This morning after getting my other two Typicals off to school after what had proved to be a hectic morning as I carefully picked out the perfect outfits for picture day and having to chase the bus to its next stop after missing it at our assigned one I walked into the front door and took in the silence before ABA was to arrive. I walked up stairs and just stared at aiden as he sat in the middle of his bedroom floor in a crouched position while playing on the iPad his back toward me. I crossed my arms and began to think about what the day ahead would hold in store for us.
I love Monday’s and fridays. Those are the days that my other children head off to school and Aiden get to face the day together. It’s our time to reconnect and even though therapy is in session there are times like today where we get two hours alone and most times I just let him roam. This is our two hours of the week were we are allowed to be alone to engage in the quiet and comfort of ourselves. This is usually when I open up my blog and reconnect and this is when he catches up on his YouTube videos and checks out from the world we force him to be a part of.
Today, As I showered him I plugged in my iPhone and turned on one of my favorite Carrie underwood songs to get my day started but not ten second into the song he sat crouched in the tub holding the handheld shower head, covered his ears and began moaning. “Oh, this song must have high pitched sounds I can’t hear” i thought to myself as i reached over, dried my hands and began searching for another song with a mans voice that might not bother him so much. I hit play and as his body began to relax I walked over and crouched on the floor beside the tub and began washing his hair. As i reached over (because he never stands in the shower just sits crouched with his back to me) I couldn’t help but feel the calm. My mind began to find my fellow autism momma friends and I wondered how many of us were doing the same things at the same time. I thought about the amazing lives we lead. Even before I rolled out of bed there were autism parents communicating about the sleepless night they had just endured or the troubles with trying to get their child off the ipad. Struggles all of which i was facing or had faced at one time and I couldn’t help but, for Just one moment, to feel like my life had a purpose again.
As I helped him out of the tub and dressed him in some comfortable pj pants my hockey friend had given me and rolled them up at the waste because they were just a tad bit too long I couldn’t help but take a breath and be thankful for this quiet time we get now. I thought about all the time we had been cheated out of as i watched him get on that big school bus when he was just two years old. After he was dressed i kept my iPhone from his reach and said “brush your teeth first and you can have iPad time” and i placed the toothbrush with blueberry kids toothpaste already on the bristles (as he hates mint) and I watched as he held it close to his lips and moved back and forth in an attempt to trick me into thinking he was really brushing his teeth. I giggled and said, “nice try dude. Show me happy” as this he will usually smile some little smile and i can see just enough of his teeth to brush. I put my hand over his and we worked together as he slightly resisted causing me to use just a bit of pressure to get his teeth brushed as best I could. After he spit and took a drink straight from the stream of water coming from the faucet he looked in the mirror and smiled to look at his teeth and ran over to my phone using the passcode i had no clue he knew and he was gone. I stood there for a moment just thinking about how great he did and began to giggle inside at how far he has come. Three years ago toothbrushing included holding him down to the floor to brush.
After therapy was up and running I set up what would be my “perch” for the next however long, lit a candle, took a big first sip of coffee an pulled out my list of providers that I had compiled the night before with the help of some of my fellow autism parents in the area as we are seeking out new therapies to try and began calling and began dialing numbers.
I called the first two ABA centers and was told by both that there was a two year waiting list for services and immediately said “thank you” and click… I moved on to the next. Thankfully i found one with immediate openings and quickly gave my information and high fived myself in my head. I called speech and OT to see if we had moved up on the waiting lists and indeed we are getting closer. For OT now we are are number 78 on the list (we started at 111) and for Speech we were 229 when we started and we are now number 165 on the list (but was told that one of their therapists went out on maternity leave today) so we are moving up in the world however slowly we are moving closer.
As I hung up the phone and looked at the clock I realized I had been on the phone for over two and a half hours and decided I was done. As therapy ended for aiden I helped him to make a ham sandwich and let him roam. I found my wireless keyboard (As aiden had peed on my laptop last week and killed it) and opened up my blog and began writing.
As I sit here drinking hot tea and enjoying the sound of the dishwasher mixed with his random happy moans in the basement I cant help but feel content. I closed all my blinds to hide away from the world and created the perfect autism world void of any judgment or expectation. It’s like creating a perfect world for just aiden and I and what a beautiful place it is. While i realize that therapy is necessary (at least for now) I think I’m finding more and more that just accepting it sometimes is just as important.
The battle against autism in a world that doesn’t support that battle is exhausting and sometimes I think too much emphasis is placed on therapy to “help” our kids when sometimes all our kids need is just a little space to be themselves in a world that is consistently trying to “change” or “help” or “fix” them. I think that sometimes we as parents, in our own desperation and fear keep adding therapies (not judging I’m guilty of this too) in an attempt to give them a “future”. Well, to that end I have realized these past six months that sometimes its not that your child needs more therapy sometimes they just need some downtime and someone to accept them where they are and to meet them there once in a while.
And I get it. Between your child, other children (if you have them) therapies and even your own internal emotional and psychological battles it’s exhausting and the thought of setting all of that down for a day of “autism acceptance” can be tough (especially when the past couple days have been rough or you just cant seem to extinguish that problem behavior no matter how hard you have tried) but I think its vital. These Monday’s and Friday’s now, I have learned to love them. Especially Monday’s because there is a two hour break in the middle of the day for just nothing and that’s what we do. We both do what we want uninterrupted and its great therapy for the both of us. I let him go with his obsessions and he lets me go with my writing and once in a while we check in on one another to share our I love you sentiments me with the words and him with letting me kiss his forehead and we separate again.
I guess the whole lesson in all of this battling, both the autism and the world is to remember that sometimes the greatest battle can be remembering that there is a person behind the diagnosis and that person needs love and approval and a moment to just be without judgment or fear.It has been this lesson that has taught me the true meaning of “Autism acceptance”. Sometimes, I let the autism go. I just sit back and watch it. I observe it and say to myself “there it is…Autism unrestrained… isn’t it amazing? Isn’t it beautiful? What a beautiful boy with such an amazing mind!” You cant battle something you don’t understand. You cant battle something if you never fully let it be to learn its patterns and what feeds it. The fact that autism has no manual is all the more reason to step back and let it go so you can learn it. So you can use the better parts of it to better your lives. How can you know a child’s strengths if you are always working on their weaknesses. So take a moment, take off the restraints of fear and judgment and just sit back and let it go. Let the silence of it speak to you. Stop filling the silences with chaos and intervention. Just give it a moment to materialize. Listen to it so you can learn from it so you can love it.