Jake's Journey with Apraxia

And the Friends We Met Along the Way

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.

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11 thoughts on “Heart to Heart

  1. Danielle says:

    Thanks for sharing. We all have such similar stories. My son turns 4 next week and it’s been a yr since his formal diagnosis. A hard worker in every way. He amazes me everyday. Things do get better!

  2. Please, please, please, forward my contact information to Tara. I would like to speak to her. I’ve had great success, even with an almost-4 year old who was only signing. Noelle Michaels, CCC-SLP, LDT-C; noellemichaels@hotmail.com, 201-919-4805; She can check out comments about my work/& my beliefs: Facebook: SUPERB THERAPY, LLC, Blog: http://www.superbtherapy.blogspot.com, Radio Show: http://www.blogtalkradio.com/superbtherapy ; My voice on youtube/Dora Video: http://www.youtube.com/watch?v=4LB02k9r5HI Thank you for forwarding!

  3. Kristy says:

    Tara, I am right there with you! My little guy, also almost 3, is the light of my life. But my heart also breaks for him; just like you and soapy other Apraxia parents. Our story will be shared next Thursday here. Please feel free to reach out to any of us, no matter where you are. And again like you, I am SO grateful I found Tori. She has been an amazing light in this long, dark tunnel. None of us have all the answers, but we can all be there for each other, support one another and offer more cheers for our little ones. Thank you for sharing!!! Kristy.

  4. Melissa says:

    You must be reading my mind. Everything you said is so familiar. My son Joey turned 3 in October. He’s been in speech since he was 17 months old, and he needs prompts for nearly all his speech. I knew at age 2 that he had apraxia, but no one wanted to test him that early, and my SLP at the time was very resistant to approach him as an apraxic child. He has transitioned to CPSE and gets PROMPT at school 5x/week, 30 min. sessions. He’s doing so well, but it is such a slow process. I often get so frustrated when I want him to answer me, or say what i’m asking for him to say…and then I have to stop myself and think that his frustration must be 10x worse. Sometimes, that’s the only thing that can ease my anxiety and refocus my frustration into positive energy. I often question myself if I’m doing enough, but out of all the things I can do for him every day, I always make sure we snuggle as much as possible. It may not get him to talk, but I know that he can feel how much he’s loved, and to me, that’s the most important thing of all.

  5. gaylordc99@gmail.com says:

    Thank you thank you for sharing this post. It is everything I am thinking and going through with my 3 year old and you said it so well!!!

  6. susan says:

    I understand all of what you are going through. My son turned 4 in November and we are seeing progress, but a year ago was a totally different story. I spent what seemed like every available moment either working with him on sounds or researching what would work best. We drove to Michigan from Pennsylvania twice, which was a turning point for us, but also when we heard the word “severe”. We decided we would get him whatever treatment he needed, no matter the cost. He has had 5 different speech therapists and three that he still sees on a regular basis to ensure he gets enough practice time in. I think we are seeing great progress and then he will say something to my husbandn that I can understand (finally) but my husband still doesn’t, and then you start hearing about other possible struggles they will have with reading and math meanwhile your friends are telling you stories about all of the funny things their toddlers are saying, and all you can think is my son coudl be saying similar funny things, I just don’t understand him. But, at least in our case, it is getting better. Our son is becoming more intelligibe and it’s hard to even remember how much stress and struggle last year was, jsust trying to figure it all out. I agree with you on the support network, it has helped me, and my son, tremendously. Thank you for sharing. Susan

  7. Ms.O's Mom says:

    My daughter will be 5 years old in May and we recently recieved a diagnosis of Symbolic Language Disorder from Children’s Hosp in WI although both the OT and Speech Therapist at school agree that she has Apraxia. I was left with that they will look into Apraxia after talking to her SLP at school. Is there any further testing that is available to diagnose Apraxia such as an EEG or MRI of the brain that may verify a diagnosis. My daughter so far has had a medical, psych, and SLP eval and was told to return in 1.5 years for follow up and to continue speech therapy in school (which I do not think is sufficent, I was expecting a private speech therapy recommendation, vitamin/supplements ect). Also has anyone had their child seen by a pediatric neurologist? I just feel like there must be more medical outlets for treatment on Apraxia. Any suggestions?

    Also, what kinda of MD did you see re the allergy testing and biomedical report?

    Thank You 🙂

    1. I saw an increase in speech in one 5 year old girl within 2 weeks of when her family started her on a lemon-flavored liquid omega-3 supplement.

  8. tstarmom says:

    Thanks apraxia mamas for opening up and sharing your stories. 🙂

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