Pains and Joys of Raising a Disabled Child

So often as parents, teachers, family members, friends we strive for our children to be equal.  We want them to have all of the same opportunities, the same chances, the same treatment as the “normal” kids.  But is that really what our kids want? Or is that what we want?

I was at a conference this past weekend that talked about Universal Design for Learning.  One of the main points I took away was this: We don’t need to focus on accommodating everything for those with special needs.  Instead, how can we level the playing field?  How do we as parents create equal opportunities for our children?

How do we make this scenario a reality in our everyday life for our kids? What barriers are there that we can remove to make not only our child successful but all children?  There are so many areas where our children are faced with barriers.  One of our biggest barrier that we are facing right now is church.  In the past few weeks its been hard to go with Cayden.

Part of it is, Cayden I think is starting to realize he isn’t always with his same aged peers. He’s been moved to the lower aged class (my decision).  I was hoping it would allow him to be more free to move and to play.  But he still struggles to self regulate and be nice towards others.  Looking at the model above, what is our barrier? What “wall” can I remove to allow Cayden to be successful.  Honestly, I am still working on that.

Cayden also has a weekly helper at church.  This is great, it falls under the second picture in the illustration.  Cayden is given an accommodation in the church setting to allow him to be as successful as possible. However, even with this extra support, Cayden still struggles.  I think there definitely needs to be more training and more intentional action.

It is church though, not school. Right? Or if I may can I get slightly off topic and down the path of religion? Is it not the Church’s job to reach out to everyone? Does every church need to have a specific program to meet every need? It would be great, but its not possible for one church to meet every need.  But I do know there are many parents in our position.  Unable to fully enjoy church due to the worry we have of our kid being successful in the church setting.

So again, this goes backs to our illustration.  We need to at least make sure we can operate in the second illustration.  Are we providing basic accommodations for our children to be successful in that situation? As a parent, what is it that I want Cayden to take away from the church setting? As a teacher, what is it that I want my student to take away from the day?

How do we move from step 2 to step 3? How do we remove the barriers? The thought of Universal Design originated from architecture. Think of all the barriers that have been removed from architecture in the past decade.  We have motion activated doors, doors with buttons, ramps, wider doors, elevators and more. All of these things were created for people with disabilities. However, by removing the barrier, it created easier access for everyone.

I believe that the first step to truly meeting a need is understanding and identifying the barrier.  Once we are able to identify the barrier, we can begin to offer the best for our children.