I can recall the moment as if it was yesterday. As I cradled my newborn baby boy in my arms, I couldn’t help but think how lucky I was that he had arrived safely in the world. He was perfect. After three tragic, unexplained miscarriages, we had escaped completely unscathed. Or had we?
I didn’t know it yet, but in the next two years, my husband and I would begin a new battle. This time, it was against something we, and many others, knew very little about: Childhood Apraxia of Speech.
Childhood Apraxia of Speech (or CAS) is a rare and severe motor speech disorder that affects the planning, sequencing, and execution of speech. Children with CAS have problems saying words, sounds, and syllables. Think of it like this: you’re driving along the highway at full speed and a sudden traffic jam causes you to stop dead in your tracks. That’s Childhood Apraxia of Speech.
Your brain knows what it wants to say, but the wires get crossed, causing a disconnection between the brain and the mouth. It is believed to be neurological in nature and is not caused by muscle weakness, paralysis, or limited range of motion.
My husband and I had a feeling something was not as it should be in the speech department when Matthew was as young as 8 months old. He just didn’t coo and babble as other kids did. He would swat and bat at his toys in complete silence. The occasional laugh would escape his lips, but we never heard that lovely “imaginary” language that babies invent.
By the time he hit age 2 and still wasn’t saying “ma-ma,” we knew we had to get the doctor involved. Something wasn’t right and I felt it deep in the pit of my stomach. When would I ever get to hear my boy’s sweet little voice? Would he be starting school and still not talking? What would his future look like? The unknowns and “what-ifs” were overwhelmingly scary.
For all of you who have speech concerns, here is a list of important lessons I have learned during our apraxia journey. Perhaps they will help you realize you are not alone. There is a whole community of parents out there who struggle with the challenges of this puzzling speech disorder and others like it, every day -- just waiting for their little ones to break the silence.
7 What Causes Apraxia?
It’s important to note that nothing YOU did caused your child’s speech delay. This was a hard lesson for my husband and me to learn. After all the pregnancy losses we experienced, I had to work hard to push back feelings of guilt and the thought that maybe there was something “wrong” with me. My child did not have apraxia because I had a few stressful days at work or had a bad cold during my pregnancy.
This Is What We Do Know
Apraxia is believed to be caused by:
- Neurological impairment caused by injury before or after birth, or a random abnormality or glitch in fetal development. This includes children with positive findings on MRIs of the brain.
- Complex neurodevelopmental disorders. CAS can occur as a secondary characteristic of other conditions, such as genetic, mitochondrial, or metabolic disorders. For example, CAS occurring with autism or Fragile X Syndrome.
- Idiopathic speech disorder. With this condition, the origins of CAS are unknown. Children do not have observable neurological abnormalities.
6 Children with Apraxia Will Not Just “Grow Out of It”
“Boys are late talkers.” If I had a penny for every time I heard this saying, the high costs of private speech therapy would never have been an issue. Yes, boys are known to lag a bit in the speech department, compared to girls. Are girls just more mature for everything? But if your little ones are not hitting certain speech and language milestones, it’s something you should keep an eye on.
There are mild, moderate and severe forms of apraxia. In severe cases, children can be 11 or 12 and still have major speech difficulties. It often takes frequent and intensive speech therapy to help children get to a point where their speech is intelligible. Children with true apraxia simply won’t “grow out of it.” It doesn’t work that way with this disorder.
The longer it’s left, the longer that child will go without help if it is something more than just a minor speech delay. My goal was to get Matthew in speech therapy as soon as possible, so he would (hopefully) be well on his way by the time he entered kindergarten.
5 Learn the Telltale Signs of Apraxia
If your child is anything like mine, it will probably be pretty apparent when he/she is not meeting appropriate speech milestones. Here’s a glance at what a “typical” child’s development looks like:
By 12-Months-Old, Your Baby Should:
- Combine lots of sounds though talking
- Get your attention using sounds
By 18-Months-Old, Your Baby Should:
- Make at least four consonant sounds
- Respond with words or gestures to simple questions
By 24-Months-Old, Your Baby Should:
- Use 100 words or more
- Use at least two pronouns
- Combine two or more words in a sentence (Ex. “Daddy work”)
- “Read” to stuffed animals or toys
By 30-Months-Old, Your Baby Should:
- Use more than 350 words
- Make short sentences
- Use action words
- Use some adult grammar (Ex. “I fell”)
Keep in mind that every child is different, and he/she may not hit every single goal on this list. If your child is way off the charts, though, it is worth looking into. My little guy was barely meeting any of his speech and language goals, and it became most apparent when he was in a group of kids his own age. Then I really noticed the difference.
