From disabilities

understanding apraxia in our life | 1-year later

It has now been exactly 1-year since the diagnosis “Childhood Apraxia of Speech” (CAS) came into our lives and shook it up forever. Just when I thought we had encountered and conquered most of the steep learning curves of life, a new one gets thrown at us. And it’s a doozy.

I don’t think most of the people in our lives, or a majority of the new people we encounter on a day-to-day basis, quite understand the magnitude of challenges that a family living with a child who has CAS has to face. I don’t think people get what is like for that child, either. And most of us wouldn’t if it wasn’t for books like Anything But Silent, that is partially written from the perspective of a girl (now grown) who has apraxia. I’d like to first share a little bit of background info about apraxia to help further an understanding of it, as well as give you a little bit of insight into what it’s like for our own family.

“What exactly is apraxia/dyspraxia?”

I wrote a length post about this for Apraxia Awareness Day and you can read it HERE. I’ll do a quick recap for this post, though. I had NO idea what these terms meant until Max’s diagnosis. The term “apraxia of speech” is used to describe a speech disorder (that is neurologically based) that interferes with a child’s ability to initiate and sequence motor movements for speech. It is an oral-motor speech disorder characterized by the lack of ability to consistently position the articulators for speech. Unintelligible speech is the result. Basically, the brain doesn’t make the right connections to send the proper signals to the mouth necessary to produce speech. The child has limited control of speech muscles and there is no guarantee that children with apraxia will ever speak, or speak intelligibly. The apraxia also affects Max’s fine and gross motor skills, which is described by Max’s occupational therapist as dyspraxia. He also has a sensory processing disorder on top of it all.

Apraxia/Dyspraxia is not a developmental delay that will ever resolve. It is an issue of health and normal physiological function. A child will not outgrow this disorder. Developmental delay is when a child follows a typical path of development, but at a slower than normal rate. Children with apraxia/dyspraxia, like Max, generally have a wide gap between their receptive and expressive language abilities, with receptive abilities normal and expressive abilities seriously deficient.

“Why didn’t he get help sooner? Didn’t you see any signs?”

Of course we noticed Max’s delayed milestones and limited speech. But please know that we love him to pieces and were doing absolutely everything in our power to help him on our own. Also, we had absolutely no previous children of our own to compare his development to, so in retrospect it was really hard for us to tell what was typical development and what wasn’t. We were SO confident in his determination and abilities and were sure he’d catch up to his peers. And then the gap only widened and we finally knew that the help he needed was outside of our own abilities and what we could offer him. And, apraxia is something that has a much harder time being diagnosed until after 3 or 4 years of age. Had he started speech therapy sooner, he still might not have made much/any progress because an SLP might have been helping him with a standard speech delay instead of using the unique approaches of apraxia specialists. I believe we had him evaluated and started treatment at just the moment we needed to.

Also, we do not need anymore questions or suggestions along the lines of: “Have you sought out public assistance?” “What about Early Intervention?” “Is he going to public school and are you lining up an IEP meeting?” “Why don’t you just see a therapist that’s in-network?” “What about an iPad to help him speak?” Etc, etc, etc. Most of the people we first tell about Max have a laundry list of ideas and suggestions for us, as if we haven’t already done hundreds of hours of research and haven’t chosen the best current therapists and treatment plans and education setting for him. Sharing your own experiences and stories are fine, but I promise we’ve got the rest covered.

“How is Max handling it?”

It’s hard. But he really doesn’t know any other way of life. This has been with him forever. And considering he has never had an effective way of communicating with us until he began therapy, I’d say he has handled it like a champ!

Only through incredible amounts of repetition and practice will Max then be able to come closer to making the proper muscle and mouth/facial movements and shapes that allow him to produce sounds/words. He has to practice EVERY word and sound over and over again until he can say it relatively clearly, and then keep practicing it until it becomes more like second-nature and he doesn’t really have to think about it (think about it as similar to learning how to ride a bike, and after a while you just balance and pedal without really having to give it much thought).

