Confessions of an Apraxia Mom: Why Speech Therapy Feels so Much Harder

I have two in speech therapy right now. My oldest who is 6 with apraxia, expressive language disorder, and fluency disorder (on top of many other challenges) has been in speech since he was 2, nonverbal until 3 and a half, even with therapy 5 times a week working with specialists in apraxia. My almost 4 year old has a couple of minor sound errors, but that is it. As a Speech and Language Pathologist (SLP) myself, I worked with both of them since they were born at home to make sure they had the best access to speech and language. Being a SLP also means that I’m pretty darn proactive about recognizing when my child needs additional speech therapy than what I can offer at home.

A few months ago, I decided to put my youngest (almost 4 year old son) in speech because he was getting frustrated trying to read letter sounds and being unable to say /k/ or /g/. His favorite animal is KITTY. All of his K’s are T’s. You can imagine how frustrating that can get for a little one when you cannot figure out why everyone is laughing every time you say “I love kitties”.

When my youngest is in therapy, it is fun. He is so cute in there! He is laughing and he is able to make all of his sounds with prompting and he carries it over at home. His therapists have him doing all of these cute fun games which he willingly does, because they are easy and fun! He recognizes and is able to fix when he makes a mistake all on his own. He mastered the /k/ in a few weeks and is working on carrying it over in all positions of words and in sentences. Something I have no doubt he will get. Now he is working on the /g/ sound and perfecting some blends, but he is doing great. No worries there.

I seriously sit behind that 2-way mirror and smile and laugh along with him and his speech therapist at how ridiculously cute he is trying to make new sounds. And as my heart is joyful and I’m smiling, the wave of memories start to come back from my oldest’s journey with apraxia. I think of him as he sits in the next room over with his current speech therapist. I think about how he is working on making sentences, word finding, and on the /s/ and /th/ and how he has been working on that for years.

When he was around my youngest’s age (between 2 and 5 I suppose), I would watch him in speech therapy and it was heart breaking. That’s not even the word for it. It was heart WRENCHING. My insides were being torn out every single time. I would watch him unable to do any of it, lose sounds as soon as they would come, and have absolutely no carryover at home. I think of all those times he would refuse to TRY in speech therapy because it was just too difficult. No matter what I did, no matter what anybody did, it just didn’t seem to help. He needed a very specific type of therapy and therapist to motivate him to keep going. Just trying to get him to combine two sounds seemed impossible and for years it was. I was scared. I had honestly no hope left after seeing the immense struggles he went through during his sessions. He used  a communication device, and sign language to speak…the rest was just grunts and distorted versions of ‘ah’.

Sometimes I would hear my oldest with apraxia say a word and I would get so excited only to realize that it wouldn’t come back. It would take him months or even years to be able to get it out again. My world seemed like it was crashing in on all of us everyday. More challenges kept arising, and progress was SLOW. Painfully slow. The tunnel we were falling down kept getting deeper. Every time I would see a light, we would miss the mark and keep falling. This is what it is like to have a child with apraxia. It feels completely out of control.  I know it can seem for so many that apraxia is just a little speech problem or delay, but I assure you it is not. It will rock you to your core. It affects every part of your life. Every moment is spent wondering how on earth you will be able to help your child. It’s not cute…it’s really freaking hard.

We take for granted speech. It is what makes us who we are, even as children. To be able to express your thoughts the way you want to without limitations is a truly amazing thing that every child deserves to be able to do. I have been so surprised at how different speech therapy is between my two children. I marvel at the progress my youngest is making and allow myself to feel joy in it when I watch him in speech therapy. I take one day at a time with my oldest and know that our hard work IS paying off.

They are on two very different journeys and I am ready to experience both. I wasn’t always ready, but seeing my youngest doing so well has allowed me to realize that all of my feelings about how hard speech therapy feels as a parent of a child with apraxia is justified. It IS harder. It is not the same as a delay. Speech therapy does not look the same for a child with apraxia. My feelings of sadness as I watched and continue to watch my son with apraxia in speech therapy are OK and totally normal feelings. I am grateful for the opportunity to be able to see my youngest in therapy so that I could truly have this realization that it’s not all in my head. That I was always justified for being scared because that fear is what pushed me to work harder for him.  That fear is what got us where we are today. The HARD is what kept us pushing harder. We were reading a book the other night called “Jabari Jumps” by Gaia Cornwall. There is a quote that really stuck with all of us after we read it…

‘”It’s okay to feel a little scared,” said his dad. “Sometimes, if I feel a little scared, I take a deep breath and tell myself I am ready. And you know what? Sometimes it stops feeling scary and feels a little like a surprise.” Jabari loved surprises.”

Apraxia has been a world of surprises for us. A lifetime of lessons rolled into just a few short years. I don’t expect the surprises to stop anytime soon either, but feeling validated in the way we feel about apraxia, I think is important. I want to make sure everyone knows about apraxia-kids.org. You are not alone in this journey. It is scary, it’s harder than people can imagine, but from one apraxia mom to another…YOU GOT THIS!

November 2017 The Homeschooling SLP www.homeeducatingapraxia.com

 

6 Replies to “Confessions of an Apraxia Mom: Why Speech Therapy Feels so Much Harder”

  1. This is beautiful. I have watched from a distance every since we knew about all his struggles. You never give up and either does your son. No one really knows why as parents we face such difficulties… all I do know is we grow into stronger people from them. So thankful for how far he has come, and grateful for all the prayers that have been answered along the way. It’s hard for a grandma to put into words how difficult it is to see your daughter in such pain and also hurt yourself for your beautiful grandson. Love is really what my grandson brings to all of us on his long journey. His LOVE helps all of us. LOVE.

  2. This has been our family experience too- also have 6yo son with apraxia. Whenever I tell people he has a “speech disorder”, I feel like that does NOT sum up what it is. It’s a lifelong neurological speech disorder that requires incredible vigilance and work And Is associated with poor self esteem, literacy problems and overall school struggles. Definitely more than a speech delay. I wrote this for the Mighty a few years ago: https://themighty.com/2015/08/when-a-little-girl-asked-why-my-son-cant-talk-like-her/

    1. Amazing article! You are so spot on. It really is a beast of a disorder that we need to work very hard to stay on top of…in all areas including every one you listed and more. Thank you!!

  3. I have a 14 year old boy with severe speech Apraxia. He can only say about 10 words and those 10 words are still hard to understand. He does grunt and try to talk and we can figure it out most times. It is heart wrenching. He also has extreme anger outbursts where he has destroyed a lot of our property and hit us. He has given me black eyes and bloddy noses. I have 5 other children in the house and they are scared of him. We are all on egg shells whenever he is around, wondering if he may blow up. I’m so tired out. I’m exhausted. I feel like giving up every day but I don’t. He also has a developmental delay and poor muscle tone so he can run and play like other kids. He is super smart where electronics are involved but we had to take his device away from him because he has gotten mad and broke them a bunch of times. This article was refreshing to read. I’m not alone although I feel like it because I don’t know anyone around me who deals with this. One day at a time, even though sometimes those days feel like a month.

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