I Need To Tell You …
The school Psychologist cut right to the chase. “I need to tell you that your son has Autism Spectrum Disorder.” It was our second meeting, the one where we would discuss Cole’s test results. I was alone this time. Cole had already been observed, and really, how could I concentrate on anything being said anyway with his 2 ½ year old little body alternating between burrowing into my lap and running head first into the walls of the tiny little office? I suppose I sat blank faced and motionless because after a moment she leaned forward, put her hand on mine and repeated, “I need to tell you …”
It took everything I had to keep from clamping my hands tightly over my ears. The earth seemed to stand completely still – I was acutely aware of the harsh fluorescent lights, the roar of the air conditioner, the faint smell of onions as she leaned too close. I didn’t want to hear any more, didn‘t want to feel anymore. Ironic because one of the reasons for the evaluation in the first place was that Cole often assumed the very position I now craved – hands pressed tightly against his ears, blank gaze, slightly rocking. A thought flashed briefly through my head – Aha! I understand. This is self soothing.
I wanted to shout No, No, You‘re wrong… but my heart and my head said “Yes, I already knew.” Cole had been working with two wonderful Early Intervention therapists for over a year already. A speech therapist and a special educator. They were experts in their fields. I was learning so much from them, but Cole was making very little progress. The biggest problem was that we only saw each of them twice a week, and even though we tried different times of the day, Cole was never cooperative. He seemed to have two moods – super high energy running and crashing into everything, or meltdown mode – laying on the floor in hysterics. How could he be learning how to talk and play if he couldn’t calm down enough to interact? Half of his therapy session was spent chasing him around the house, the second half was the therapist giving me a crash course on how to constructively play with him during his rare interactive moments.
About a month after Cole’s diagnosis we went to my niece’s third birthday party. We had begun to really isolate ourselves at that point. Library programs and music classes had been abandoned long before – what was the point? Cole would just wildly run around the room. I tried chasing him and forcing him into the circle, I tried letting him run and “modeling” by staying in the circle … nothing worked and one or both of us would leave the class sobbing. It was becoming clearer and clearer that Cole was not like other children. I dreaded going to this birthday party, but my niece is very special to me and Cole was familiar with her and her house. What he was not familiar with was the noise and the crowd of people we walked into. Hands clamped over his ears he squeezed his head tightly between my knees. Sensing a meltdown I took him upstairs where it was quiet. I sat and rocked him and he started to calm down.
Back downstairs the party was in full swing – kids yelling and running and playing. I felt so bad for Cole – at some points he watched as if he wanted to join in. My best friend came over and offered him a toy baby carriage. I held his hand and started to walk with him pushing it. Soon he was pushing on his own. He stopped briefly to load it up with wooden blocks. Around and around he went pushing the carriage. He had a little loop going. Through the den into the kitchen, past the hallway, into the den. Repeat. Repeat. Repeat. For two hours, Repeat. But he was calm. And more than that, he was engaged. He smiled and stopped and watched the kids and then did another loop. For the first time in over a year my husband and I chatted with adults and ate sitting down and didn’t have to leave the room with a hysterical child. All was going well until they were ready to cut the cake. I had the foresight to take Cole outside – we had been through disastrous “Happy Birthday” songs in the past. I was feeling very pleased with how the whole day went and Cole was now happily outstretched on his belly on the warm driveway drawing great big circles with sidewalk chalk. I couldn’t remember when either of us had last had such a great day.
It was then that another mom came outside. She cheerfully although rather boldly asked, “Does your son get Early Intervention?” “He does” I replied defensively. “Cole is on the Autism Spectrum” – go ahead and try to question my parenting skills – you’re not ruining this day for me lady! “I thought so!” she bubbled. “So is my son!” (I quickly tried to place her son — he was running around with all the kids inside. A bit hyper, maybe slightly quirky, but not at all what I would call “special needs”) She continued … “I need to tell you about Sensory Processing Disorder, Occupational Therapy and the Sensory Diet.”
And so we sat outside and talked for an hour. She called me that same evening, and we talked for two more. I ran out and bought Sensational Kids, and then The Out of Sync Child, and Raising a Sensory Smart Child. From the first chapter, they all made sense. (Pardon the pun!) Cole was a classic sensory seeker. He had his moments of sensitivity, especially to noise, but finally all the running head first into furniture, throwing toys and burrowing under our legs had a meaning. It made sense that pushing the baby carriage with wooden blocks in it was both linear and heavy work and calmed and regulated him enough to “enjoy” the party.
We immediately went for an OT evaluation, and started a Sensory Diet. The difference was incredible. Cole learned how to say his name on day 2 of the diet. We incorporated multisensory activities into all of his therapies and he became a little sponge. Every day we sing, play and move. Three years later I am the super proud Mom of a very bright, very verbal (and still very active!) 5 ½ year old. His diagnosis was changed shortly after starting OT to PDD-NOS. and then this past summer to Asperger’s. Cole has become very proficient at managing his own SPD. He knows intuitively when he needs to jump on the trampoline and when he needs to curl up under a heavy blanket. He starts Kindergarten this year in a wonderful Montessori school that understands how to promote multisensory learning.
I often think back to that moment when I was first given Cole’s diagnosis. How panic and overwhelming fear set in, and my senses shorted out. I can’t imagine feeling that way on a daily – or hourly – basis. We are SO fortunate that Cole was diagnosed so early and has been able to regulate his SPD. I truly believe that his language and comprehension were “locked away” because of his overwhelming sensory modulation issues. I need to tell you … that Sensory Integration therapy and a daily Sensory Diet have changed my son’s life.
I am so very grateful for that wonderful mom who had the courage to share her son’s journey. Thank you for allowing me to share ours.