Jake's Journey with Apraxia

by Tara, Contributing Writer

 

I’m a former News Anchor. My husband is a radio DJ. Talking is easy for us. It’s what we do (watch out if you give us a microphone … you may never get it back!)

 Call it ironic then … or a strange twist of fate … or just plain cruel …. but our almost 3-year-old boy can’t talk. Actually it’s next to impossible for him at this point. 

He has ‘suspected’ apraxia.

Apraxia. A term I had NEVER heard before. Now, it consumes my life.
I’ve had hysterical meltdowns … “Why him?”
I’ve had waves of jealously hearing other kids talking with ease.
I’ve been confused (Should we try fish oils? Kaufman cards?)
I’ve been depressed.
Mostly, I feel like I’m on a deserted island.

Of course if you’re reading this blog … you’ve probably been on this same roller coaster.

 Our journey started a year ago at my little guy’s 18-month check-up. B is a bright, funny boy who was “grunting” to communicate (he has no other delays). Zero words. Our doctor referred us to the state’s Birth to 3 program for an evaluation.

That led to speech therapist #1 who came to our home once a week. When that produced no results we found speech therapist #2 in a private, clinical setting. Still not the right fit. That landed us at speech therapist # 3 where we are now.

If you’re keeping score: That’s 3 speech therapists in a year + thousands of dollars + countless hours of repetition = ONE WORD. That’s it. My almost 3-year-old can still only say ONE WORD.

That’s apraxia. It’s slow. It’s painful. You see the struggle when your child is trying to communicate, but you can’t understand them. You can’t wave a magic wand to make the words flow out of their little mouths.

My husband also just got a new job in a different state. Moving is stress enough, but add hours of research to find ANOTHER speech therapist. Starting over again with a person who has to learn what makes my little boy tick … what keeps his attention … what techniques work best to hopefully help his brain and mouth start cooperating.

Apraxia is not cancer of course. It’s not some debilitating disease. However when you’re in the midst of this journey … IT SUCKS. My son is never just going to “get it”. He has to work at his sounds … his words …. He has to work HARD. But, most people don’t understand.

“Leave him alone … he’ll be fine.”
“My kid didn’t talk until he was 3.”
“I bet he would talk if you just read to him more.”

Recently we were at a party and a girl (a few years older than B) came up to him and asked a question. He looked at me and I answered for him. The girl asked him the question again. I repeated the answer. She then got right in B’s face and shouted, “Why aren’t you talking?” I was stunned. She then turned to me and barked, “Why isn’t he talking?”

I went home sobbing. Heartbroken for my little boy who couldn’t answer for himself. Freaking out about everything … Would he be bullied if he still needed speech therapy into kindergarten or longer? How were we going to pay for the private speech therapy he needs at least 3 times a week? Why can’t someone tell me why my little boy can’t talk!?!?!

I’m a control freak and apraxia is something none of us can control. It seems there’s no rhyme or reason to it. We don’t have answers WHY and one speech therapist told me we probably never will. But this past year has taught me a lot:

As a Mom (or Dad) you have to stand up for your child. You are their voice! If you don’t feel like a speech therapist is ‘clicking’ with your child … Get someone else! It’s like dating. You may have to kiss a bunch of frogs before you find your prince (or princess).

Listen to your gut. I sensed around 15 months old that something wasn’t quite right with B even though everyone kept telling me he was fine. I’m the one who brought up his grunting to the doctor.

Don’t be afraid to exhaust every resource possible. Research and ask questions! Then, ask more! Thank goodness for people like Tori who are willing to share their stories and provide a road map for us ‘newbies’. That’s why I’m hoping to pay it forward. I will be so grateful if our story can even help one other person …

I have no clue what the next year will hold for my son. I’m hoping we make bigger strides in his climb up this gigantic mountain. No matter what cost (emotionally or financially) I will be his biggest cheerleader. The only thing I hope to get in return someday is “I love you Mommy”. Something so simple that many others take for granted. For me, it will be winning the jackpot!!!!!

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.