Gently we glided on this breezy summer morning… the birds chattered quietly, as if knowing we needed their hushed tones. My baby girl, now five (and-a-half), was draped across my lap… her breath finding rhythm in our movement until slowly, softly she drifted off to sleep with a smile. It had been an especially challenging morning for her after an especially challenging week for us all, and now we found peace. And finally, I let myself feel this moment. This moment with my angel on earth. My precious daughter, my creative sweetheart, our tiny dancer with a tender spirit and the eye of an artist. I’ve always said she will someday “light up the world” the same way she lights up our lives with her sweet, knowing smile, her contagious laughter, her creative mind… her magical self.
And then I let the tears flow. Never before have I been torn with such a mix of emotions. In my heart I know that she will absolutely be able to light up the world in her magical way. But still… there is a piece of me that is so incredibly sad. Not that this is a new topic for us – in fact, that’s the real issue I suppose. As I kiss the top of her head, breathing in her gentleness, I cannot deny that ache inside. Once again, the autism spectrum has reached our family. Last week our sweet girl was diagnosed with Asperger’s Syndrome. On the heels of being diagnosed with a seizure disorder just three months ago. Oh, and her asthma diagnosis a week earlier. Really?? So I pick myself up emotionally for her and for our whole family and keep us moving forward. But for now, I allow myself this moment to breathe. Well, more accurately – to catch my breath.
It’s been quite an eventful stretch of time. The winter-into-spring (and sort of into summer) has not exactly been kind to us. And so this moment I take to acknowledge, get a hold of myself, and move on.
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Backing up a bit, I’ve known for years now that while filling out pages of questionnaires about our oldest son, we could actually answer “yes/often/always” for our daughter more often than not. Because of where we’ve been along this path with our son (now nine, diagnosed with Asperger’s Syndrome, Sensory Processing Disorder [SPD] and Anxiety), we’ve known the ‘cues’ to look for. So it was no real surprise when our daughter began tearing her clothes off in pain at an early age – literally not able to have any materials touching her skin. We learned many a tricky lesson in those early days, keeping changes of her softest, coziest clothes handy for when she’d decide to undress oh, say… in the car or at the grocery store, or at a playground! Noises, crowds and transitions all bothered her, even with the most subtle (or so it seemed) difference in noise level or the slightest change of plans. Her sense of smell remains ultra-sensitive. We called in Early Intervention when she was two, and with us they marveled at her ability to maneuver her way through her days successfully despite the many challenges she encountered. Although she struggled with motion sickness (and still does), preferred and needed to be spinning, running laps around the house and swinging (and still does), walked around on her tiptoes most of the time and could only handle a limited amount of people around her at one time, our sweet girl found ways around these difficulties to still enjoy herself. She has trouble – and by that I mean she can still become physically frozen today – when faced with changes in floor surface… like walking on a deck where you can see the ground through the strips of lumber, stepping onto and off of an elevator, walking from the sidewalk to the curb to the street, or even room to room with a change in carpet color or texture. But she listened to her body, even at that early age, to know how to handle any difficulty that came her way… and she has fine-tuned her own sense of what she needs along the way. At the age of three, we continued her Occupational Therapy privately along with her big brother under the marvelous care of a true expert in the field, our “Miss Andrea.” Officially diagnosed by then with SPD, our daughter continued to make progress by making the best use of her inner ability to know what her body needed and when. Techniques like brushing and deep massage have since helped her keep her clothes on – thankfully!
Through all of that, we kept going at a good pace. While our daughter’s sensory processing issues involved the same systems as our son’s, most days her needs were a bit different than his. Fortunately, though, we were able to combine much of their home therapy into daily fun activities… and we still do. Then along came the other signs. The ones that I’d started noticing, but put on a shelf one by one for later reference. Like the loss of eye contact. And the other activities that we now know are ‘stimming’ – the first time I saw her flapping her hands, I couldn’t speak. My heart sank and my head went spinning. Eventually I got a hold of myself and put it on the shelf with the other pink elephants… until her evaluation questionnaire this year. Also on that shelf until then were chewing and licking anything she could (from clothing to toys to – usually – my face, arms, hair and hands), sniffing everything and everyone, and eternal humming, just to name a few. Ah, and the ever-increasing intensity of the meltdowns. We all enjoy her sweet humming, by the way – it’s a lovely part of who she is!
And so it goes… here we are, this time with our daughter. Although I can honestly say my husband and I are not so much filled with fear – and true, I’ve known this was coming in my heart… it is still a very difficult thing to hear, see in black and white, and process. So I take this moment, with her sleeping peacefully in my lap after a long morning of meltdowns, to absorb the enormity of this combined with her seizure disorder and the other health issues of our three children. And in the next breath, I feel comfort. As if blown away by the summer breeze on my cheek, I feel relief from my worries. I feel grateful – for these three blessings in my life. I feel a smile on my lips – thinking about all the ways my daughter’s personality brings us joy. I feel the faith and love of our growing network of support. And I am reminded with a full heart that my daughter will finally get her wish… now she will have “her own team” along with her brother in the annual Community Walk for the Autism Resource Center of Central Massachusetts. Gently we glided that morning, on into an afternoon and a life that I would not trade for anything.