7 Things I’ve Learned While Having a Child with Apraxia

7thingsapraxia_mylifewithlittles

I see you. You’re the mom in the grocery store nervously trying to explain to the nice old lady why your son isn’t telling her his name. You’re the dad over by the jungle gym watching other kids call out to your son, but he just looks back at them silently, missing out on the opportunity to make a new friend. You’re the one holding back tears in the library when a seemingly innocent older child loudly asks you, “Can she even talk?” You’re the one giving an Emmy Award-winning performance of pretending to have thick skin as other moms at the playgroup give you the side eye while you try to love your frustrated child through their meltdown because all they really want is a snack, but can’t get the words out to ask you. I see you.

Let me offer you a hug, a tissue, and my support. I’ve been there. I’m still there. But thanks to a few years of experience, an awesomely supportive husband, a stellar therapist (for me), and a dream team of therapists to support my little one, I can honestly tell you that it can and it will get better. It seems this Apraxia journey is a never-ending tale with twists, turns, surprises, and even a few sprinkles of excitement. Here are some things I’ve learned along the way:

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First and foremost…

apraxiatotallysucks

There. I said it. Apraxia can be frustrating and absolutely heart breaking. While all of my friends with toddlers were basking in the I love you’s, having full-blown conversations about which Disney character is their favorite, and complaining that little Maddox or Lily just “won’t shut up,” I would have given my major organs just to hear my child call me Mommy. (It didn’t happen until age three, by the way.) All throughout my pregnancy I dreamed of hearing those precious baby babbles, early attempts at asking for cookies, blowing bubbles and cutely sung songs learned at nursery school. I experienced none of the above, and if I’m being completely honest, that totally sucked.

But since I’m keeping it real, I must also admit to having some incredible experiences too. Like, for example, that time my little one came home from tumbling class with Daddy, zipped open his jacket, pointed to his Snoopy sticker and proudly exclaimed his very first full sentence: “I got a ‘ticker!” Or the night I tucked my child into bed, kissed his forehead, and sighed an exhausted ‘I love you.’ I was expecting the usual silence in return… but a few moments later, I heard my very first ‘wub you, mom-bee.’ Even now, a few years later, I still get choked up when preschool teachers tell me that my child “always says please and thank you.” I’ve even gotten some pretty adorable renditions of “Old Mac Donald” and “The Wheels on the Bus” in recent months (finally! 🙂 ). And I’m not ashamed to admit – I smiled inside when I heard my child got in trouble at preschool for “talking with friends” instead of listening to the story at circle time.

So yeah, Apraxia is difficult – for the child and those who love them. But at the same time, Apraxia has taught me to be more appreciative of things we often take for granted. Because of Apraxia, I have learned to spend less time thinking about the things my child can’t do (yet) and spend more time cherishing the milestones, the gains, and the accomplishments throughout this process.

 

apraxia_known

Did you know Apraxia is extremely rare?

Apraxia occurs in only 1-10 out of 1,000 (less than 1%) of children.

Because of this, many people likely have not heard of Apraxia, and will probably have some trouble understanding what it is (and isn’t) at first. Heck, I hadn’t even heard the word Apraxia until we received my child’s diagnosis.

It is also likely that you may find a speech language pathologist who has “learned about” Apraxia, but does not have experience treating it (because there are so few cases of true Apraxia). In these instances, my suggestion is to connect with a therapist with experience in this area if you can. In the past we’ve had lovely and well-meaning therapists who were helpful, but not as knowledgeable about Apraxia. Results were unfortunately slow and scarce. Once we were connected with an experienced therapist who continues to seek out research and training on Apraxia, my child began to progress by leaps and bounds.  I whole heartedly believe that the knowledge, experience, and tenacity of my child’s therapist has made all of the difference in our journey.

 

forgiveness_apraxia

  • “So, can he still not talk?”
  • “I thought you were supposed to be able to understand most of their speech by the time they’re this old.”
  • “So what exactly is wrong with her?”
  • “He doesn’t look like anything is wrong with him.”
  • “How did you understand what just came out of his mouth? It sounded like jibberish!”
  • And my personal favorite: “Oh, what language is she speaking?”

