I...want...

When Chandler first started speech, he was less than two years old. He wasn't talking, we knew something was wrong, but we didn't have "the diagnosis". When it came, I convinced myself he would talk by three. Four. Five. Six.....I slowly let my death grip on hope slip away. I remembered days of sitting in front of him with flashcards, reading the words slowly and turning his little face to mine. "CAT"..."BOAT"..."TREE"...and he would smile and turn away. Or on worse days, he would scream and tear the cards out of my hand. He had tears falling, I had tears pouring, and I threw the cards down in frustration. I walked him into speech therapy, down the elevator, sat in the waiting room every week waiting....waiting...hearing he did "okay", he did "fine today".
We finally had a breakthrough or two, but it was such slow progress, that last year when he began to use one word requests like "Milk" and "Bath", I was satisfied. It hurt me because I knew how hard they were working, and I always wondered if they thought it was hopeless, but I could never bring myself to ask. This rudimentary communication was going to be our lives, and I sadly accepted this with a stiff upper lip, and vowed to work as hard as I could to improve his multimodal skills. We got the IPAD, I enrolled in ASL (sign language course), and I began to talk to him more, and enunciate my words, and speak louder, anything I could think of.  I watched him work for others, in speech, in school...he was improving, wasn't he? Was it me? Am I not doing enough? I heard the calm, stern voice of his speech teacher, his para at school, my voice, my husbands voice....we were all working with him, it wasn't really fair to beat myself up over and over for it, but I just...can't...help it.
So Tuesday afternoon, December 14th, 2010. I was typing an email on my laptop with a pen in my mouth, my hair up in a snowband, and my feet on the coffee table when Chandler walked over to the fridge and pulled out a snack pack. He walked over to me and held it. I stared and was about to start with some prompting and ask what it was that he needed. His mouth opened and I heard slowly and painstakingly "I.....wah....puh-ing"...the pen fell out of my mouth, my eyes quickly welled up with tears, and a ragged breath and a little squeak was all that came out of my mouth. "YES! You want pudding?!" I jumped up and held him, trying not to scare him with all the tears. I laughed and he laughed, and we got spoons and ate double snack packs. My early Christmas present. My heart overflowing with emotion. My son, I have waited so long. SO LONG to hear your first unprompted sentence, and if it never comes again, I will be happy. God, I will never let my hope waver again. Hope is sometimes all we have.

Chandler and the Christmas Party aka Girl Scouts Autism Awareness Day

So, every December in our community there is something called the Winter Fling. It's basically a special needs children's Christmas party where there are girl scout volunteers that are paired with a child. They have a gym filled with activities and rooms for Arts and Crafts, Music Therapy, and Santa and Mrs. Claus is available to see. This is a bittersweet day for me every year. First of all, I love the girl scouts for doing this, they are adorable, sweet, and questioning girls but when Chandler was paired up and they handed him the "gathering your crafts, prizes and treats" bag he promptly dropped it at her feet and covered his ears. She looked at me with huge eyes and asked "Why is he covering his ears?" Oh my dear girl, meet autism. Autism means he won't respond to you when you say "Chandler, lets make a Christmas card!" My friend Kate, and her daughter Emily were being paired up too and I heard her girl say,"Emily, first we can decorate cookies, and then we will make a pipe cleaner candy cane." (I must say when we were finished and Kate told her husband that story, I'm not sure which one of us was giggling harder). Their intentions are wonderful and my heart breaks because they are unprepared and the experience is dulled for both the volunteer and the recipient. She looked nervous when Chandler used a third of the green sparkles to decorate his cookie, and made only dots on his Christmas card by smashing the red marker tip into the paper with vigor.  We move on to music therapy time (a favorite for so many children there). Chandler has two favorite instruments that he will ONLY play, and Emily is assuring that all children have their appropriate mallet. Something angers her, and one drum goes flying across the room. "Emily's here!" I see the therapist say with a big smile. She is familiar with many of our children. The girls kept deflecting to us with unsure smiles and sweeping attempts to keep the interest of their charge. I pulled out my camera to keep Emily from her excited, full bore running scan of the room, and I wrapped Chandler in my arms to play Tom-tom drum on the floor while he admonished me with an angry noise for holding his hands. It is a beautiful and amusing moment for me. Kate looks stressed, but is laughing at Emily announcing "Attention, attention" to the room from a podium at the back. Our quirky, loving, gorgeous children are having fun THEIR way, and its just fine.
Time for Santa! This year my eyes fill with tears as Chandler actually sits on Santas lap. I help drag out the words I...Waa (want)...and I wait...(we practiced saying video game). He said ...Pop Tarts. Santa looks up and me and says with a grin "Pop Tarts! Okay!" (Thank you Santa) and he hands Chandler a gift bag. Chandler frowns. (This is not a pop tart). And we gather our things to leave. I give him an extra hug for being brave today, and walk out into the snow piles and try to keep them from plowing through them on the way to the car. Dear Girl Scouts, I have made it a promise to come visit you and explain what I can to help you understand so that this can be the experience for you that it should be. May it be half as beautiful and inspiring as it is for me. Mom to Chandler, Autism Educator