special needs child

When I was pregnant with Jack I looked forward to the day I could join the local mommy workout group at our neighborhood church meetinghouse.  The other kids would be in school all day, I would have some pounds to lose, and we could incorporate it into our routine.  I’m very much a social exerciser-there ain’t no way I’m gonna bust my rear unless there’s someone else counting on me to be there or pushing me to do my best.

Alas, it was not meant to be.  As soon as we found out that Jack had OI, I knew that there was no way I could take him to an exercise group where energetic kids run around largely unsupervised.  It’d be like throwing him to the wolves.  I wasn’t willing to take that chance.

That isn’t the only concession I have made or will make on Jack’s behalf.  Contrary to when my daughters were young, Jack has never had a real play date.  I can’t really do “swaps” because it’s not exactly a fair trade to expect someone to baby my child so that her kid doesn’t inadvertently injure him while just doing what kids do.  The few times I’ve done social stuff during the school day, I simply bring Jack along and watch him like a hawk.  Which inevitably means my so-called social event ends up being pretty light on the social side of things.

I’ve also had to limit the amount of time I spend in my kids’ classes at school, an activity which has a fair amount of social benefits.  Toddlers are not exactly conducive to teaching art lessons so I’m relegated to leaving him with  dear friends with no kids (or really gentle kids)  at home to care for him while I support my older children.  Understandably, I don’t want to put these sweet friends out more than I have to, considering the huge hit to productivity it is to watch my delicate little boy.

I am lucky though.  We are comfortable enough financially that, if we need to spring for a sitter, our pocketbooks can handle it.  Consequently, our regular date nights haven’t suffered too much.  That has been a lifesaver and I realize that many marriages crumble under the strain of having a special needs child.  I suspect not having the time, money, or  energy to invest in maintaining your most important relationship might have something to do with that.

Still, during the daytime it’s just me and Jack and I’ve found it a little more complicated to foster relationships with friends (his AND mine) than it was when my girls were little.  Add to that the fact that all the friends I made at the time are no longer having kids and are knee-deep in teenage/school-age children probs.  Meanwhile, I’m being left in the dust with my lengthy to-do list, afterschool chauffeuring schedule, and a toddler clawing at my legs begging “up”.  The loneliness of it all can eat at a person.

Some of the questions I ask myself are, what am I going to do for preschool?  With my other kids, I ran a mother’s coop where we all took turns teaching.  Is that even possible or will I have to teach more often to compensate for the fact that the other mothers will have to hover over my child more than the others during free play time when she could otherwise just send them out for unstructured play?

Will I even send Jack to public school?  His height, bone fragility and discolored teeth might label him a target and I shudder to think of the possibilities of kids bullying him.

Don’t get me wrong, I LOVE having a baby in the house again(if you can still call Jack that).  I’ll save that topic for another blog post.  And I’ll survive.  I’ll make new friends, revive much of the wonder of having “littles” in the house again.  I’ll just have to go at it a little differently this go around.

Having a special needs child is a game changer, for sure.  While I am grateful for the tools and means with which to deal with this new set of circumstances, the isolation is real.  I have a new perspective and greater compassion for those who find themselves having to navigate a world that is not designed for anyone who does not fit the norm.