Jake's Journey with Apraxia

by Tara, Contributing Writer

Tara has two children diagnosed with apraxia of speech. Here’s what life looks like for her:

 

1.) How and when did your first child get diagnosed with apraxia?

I first heard the word “apraxia” from my son’s “Birth to 3” speech therapist just a few months after he started therapy at 18 months old.

I call it “Mommy Gut” …. At his 18 month checkup I told the doctor something was off. B was TRYING to talk, but it came out as grunts. He would point and do his best to make words come out, but they didn’t. The pediatrician said he would be fine, but I pushed until she gave me a referral for the states “Birth to 3” program.

When the speech therapist said B has “apraxia,” I jumped online and read everything I could find…EVERYTHING. (Thankfully, Tori’s blog was one of the first sites I stumbled upon and it has served as an amazing guide).

I quickly realized once a week/30 minute sessions from the “Birth to 3” speech therapist wasn’t going to be enough. So we switched to a private SLP.  Within a few months my husband got a new job and we moved. That meant SLP #3 in a new state.

Once again, “Mommy Gut” kicked in and I just knew something else was going on and there had to be MORE I could do to help B. At this point he still only had two or three words and all of our frustration levels were nearing a breaking point. So, I did more research and figured out he might have some sensory processing issues. That led to an amazing clinic in which we met SLP #4 and got an evaluation for Occupational Therapy to address possible sensory issues. BINGO!!!!!!!

The progress B made in the first couple months of this clinic was spectacular. Working with a Speech-Language Therapist AND an Occupational Therapist proved to be the winning recipe for success.

Don’t get me wrong …. “success” in the beginning was hearing only a few solid words!!! Now, he’s up to some sentences, BUT we still have a loooong road ahead (especially with articulation, etc.). If you’ve been on this journey, you understand the dark moments of crying and depression thinking this marathon is never-ending. I still have days like that.  However, my four-year-old is now able to sing along to parts of songs …. Literally music to my ears.

2.) How about your second child?

With our little girl we knew right around that same 18 month mark that we were about to go for ROUND 2 on the apraxia adventure. S grunted just like B did. Both of my children always TRIED to communicate, but you could physically see with both of them that the muscles of their mouths just weren’t cooperating with what their brains wanted them to do.

At least with our daughter … we had already found amazing people to work with … so I feel like we jumped in the “right direction” with her more quickly. We didn’t have to go through four SLPs to find the right one. I also got her an OT evaluation, which showed she does have sensory concerns as well. She started speech therapy right around her second birthday.

3.) In what ways were your two children similar/different as babies and young toddlers? Did you recognize the signs of apraxia with your second child earlier than with your first?

I actually felt like our daughter babbled and made sounds way more frequently than her older brother. To be honest, that’s why I was a little more in denial right before we had her diagnosed … I kept thinking “There’s NO way we can have two children with apraxia … NO way … she’s going to start talking any moment now … she will …”

Yet, the grunting continued. So even though we were far more knowledgable with our second child about what apraxia is, I actually put it off longer with her because I kept wishing/hoping she would just start talking. I really couldn’t fathom having two kids with apraxia.  I felt dizzy thinking about it.

4.) I know hearing that your child has apraxia is a very overwhelming and scary time. How was hearing your first diagnosis different from the second?

Both times were scary … in different ways.  The first time was like being hit with a truck.  I was so overwhelmed, confused, scared and MAD at the world.

With our little girl, I was obviously more prepared with resources and what we needed to do …. but it was the FINANCIAL aspect that was truly mind-blowing. When she was first diagnosed, we were paying for my son’s speech therapy and OT costs out-of-pocket because our insurance had maxed out. Plus, trying to figure out how to coordinate (what feels like) a thousand different appointments.

5.) What’s an average week like in your world? 

Appointments. Appointments. Appointments.

Practice. Practice. Practice.

B has private speech therapy three times a week and he qualifies for speech through our school district two times a week. B also has OT two times a week.

S has private speech twice a week and OT twice a week. She also has speech once a week with “Birth to 3”.

My life right now is spent in the car, in speech sessions, in waiting rooms and constantly trying to juggle everything in between.   To be honest, I feel like a zombie most of the time … but I’m willing to do whatever it takes to help my kids kick some apraxia butt!

6.) How are your kids doing now? Any therapy techniques that are working well?

I don’t have a “one size fits all” answer for therapy techniques. We have tried a bunch of different things.  For my kids, movement and speech has been key.

For example … B learned his first phrase by bouncing on a workout ball … we’d practice each word … then when he successfully repeated the word … or got close … he could bounce a few times!  That was his “reward.” He has non-stop energy so sitting doing flashcards isn’t always the best option for him.

7.) Is there any advice or thoughts you’d like to share with other moms who are going through either single or multiple apraxia diagnoses?

*I’ve said this before … but finding the right SLP is like dating … You often have to go through a bunch of “frogs” before you find a “prince” … You DON’T have to settle!!!  Find one that clicks with your child!  They are going to become an integral part of your life …. Make sure it’s the right fit!

*I would recommend any child with speech concerns also have an occupational therapy evaluation.  I’ve learned from our professionals that often speech delays and sensory challenges go hand-in-hand!  But, the sensory issues often get overlooked or ignored.  Certainly I’m no expert … but I’ve seen my kids explode with the help of both.

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.