Monday, April 1, 2013

"...I understand why you can't raise your voice to say..."

Learn the SignsIt's April, and it's Autism Awareness Month!

At this time last year, we had just officially learned of PJ's diagnosis, and while the love I have for my son never wavered- not once- Autism was still a dirty work in my mouth. I wasn't ready to face it outside of the little bubble that contained PJ, Pete, and myself. Now, I know that having a child with Autism is like holding a rose with no gardening gloves. There is a risk of being stuck by a thorn, but you take it because it's worth it to hold something so beautiful.


When PJ was 16 months old, my husband and I noticed he still wasn’t speaking very much. At the time, we weren’t very concerned- he had turned over, crawled, pulled himself up, and walked a bit later then his peers. We mentioned it to his pediatrician, who was also unconcerned. Still, when he turned 18 months and still wasn’t saying any words beyond “Ma” and “Da” it was suggested that we contact our state Early Intervention Program and have an evaluation set up.


In August of 2011, we made our first call to Early Intervention. I left a message and received a call back from a very nice service coordinator a few days later- in the middle of a play date, in fact! I stole away into PJ’s room while my friend, very kindly, wrangled all of our children so I could take the call. After a brief conversation in while I answered a few basic questions, we had an appointment set up for an initial evaluation.


At the time, Autism was a the back of my mind but did not seem like a real possibility. PJ wasn’t speaking much, but he otherwise seemed so engaged in life. Still, I was nervous. There were strangers coming over who were going to look closely at my son. What if I was missing something? What if they thought we were terrible parents? I had a million ideas in my head of how we might look to strangers, so I did the only thing I could.

I cleaned our placed like a goddamned lunatic!

I am not kidding. Let me just explain right now that I am to housekeeper what Ke$ha is to decorum. Dishes pile up in our sink and laundry usually goes from back to basket to washer/dryer and reverse. Books live in haphazard piles in any spare corner. We never make the bed. But something possessed my tiny little brain and I cleaned like Martha Stewart on diet pills. Anything in view was scoured and straightened. I cleaned out our pantry. I redecorated our bathroom after a feverish trip to Ikea. I hung pictures on the walls and made sure there were yummy things in the fridge. In short, I lost. my. mind.

The day of the eval, the therapists were an hour late; a sweaty, nerve-wracking hour in which I did my best to keep my toddler from destroying all of my hard work. When they arrived, we chatted for a few minutes and then they got down to work. PJ was given puzzles to solve, blocks to build towers, objects to identify. They watched him walk and run, climb stairs and pinch Cheerio’s. They looked at our baby and told us things we never even considered. Can you see how his feet turn out? He doesn’t run the right way. Does he often not answer to his name? His play skills seem lacking for his age. He's only saying a few words? PJ wasn’t able to focus on specific tasks for an extended amount of time. Suddenly, PJ’s high energy, his love of movement, his passion for bouncing and climbing…all of the things that Pete and I thought gave PJ such sparkle were “red flags”.

Frig.

I tried to keep my calm while the therapists retired to our kitchen to enter information into their computers and find out if PJ met the requirements to be eligible for Early Intervention as dictated by the matrix. Pete and I made nervous small talk and watched PJ play…if that’s what it really was. After about 20 minutes, everything was complete and the therapists returned to the living room to let us know that yes, PJ was eligible for Early Intervention. They were not pediatricians and could not make a diagnosis, but yes, all of those “red flags” pointed to the likelihood that PJ did indeed have Autism. While he did score well in many of the categories, he struggled with communication and his fine motor skills were also cause for alarm. Pete and I were given a stack of paperwork, instructions on how to set up an eval for occupational therapy, and left to our own devices.

I tried to decompress as I flipped through the paperwork. Yes, we hadn’t expected that outcome, but the therapists were extremely positive and we knew we were doing the right thing in engaging the services of Early Intervention. PJ was only 20 months old and would be eligible for services until he was 3- we had over a year to work hard and give our boy as many advantages as possible. I was feeling good, and then I saw his scores for Communication- my sweet, smart, funny, handsome 20 month old boy scored at an 8-10 month level.

Aaaaaaand that’s where I lost my shit. Eight to ten months? How could that be? Did I somehow miss the fact that my sons communication skills just hadn’t developed? I must have, because that number shocked me all the way through.

In a matter of three hours, all of the dreams we had for our son were rewritten. Would PJ ever start to speak, or was what we thought was just a delay was actually something that had no beginning. Would our son be able to make friends? Would the sweet blonde boy who loved to be hugged drift away from us like a boat lost at sea?


We got ourselves together and headed out the door- after all of that, we had plans to meet my parents for dinner. My parents, who had no idea that any evaluations were going on or, for that matter, that there were any suspicions about PJ’s development. Sometime during his eval it had started pouring, and as the rain pounded our car, tears streamed down my face. Pete held my hand and tried to be positive and strong, the way my amazing husband always is. He is always the glue while I am falling apart, and this ride to Brio Tuscan Grille was no exception. We pulled up and, not yet ready to talk about it, I put on a brave face and ordered an Adult Beverage. A huge one. Out of character for me on a normal day, but on that rainy, unusual day- one that I still had no idea of its significance- that drink was delicious.

All of us- Pete, PJ, and myself- have come so far since that rainy August day. Things are different and yet the same. PJ still has Autism, but when I look back at that original checklist of skills I can see that he has come so, so far! While still behind his peers, PJ is speaking, socializing, learning and loving. We work hard to make sure that our baby stays present, and that he is aware of what a beautiful world there is at his feet.

There lies some of the reasons for this month-long project. This blog comes in to allow me to stay present, too. I have a terrible habit of retreating within myself when there is something wrong, and while it’s passive-aggressive at best, blogging helps keep me above water, casting out the feelings, needs, and fears that could very well sink my boat. At this time last year, PJ had only had his diagnosis for a few months, and it was still an open nerve, raw, and I wasn't ready to touch it. I was still feeling that if I didn't talk about it, maybe it wasn't happening. Yes, my son has Autism. No, it’s not what I wanted for him. But if I let myself go under I might drag my son and my marriage down with me.

We might flail, or swallow water, or nearly sink, but we keep on swimming, baby.

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This shirt. I want it.
This week, Sevenly has chosen to donate to Autism services- each purchase will put $7 towards helping a child with Autism work on communication skills. They are just under halfway to their goal of raising $120,000, and it's only Monday! And no wonder- these are freaking cute clothes! I know that I am not really someone who should be giving fashion advice, but just trust me on this one. A few items from this line would be of significant value to my paltry little closet! You should make Sevenly a part of your closet, too!

Do it. Seriously.




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