Sunday, February 28, 2010

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


  1. Oh, Dawn, this brought tears to my eyes. This is exactly what we face and I have yet to figure out the best course of action. I'll echo another bloggy friend and say that I wish that you lived close enough so that our children could play together. I'll pray that you find the answers you're seeking.



  2. I can so relate. My kids are extremely high functioning, but there are a few areas that keep me on my toes even now. Also this is one of the reasons why we don't co-op (where they would be deluged) and we do our own unit celebrations (where they would never have a chance to do the same parts in a co-op setting).



  3. mmm.

    not so different from our parents' concerns either, is it?

    Want to protect them. Want them to feel safe and loved by their peers. Want them to be friends with people that will build them up, raise their self-esteem. Not harm them in any way.

    What an easy job us Mamas have. : /

    hugs to you.

  4. oh, wait. i forgot that was anonmyous.

    that was me, <a href="">Stephanie.</a>

  5. Thanks for stopping by my blog =)

    In reading your post, I realize just how much my son has in common with your kids. Even though my son isn't disabled in any mental of physical way, he also, doesn't have any true peers around here.

    As he is approaching his teen years, he is realizing just how lonely he is and how much he would like some friends or at least one friend, so he is contemplating returning to the school system.

    He won't be returning for an education. No, he will be returning in the hopes of maybe meeting another person who thinks the way he does, and hopefully, he will find some friends. I'm so worried as that wasn't his experience in the past.

    Lot's of prayers coming your way. Children need friends.

  6. Dawn,

    Thank you for sharing more about your children and the struggles you face. You are very articulated being able to express your concern. I can understand why you choose to mix with the special needs, sheltering your children from unkind remarks. I think I would do the same.


  7. If I could give out a Mom's Award I would give it to you. I have worked with a lot of special needs children and to raise such wonderful children like you have and to keep on being able to have such love and dedication you do you deserve this award. I understand your feelings and pray each day the Lord to continue to lead you. I can see he has led you so far and as long as you keep your eyes on Him He will continue to lead you in the journey called motherhood.

    Praying BIG ((BLESSINGS)) and ((HUGS)) on you my SSiC

    In Him<><


  8. Hugs to you friend. It can be hard to figure out, can't it. I feel like we straddle both worlds sometimes too. So far, we aren't as involved in the special needs community, but I think it's because we have built community with others around FIAR. Some having special needs and some not, but for now it's been a safe place for all of us.

    I know sometimes I feel like *I* am odd or just don't fit. My life is so different in a lot of respects - the time, energy, money, etc spent on trying to figure things out and how to best help your kids. Its just a different life.

    I'm not sure I'm helping, but just wanted to give you a hug and say that I understand.