From homeschool

Back to School with an Invisible and Silent Disability: Lessons in Kindness

Did you know that as many as 1 in 100 children (other studies say 2-3 per 1,000) may have Childhood Apraxia of Speech (CAS)? For those of you who are new to apraxia, or may just need a refresher, CAS is when a child’s brain has difficulty making the proper connections with their mouth/face/jaw/etc. when they try to talk, thus resulting in little to no speech, or incorrect/inconsistent sounding speech, even though they understand you completely and know exactly what they want to say. While the apraxia statistics might vary a little across studies because this severe speech disorder is incredibly difficult to diagnose, and yes, it is easy to misdiagnose because of its complicated signs and symptoms, it is still a very real issue that likely affects a child that you know.

Take a second to imagine picking up your son or daughter from school on the first day, and you notice most of the other kids just smiling, laughing, and talking away. However, there is one on the outskirts who is particularly quiet, but you just brush it off as shyness. Later you hear about that child getting left alone on the bus for hours after all the other kids are dropped off, because they simply couldn’t speak up to let someone know they missed their stop (yes, this has happened!).

Or, on a slightly less traumatic scale, how about the kid who sits alone, in silence, at the lunch table? Teachers, do you notice them? Do you care?

And the girl who plays by herself during recess because she can’t ask if she can join another group of girls for some company.

Or even just the boy who needs some extra help in the classroom, whether it’s with writing his name or tying his loose shoelaces. Or the child who can’t function in crowds and chaos because their brain is wired differently (SPD – Sensory Processing Disorder – is very, very real and often ignored!). Teachers, do you understand what this child is really going through? What about encouraging the use of hand gestures and perhaps learning a little sign language yourself (which helps, not hinders speech development– contrary to what some critics say) to help out those who need some communication assistance?

It’s that time of year and the back-to-school frenzy has begun. This post is mostly written for parents, but is an important read for educators (and students!) as well. While a lot of those above scenarios may just seem like hard-to-stomach “what if’s” to most people, they are very real to the parents and caregivers of children with CAS.

You’ve been thinking about it all summer, especially if it’s the first time you are sending your kids off to school. It might have even been on your child’s mind all summer. Some children are being walked through their neighborhood to kindergarten for the first time ever today. Others are older but entering school halls for the first time because maybe they had been homeschooled up until that point. There are a thousand different back-to-school scenarios for all of the different families out there, and it is impossible to cover them all. But everyone’s experiences with it are not as simple and straightforward as you might think. There is one in particular I would like to discuss. And it’s the back-to-school anxiety surrounding the invisible and silent disability: Childhood Apraxia of Speech (CAS).

When most people think about children with disabilities, they tend to automatically picture a disability you can see, whether it’s Down’s Syndrome or a child who needs to use a wheelchair. But there are other disabilities that are not as easy to pinpoint at first glance.

How much do you know about disabilities in general? Here is a great quiz I came across this morning that is sure to educate, too! I also admire this mom who wanted back-to-school advertising to be inclusive of children of all abilities, so she organized a photo shoot herself to do just that. It was also reminder to me that some disabilities are not visible, like apraxia. (She did an awesome job, by the way.)

I have written about apraxia before for this year’s Apraxia Awareness Day in May, and I feel like I did a pretty bang up job getting the word out there and educating others on this silent disease. The response was tremendous, and it really brought together a community of people who sometimes feel very alone in their journey!

Before I continue, I want to fully disclose that while our son Max is turning 5 soon and was diagnosed with severe apraxia/dyspraxia/SPD 9-months ago, he is technically just a little too young to begin kindergarten in our local public school system this year. So most of what I am sharing in this post is based on my secondhand experiences of what others are going through with their own apraxic children and sending them back to school (or not). With that said, if I had to choose his education setting today, it would be hands down homeschooling/unschooling (I will write another post on this later) because his speech skills are still too far behind his peers for me to be comfortable enough (personally) to send him into a typical school setting. And based on how he did in a “preschool summer camp” a couple of months ago, he is just not ready for a public school setting (yet). Also, since I am a stay-at-home-mama at the moment anyway, I have the ability to homeschool our children, which is a true gift! But, I digress.

Lately, the message boards in our CAS community have been full of thoughts, plans, and worries surrounding sending our apraxic children to school. For most families with neurotypical children, back-to-school excitement entails lists of classroom supplies to be purchased, clothes and shoe shopping, and prepping lunches for the week. However, for our community, those to-do list items might be secondary to things like writing a personal letter to the teacher (examples here, if you need them) and meeting with them to explain apraxia and what their special needs are going to entail. Or even creating a “get to know me” book about their child, as inclusive as possible, so their teacher has a full picture of this child’s interests and personality, since these children are unable to tell them everything themselves.

