When Kids are Different
Sharing about how to explain your child’s differences to other children and what we can do as parents to teach all our kids to be kind, inclusive, and understanding of children with differences.
Hi! Today is Apraxia Awareness Day. As you might know, our five year old son has Childhood Apraxia of Speech (CAS). Apraxia is a neurological speech disorder that affects the way the brain communicates to the muscles and parts of the mouth used to produce sounds. I have a very extensive FAQ here, as well as an instagram Q+A here.
In talking through my Q+A yesterday on instagram, the topic that seemed to resonate most with people was the following:
“How would you suggest parents talk to their kids about kids [who] are different? What can we do as parents to help make sure everyone feels included and understood?”
This question brings tears to my eyes. As a mom of a child who is different, hearing a parent want to have their child engage with and be kind towards my child warms my heart.
My answer is multi-part (no surprise there).
Appropriate Terms
I always like to point out when talking about developmental delays that the word “typical” is preferred over “normal” when referring to child development. So you would say “typically developing children” rather than “normal kids”.
I also prefer that my child’s disorder is not used to describe him as a person, so I prefer the term “child with Apraxia” verses “Apraxic child”. I know some parents of children with Autism feel strongly about this one in one way or another, so it’s also okay to just ask!
Kids State the Obvious
The best part about young children is that they state the obvious. They’ll flat out ask on the playground, “why doesn’t he talk?” or “he talks funny” or “I don’t know what he’s saying.” I view those moments as a chance to let my child know that his difference isn’t something to hide from, ignore, or be ashamed of. That is my chance as a parent to show him that this is just a part of him.
My response usually results with the child who asked being totally satisfied with my answer like, “cool ok thanks.” The parents on the other hand are usually a little in awe, almost surprised that this wasn’t something that we just laughed off or brushed aside.
Our Script
So what was our answer when the little kids asked those questions? My husband and I developed a script of sorts to have ready. This helped us clearly identify the message we wanted to communicate and kept us from being flustered in the moment. Here’s what we would say (and still say - with a few modifications now that he does talk.)
“This is Deacon. He doesn’t talk just yet. But he works really hard every day to work on his words. You can ask him questions or ask him to point if you want to play together.”
This script does three things
Shows our faith in him and his future “he doesn’t talk *YET*” implies that he will someday.
Acknowledges his efforts “he works really hard every day”
Gives suggestions on how they can communicate together “ask him questions or ask him to point!”
Normalizing Differences
I think the narrative around children with differences has changed over the years. At first it was simply “don’t pick on different kids” and that somehow became “ignore the differences” or worse “ignore different kids.” And that’s not the right angle. The real narrative for engaging with children with differences is to acknowledge the difference, but know that the difference doesn’t define a child.
We ALL have something that makes us different. We all have struggles we are working to overcome. Teaching our children that ALL people have differences and challenges will help our children learn to EMPATHIZE rather than EMPHASIZE the differences they see in others.
The Hands We Hold
This year, for Apraxia Awareness Day, I wanted to create a space for other parents and caregivers of developmentally delayed children to come together to share experiences, support each other, root for, celebrate, and lift each other up. Those early years were so hard on us. I would have loved to talk with others in a similar boat about what worked and what didn’t. So with that in mind, I’ve created a private Facebook group called The Hands We Hold to be that place. As parents we hold onto our children’s hands as long as they’ll let us. We let them hold on for support, and we hold on to lead them. But we also need the hands of those around us. We need that group huddle, that squeeze of solidarity and prayer. We need multiple hands to hold when our child is delayed.
If you have a child with a delay (of any kind not just speech!), difference, or special need, would you join us? The more of us coming together and sharing means the more of us that don’t have to feel alone in this journey. Click here if you’d like to join The Hands We Hold.
Disclaimer: The Hands We Hold is a private Facebook group for parents and caregivers of children with delays, differences, and/or special needs. Children’s names are not disclosed. The group is parent led and not related to any medical professionals. Medical advice should always be consulted with a doctor.
To Our Boy
I love that Apraxia Awareness day exists because I get to share about something for which I am clearly very passionate. But this day also gives me time to stop and remember and process all that we have come through and all of the progress our amazing child has made. We are in awe of his determination and spirit. I know this different start to his childhood will only make him tougher, braver, and kinder as he grows. We couldn’t be more proud of you, sweet Deacon.
What is Childhood Apraxia of Speech (CAS)?
An update on our journey with Childhood Apraxia of Speech and an FAQ with tons of helpful information - from what it is, diagnosis, treatment, helpful tips, and resources.
Today, May 14th is Apraxia Awareness Day! If you’re new to following our journey, my son, Deacon (age 4.5) has been diagnosed with Childhood Apraxia of Speech (CAS). CAS is a motor speech disorder that makes it difficult for children to plan and produce the precise, specific series of movements of the tongue, lips, jaw and palate that are necessary for intelligible speech.
We started this journey nearly three years ago and it has been tedious and scary, yet also extremely rewarding. Two years ago when I first posted about Deacon’s speech, he had but only a handful of words. On last year’s Apraxia Day he was working on his name and putting words together. Now, after two years of treatment we finally have an official diagnosis and he is using larger syllable words and sentences!
While it may seem like Deacon has started talking all of the sudden, his progress is a testament to hours of work in a specialized school environment, private speech therapy twice a week, and practice at home. Three years ago I cried and prayed over him, hoping to one day hear him say, “I love you, mom”. He now says that and more. So much that I often have to ask him to be quiet!
