From Personal Essay

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

Friday’s Thoughts: Right Speech (samma vaca)

I want to start posting some thoughts on Friday’s to help you wrap up the week and send you into your weekend. These posts will be more of personal essays rather than tips, tricks, and lists. I want to give you some things to ponder as you sit back and enjoy a couple of days off from work (if you work a typical 9-5 schedule that is!).

I’ve thought a lot this week about patience, and a friend of mind once told me in the most beautiful way that patience to her is “being in the present.” She said:

“Satya was nearly a year old when I realized, for me, patience means being in the present. If I am in the present moment, I don’t need to try to “have” patience. There is nothing left to have, your mind is in the present and nowhere else. What happened a moment ago or what will happen a moment later is irrelevant.”

Perfect. Let’s carry that thought with us through this journey! She also reminded me that the potential of Buddhahood is present in every being. Which is what inspired today’s focus!

Right Speech | Lea Ciceraro | www.leaciceraro.com | www.lovemesimplyphotography.com

Right Speech; as per Buddha’s Eightfold Path. I am nowhere near an expert on Buddhism, so for those of you who are Buddhist, I’d love for you to join in this conversation and elaborate on what it is you might also be seeking with Right Speech, as you will likely help provide everyone with an even deeper understanding. I’ve never felt tied down to any one religion in particular, so I’d love to explore and try to understand what each one has to offer.

My understanding of Right Speech is to be conscious of your thoughts and words and thus avoid criticism, condemning, gossiping, and harsh language (among others). According to AccessToInsight.Org, Right Speech is “…abstaining from lying, from divisive speech, and from idle chatter.” All of the info on that link is very interesting and worth reading, and there’s so much of it that I won’t try to reproduce all of it here.

I much too often find myself being critical of others or just not being positive with my language, sometimes just in thoughts and sometimes in a whisper to the person I’m with. But I never say anything aloud to the person the criticism is about, so I’m not being mean to them, right? Wrong. Kind of like your mom probably always told you, “If you don’t have anything nice to say, don’t say anything at all.” Mom’s onto something! ;-) And my own mama always said, “ALWAYS be nice to EVERYONE, no matter what.”

There’s so much bullying going on these days in so many forms, whether it’s road rage induced, or in a tiny little grade school classroom, or on the Internet. Maybe if more people adopted a Buddhist approach and took each part of it seriously, there would be less bullying… less feelings hurt… more love. Anyway, that’s another topic in itself.

I’m reading Eat Pray Love by Elizabeth Gilbert and there’s a great page (p. 121) in there where she describes a yoga teacher once asking the question during a practice, “Why do we practice yoga?” She goes on to explain how yoga in Sanskrit can be translated as “union” and “…the task at hand in yoga is to find union– between mind and body…” There’s obviously a LOT more to yoga than that, but today what I want to take from that is finding the union between my body, my thoughts, my actions, and Right Speech.

After all, not only am I a member of society, a teacher, and a photography business owner, but most importantly I’m also a wife and a parent, and “with great power comes great responsibility.” ;-) What kind of example do I want to be setting, especially for Maximilian and Oliver? This needs to not only start with my words and actions, but on a more difficult level: my thoughts.

Where do you feel you stand with “Right Speech?” Have a wonderful weekend, friends!

XOXO