Perhaps back-to-school prep for a family affected by CAS means buying and setting up an AAC (Augmentative and Alternative Communication) device so their child has a way to communicate with their teacher and peers since they cannot speak well, or at all in some cases. Or, it might mean the parent has to make sure their child’s IEP (Individualized Education Program) is 100% in working order, after hours of planning and meetings, and serving them in the best way possible. Although, some caregivers and parents struggle so much with the IEP process and fighting for their child’s needs, that eventually they just take their kiddo out of the public school system and decide to homeschool them, knowing that is what will work best for their family. Because let’s face it, some school environments are just not ready, willing, or equipped to handle our sweet kiddos and their individualized needs. And some parents are downright stressed out to begin another school year somewhere that has been less-than-ideal for their child.

Private school is another option, obviously. But how many of us can really afford that on top of therapy bills that our insurance company is probably still not covering? But that’s our own personal situation (please don’t remind me again about therapy in the school setting… Yes, I know about this option, and no it’s not the best choice for us right now). Again, sorry, I digress!

If we manage to sort through all of those logistical issues and decide to go the route of public school instead of homeschooling, all of this is on top of other concerns like finding a way to schedule in the necessary speech (and sometimes occupational) therapy their apraxic child already needs, in the midst of a regular school schedule and other activities. And let’s not forget about the anxiety surrounding social encounters and wondering if your son or daughter is going to be able to easily make friends or be fortunate enough to have someone stand up for them in the face of bullying.

Or maybe you just cannot bear the thought of sending your special needs child out into the great vast ocean of public school (yet?), so you make the decision to homeschool, and are now faced with a whole different set of challenges (again, more on this in another post), including possibly feeling slightly sad that your family does not get to participate in the excitement of the first day of school. So instead, you sit on the sidelines and cheer on your friends and their kids hitting the classrooms, and keep your unique challenges and feelings to yourself. Because really, they just don’t quite understand. Which again is part of the reason it is so very important to me to raise awareness by continuing to write about this unique disability and the challenges associated with it.

And some parents are just beginning their CAS journey and have an endless amount of concerns and questions about it all. We need to be just as supportive of each other no matter where in the process they are (I hate when I see parents of children with apraxia verbally and emotionally attacking each other!). Try to remember that there may be parents you chat with in passing in the school halls who just know “something is up” with their child’s needs and development, but they haven’t been able to pinpoint it yet. Be present and understanding for them, too. There is no room for judgement on the rollercoaster of parenthood when all we want is what is best for our children.

Now that I have some of the concerns, to-do’s, and fears laid out for you that several parents in our apraxia community are currently going through, I would like to offer a few suggestions on reaching out to families with special needs kids. First, be sure you are teaching your own children kindness and about all of the unique differences that exist out there between them and their peers, which should really just be celebrated! The world would be a boring place if we were all the same. I find that children with apraxia especially, have to be so much more creative with their interests and ways of communicating that they pick up incredible skills and personality traits which most other kids do not. These children are incredibly gifted and special. Encourage your neurotypical child to reach out and get to know them. There may be a lifelong friend in it for them.

Something my own awesome mom told me probably everyday as a kid was, “Always be nice to everyone.” And along a similar note, one of my midwives told her own daughters something along the lines of, always look for the kid who doesn’t have anyone to talk to or play with, and go talk to them and make friends (umm, this goes for other parents you see out at a park with their kids, etc!). Encouraging your kids to reach out to the ones who are a little left out for whatever reason, can move mountains. Especially when your kids take it a step further and invite them to their birthday party or sleepover.

Finally, kindness extends beyond teaching your kids to be nice. You as a parent need to lead by example and be kind to everyone as well. Your kids are watching and listening. I hear too may awful stories of other parents blaming the parents of those with apraxic children, saying it’s their fault for their disability. Or they are telling their own children that their apraxic friend at school needs to “stop talking like a baby,” etc. It’s horrible! Nobody should be ignorant, quick to judge, or talk behind someone else’s back, especially without ever educating yourself on a disability you may never have heard of before. Everyone should engage in meaningful conversation with all other families, especially those you suspect may be having a harder time than others, no matter the reason, but especially if you have noticed or heard that their child has a disability. Invite them out for coffee. Or to a playdate once you have educated your own children on being kind to everyone. Find out what a “day in the life” is like for them. And then maybe just bring that parent some chocolate and a bottle of wine once in a while, knowing well that their week probably had unique challenges and stresses that your’s did not. :-)

So please, during all of the back-to-school excitement, try to take a second to remember the families who have to take a much more complicated approach to it all, and lend them an ear or a helping hand. Those families with unique challenges are already being supportive of you, even if you haven’t noticed. And please, please, please, teach your kids (and yourself!) kindness. Always be nice to everyone. For everyone is fighting a hard battle.

XOXO

 

 

 

 

 

 

[12.10.14 UPDATE: I have created an email address to use for collecting therapy donations for Max at: avoiceformax(at)gmail.com via PayPal, because so many people have expressed interest in helping our sweet kiddo!]