Jake's Journey with Apraxia

by Tara, Contributing Writer

There are days I feel like I’m on a rollercoaster (that I never bought a ticket for) and I can’t get off.

Other days I think “you know what … I can do this … we can do this … two kids with apraxia … yep, we’ve got it covered.”

Then BAM!

I get jolted right back into that rollercoaster seat.

Figuring out schedules between private speech therapy (x2) and private occupational therapy (x2) plus different schools and free services that each child qualifies for through those schools (and don’t forget to throw in some “normal” activities like swim lessons) kind of feels like rocket science sometimes. Or like I should be a crazy juggler in a traveling circus.

Also finding the right therapists/approaches/techniques has been very different for each of my children.

Now we are AGAIN battling with my son’s school about his IEP (that would take about 12 blogs to explain fully). Our son also seems to be hitting a plateau of sorts in his progress which is very common. But, do we find another new speech therapist? Shake things up a bit? Stay where we are and keep our fingers crossed? Do more sessions? Fewer sessions? Does he need a break? Do we push even harder?

He’s only four years old.

But, plenty of blogs I’ve read have mentioned their children have “graduated” from apraxia by kindergarten.

Holy crap. Kindergarten?

We aren’t even remotely close to saying goodbye to speech therapy. That seems like a far, far away dream.

It makes my head hurt just thinking about it.

Honestly, sometimes lately I get jealous reading other blogs. Pure jealously. My son has been in speech therapy since 18 months old and he still has a long road ahead.

His school speech therapist mentioned to me this week she “hopes” he’s out of speech by 5th or 6th grade. WHAT?!?!?! 5th or 6th grade?!?!

Our daughter on the other hand has blossomed and soared past her big brother (NOT that it’s a competition because it most certainly isn’t).

But, even in our same house it’s hard NOT to compare the apraxia journey. Why is she so much farther ahead? Why can’t our son “catch up” faster? He has MORE speech therapy sessions (and OT) than her every week! Ugh.

So today, I pause for a moment. Take a breath. And promise myself to repeat the following over and over again when I feel a dark hole starting to swallow our family.

There is NO set path for apraxia.
There is NO set path for sensory processing challenges.
There is NO perfect solution for taking away the hurt and heartache of seeing your child work so incredibly hard to make even a tiny sound.

Every single child needs and deserve their own time … their own space … their own resources to get to their destination. Every single child will have bumps along the way. Every single child will handle those bumps differently.

As parents, the best we can do is BE THERE.

Be there as a cheerleader.
Be there as their advocate.
Be there as their voice.

Keep researching. Keep fighting. Keep researching some more. Ask questions. Speak up. Ask more questions. Try something. If it doesn’t work, try something else. Listen to your gut. Then, try something else again.

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.