In the short amount of time (years) that I have taken to this computer to share our journey with apraxia, special needs and special education, I have met a lot of people.
Those in denial.
Those who are angry.
Those who have accepted and are working with what they have and making the best of it.
And then there's Jen.
An awesome Mom and even more awesome of a writer.
A gal after my own heart....whom I love with my whole heart.
And after you read what she wrote....what she experienced...what she dreams for her child, you will love her, too!
Thank you, Jen Jen, for speaking from your heart.
A BillboardSuccessful. Accepted. Loved. Those are three terms I often use when people ask what I want for my son, Wil, in his lifetime. As parents, we all long for our children to be a part of something bigger in this life. To find a niche; a place in this world that they can call their own and be accepted. Wil has had to fight tooth and nail in his short sixteen years on the planet for things that can come easily for others, including his siblings. Speaking. Writing. Blowing his nose. Remembering names. Lifting a spoon full of apple sauce to his mouth without making contact with his cheek instead. Those are little things for some. Large hurdles crossed for others.
We labored for four years to find a diagnosis for our son. As a graduate with a degree in early childhood education, I knew what was going on with him developmentally at the age of two was off in many ways. It wasn’t until Wil was in first grade, that we took him to a doctor and a physical therapist, both possessing extensive clinical knowledge in Apraxia, that we had even heard of the word. The physical therapist asked Wil to write his name on a piece of paper. He grabbed the pencil with his right hand, yet used the pointer finger of his left to guide the pencil across the page. I will never forget Dale Turner, the best PT provider on the planet, turning to me and saying, “This poor little boy has Apraxia! Why didn’t any professionals see signs before?”
I had no answer for her.
Mostly because professionals in the school settings were quick to label him autistic, whereas those in private practice (doctors, therapists and clinicians) knew it wasn’t a matter of being on the Autism Spectrum Disorder Scale, but they just couldn’t put their finger on what it was with Wil. He was quirky. Quiet. Ran on the playground like Napoleon Dynamite. He was also the first one to comfort a sad classmate, hug his baby brother, and want to be a part of the activities of others. Mike, my husband, and I always felt like he was a little onion. So many layers to peel to get to the core of what was going on. And so now with that brief history of our personal journey behind us, I want to get to the heart of the matter of my blog post today. Thanks for sticking with me.
Apraxia is still misunderstood. After a recent conversation with a teacher in Wil’s building where she told me he is, “The face of autism,” and meant it with nothing but the best of intentions and love in her heart, I was caught off-guard. At first my voice dropped a few octaves as I corrected her, yet the spirit of the conversation embodied love and acceptance of all students with disabilities and this teacher meant no ill will in any way, shape or form. I realized then and there we as parents of apraxic children still have a lot of work to do.
Yes, I wish that I could walk into a case conference and not be the one to educate the staff every year on what Apraxia is. Yet, I am glad that I can and will always do it in the spirit of helping them, help my son. Yes, I wish that educators had more in-services provided to them to understand not only more about this diagnosis and its effects, but also for other diagnoses such as Hyperlexia, Auditory Processing Disorder, Ataxia and so, so many others. Yet, I realize that is not happening and I will gladly continue to be the one who passes on information to them as best I can in each building Wil passes through on the road to graduation.
What people do not know about my first born is vast. They have no idea how many tears he sheds a week knowing he’s different. He asks me for “smart pills” to fix what’s broken inside. He struggles with not being as book smart, popular or as athletic as his younger brother. He understands his repertoire of friends is slim; none that he spends time with outside of the school building. Wil’s confusion in life is sometimes misinterpreted is disrespect, or an unwillingness to pay attention. Those moments his tears fall lead to gushes sorrow from my soul.
There are many other things I’d like people to know about Wil too. He has gone from the preschooler who hid under tables in class, to delivering Sunday morning announcements before our church congregation, complete with a few jokes. He can cook a mean pot of mac & cheese better than his mom can. He is tender and loving towards his sister, and fights like crazy with his brother. He wakes himself up and gets going in the morning with a bigger smile than I can ever muster at 6:00AM. I never think twice about leaving him to babysit his little sister, Gracie. Wil plays piggyback, builds block towers, and reads bedtime stories to her in a superb fashion. Wil made the high school bowling team this year. He’s proud to be the owner of a bowling ball and old-man looking white shoes to wear on the lanes. Whether he hits the gutter or scores a strike, his smile spreads like wildfire and infects his teammates positively.
If my son is going to be the face of something, anything, I want it to be that of a human being. If he is to be a billboard for others to see, let it be one that says we are all different on the outside, yet have feelings and souls that can bleed on the inside. If he is to be an example to other students, let it be that he is accepting of others and slow to judge his peers. And in his years on God’s earth, if Wil can be a representative of the population with special needs that teaches others to look beyond the disability and directly at ability, then I am one proud mother who knows she did one thing right.
Bless and be blessed,
Jen Tucker has never met a gluten free cupcake that she didn’t like. A former teacher and educator, she has worked with children in school, hospital, and enrichment settings. In her years at The Children’s Museum of Indianapolis, it was Jen’s job to bring the “hands on fun” into the visiting exhibitions in the galleries. Jen broke away from writing children’s books and thematic units in 2011 with her memoir, The Day I Wore my Panties Inside Out which was a semifinalist in the humor category in the 2011 Goodreads Book Awards. She is a monthly guest blogger at the website, Survival for Blondes where she marries humor with preparedness. Jen lives in West Lafayette, Indiana with her husband, Mike, and their three children.