How I Never Stopped Searching For My Child’s Voice

How I Never Stopped Searching For My Child’s Voice July 7, 2018

 

 

 

 

Early in our journey, I remember shuffling from one therapy center to the next. We worked diligently on tongue lateralization, chewing, sucking and blowing.

His therapists used Kaufman cards to help him identify words, learn syllables, and attempt to string together sentences.

As hard as he tried, he struggled to find ways to articulate and communicate with us.

He was diagnosed with Severe Apraxia of Speech.

My heart sank thinking me may never learn to speak, but we didn’t stop trying to unlock his voice.

We knew he understood what was being said, but he had no way of telling us what he needed or wanted.

In therapy, we added visual queues and PECS to help him show us what he needed.

All of this was still very frustrating for him and us.

He wasn’t eating, he couldn’t speak, and he had a hard time expressing his needs.

I was lost.

We went to the doctor and discussed his height and weight.

His weight was falling off the charts, and his doctor let us know he would now be classified Failure to Thrive.

A feeding tube was placed, and within months words started to trickle out of his mouth.

His vocabulary went from 2-3 words to thousands within five months of placement.

After years in speech therapy, he was discharged with a note that said:

“Severe Apraxia of Speech – resolved.”

This was not the end of his journey.

However, he still struggled with communicating, having conversations, asking questions, and engaging with others.

Often he would speak to us, scream at us, or talk incessantly about his favorite interests.

He never asked us Why, how, or seemed interested in anyone but himself.

We worked with doctors, and they identified via testing he had high pressure in his brain.

A shunt was placed to drain his excess fluid and decrease pressure inside his skull.

Within weeks of shunt placement, we were met with a completely different child.

He made prolonged eye contact.

Everything in the world amazed him, and his thirst to understand was unquenchable.

We were bombarded daily with How, Why, Where, and When.

These were questions we were dying to hear, and finally, he was asking.

Many parents grow tired of incessant questions, but these were beautiful words for us to hear.

Medical conditions had kept him locked away from the world, trapped inside his head, and isolated from other children.

He was finally finding ways to connect, engage, and learn.

My heart as a mother rejoiced in glee.

If your child struggles to communicate, and therapy is not working, please do not give up.

For some children, there are medical reasons that haven’t been identified as contributing to the delays.

Keep on looking, searching and advocating to help find your child’s voice.

Never give up hope that your child can beat the odds, learn to speak, and find ways to play.

Diagnosis is possible.

Treatment is possible.

Kids are amazing.

 

Here is a video of how far our boy has come.

 

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  • Carma Doege

    Von is amazing because of your perseverance. Good for you!

  • Sarah cleland

    My son has this and global apraxia he is in therapy for both ot and speech…just turned 3 in Feb of this year has gone far this year. When I mentioned to birth to three and doctors that the fits and non speech made him seem to have autism or something, I asked for help when we finally was able to see a specialist.they explained they started therapy and stuff it got a bit better but early childhood he started doing tons better. We still have a lot of issues but they explained that hopefully with the way he is going it might be better by the time he hits 1 or 2 grade if not sooner..hopefully that is the case