Kelly Breedlove

@kellybreedlove | contributor
Community Voices

Overcoming Apraxia of Speech one word at a time

Speech Pathologist – “Jaxon has a disorder called Childhood #Apraxia of Speech.”

Me – “#Apraxia of Speech? I’ve never heard of that,,,what is it?”

And thus began our journey with #Apraxia. At my son’s 18 month checkup,,his pediatrician was a little concerned that the only words Jaxon could say was “mama” and he could say “daddy” sometimes. She said to work with him at home and we would re-evaluate at his 21 month checkup.

We worked with him and got our 4 year old daughter to

encourage him and try to

get him to at least attempt new words.

But by our next checkup, he had stopped saying “mama”, but had picked up a couple of animal sounds and was doing good with those. His pediatrician said that she thought we needed to get early intervention involved to at least do a good evaluation and see what they say. We agreed it was better to check it out early, rather that just waiting to see if he was just a late talker. A few weeks later, Jax was evaluated by a SLP and she agreed and said we definitely needed to get him started in speech therapy and try to find out what the problem was.

So we began speech therapy once a week. Several weeks later, our SLP said that she was certain Jaxon had a motor planning disorder called #Apraxia of Speech. She explained a little bit about what it is, that we would sit down and discuss it along with his therapy plan at our next session. And I’ll never forget,,she told me NOT to google it. So of course, being a Mama, the very first thing I did when we left was to google it.

Bad. Idea.

I wish I would have taken her advice and not googled it because some of the things I read about scared me to death.

For example…*it is usually associated with other underlying neurological disorders/diseases.

*#Apraxia can affect arm and leg muscles also and make movement difficult.

WHAT? My son is perfectly healthy…and I’m reading that he may have serious, underlying neurological problems?

At our next speech session, his SLP sat down with me and told me more about #Apraxia, and what we needed to do to help him. I told her that I had googled it and had been a nervous wreck ever since.

She explained that each child with #Apraxia of Speech is different. Some #Apraxia kids may have mild difficulties whereas others may have severe problems and possibly never speak intelligibly. Jaxon has no other symptoms of any kind, so there is no reason to think he has any underlying condition. (whew, I felt so much better when she said that) Sometimes #Apraxia of Speech just happens and there is no medical reason to explain why.

She tells us that when Jaxon has a word he wants to say, his brain and his jaw muscles just do not connect the appropriate way. He knows what we are saying to him, and he knows what he wants to say back to us, but when he tries to say it, it comes out all jumbled.

He also “loses” words. He may say a word correctly for weeks, like the word “dog”. And then one day, he just literally cannot say it correctly. It comes out different every time he tries. Can you imagine how frustrating this would be?? Especially for a sweet innocent 2 year old little boy.

We would start having speech twice a week and see how he does with that. She tells me she has every reason to believe that most of Jaxon’s speech would eventually be understood,,even by strangers. He might have a noticeable impediment,,but hopefully it will be mild. We are in this for the long haul and he will need years of speech therapy.

Possibly into adulthood.

We have been in speech twice a week for 6 months now and Jaxon’s speech is definitely improving. He has several words that everyone can understand, like mama, bye bye, thank you, but he is still hard to understand to others that are not with him everyday, but we know what he is saying most of the time.

We learned several signs from American Sign Language for him to use when he just can’t get the words out. This definitely cuts down on some of the frustration he feels when trying to say something. And we also encourage him to try and say the word he is signing. Just gives him a little extra practice.

He is now working on putting 2 words together, and is trying all the time. It is especially heartbreaking when he is trying to say something, but the words just won’t come out right. He gets a look of pure frustration on his sweet face and it just eats me alive. But, when the words come out correctly, my boy just shines with pride!

There is one thing that we have found so interesting through this whole process,,when we are trying to figure out what he is saying, a lot of times his 4 year old sister can figure it out instantly. The bond they share is amazing.

So, what is #Apraxia of Speech? It is hard. It is repetitive. It is scary. It is frustrating for him and us also. But let me tell you, it is SO worth it! When my son looks at me and says “mama” just as clear as a bell, it melts my heart. #Apraxia #RareDisease

The NICU Journey Means Taking One Moment at a Time

Everything is different after you experience the NICU. It changes you forever. Watching your child fight to survive is heartbreaking and you will never forget it. No matter if your journey in the NICU lasts one day or 100 days, all are equally important. My daughter Avery’s NICU stay lasted for 17 days. She was born full term with severe respiratory distress, a blood infection that made her septic, and developed persistent pulmonary hypertension(PPHN) and pneumonia. She has brain damage (periventricular leukomalacia) as a result of her oxygen levels at birth. Her brain has “rewired” itself around the damage and she appears to be a healthy 3-year-old girl with no long lasting effects other than the PVL. I promise you, you are going to remember every single second of being in the NICU. The good and the bad, you will never forget. You will never forget the sights and sounds. Especially the low O2 sats alarm on the monitor. That one haunts my husband and me. You will never forget the first time you see your baby hooked up to many different machines and monitors. You will never forget the sound of the oscillating ventilator and how violently it makes your baby shake while it pumps 300 breaths in those little lungs every single minute. You will never forget the beautiful sound of your baby crying for the first time after being extubated. You will never forget feeling so lost in the beginning. All of this medical terminology sounded like another language. You will never forget when you began to actually understand all that medical terminology that was said during rounds. You will never forget the NICU nurses and doctors that took such wonderful care of your baby. You will never forget that “mental fog” you were in. You never knew what day it was and frequently had tears falling. You will never forget the hugs and prayers your nurses gave you during those crying spells. You will never forget the feeling of “scrubbing in” before you can even enter the room. And putting the gown and mask on before you can even hold her. You will never forget that fabulous feeling of holding her for the very first time. You will never forget how it feels to walk in and see several nurses and RT’s standing around your baby trying to decide the next move in order to save her life. You will never forget the wonderful feeling of walking in and seeing that your baby is well enough to have just one nurse that day. You will never forget the horrifying conversation you had to have with her doctor when things were not looking good at all. You will never forget the awesome, uplifting conversation you had with the doctor when your baby started doing much better. I could go on and on, but its just one of those things you can’t really understand until you experience it. We knew nothing about the NICU prior to Avery being born. Now, her nurses and doctors are like family. It’s overwhelming. Sometimes you wonder if you will ever make it home with your baby. You cry, you get mad, you beg and plead with God to heal your baby. When you feel like this, just take a moment. Just stop thinking about what will be, what could be, what should be, and literally take things one moment at a time. It does not matter how long your baby is in the NICU — it does not matter if yours is a preemie or a full term sick baby. No two journeys are the same, but all are life-changing.