On days when Max is particularly tired or maybe sick (or even just distracted), he regresses a little and becomes slightly uncoordinated and clumsy, and lessens his speech with most sounds coming out a bit slurred together. Or he mixes up words or drops off consonants. This is something that will happen his whole life. He has increased his expressive language from less than a dozen words to now several hundred words and approximations (words that sound unclear/imperfect to others) since he started his speech therapy. We.are.STOKED. It’s so exciting for him to finally start being able to tell us simple things and needs he has like being hungry or thirsty. However, the average person who is not around Max 24/7 will probably only be able to understand maybe less than 50 of the words he can say.

And therapy days are completely and utterly exhausting for him (as well as us). He works so hard and is just completely bushed by the time we get home.

“How are YOU handling it?”

Well, nobody ever really asks that. We were initially very heartbroken, but are constantly learning ways to move forward. And we’re completely determined to do everything in our power to help him. It’s devastating to watch him struggle so much. Every.damn.day is a challenge. Every minute. He’s our baby. Our firstborn. The one who made us parents. Everyone wants the best for their kids and to not see them face adversities. So to want some normalcy for your children and then have something like this thrown in the mix feels impossibly hard at times. And the financial struggle surrounding it all is enormous. It’s stressful. It’s mind-boggling. Sometimes we feel completely defeated. But we’re also incredibly determined to get him the absolute best therapy, and help him flourish in every way possible.

“How does apraxia/dyspraxia affect each of you in your family?”

We practice with Max constantly outside of his sessions, both with speech and occupational therapy. Jose and I both sit in on every therapy session so we know how his therapists are working with him, see what he’s excelling at versus what he needs to work on, and how exactly they help him progress.

And we’ve had to drag along Oliver (now 14-months old) to all of this for nearly his entire short existence. He will never know a life that doesn’t include therapy several times a week for his big brother (and of course we’re keep an extra watchful eye on Oliver’s development now that we know what to look for!). And that in itself is just exhausting for all of us as well. Oliver’s babyhood has been so different than Max’s because we can never just solely focus on Oliver. Or allow him to nap when/where/how long he wants to. Or take him to playdates or mommy and me yoga like I did with Max. And at this point we’re still taking him to the doctor every few months for checkups and vaccinations. So WE.ARE.BUSY! I’d love to be less busy. But right now it’s not really in the cards. And of course all of that is on top of me running a photography business, doing freelance writing, and Jose working a full-time job plus freelancing, just to help bring in some extra money to put toward therapy bills.

And since we are so incredibly busy and strapped for cash (since every penny of any money we make goes to either bills, student loan debt, or therapy), we really have to forfeit everything else. We don’t really buy things. We don’t go on dates. We don’t take vacations. It’s just not in the cards for us right now. We have to give up everything that doesn’t involve bettering our family, increasing our well-being, and securing our future. We’ve gotten really good at finding free things to do, and are getting really cozy in our home, enjoying every bit of it inside and out. Our home is our safe space. Our bubble. It is our temple and we are at ease here. All four of us love our routine and our own cozy spots. Right now, this is the space that works for us.

Also, Max needs therapists who specialize in apraxia, which means we have to drive 45 minutes to an hour each way each day for therapy. Right now he’s receiving speech therapy 3 times per week for 30 minutes each day, and recently we reduced his occupational therapy to just once per week for 30 minutes because it is all just incredibly difficult to afford, and right now his needs for speech therapy are greater.

“But what about insurance?”

Ohhh insurance. Yeah. They’re fun. As I mentioned near the beginning of this post, apraxia/dyspraxia is a neurological impairment. However, insurance companies refuse to believe this is something that he was born with, that is a brain dysfunction, that impairs his ability to function normally. They say they’d provide coverage if he was injured in an accident and that’s what caused the dysfunction. A lot of times your insurance coverage depends on what the employer has selected, too. It also differs in every state. So it’s a completely different situation for everyone. The insurance folks are headstrong to believe that it’s just a developmental delay that will remedy itself without intervention. They would cover rehabilitative therapy, but not habilitative.

I fought BCBS in NC for an entire year and lost every single claim and appeal. Not a single evaluation or therapy session was covered. We’re paying nearly $800/month in premiums and receiving zero therapy coverage for him. So starting December 1st, we’ve decided to drop the insurance coverage and seek out SSI and Medicaid (something a lot of other apraxia parents have had good luck with!). Fingers crossed.

“What does all of this mean for Max’s future?”

