Ponderings on Raising Special Needs Children

I have three children with significant special needs that, frankly, keep me on my toes all the time trying to balance it all. I have even had a person or two comment that my 4th child, who is "normal," could be considered special needs in a way because she has to be nurtured/raised in the midst of all of the uniqueness of our family makeup. So what is my point in this intro?

We joined a special needs bowling league this weekend. All three of the little ones joined including the "normal one". This bowling league is for all ages and stages of kids/adults as long as they have a special issue that would make it hard for them to fit into a "normal" league. (Normal siblings are welcome as well.) On a lark, we went after a friend suggested we try this new group out. We did not plan on getting involved in a 10 week bowling league, but the kids loved it, so we did. They can't wait to go back.

While we were playing, the leader of the group was coming down the line and taking everyone's information. When she got to us, she asked, "Now which one is disabled?" You see, all of my kids "pass" for normal. They look "normal" when you look across the room. They talk fairly well, can carry on a fine conversation in everyday life, and they can walk. They have full motion of their limbs. They do not rock, drool or tremble (although two of them struggled with drooling for years). They do not need any heavy medical equipment that must be dragged behind them. They have full control of their body fluids. When I looked down the row of other kids in the league, it was obvious what most of their issues were from looking at their faces or wheelchairs. But my kids "pass for normal," or do they? 

This kindly woman meant no harm in her question. She was simply trying to figure out how we fit into her league. Reactive attachment disorder, fetal alcohol disorder, severe sensory integration disorder, damaged lungs, brain damage, poor stamina due to a bad heart -- these are not revealed physically unless one gets to know them more. She did trigger an age old pondering in me ... one I have struggled with for 19 years. Where do my "pass for normal" but really are not "normal" kids fit in? Is it best for them to spend the vast majority of their time with other "special needs" kids or should they be with "normal" kids most of the time? The positives when they are with special needs kids is that they are "safe" from ridicule, I can conduct their therapies to reinforce them without anyone even noticing, they can be more relaxed and do not need one million reminders on how to behave. However, they are often the highest functioning, sometimes get frustrated that they cannot understand another child, and are lumped in with the visibly disabled and more likely to get ridiculed from the outside world. 

On the opposite end, when they are with "normal" kids, they often fit in for awhile. They can run and jump and play. They can often have more complicated conversations without aids. But then we have a sensory issue, social issue (usually space or miss a social queue) or a cognitive issue; and the "normal" kids think they are goofy, foolish, immature, weird or stupid. They are often rejected or cast away, whether it be at church or the neighborhood playground. (One-on-one friendships tend to go better where I am friends with the parent first.) It is much harder to provide the supports that help them without unkind words from kids and adults in the normal world.

This year I have focused on joining more and more special needs groups in the hopes of finding them some lifelong friends. (Another complication ~ when you hang out in the special needs world, friends die from their special needs. Tim has lost about four playmates to death in his 19 years.) 

So where do we fit in? How do I best serve my children? Do I shelter them too much by keeping them in the special needs world, or am I keeping them from harm while they blossom and grow? Ponderings.... Ponderings....



Kind comments and reflections are welcome....

Blessings, Dawn