CHALLENGES AND TRIUMPHS OF RAISING A SPECIAL NEEDS CHILD

by Eva Gremmert

Our son Nick has Lennox-Gastaut syndrome (LGS), a rare form of epilepsy that comes with seizures as well as cognitive impairment and developmental delays. He lives with his dad Arden and me, Eva, his mom in Carnation, Washington, USA.  Although he’s 38 years old, we still take care of him and always will. It’s a big job, but we’ve had a lot of help along the way.

We’ve raised our four kids and quite a few other people’s kids, so he has a lot of siblings who love him.  Nick has traveled with us to many beautiful places on our planet. He loves, loves, loves airplanes and airports, which is great for us.

I know he’s more popular than me.  Whenever I post a picture of him to Facebook or comment on what he has said or done, lots of people hit the like button.  For someone who has difficulty verbally articulating what he’s feeling, he manages to get his message across, and it often has a big impact.

As a young mom of 22, I delivered Nick, our second son, and knew right away there was something different about him. Being his mom has changed me. He has taught me many things. I have learned to look past first impressions, outward appearances, and obvious behaviors to see the real people behind those things.

As parents of a child with special needs, Arden and I have faced many challenges, but somehow, we always manage to get through them and feel richer for the experience. For example, in the fall of 2010, Nick’s seizures got out of control. Our epileptologist (a neurologist who specializes in epilepsy) looked for all sorts of solutions, including the usual prescription changes. We also worked on controlling his environment, restricting certain foods, following a strict medicine schedule, and doing our best to make sure Nick got enough sleep — which often meant sleep deprivation for us.

The doctor brought to our attention that many individuals with epilepsy also have sleep apnea. Studies have found that treating sleep apnea decreases the number of seizure episodes for some patients. We decided to get Nick tested.

The hospital had a sleep study facility set up to look like a hotel room, with an observation window on one wall. Nick has had many EEGs, so the electrodes on his head didn’t concern him. In fact, he was pretty excited for the adventure of sleeping in a new place.

The staff brought in a cot for me to lie on near his bed. Although the lights were dimmed, they could see us through the window. Every hour or so, a technician would come in to take more data. At the end of the night, I was sure that neither Nick nor I had been asleep, but I was assured they’d collected the necessary information.

When we met with the sleep doctor the next week, he confirmed that Nick did indeed have sleep apnea and would require a CPAP (Constant-Positive Airway Pressure) machine to help him get the oxygen he needed to get a good night’s sleep. I worried he would have trouble adjusting to wearing a mask all night with constant air pressure blowing into his throat, especially because a few friends had told me how hard it was to get used to their CPAP machines.

But it turned out there was another choice.

The APAP (Automatic Positive Airway Pressure) machine starts with a lower pressure than the CPAP and ramps up on a breath-by-breath basis as needed during sleep. Being that the device wouldn’t start out like Nick was in a wind tunnel when we were trying to get him to sleep, I thought that the APAP machine might be a better fit for us. The doctor agreed to order the APAP machine. One hurdle jumped.

Next I worried that Nick would reject wearing the mask. There are different types and sizes, and the technician was great at helping us pick out what we all hoped would be most comfortable. While we made the final decision, Nick held the mask we were leaning toward. He didn’t look to happy about it until Arden reached over, put it on our son’s face, and said, “Look Nick, you have a mask just like Maverick on Top Gun.”

Nick loves the movie Top Gun — the music and, of course, the airplanes, but he frowned a bit. “I got a Top Gun mask?”

“Yes, Nick,” I complied. “You have a Top Gun Mask.”

“I keep it?” he asked, his eyes a little wider, even hopeful.

“You get to keep it and wear it every night,”Arden assured him.

Clearing the mask hurdle, we became cautiously optimistic, yet we worried what might be in store for us in the wee hours. That first night, we did the usual routine to prepare Nick for bed, culminating in putting on his Top Gun mask.

“I am Maverick?”  he asked.

“You’re just like Maverick on Top Gun,” we told him.

As we shut his bedroom door, Arden and I looked at each other, trying to be positive yet ready for anything.

We went to bed, and the next thing we knew, it was light outside.

Nick had slept for 11 hours.

I was afraid something bad had happened to him. Dreading what we might find, I made Arden go into Nick’s bedroom first. But there was our son just as we had left him, sound asleep. We actually had to wake him. It was amazing. Nick had woken up every two hours for the previous couple of years. Apparently, what we’d thought was insomnia had been sleep apnea.

This sleep habit has worked now for more than 7 years. He wears his Top Gun mask every night.  I’m sure the oxygen infusion has helped reduce his seizures, which is wonderful. For me, the biggest change is that Nick is sleeping through the night — and so are we.

It’s incredible what’s possible with enough sleep. I’m back to professional writing, and I’m finishing up a memoir about my life as a mom with lots of kids and one who has special needs.

Thank you so much, Eva, for sharing your story. Find out more about her adventures with Nick and her upcoming memoir at www.evagremmert.com.

If you’d like to share a story, one about yourself or someone you know, email trish@write-to-win.com.

Have you had a problem that got fixed even better than you’d imagined?

Leave a comment, and tell us about it!