Look closely at any invention and you'll find some
form of community behind it. Invention happens when
we're interactive, self-expressive, alert, and
willing to enter into change.- John H. Lienhard
When I was 33, I became a mother of a special needs child. The moment he was born I fiercely loved him. He was my third, the only boy with two sisters, a house full of noisy joy to welcome him. He was quiet and sleepy and sweet. Isaac has 22q11 deletion syndrome. He does not have some of the major problems associated with 22q, like heart and palate defects, but he is little and has hypotonic muscles. He looks and acts physically about half his age. Cognitively he's just fine, as far as we can tell from his use of sign language and communication at 21 months.
Months before he was born, as if God was preparing us for this path, our community began to form. I was suffering through a rotten social situation/ power struggle and while I was floundering, several women stepped up and caught me. My oldest daughter was not dealing well with the stress of my pregnancy, our move across the state, and our financial situation. She was lashing out in public and it wasn't pretty. I know now that it was normal, a normal healthy reaction to a stressful time. Like a hug and a warm cup of coffee, these friends surrounded us and loved us for who we are. It all started with an email to someone I had met and talked to a few times, but I knew she had more knowledge than I had dealing with specific behavior challenges in children. I reached out and every day I count that blessing. Instead of being angry at the world alone, I moved forward and took to my books, asked questions, and most of all stayed true to who I wanted to be as a mother.
I never had a chance to feel alone. When I got
Isaac's diagnosis, they were already there, with willing shoulders for me to cry on, to talk to, and to vent my rage at the difficulties of medical beaurocracy. We are also followers of natural health and parenting, but that community just doesn't get what it is like to walk on the edge of medically fragile and natural health. The special needs community can have something like Stolkholm Syndrome when it comes to their medical providers, those folks can do no wrong ever.. We occupied a middle ground, one that was pretty empty and foggy. Then one day I got an email from a lady I had never met in real life.
"Let's start a group," she said. That is how Natural Parenting for Children With Special Needs was born. She gathered up everyone in limbo like us and the group flourished and grew. We connected, shared stories. It is more than that though, through this group, I have healed.
I cannot emphasize how important that community is to a family with a special needs child. Even so, we felt people distancing themselves from us. Awkward silences when we shared our news about his progress, or our difficulties with managing his care, became the normal in social situations. People would guess his age and be off by a year or so and not know how to respond.
Now I know how to respond when someone give him a withering or confused or disgusted look. I wrap him up in love, I show him how fiercely I love him. I beam with pride so the looks of strangers can not darken him with shame.
I am a better mother to my girls because of it too.
