Not An Afterthought

I read a little message written by the dad of a 6 year old little boy with autism. It was a short message to his friends about their lack of inclusion of his son. I’ve seen it described as a rant. The message is laced with profanity and sharply directed toward specific guys. If you have yet to see it, you can take a read here or over on Twitter, the young boy’s mother posted the message and it has deservedly gone viral. Within the short message is encapsulated exactly the feelings of the special needs father. Through his words, I found a strange kinship with the man. It is a mighty and powerful thing when humans can see themselves in the circumstances of another. I will never meet this man but I am irrevocably attached to him because we share a brotherhood of experience and I so identify with his frustration.

One line of his message specifically shook me. It broke me right down to the ground because of the profound truth in the words and in the deep cuts that produced them.

“…he is not an afterthought, he is my every…thought.

By far, the most painful reality and most prominent fear in the world of the special needs parent is that your child may never experience deep human connection. I can stand a great many things but the idea of the child that I love, with all that it is in me, being alone…isolated…friendless…disconnected, this is an idea that is simply unbearable. Even with a host of more emergent medical concerns that many special needs kiddoes and parents face, this is still the sharpest dagger that leaves the most vicious scars. This is the reason for the strong words of my friend, here. His message to “his mates”, the ones who should certainly know his heart the most, is a message of intense love and hope for his son. He cares nothing for vain shallow popularity. His only desire for his son is just one good friend; one friend to whom his son is not an afterthought. One true friend can make all the difference.

So, in light of this, may we train our children to be mindfully inclusive. May we teach them the habits of how to be a good friend. May we show them how to reject marginalization. May we help them identify opportunities for friendship. May we instill a genuine kindness in them. God help us.

 

P.S. – On occasion, we have encountered friends who have shown the most amazing love and inclusion to us and ours. They are like angels to us. Never forget the impact you can have by being a good friend.

Special Needs Parenting – Apraxia

Parenting is the most fundamentally difficult thing most of us will ever do. It is a landscape of seemingly impossible choices with hazardous turns and irreparable consequences. On top of that, there are always voices crouching in silence, waiting for any perceived misstep so they can spring into action and shame a parent for whatever decisions are made. Being a parent is hard. Add in the complexities of special needs kiddoes and it can become overwhelming. For a special needs parent, there are additional worries, additional heartaches, and additional stresses.  Know that you will always find a friend, here.

 

My oldest, the Child of Promise (COP), is a remarkable and wonderful child. She was born early, spent her first month of life in the NICU, and had 2 separate brain bleeds which, although they were not severe, have led to multiple diagnoses and difficulties throughout her childhood. As a toddler, a name was attached to the delays and struggles we were already seeing. Apraxia. The best way I can explain apraxia is to tell you to imagine a disconnect between the motor movements your brain tells your muscles to make and the actual movements your muscles make in response. Imagine your brain telling your left arm to move to the left and your left arm moves to the right instead. This is hyper simplified but for the apraxic child, the muscles responsible for motor movements don’t work the way the brain tells them to work. The effect on speech can be devastating. Early intervention speech, occupationl, and physical therapies are critical but apraxia, for us, means that my daughter has to work hard for progress that just comes naturally and effortlessly for her peers. We work three times as hard for a third of the developmental results. We deal with things most parents don’t even have to consider. And we are most fortunate. COP is an amazing little girl with a kind spirit and a determination that cannot be taught. She is perfect.

 

To the parents of apraxia, hang in there. You’re not alone.