I’ve recently learnt, that May is Apraxia Awareness Month.
For those of you who are not familiar with the term, Apraxia of Speech (AOS) is an uncommon neurological disorder that affects the brain pathways involved in planning the sequence of movements involved in producing speech. The brain knows what it wants to say, but cannot properly plan and sequence the required speech sound movements.
[source: National Institute on Deafness and Other Communication Disorders (NIDCD)].
It could be congenital or acquired and could affect children as well as adults. It’s also known as Verbal Apraxia, Verbal Dyspraxia, Developmental Apraxia and Childhood Apraxia of Speech (CAS) when present in children.
—> More info can be found here: Apraxia Kids, American Speech-Language-Hearing Association (ASHA), 

When I started investigating my younger son’s speech delay, I did a lot of research and my research led me to suspect that my son could be suffering from CAS, but neither our family physician nor our pediatrician would help me with the diagnosis, saying that a Speech Language Pathologist (SLP) would be the person to diagnose Apraxia… But as it turns out, of all the provinces in Canada, the one I live in, Ontario, restricts speech language pathologists from communicating the diagnosis of CAS. (Yep, and the doctors I’ve been to weren’t even aware of this fact).
I’m not sure if there is any other Canadian province that limits the SLP’s authority as is the case in Ontario, but as far as I know (and please enlighten me if I’m wrong), it seems like Ontario is the only one.

So if the SLP is not allowed to diagnose,  how does the diagnosing process work in Ontario?
Well, let me put it this way: In Ontario, getting a CAS diagnosis, is, and I’m not exaggerating here, mission impossible; and here’s why: in Ontario, the only viable CAS diagnosis you can get is one through a physician, any doctor really, which sounds so simple and straight forward in theory, and is pretty practical, given that all doctors are well aware of CAS.
The problem is, many doctors have either never heard of CAS, or lack the sufficient training in identifying and diagnosing it.
The doctors that have a better knowledge of CAS are developmental pediatricians, and neurologists. But even they restrain from giving an early diagnosis in most cases.
Almost all parents I’ve come to know in this province are met with pretty much the same, very laid back response: “wait it out, be patient, your child might grow out of it”, and some may even add: “a diagnosis is not important”, and in some cases, parents would get the “suspected CAS” verdict.
Now in defense of healthcare professionals, I must point out, that the diagnosis of CAS is pretty tricky, because there is no clear cause, every case is really different and may be concurrent with other medical conditions, making it very hard to identify.
Not to mention that an inaccurate diagnosis of CAS in a child can devastate the whole family and direct the child’s therapy in the wrong way, which will lead to unnecessary frustration.
But is postponing a proper diagnosis the answer to avoiding an inaccurate one?

While many children do grow out of a speech delay or turn out to be just late talkers, most don’t, and their struggle becomes a severe disability, affecting not only their speech and communication, but also their receptive language and comprehension skills, their literacy, their social skills and their mental as well as emotional health and well-being.
An early diagnosis means an early and proper intervention when it really matters the most; it means support, empowerment, boosting self-confidence and helping children excel rather than just get by.
It also means an end to a worried parent’s chase after the truth, a very much needed support in that parent’s fight to get their child access to the right services at school, and a possible insurance or government financial aid of some kind for those who can’t afford speech therapy.

After being told to wait it out by all doctors I’ve been to, including a developmental pediatrician, who only “suspected” CAS, and asked me to wait another year, because my son was “too young”, I thought, maybe I am a paranoid mom after all, maybe I should just wait.
But deep inside I just felt that a piece of the puzzle was missing, something I couldn’t put my finger on, but had to. So I didn’t stop my research, and that’s when I came across a book that literally saved my son’s life, it’s titled “The Late Talker: What to Do If Your Child Isn’t Talking yet“.

It was from this book that I learnt the importance of an early diagnosis and an early intensive intervention, and that a parent should never ever wait.
It was this book that directed me whom to consult with as a next step, and that ruling out other medical conditions is a crucial part of an accurate CAS diagnosis.
When I read this book, it was almost a year of speech therapy for my son that brought nothing but frustration to him and us. Not because the SLP was actually pressuring him, in fact our SLP was a very sweet, extremely experienced one, but because over the course of a year, my son couldn’t respond to any therapy approach and he was truly frustrated that he started refusing therapy sessions. And although I know speech therapy may take years to show actual results, but my gut was always telling me something was going on.

So, following the book’s advice, I requested a referral to a neurologist, but then again, no one would refer me, as my son seemed “perfectly healthy”, and is too young to consider his problem a serious issue.
I fought my way to seeing a neurologist, and finally, I got a referral to an amazing pediatric neurologist, who immediately requested an MRI, that instantly revealed the Chiari Malformation in my son, which explained why my little guy was so frustrated in therapy and couldn’t respond to it in any way.
To quote the neurologist: “at this point, therapy, no matter how good and friendly the SLP is, will only pressure your child, because his whole nervous system is not properly functioning and most of his body is in pain”.
Hadn’t I read that book, I would have never insisted on seeing a neurologist, and my son would have never had his surgery; things would’ve kept going downwards (and trust me, you don’t want to hear about the ‘what ifs’ of him not having his surgery).

Now due to his condition, doctors are avoiding a CAS diagnosis in my son, because they want to give his body and nervous system enough time to heal and get back on track, so it’s a waiting game for us, and a long road to recovery.
But my experience taught me that waiting to get a child assessed and diagnosed by professionals is the worst thing a parent can do for their child, so, if your child is not speaking, or showing signs of speech delay, here’s what I suggest you do immediately:

1. Have a team of an SLP, a developmental pediatrician and a pediatric neurologist work together to assess your child, and investigate possible problems. Teamwork will help rule out medical conditions, and communication between these professionals will ensure an accurate and timely diagnosis.
   – The SLP will assess expressive and receptive language, and identify characteristics of Apraxia or any other speech disorders and any oral motor problems, and suggest best therapy approach;
   – The developmental pediatrician will make sure your child is hitting their developmental milestones, and should test for any behavioral issues (anxiety, selective mutism), autism or global developmental delay or other delays and disorders;
   – The pediatric neurologist should investigate malformations/ abnormalities, tumors, neurological disorders, craniofacial issues, and may also recommend a genetic study to look into the underlying cause of the problem.
2. Get your child checked by an ENT  for tongue-ties and hearing problems; the ENT might refer your child to an Audiologist to check for an Auditory Processing Disorder, if necessary.
3. Speak up to empower SLPs in Ontario by joining the Say it, Hear it, Now campaign.
4. Know that you’re not alone. Look for support groups in your community or on social media portals such as Facebook.
5. NEVER LOSE HOPE. NEVER GIVE UP. NEVER DOUBT YOUR PARENTAL INSTINCTS. Be your child’s voice, be their best advocate.

I hope you find this post  useful, and hope that the struggle to get a proper diagnosis would be put to an end for the sake of children, their parents, our healthcare system and the whole society.