Jake's Journey with Apraxia

by Tara, Contributing Writer

I can specifically pinpoint when the headaches began. When my son (who’s now 5 years old) started speech therapy at 18 months old.

I was stressed to the max. Living 28 hours away from my family and friends in a new city. No help. My husband had started a new job that demanded his full attention. Spending every moment I could researching apraxia. Spending every other moment sobbing my eyes out in fear, frustration and anger over what apraxia really meant for our little boy. Oh yes and I also had a newborn baby girl who needed (and deserved) my full attention as well.

But, as any mom who has a child, with or without special needs, can probably attest … You never put yourself first. I pushed the pain of my constant headaches away. I would collapse into bed at night hoping the headache would at least dull by morning.

It never did.

About a year into the apraxia journey, my dad and stepmom thankfully pushed me to go see a doctor. The headaches were getting worse (which I didn’t think was possible).

The first doctor thought I had a bad sinus infection and put me on antibiotics. That did nothing. Then I went back. More tests for everything from Lyme Disease to an iron deficiency. That turned up nothing.

I kept battling with the doctor and then finally switched. Still no answers. Then we moved. Again. So my health got pushed aside because I had to find new therapists for our son (and soon after that my daughter as well). That was my top priority and I had tunnel vision in finding them the best possible help.

LONG story short. It’s been almost 3 years of constant headaches that won’t go away. By the end of the day the pain is so ridiculous I want to curl up in a ball. Several more doctors. MRI’s. Neurological tests. The list goes on and on.

Then a friend sent me an email:

“Flight attendants ask parents to put on THEIR OWN oxygen masks first before helping their kids. WHY? Because a parent’s gut instinct is to jump into action to protect and save their child. However, without their own oxygen … parents will be of no use to their kids.”

It hit me like a wrecking ball. If I didn’t find a way to help myself feel better, I would have no energy or much worth to help my kids continuing battle with apraxia.

So, instead of typing “apraxia research” into Google night after night, I started typing in my specific health symptoms. I found a new doctor a few months ago and for the first time, she actually had me sit down and describe my life. Before asking any questions specifically related to my headaches she wanted to hear about a “day in my life.”

Soon, I was sobbing. Honestly, I think they were almost tears of relief. Somebody who really wanted to hear about ME and how I was dealing with the kids, their appointments, the IEP’s, the school meetings, the therapists.

Within an hour, she had it pinned down. I had TMJ (from grinding and clenching my teeth so badly from stress while I was sleeping) and tension headaches. She told me, “It’s amazing the toll stress can take on a person’s body, even when you think you are handling everything as good as could possibly be expected.”

I now have a night guard to wear while I sleep and some daily medications to help ease the headaches. My doctor said the damage has been 3 years in the making so it certainly isn’t going to be erased overnight. But at least there’s hope my headaches will decrease with time.

I’m also doing my best to take 30 minutes at the end of every day for ME. Of course, that’s way easier said than done!!!! But, whether it’s yoga or treadmill time in our basement, I’m really making more of an effort. I’m feeling better about myself and definitely have more energy for the kids, their appointments, speech homework, etc.

The lessons are really all the same:

• Find a doctor – or speech therapist – that you click with. Period. You are wasting your time if your gut tells you something is wrong, but no one is listening.
• Be a cheerleader for yourself and your child with apraxia. Stand up and shout if you have to, but don’t leave any stone unturned to get the help you and your child deserve.
• Nothing can be fixed with a magic wand. Often, life is a marathon. Be patient. As long as there is a glimmer of hope then you can go the distance.

Bio: Tara is the extremely proud mom of two kids who could both put the Energizer Bunny to shame. She spends her days chasing, running, chauffeuring, refereeing, counseling, scheduling, coaching, doting, teaching, cooking, playing and loving. Her little boy and girl are diagnosed with apraxia. She lives in Minneapolis and is “temporarily retired” from her days as a TV/Radio journalist until her kids are a bit older.