Max has an incredibly difficult journey to continue. Sometimes I get so overwhelmed thinking about the difficulties he has and the ones that lie ahead. I see the other 5-year-olds on playgrounds and how they interact and play and talk in sentences. And then they wonder why Max isn’t talking to them. It’s not that he doesn’t want to. He just can’t. Ugh, and then there are the looks from a few rude parents out there. The “what’s wrong with your kid?” looks. Explaining Max’s special needs and disability to other parents has been a challenge as well. A challenge to find the right words and the easiest way to help them understand something they’ve never heard about before (and that’s if they decide to even venture into a conversation with you to begin with, or just straight up ignore your family because you’re different).

And then I think ahead to school. And social interactions. And bullying. Did you see sweet Danny on Ellen last year? He also has CAS (but his was from a known cause, unlike Max’s). The video is heartwarming, to see a young man stand up for him, but it’s also completely heartbreaking to think that Max will likely encounter the same type of bullying.

Have you seen this list of famous dyspraxics (no apraxia issues as far as I can tell, though)? Even in interviews with Daniel Radcliffe, he talks about his struggles with dyspraxia and how he found other things to focus his efforts on to succeed. Max will do the same. Just because he may not be able to verbally communicate well or easily, doesn’t mean he can’t succeed in areas of life and careers that don’t heavily rely on verbal communication if speaking doesn’t end up being one of his strong suits.

“How can I help?”

Some friends and family have sent us money now and then to help pay for therapy and that was incredibly kind and thoughtful! Every penny helps! We are fortunate for Max to attend such a wonderful private therapy clinic that gives us a discount on their services, so the money goes even further than it would otherwise. They have become like a second family to us. Everyone there is so sweet! Thank you ALL who have contributed to Max’s therapy!!!

[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!]

Another way to contribute financially would be to send clients our way! Either photography clients for me, or art/illustration/graphic design/web design clients for Jose! That income literally puts food on our table and gets Max all of the therapy he needs!

But something that goes even further than financial support, is emotional support. Just check in. See how Max and Oliver are doing. Try to put yourself in our shoes. Ask how we are doing. Nobody ever really does. Because in all reality, even though it’s appreciated, money is always just a band-aid fix. We apply for grants (Max was awarded two grants this year that we were able to immediately use on therapy!), sell things, bring in freelance clients, etc. We find ways to try to get the therapy paid for. But sometimes it’s just an incredibly lonely road that nobody gets, unless you also have a child with special needs. And just don’t flaunt your easy life or good fortune for the sake of bragging. Nobody likes that anyway, but especially those that are immensely struggling in some way.

Finally, just spend some time with Max! Get to know him. Be sensitive to his disabilities but treat him like a regular, fun, happy kid! I think that’s where a lot of people go wrong. They don’t take his limits and abilities into consideration so they end up pushing him further than he is comfortable/capable, but they also don’t treat him like any other 5-year old who just wants to have a fun time. Educate yourself, ask us any questions you may have (please, don’t be shy! I’d rather educate you than have you remain fearful of hurting feelings), and then just get to know Max. I promise you will just adore him!

Only rainbows after rain. The sun will always come again!

Those are some of my favorite lyrics by Andy Grammer. Because it’s true! Most days are ridiculously difficult, but every once in a while you get sunshiny glimmers of hope. And it is those moments that I grasp onto that encourage me to never give up. Ever. And Max’s therapists are total angels! He has come SO FAR in just 1-year. He amazes us more everyday with new skills and words he has learned. You can tell he’s gaining more confidence, too. And he is starting to be able to share his knowledge and interests and aspirations with us! It’s incredible and SO wonderful!!! Every day he is acting more and more like a typical kid, and it is such a blessing to witness. I have NO idea what his future is going to be like, but I do know this: Max is the most kick ass human being I have ever known, he is a sensitive and wise soul, he has a passion for life and nature that is sure to make the world a better place, and he is sweet and kind and loving and will be your best friend if you let him.

And, for anyone else on the same journey of us, especially if you’re just beginning, please know that there IS hope! The tunnel isn’t as dark and scary as you initially may think. And I promise that light at the end of the tunnel is NOT a train. ;-)

XOXO

Max

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!]