Some of the signs of Childhood Apraxia of Speech (including non-speech “soft” signs) are:
- Lack of babbling and cooing as an infant
- Inconsistent errors
- Loss of previously produced words
- Vowel errors/distortions
- Feeding difficulties that include problems with textures and choking on food
- Delays with fine and/or gross motor skills
Only a qualified speech and language pathologist can diagnose apraxia, so getting an accurate diagnosis is crucial. Sometimes neurologists can also aid in the diagnosis if an MRI detects positive findings.
4 Advocate for Your Child
I can’t express the importance of this enough. If you feel something is not right with your child’s development, don’t hold back. Tell the doctor your concerns, and if he/she will not listen, take your concerns to another medical professional who will listen to you.
My husband and I are blessed to have a wonderful family physician who acted quickly on our behalf. She took our concerns seriously and put a referral in for Matthew to receive government-funded speech therapy right away. When your child has no voice, you must be his/her voice. Stand up for your child, because with a speech disorder like apraxia, early intervention is very important.
3 Sometimes Private Therapy Is the Way to Go
Even though my family doctor recognized the need for Matthew to receive speech therapy, the wait lists in Ontario are very long for government-funded healthcare. It took almost six months before we could even get a consultation with a speech therapist. In the meantime, we had to do what many other parents have done before us: suck it up and pay for private speech therapy.
At a steep rate of $75 for a 25-minute session, this was a costly venture. But we saw no other choice. Sometimes, children with apraxia need several sessions of speech therapy a week.
We did two speech sessions a week for close to a year and then tapered off to one once the government-funded therapy kicked in. This was mainly due to cost. We heard horror stories of parents having to remortgage their homes to pay for their children’s speech therapy costs. At the end of the day, we were willing to do whatever it took to give our boy the best life possible and did speech therapy for 2 long years.
2 Just Eat Solid Foods…Please!
One of the most frustrating aspects of our apraxia journey that has not resolved itself has been feeding difficulties. You’ve heard of picky children—this is pickiness at its extreme. Food textures cause my boy a great deal of stress, even at almost 5-years-old. As a rule, he does not mix textures, so the food has to be either crunchy or completely smooth, with no sign of a chunk. If he spots a “chunk” in his food, he will spit it out and refuse to eat it.
A child with oral-motor disorders like apraxia can have trouble controlling the tongue and jaw muscles, making tasks like drinking from a straw, blowing bubbles, and sucking difficult. Children with apraxia can have major texture aversions and sensitivities.
Children with hypersensitivities may:
- Drool a lot beyond the teething stage
- Have the constant need to chew or bite on something
- Avoid certain textures in foods
- Pocket food in their cheeks
- Love and crave intense flavours
As a mom, this has been very hard to deal with because Matthew’s diet is so limited. He is still not eating typical kid fare, like pizza, burgers, pancakes, chicken nuggets, etc. He misses out on his elementary school’s pizza day every Wednesday because the thought of combining all of those different textures disgusts him.
This makes eating out in restaurants almost impossible. I take my own food everywhere we go – even to birthday parties. The older he gets, the harder it is to explain why a child who is almost 5 still wants blended pureed soup for dinner.
Some of the therapies used to help children with these kinds of feeding difficulties include intensive work with occupational therapists. Matthew has seen two different feeding therapists in the last few years and their strategies did help him to introduce a few new foods into his diet.
1 Childhood Apraxia of Speech Can Be Misdiagnosed
It is believed that roughly 75% of apraxia cases are misdiagnosed. It’s important to note that not every child with speech delays has Childhood Apraxia of Speech. Apraxia is listed as a rare disorder, occurring in 1-2 children per 1,000. Studies show the disorder seems to affect boys more than girls. Before CAS can be diagnosed, several factors must be taken into consideration.
First and foremost, the age of the child must be considered. Speech and language pathologists are usually hesitant to diagnose CAS before the age of 3. This is because other less severe speech disorders, such as articulation and phonological disorders, can mimic some of the same symptoms as apraxia. A lot can change in a child’s life between the ages of 1 and 3.
Diagnosing apraxia can be a tricky business. There is no one agreed-upon tool within the field to make a diagnosis. Speech and language pathologists and neurologists will take into consideration red flags, such as limited intonation, lack of babbling as an infant, and feeding difficulties, when building a case for apraxia.
Conquering with Therapy
Regardless of whether your child has a phonological disorder or CAS, therapy will still be needed. A child suspected to have CAS should be treated as though they have the disorder, even without a diagnosis.
Our journey with apraxia has been far from easy but has had a fairy-tale ending. Several years of intensive speech therapy helped my little guy become one of the most talkative kids in his kindergarten class. This was always my fear. Would he have friends? Would they ostracize him because he could not talk? Being proactive and taking concerns to our family doctor early helped ensure Matthew was well on his way.