Silence is not always golden.
Daddy. Mommy. Every parent of a newborn child is basically just waiting to hear these words babbled for the first time. Those incoherent, first mispronunciations give us hope that our child will be brilliant and eloquent. After all, they started talking so much earlier than Bob’s little brat did right? Our minds are filled with dreams of the ambitions and accomplishments that our little miracles will fulfill in their lives. And we smile. We celebrate. We call our family and tell them all about it.
It’s not until the endless strings of “why?”, “how?”, and “Daddy, daddy, daddy. Daddy!” That we start to wonder what we were thinking ever teaching them this skill.
However, for a select group of people this is not a reality they share. These people long to hear their child talk, more than anything in the world. They will accept any word, missing any portion of that word, that’s somewhat intelligible to their well-honed ears. Even if they can only make it out in context they will take it. These few people have had to wait much longer than you have. Years rather than months have passed. They have celebrated birthdays while their child sits mute in a group of screaming kids.
That silence reflects the quiet pain that having a child with Apraxia of Speech brings into a family. The worry about their future and the heartbreaking silence of not hearing those simple words. “Mommy.”,” Daddy.” This is their reality. It’s not something that gets a lot of attention. There are only a handful of fundraisers or marches and only a tiny portion of the population to attend them. No hero doctors blazing a path towards a cure. Just simple, sad quiet. Just worry and fear.
For the longest time my wife and I thought our child was just a “late talker”. We spent hours coming over pages from Dr. Google and convincing ourselves that it was not that uncommon for an 18 month old to not be speaking. We were in denial of course – me more than anyone.
My wife, however, was more cautious, and thankfully so. She convinced me that we should take our child to a speech pathologist for the next few months, just to see if it could help. I reluctantly agreed and we took him in shortly thereafter.
Six months later, when no progress had been made my hope was fading. I knew something was wrong at this point. I just didn’t know what. Over the next 3 months we searched out a new Speech pathologist believing that perhaps putting the problem in front of fresh eyes would help.
How do you know it’s Apraxia
During the first session with the new pathologist she put a name to the problem – Apraxia. I had never heard of it
before but I felt like I was a step closer to learning who my enemy was. For the next few sessions she did several diagnostic tests and finally confirmed that our child did indeed suffer from Apraxia of speech.
Suffer, I believe, is the right word here. This disorder is not a paralysis of the mouth, jaw or tongue, there are no muscles to strengthen, and it’s not a sign of them being slow to learn. Childhood Apraxia of Speech (CAS) is simply their brain being unable to send the proper signals to the mouth to create the movements involved in speaking. Our child knew what he wanted to say, was trying to say it, but his body was holding his words prisoner.
Could you imagine wanting to speak for over a year, having questions, wanting to be part of conversations around you and having to sit mute the entire time, no matter what you did? Imagine being hurt and unable to communicate what happened, or where the pain was. Imagine being hungry or thirsty and not being able to tell anyone. Yes, suffer is the right word.
There are multiple signs that a child may have CAS, but it is always recommended to go to a qualified speech pathologist that has experience with the disorder. If you notice that you child didn’t coo or babble often as an infant, is delayed in speaking, has difficulty eating(including latching on, which was a problem with our son) it’s a good idea to make the appointment. For more information on the symptoms of Childhood Apraxia of speech you can visit the American Speech-Language-Hearing Association.
Causes and Treatments
It’s not always clear what causes CAS, but some possible causes would be a brain injury or stroke, or a genetic disorder. All that is really known right now is that there is a signal disruption between the brain and mouth. This means that children will not learn sounds in the normal patterns and without treatment will not make significant progress.
A person does not “grow out of” Apraxia and without proper and intensive treatment their speech will not improve. This is a lifelong affliction and does not go away on its own. If you child has Apraxia, he or she always will.
There is a silver lining to that rather black cloud, though. There are treatments available. A speech pathologist is always the best person to assist with treatment, but parents need to be highly involved as well. You need to speak with your child and point out how their mouths should move. Letting them speak in front of a mirror helps as they can see the movements their mouth is making as opposed to yours.
Your speech pathologist will go over exercises you can do with your child to help them develop the coordination of tongue, jaw and mouth to help them overcome CAS. A few of the simpler exercises would include using alliteration to emphasize a sound that your child hasn’t learned yet (Ex. The busy bee buzzed by), reading to them and singing repetitive songs like the wheels on the bus with them.
How do I communicate with my child?
The first thing to remember if you have a child with Apraxia of Speech is that he is not broken. He learns at a normal rate, and understands far more than you would expect. He’s been listening for his entire life, so it stands to reason he hears more than children that learn to speak at a normal age. His cognition isn’t damaged, just his ability to express himself. So you can communicate as normal, but may want to exaggerate the movements of your mouth and tongue so that the child can see how his should be moving.
Getting him to communicate with you is a different story. All of their thoughts are locked behind a wall of silence and there’s not much that you can do to break it down. We had success with sign language. Even very young children are receptive to it and it’s possible even children without CAS can learn it quicker than vocal speech.