We still have a long part of the road ahead of us and he will continue private speech for years to come, but we are so thankful to have tremendous teachers, SLPs, and a community organization in Apraxia Kids to help us navigate this disorder and create a plan for Deacon.
His determination is an inspiration. He has fought so hard for what many children develop naturally and easily. His favorite song is “There’s Always Tomorrow” from Rudolph. He can now use his voice and sing it; and what a beautiful reminder it is: There’s always tomorrow / for dreams to come true. / Believe in your dreams come what may. / There’s always tomorrow / for dreams to come true. / Tomorrow is not far away.”
We share about our journey each year in an effort to provide education and awareness of Apraxia so that Deacon always feels encouraged and never isolated. Below I’ve compiled a more in-depth FAQ explaining more about CAS, diagnosis, the difference in treatment between it and a regular speech delay, and what you can do to help and engage a child with CAS. I hope you take some time to read it and learn more. And if your child also has (or you think they may have) Apraxia, I’m always happy to chat! You are not alone!
Childhood Apraxia of Speech FAQ
Source unless otherwise noted: Apraxia-kids.org
What is Childhood Apraxia of Speech (CAS)?
Childhood Apraxia of Speech is a motor speech disorder that makes it difficult for children to correctly pronounce syllables and words. Children with apraxia know what they want to say. The words are in their heads but often the child is not able to produce the words clearly. For unknown reasons, children with apraxia have great difficulty planning and producing the precise, specific series of movements of the tongue, lips, jaw and palate that are necessary for intelligible speech
Can children with CAS understand what you’re saying?
Yes! Children with CAS understand language and speech. Yet others might mistake and misjudge their unclear speech or quietness as a lack of intelligence. Many children with apraxia experience a great sense of failure and frustration in their attempts to communicate. Some children grow even quieter; others may act out their frustration.
What is the difference between CAS and a speech delay?
A true developmental delay of speech is when a child is following a “typical” path of speech development, although at a rate slower than normal. A child with apraxia of speech is on a “different” path, and has difficulty planning the movement sequences required for speech. This may result in inconsistent errors (saying the same word differently) and difficultly with smooth transitions from sound to sound or syllable to syllable to form words, phrases, and sentences.
How is CAS diagnosed?
A speech language pathologist (SLP) with experience evaluating and treating children with apraxia can test how well your child understands language (receptive language) as well as the type and length of utterance he/she uses (expressive language). To test for CAS, the SLP will look at your child’s oral-motor skills, motor speech skills, and speech melody (prosody). Getting a full diagnosis is difficult, as many children don’t have enough expressive language to fully complete the test. It took two years for Deacon to get a diagnosis.
What makes CAS treatment different than regular speech therapy?
Because the main problem of CAS is speech motor planning and programming, a speech therapy approach needs to focus on the actual sequenced movements of speech structures and muscles during speech attempts. The approach used by the therapist should aid the child in producing clearer and more accurate words, phrases, and sentences that result in clearer spontaneous speech. Apraxia therapy incorporates The Principals of Motor Learning and includes:
Focused attention by the child, reinforced by early success
Intensive, frequent, individual practice
Multiple repetitions of speech movements
Memorization of speech movement sequences (not movements/sounds in isolation)
Multi-sensory Input
Slower Rate
Multi-sensory Feedback
Systematic progression through hierarchies
Emphasis on Self-Monitoring
Compensatory speech and language strategies
Prosody remediation
Addressing all aspects of disordered communication
Careful selection of target words considering function, vowel production and phonotactic difficulty
Source: (Murray, McCabe, & Ballard, 2014; Strand and Skinder, 1999)
Will Children with CAS ever “get over” apraxia?
Many factors influence a child’s journey through therapy for childhood apraxia of speech, like severity of the disorder, comorbid disorders (e.g. autism), and frequency of therapy. Professional articles and experienced SLPs report that most children with CAS, with appropriate help, eventually achieve optimal verbal communication to some degree.
How can I help when interacting with a child who has Apraxia?
Try to create a tension-free and interesting “communication environment”. Encourage but do not insist he/she try to speak. Praise his/her attempts at speech, if only for effort. Know that sometimes he/she might not respond or might respond “I don’t know” as a way to help themselves get out of a difficult communication challenge.
Be patient. Sometimes the fast pace of others can leave a child out of the experience although he/she may be able to successfully communicate if others just offer a bit more time and patience.
Watch for and even create opportunities to help a child make friends. It can be difficult for a child with apraxia to “break into” social communication and situations.
Be aware that sometimes children with apraxia are also physically uncoordinated, making competitive sports or even drawing, cutting, and other motor tasks difficult.
Some children may communicate in alternative ways. Often sign language, augmentative devices, or pictures can help a child as a bridge to clear speech.
Is there an organization for Apraxia?
Yes! Apraxia Kids has been so beneficial for us in learning about this disorder, connecting with other parents, and providing tons of information and resources for free. Find them at apraxia-kids.org.
What are some more resources?
This is a great in-depth overview of CAS.
Think your child may have CAS? Start here.
Are you an educator who wants to learn more about CAS? Go here.
This book was my bible the first year of our journey. Speaking of Apraxia: A Parents' Guide to Childhood Apraxia of Speech by Leslie Lindsey
DISCLAIMER: I am not a medical professional, nor a speech-language pathologist. All information provided is from the apraxia-kids.org website or taken from my own personal experience as a parent of a child with Childhood Apraxia of Speech. Consult your doctor and/or speech language pathologist for specific details pertaining to your child.
Photos by Caroline Guinn Photography