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My heart sings when you grab my face and give me a “love kiss” so when the neuro-psych report says that you are behind and immature for your age I don’t mind. If this sweetness is immature- I want it, I want every last minute of it. And frankly I think the world needs more of this in our children, for longer. When people say that children on the spectrum have a hard time with emotions I know this is true but, I also know it’s not the rule.
B you are MY warrior, you persevere, commit and work harder than any little boy I know. At 18 months your work began, well over a thousand hours of various therapies; ABA, OT, speech, and social skills groups. If you were an athlete you’d be what they call “in season year-round” this life is your sport and you are playing a great game. And the promise to you from mommy and daddy is that no one will ever bench you.
In the beginning, I had no idea what to expect, how to be a mom or a special needs mom to you, but you guided me in subtle ways. The things you needed you knew … like when you would cuddle in small tight crowded places. Compression calmed and sorted you. You taught me this about you even before the specialists did.
I remember when you learned sign language I was in awe; how could my little baby be signing? You were quite amazing! Then there was PECs those little tiles littered the house but sure as the sun would rise you brought us picture tiles to communicate. Watching you learn to communicate in this way, I started to understand the feeling of parental pride, it swelled in me. And then- you said your first word “more.” It wasn’t mommy or daddy but it was just as amazing to our ears, we would finally hear you express what you needed and how we could serve you. There is nothing more powerless than that feeling of not being able to give your child something they need. “More” was so much more than a word.
Over the years, I have watched you try and tolerate new textures that make you squirm and some that make you scream “no.” You patiently navigate loud crowded places with hands to ears trying to work through the obstacles that most of us call a normal day. And together we have sat outside birthday party rooms because the singing is just too much and, my heart melts when you politely ask “may I go home now?” I know this world can feel wrong but you always hold on and play your best game. I am proud of you.
Watching you do your work, this sometimes very hard work of trying to “fit in” can weight heavy on my heart because I want nothing more for you than happiness. I don’t know which of my choices for you will be considered the right ones because I know only some will. My hope is that the ones that are wrong will only leave minimal scaring.
And, someday I will to tell you story of how you saved me. This is also the story of how your daddy battled cancer won. And during the storm YOU and your needs were my anchor. I will tell you how grateful I am for you and that your needs became mine in more ways than one. So, I thank you my little hero.
Today more than ever your joy, your smile, and your laugh lift me. It is my honor to be your mother, you make me better. Through you I am learning acceptance of the world in a new way. The world will not always bend to the needs of “our team” but together as a family we will always navigate it together.
I’m asked sometimes if giving up my career to be home was hard, there were some terrific parts of my career that prepared me to be your mom. I gave up nothing, it was part of the preparation for the big game, the one that mattered the most, you.