Yes, these are real things that have been said to myself and other Apraxia parents. A harsh reality I’ve come to accept is that people are going to say and do seemingly stupid and insensitive things – strangers and yes, people who are close to us. But, the sooner you can forgive them in advance, the better off you’ll be, and the easier it will get. (I still have to gently remind family members that my child’s hearing is just fine, and that speaking loudly and slowly isn’t going to make his speech any clearer.) Just try to remember – most people really do mean well deep down inside. They may not even realize the impact of what they’ve said or done.  As annoying as some questions can be, they can lead great learning opportunities and promote awareness if you prepare some answers in advance.

Try this:

Come up with a 10-second explanation of Apraxia that you’d be comfortable sharing when these opportunities arise.

Here is one example: “Kids with apraxia have a really hard time getting all of the pieces of the speech machine assembly line moving in the right direction at the right time. The end result of the speech machine being out of synch is speech that can be very difficult for a listener to understand.” [*Source]

Personally, I struggled more when friends who were aware of our journey didn’t ask about it.  It made me feel isolated, lonely, and somewhat resentful at times.  However, over the years, I came to understand that some friends and loved ones would rather risk the silence than end up with their foot in their mouth (hence, the earlier examples).  In these cases it may be worth reaching out and letting them know what they can do to be supportive.  This way, they can spend less time trying to figure out what to say or how to ask, and more time being someone you can lean on.  That’s what friends and family are for, right?

 

earlyintervention_apraxiaThe earlier the condition (Apraxia, or others) is diagnosed and intervention begins, the greater the opportunity for significant improvement in speech and communication. With therapy, many children are eventually able to communicate normally. Some can even learn sign language to help them communicate.

Early Intervention is the best thing to happen to our family. Through the intermediate unit in our county, my child received speech therapy, occupational therapy, and special instruction (pre-academics) right in our living room and free of charge! When it came time for preschool, the therapists went into the school setting to help with extending skills and communicating with peers. We also supplement with outpatient therapies, too. My child’s team of therapists is magnificent, and the growth I have seen in my child is astonishing! He is barely recognizable in comparison to where he was two years ago.

And for those who may be concerned with ‘labels’ or ‘stigma’ for accepting early intervention services, please consider this:

  • If your child were hungry, would you feed them?
  • When your child is sick and a doctor prescribes medication, would you give it to them?
  • If your child had a broken leg, would you take them to get a cast?
  • If your child had a toothache caused by a cavity, would you let a dentist give them a filling?

Early intervention is no different. Consider early intervention as a means to address your child’s needs. The earlier a child gets help, the more progress they will make, and the less likely it is that they’ll need the services long term.

 

smartkiddos_apraxia

In my humble (and admittedly biased) opinion, a child with Apraxia is really quite brilliant. Think about it – children with Apraxia work very hard taking countless hours of therapies, while learning sign language and other means of communication in addition to everything most children learn at home and in school.  That’s a pretty big deal!

Still don’t believe me?  Put Apraxia aside for a moment and reflect on your child’s strengths – the things they’re really good at.  I’ll bet you can find several.  My (non-research-based) hypothesis is that since our children are working so hard in one area (speech/language), that same work ethic and tenacity begins to generalize into other areas, resulting in finely tuned skills.  My child, for example, has in impeccably detailed memory. We keep a memory journal of fun outings we’ve taken as a family. Every so often, he’ll point to a picture and tell me something so precise about that day that I never would have remembered on my own.

Just because a child cannot communicate verbally does not mean that they are not processing the world around them. While they are still learning how to talk to you, they are busy stockpiling all kinds of interesting ideas, details, and memories in their minds. And one day, when talking comes much easier, they are going to blow you away just by sharing a few things they’ve “been meaning to talk to you about”.

 

 yet_apraxia

Some children will pick things up quickly, while others will take the scenic route. Rather than wondering IF your child will get there, look forward to doing the happy dance with them WHEN they do get there!  As often as possible, remember to rephrase and reframe.

yet_apraxiareframe_apraxia

 

 

apraxiaresources

The two greatest resources for children with Apraxia are a qualified Speech Language Pathologist who has experience treating Apraxia and you. The support and encouragement you provide your child is unequivocally crucial to their success. In addition, there are many wonderful service providers, support groups, and websites available for families.

To all the Apraxia Moms and Dads out there, please remember that you’re not alone. The journey navigating Childhood Apraxia of Speech is mysterious, exciting, and unique for each of our families. There may be high highs, low lows, twists, turns, and everything in between. But please, PLEASE, remember to always keep hope alive. Things will get better, one way or another. ❤

What is the greatest lesson you’ve learned on the Apraxia journey? I’d love to read about it in the comments below.

Thanks for reading!

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