Jake's Journey with Apraxia

And the Friends We Met Along the Way

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.

Eminem, Song - Not Afraid, Album - Recovery

Eminem, Song – Not Afraid, Album – Recovery

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.

4 thoughts on “Apraxia … Not Afraid

  1. findingcoopersvoice says:

    Wonderfully written! I totally agree with the rollercoaster analogy. That is exactly how I feel. And keep fighting. We can’t lose that for our kiddos. Hugs!

  2. HDL says:

    I can totally empathize with you. My son’s (private)speech therapist said he may NEVER be totally cured. I do not believe this and will persist until the end. He hits plateaus a few times a year, where I’m debating a new therapist. He’s been in the same therapy office 3 years, has had 3 different therapists. Public school speech where I live is a joke and a waste of time.
    My personal opinion is little boys take longer to do a lot of things. I just recently accepted this and I quit comparing him to others. We will make this journey in our time.

  3. Yes, the roller coaster analogy is the best! Hang in there, ladies. Keep fighting for those words.

  4. Jayme says:

    Thank you for sharing this with is. I struggle with worrying about the future and thinking things will never change. We are in the beginning of our journey with apraxia and my heart breaks for our son. No one wants something “wrong” with their kiddo and I feel so guilty that he has to deal with this. I remind myself we have to take this a day at a time and celebrate every small success. He is our warrior and I don’t contain an ounce of the strength he does. Thanks for hearing my heart and reminding everyone that we can do this! God bless to you and your babies. You are such a strong and amazing mom! I admire your strength and love.

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