Monday, July 10, 2017

Chronicles of a Special Needs Parent by Melissa Tomlinson

Special needs parenting is highly emotional and highly complicated. 

We have to develop really thick skin. At home, our kids are normal. In the street, it sometimes surprises us how different our babies are.

Picture this, we roll up, and a group of really cute kids see another kid to play with. There is excitement. But as they get closer they see that something is off. And they begin to ask questions, which is soooo sweet but they are so hard to answer. "WHY IS HIS EYE LIKE THAT?" WHY IS HE SHAKING HIS HEAD LIKE THAT...WHY IS HE IN THAT STROLLER???" Lord ....I just got here lol. I try to answer. "Well, he was born that way." "Born that way, how?"

I know preemie means nothing to a five-year old, and neither does cerebral palsy, so I try this... "WELL he is special needs". "What does that mean?" Lol I know most parents haven't taught inclusion just yet. Then I go to, "He likes sports do you like sports" lol. Their sweetness touches me and I leave wishing he could play with bad. And they leave seeming to wish the same thing. But they get it. He is different. Skin. Thickens.

Life is a mix of accepting the reality, hoping it changes and needing to feel like you belong right where you are. And when you are a writer, writing semi long diary entry Facebook "let's be real for a moment" posts in hopes to make something of it all. Inspire. Share. Let people in. Keep going.

So until I figure out a solution, or a proper answer, or until his peers are a little older and able to understand, I will continue to answer their questions and try to find a place for Jharid in their world. One day I hope they may even find their place in his.
Kaleena Berryman

I read this as I was traveling home from an exciting and very successful NEA RA and it hit me - we still aren’t doing enough. We have not yet reached the point of being where we need to be, in many, many ways.

I started thinking about our inclusion models in schools, how our special needs students “push in” to the regular education classrooms, into an environment that is not necessarily set up to best facilitate their learning, placed in situations that can make them uncomfortable. Why are those that are struggling, the ones that are refused access to environments that would make them more comfortable? Why not a type of “reverse” inclusion model?

If we are to make change and truly reach a point of providing for all of our children, we need to really challenge ourselves to think beyond the systems that we already know. Improvement is good, but systematic change is necessary. 

1 comment:

  1. As a SPED parent and teacher this really got to my heart. Teachers usually don't understand the emotions that parents are going through, and we need to make room for that. We need to consider it any time a parent is "difficult." The interaction that the author described is very familiar to me. Those moments are painful. Yes, you develop a thicker skin, but in the meantime you are also thrown into the special education system, and you're worried about your child, and you're adjusting to what your future might be's a lot.

    Early on I said to my son's first sped teacher, "You know, he was only identified a couple of months ago, and now I'm in this system, and no one tells you what you're supposed to do. It's really hard." She said, "I've never thought of that."

    We need to think of that.

    What I'm saying is that we need to give our parents as much love as we give our students. <3 Great post! I agree that we need more flexibility in our inclusion models.