An Ordinary Mom's Musings

For those who have children with disabilities, or other special needs, the highs and lows mood swings can be a disorienting.

Okay, a lot disorienting,

Highs and lows. . .

We live in a world that can have life and death situations in it, not just a few times in a lifetime, but frequently.

That is a very hard place to live in. It’s no wonder that our stress has been compared and measured to that of a soldier in combat. The difference being that for the soldier, if he survives, he gets to come home and mend. For us, this can be a constant combat with no relief in sight for the rest of our lives.

On the other hand, when you are told that your child will never do x, y, or z, and she just proved them wrong?! That elation is like nothing else!

My husband loves jumping out of airplanes (airborne soldier), and he talks about the high you get from doing this. For him, it’s the ultimate. I think when our child is able to prove the world wrong, or accomplish something they have had to work harder than anyone else to do? This is our equivalent of my husband’s jumping out of an airplane. (Jumping out of an airplane frankly terrifies me!)

Finally after 10 years of diapers and pullups finally graduated out of them?!

No seizure in six months?!

Finally succeeded in walking?!

Finally succeeded in talking?!

These are our Olympic medal moments.

It’s not that other parents with typical kids don’t have them. It’s just that ours come from a place that is so raw, it is indescribable.

One day this year I faced both the incredible high and incredible low in one day. I wasn’t sure how to react. How do I hold both of those things within me at the same time?

Highs and Lows. . .

The Low

We hooked up with the local chapter of Mississippi Special Olympics at the beginning of the year, and I had signed my son up for swimming. It is the one physical sport that he will willingly participate in, and he needs the sensory feedback it gives him. He needs a little more work learning how to swim better, so I thought it was perfect for him. The only problem was Special Olympics is competitive. He hates competitions. However, as I talked to the other families and learned that many of their children took all season to get actually in the water, let alone swimming. I thought it was something we could work up to and learn about being on a team.

Fast forward to March, right before everything was shut down for Corona. My son discovered that there was a competition he would need to be part of and a meltdown 15 minute meltdown ensued in the pool. I talked him through it I got him to return to practice.

He had two competitions to go to. My plan was to take him to the first one, but not make him swim. I wanted him to work on supporting his teammates, becoming more comfortable with the idea and situation. Unfortunately, the head of the local chapter found out my plans and immediately banned him from participating. You must swim in the competition or you couldn’t participate, end of story.

I was livid.

The Special Olympics works with kids who have intellectual disabilities. Many of them also have behavior issues and co-ordination issues, along with their intellectual issues. This person in charge was unwilling to work with me to build my child up, to help him to become better, and yes, even maybe, one day compete. Apparently she could deal with kids having a fear of water, but not a dislike of competition. And his dislike of competition is largely through years of experience struggling to compete with his peers. Here was a peer group he might be able to actually compete with and not always loose all the time. Here was something to build him up. But she refused to listen or work with us at all.

Was it evil of me to take secret pleasure that no one would be able to compete due to Corona??

The High

A couple hours later, I got the mail from the mailbox and found that our son had FINALLY been approved for Mississippi Medicaid!

For those of you who have never had to deal with Medicaid eligibility, thank your lucky stars. Many states refuse to give Medicaid to kids like my son, reserving it only for those who are financially challenged. Not for those who are medically challenged. Luckily, Mississippi is not one of those states. I had been trying for the last 6 months to get his access to Medicaid approved. Appealing denials. I was dealing with a situation where none of the local DME (durable medical equipment) pharmacies would even talk to me because he didn’t have Medicaid. It was a very strange situation. When you have a child with DME needs that can only be supplied by one of these types of pharmacies, this is a problem. Finding out that he was finally approved? I was jumping up and down. It was such a weight off my shoulders!

But I had just been made furious by this head person at Special Olympics.

Highs or Lows?

How do I hold furry and elation at the same time???

This is our lives.

This is what we do for those we love.