signature” color. The blue shirts began to have name: Blue shirt 4, Blue shirt red, Blue shirt hood. 

Then one day it became a problem. A child with Autism will have regimens and processes that help calm them and focus them. Its important to support them with these but we didn’t want it to become a fixation, to the point where he would refuse all other clothing except for things with royal blue. We started to slowly remove the blue shirts from the rotation. First it became a battle but then little by little he began to accept different colors. Rewards would be in the form of wearing “Blue shirt gap” on Friday or the weekend. We taught him to take his shirt off, to put it in the dirty clothes and to wait for it to be washed.

As with everything with Noa it was a process but one that we slowly and steadily accomplished. His progress overall has been amazing. From being able to tolerate simple things like going into a grocery store to wearing a different colored shirt we have all borne the scars of skirmishes that produced these small victories. 

I used to take so much for granted before this little boy entered our lives. Now we revel in minor accomplishments that are so very big for us. And as usual, Noa continues to teach us to look at things differently, to change our perspective and to see him in his world….where I’m sure the sky is a perfectly brilliant, beautiful royal blue.