My favorite time of the day is when all the therapists are gone and the expectations of the day are through. That quiet time when I lay him down in his bed and I have a moment to just accept him as he is. Its in these times that our eyes can meet and we can talk in the language that only he and I can understand. As I layed him down this evening he continued saying repetitively “I ganna go… I ganna go…Nana coming over Despicable me 2 DVD blu ray DVD” and I knew every word of what me meant. He means that he wants Nana Lola to come over and bring him the Despicable me 2 blu ray DVD. but wait there’s more. Its the way me smiles when I repeat back to him what he said. He loves it because he knows I understand him.
Tonight, I took an extra long time tucking him in as my other children finished watching Moana downstairs. I layed in his bed next to him as he pulled my head to rest on his chest and he pulled my hair tie out letting my ponytail fall around my shoulders. There was a small grouping of my hair that fell over my face and before I could brush it out of the way I felt his little hand touch my head and brush it back for me. he pushed my head back into his chest and continued rubbing my head in in awkward motion but it meant everything to me. I looked up at him and said “Aiden do you love momma?” “No” he said back. “NO?! I said jokingly and began tickling him “yes you do!” I stopped tickling him to see what he would do and he said “tickle me please” and I starting poking his tummy saying excitedly “tickle you please?!….hoo hooo!” and which he replied in a flat tone “hooo hoo.”
After a few rounds of this, we both grew wary and he grabbed my face and held me nose to nose and he started to turn my head for eskymo kisses. he pushed my head back into his chest and started to Lick my face. I began to laugh and said , “ewe Aiden stop it!” He laughed and laughed knowing he was being funny. After about twenty minutes I said, “okay Aiden it’s time for bed momma is ganna go now” I motioned to get up and he grabbed my arm and pulled me back down to lay next to him… “Aiden, Momma has to go now” I said as I pulled my hand from his grip and kissed his forehead. I walked out the room smiling knowing that for just a few moments out of a long day of therapy I was able to stop battling the autism and just stop and enjoy him. I was able to see him connect, smile and just be what HE needed me to be. I would say that today was a success.
These moments in our little autism world are so important. They are the few moments that he and I have to say “I’m still here…I still see you… I still love you (even if I say I don’t) and everything is okay”. Because despite what the world says he should be he is perfect in his own right. If it weren’t for the expectations of society there would be no reason to fear his future. There would be no reason to fear the behaviors of his peers. What makes this journey so arduous is our expectations of what should be instead of what things actually are. I think we as parents and as a society often fail to just accept each moment as it is. I am guilty of this more times than I would like to admit. I fall for this daily but lately I have been trying to catch myself in this thinking as it does nothing to propel anything forward it just promotes anxiety and fear.
For instance, the other day I was on an outing with Aiden’s therapist and we stopped at 7-eleven to reward Aiden with a blue slurpee for doing so well at a store that harbored DVDs. we pulled up in the parking lot and immediately I heard Aiden say from the back seat “DVD…DVD” and there they were five different DVDs on the top shelf facing us through the glass from the parking lot. The therapist walked to the car and i sat frozen in fear as I remembered our last 7-eleven outing that had taken me + 2 therapists to wrestle him out of the store. I sat sideways in the front seat of the car and said, “are you sure you don’t want to just wait with him while i go in and get it?” she smiled at me and said, “there’s the both of us, I think we can get him past it and I looked at her silent and she said, “if he falls on the floor I will take him out and you can get it”. reluctantly I said, “okay, but you remember the last trip”. Long story short we walked in and he tried to sit on the floor but we reached under his arms and lifted him up using our bodies to propel him toward the slurpee machine and we payed and we got in the truck with only a minor disturbance. I sat in the car after buckling him in and she said, “see, that wasn’t so bad was it” as I just sat taking note of the adrenaline leaving my body. I looked in the rear-view mirror watching him taking the first few sips of the blue slurpee he had earned and I couldn’t help but feel exhausted. But in the end I realized that it really wasn’t as bad as I had built up in my mind.
I think that sometimes I find myself dodging the autism instead of looking for him. I forget there’s a boy in there. But its these small moments like tonight before bed that remind me that he is still there. He’s there more than I know. And even if he cant say that he loves me, his actions remind me that he does. and sometimes I need to remind myself that I am only human. Sometimes, I need to stop looking at my child as an autism case as I so often do just to survive another day without losing my mind. Its something so many of us do I think. I have to separate emotion from reality sometimes. this is what makes me appear cold and un-empathetic towards others. Its because I use so much of my defenses during the day that when my head hits the pillow at night I lay sleepless as I try to relive the day in my head through the eyes of emotion and sometimes that is excruciatingly painful because I often see where I missed the mark. But he, in the course of everything is always there, forgiving, loving, cuddling and non-judgmental and that is the purity of the autistic soul and that is the part that I love the most. How many parents can honestly say that their child had never said a bad word about another person because I can. I think in a lot of ways Aiden has it right and the world has it wrong. Maybe if we all just stood back and let him, and others like him, teach us about the world then we would all be in a much better place.