Slightly after our child turn 1 1/2 years old we began teaching him sign language. Quite a feat considering neither of us
knew sign language at the time. It was a huge contributor to us being able communicate with our son. He could tell us if he was hungry, thirsty, cold, hot or just wanted to play, among several other things. Sign language gave him a voice for the first time in his life. There’s a great post for people looking to start teaching their baby sign language at BabySignLanguage.com
Can my child be normal?
Yes! As a matter fact, if your child doesn’t have compounding issues affecting his cognition or physical performance there’s a chance that, with intervention, others won’t even know he had a speech problem. With treatment his speaking abilities could improve even to the point where he attains normal adult speech. It is possible to overcome this disorder with diligence and hard work.
My family was extremely lucky. Our son had a very mild form of Childhood Apraxia of Speech and finally we heard him speak his first words, just shy of his second birthday. It wasn’t mommy or daddy – those would take more time. It wasn’t drink, or cup, or bottle or any of the normal first words you hear.
I will never forget sitting in the recliner holding him, talking to him as I had so many nights before when I heard something that sounded very much like a recognizable word. I kept talking to him and the word came weakly out of his mouth again. This tiny voice breaking through a two year long silence said “please”. I called my wife into the room and we celebrated like we had just won the lottery. Since then we have continued treatment, or intervention as some call it, and he has progressed very well.
Now at nearly three he doesn’t stop talking. I won’t pretend that I understand everything that he says and at times I can tell he still gets frustrated with not being able to make the proper sounds come out. He has moved forward to a point, though, where he is not impeded in getting his point across. He can tell us when he wants to play and how, what he would like to eat or drink, it he doesn’t feel good and pretty much all the other things you would expect from a young boy.
It is possible to beat CAS. All you can do is try your hardest to make sure your child is one of the ones that does it.
What to expect from treatment
Not miracles. Although, if your child has Childhood Apraxia of Speech every sound and word he or she utters may be a miracle to you. The progress will be slow and the process will be a long one, but there is good news! The more sounds that your child learns to make the easier it will be to expand their vocabulary. A lot of what you hear will be unrecognizable to you, but don’t get discouraged! Every time they make a new sound, even if you have no idea what they’re trying to say, they are that much closer to speaking.
For example when my son said “please” it actually came out more as “eez”. Rather than trying to force the “pl” sound out of him we built on the sound that he could make. He loves cheese, so every time he wanted cheese he had to say “cheese” as the sounds were very close. Over time we added: me, see, teeth, feet, and knee. The sounds at first were indistinct but once he started learning more consonant sounds he started to fill in the blank.
The idea, when working with a child that has Apraxia of Speech, is to work with what they give you and build on it. It takes time, but after a few months you will reach what I call the “snowball effect.” This is like a tipping point where they know enough sounds to start imitating you in earnest. Your work is not done at this point, though, it actually gets more intense.
Working with your child
Once your child starts actively imitating you it’s important that when he or she says a word you’re unsure of, you try to figure it out. Don’t push them to the point that they refuse to use the word, but try to figure it out and if you can, show them with your mouth how to say the word. It might help to do this in front of a mirror.
You need to be more proactive at this point to help them build more and more vocabulary and make sure you emphasize every new sound they make. Rhyming and alliteration are great ways to do this as it shows the child that the sounds are very similar and pushes them to explore the subtle differences between them.
Growing up with Childhood Apraxia of Speech
Your child will always have Apraxia. Diligence and hard work can help them develop normal speaking abilities, but they will always have trouble with new sounds and lengthy words. It’s important for a child with Apraxia to know that you are available to work with them and that they can overcome this disorder.
The level of normal speech that a child will attain is largely dependent on the child himself. According to Apraxia-kids.org, however, there is no scientific data to show which children could attain normal speech or how many do so. It is more common for children without accompanying conditions to attain normal speech and even more so in children with moderate Apraxia of Speech.
Examples of accompanying conditions would be cognitive impairment, Dyspraxi or Global Apraxia (This post from Apraxia Momma Bear talks about the differences between Dyspraxia and Global Apraxia) or speech impediments such as partial paralysis, cleft lip or pallet.
The response time to treatment of the disorder is also telling as to which children will attain normal adult speech.
Discouragement and overcoming
It is common to become disheartened or even discouraged as parents of a child with any sort of disability. But it is also your responsibility to show your child that he can overcome this adversity. No matter your level of discouragement, it’s your job to make sure that he or she does not become discouraged as well. There are millions of people all around the world who have attained high levels of success and had fulfilling lives that cannot speak a single word. Sign language is always an option and who knows what medical marvels will come about during your child’s life?
You, as a parent, have to be steadfast in your belief that your child will overcome the difficulties of Apraxia in order for them to believe it. Do not get discouraged or demand more of them than they can give. You must be understanding and work with them, but make sure they do not use CAS as a crutch later in life to be able to think “I can’t do this.”
Make sure they know there is no obstacle that cannot be overcome, worked around or broken through.
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