What Causes Childhood Apraxia of Speech and Is It Preventable?

From CASANA

First, it is important for parents to understand that there is most likely nothing that you did to “cause” your child’s speech disability. It is not about how much you talked to your child or whether or not you had them in daycare, for example. Your child does not have apraxia because you separated from your spouse or because you moved to a new city. So while we know that parents have a strong role in healthy child development, unless there was abuse, neglect, or isolation, you are not responsible for causing your child’s speech disorder.

The current knowledge that we have about Childhood Apraxia of Speech (CAS) is this. CAS occurs in the following 3 conditions:

• Neurological impairment caused by infection, illness, or injury, before or after birth or a random abnormality or glitch in fetal development. This category includes children with positive findings on MRI’s of the brain.
• Complex Neurodevelopmental Disorders – We know that CAS can occur as a secondary characteristic of other conditions such as genetic, metabolic, and/or mitochondrial disorders. In this category would be Childhood Apraxia of Speech that occurs with Autism, Fragile X, Galactosemia, some forms of Epilepsy, and Chromosome translocations involving duplications and deletions.
• Idiopathic Speech Disorder (a disorder of “unknown” origin) – with this condition, we currently don’t know “why” the child may have CAS. Children do not have observable neurological abnormalities or easily observed neurodevelopmental conditions.

Parents often ask if their child may have apraxia due to medical complications during pregnancy or childbirth. There are currently no studies that suggest a direct relationship between complications of pregnancy or childbirth and a specific increase in risk for apraxia of speech. For example, an umbilical cord wrapped around the neck of a fetus could theoretically cut off oxygen supply and possibly lead to neurological injury, eventually resulting in a CAS diagnosis. However, such a condition could also NOT result in CAS or even neurological injury. Some children are born just fine even though there was some complication during pregnancy or birth. So, while it is possible that a complication could result in neurological damage that might contribute toward a motor speech disorder like CAS, research has not told us when or how this would occur.

Some speculate that some forms of CAS and other childhood conditions may be a result, in part, of environmental conditions such as exposure to pollutants and toxins before or after birth. Others speculate that nutritional deficits or malabsorbtions cause CAS. We do know that, generally, toxins and nutritional deficits do cause some developmental problems, but to date these theories, as they relate specifically to CAS, are only speculations.

That said, a child’s positive health would contribute to their ability to benefit from their learning exposures and from therapy designed to help them. A child who is healthy is more fully capable of taking advantage of opportunities to learn. Children who are sick frequently with ear and sinus infections, enlarged tonsils and adenoids, asthma, allergies or have sleep disturbances, poor diets, attention and behavioral difficulties are going to find it much more difficult to benefit from the help provided. Helping your child be healthy and thus more “present” to the learning opportunities around them is one way parents can help.

Most likely in the future we will learn that CAS is caused by multiple factors and conditions, not one. To the extent that research evidence becomes available that CAS is caused by some factor(s) that can be manipulated to reduce or eliminate it, will determine whether or not it is preventable. Until then, we do know that appropriate speech therapy provided frequently and in consideration of motor-speech treatment principles offers the single most important opportunity for children with CAS to improve their speech capacity. Children who are able to maintain optimum health will most likely directly benefit the most from appropriate help.

Response to Op.Ed. on Environmental Toxins & Neurodevelopmental Disorders

[Note: This blog article is in response to the February 24, 2010 New York Times Op. Ed by Nicholas Kristof titled, "Do Toxins Cause Autism?"]

By Tesi Kohlenburg

Kristof is on the mark here in so many ways. Philip Landrigan was the keynote speaker at my organization's Fall conference here, and his talk was both fascinating and frightening.

As a pediatrician, as a child psychiatrist, and as a mother, there are a handful of things that I believe we all should do NOW:

1. Stop heating food in plastics. ( And don't put away warm left-overs in plastic containers, either. And don't drink things that have been left sitting in plastic bottles in warm locations like cars. And don't drink soft drinks and juices from plastic bottles -- evidence is beginning to come in that the acids in soda pull chemicals out of the plastic bottles that are themselves promotors of obesity, independent of the calories in the soda. Most of all, don't put baby formula in plastic bottles containing Bisphenol A or other plasticizers.)

See this link for more about obesogens http://www.newsweek.com/id/215179

2. Learn which are the most pesticide-contaminated kinds of fruits and veggies, and either don't buy them, or buy them organic.

• ( Berries, which are so good for us in many ways, are sadly among the worst offenders in terms of pesticide contamination.)

3. Read labels, and reduce or eliminate our exposure to food dyes and preservatives. This means making our family's meals from uncontaminated whole foods, fresh fruits and veggies, meat that hasn't been given hormones, etc... not eating from boxes, bags, and cans full of additives, stabilizers, texturizers etc.

4. Be very careful about disposing of chemicals. Whatever we put in the water goes into our world. See this CBS News report on the contamination of our drinking water with prescription medications: http://www.youtube.com/watch?v=RE7OK9sMDvo

For more resources, visit:
The Environmental Working Group at: http://www.ewg.org/home

OR

The Mount Sinai Children's Environmental Health Center (Dr. Landrigan's center) at:
http://tinyurl.com/c5xnx2 ).

This emerging knowledge can protect all of us and our children from the consequences of exposure to air, water, food and household materials full of newly-invented chemicals, many of which have not been tested, and a good number of which are now being shown to have undesirable effects on our bodies and brains. These chemicals can have powerful effects on fetal development and in early childhood, when all of the cells are differentiating and learning where they belong and how they're supposed to function.

With great concern and also hope that we can change,

Tesi Kohlenburg

[Tesi Kohlenburg is a physician and the parents of a child with apraxia of speech, dyspraxia]

Quiet

Quiet

By Pia Prenevost

Sometimes he is so quiet.

Frequently he is so quiet.

Word attempts are sporadic.

I can never predict when

he might make a sound or word.

He doesn't jabber or babble.

Not to himself, and not to us.

At least, not often.

He is quiet.

Some days I think he wants to communicate.

To talk.

Other days I think he is happy being quiet.

Wordless.

Apraxia………..

by Michelle Genser-Jones

The expressions in your face
Show the words you can not say
Not a fault, of yours nor I,
But of Apraxia,

Unknown to most….
It is not heard, nor seen,
But a Voice it takes

Scared parents…cry…worry
While surrounded by others…
Who just can’t understand

The fate, the destiny of their loved child
Seem unfounded through the endless wait…
With ears constantly ready for that first word
Joyful tears pour out when it’s finally heard

Words…movements… Sounds, may be found
Only to be lost once more,
And re-found at a later date
Dreams only to remain are those shared

Between child and parent
A bond always remains

Is Your Nonverbal Child Safe on the School Bus?

by Sharon Gretz, M.Ed.

[April 14, 2013:  Unfortunately, it keeps occurring.  Today we learn of 3 year old Elliott from Minnesota, who has childhood apraxia of speech, and never made it to school.  His mom thought he was playing and learning but he never made it and when he did not arrive at home on the bus and she called the school, the school said he had not been there. He was found 4 hours later still strapped in the bus in the bus terminal.  We are so grateful that Elliott is safe. Please read the article below and consider what you can do for your child or in your school district to make sure this doesn't happen!]

Two weeks ago we learned of a very disturbing story via the internet about a four year old girl with childhood apraxia of speech who was left unattended and forgotten on her school bus for over three hours. Little blond Ava was unable to yell out for help. Despite school district bus safety policies and procedures, the bus driver allegedly failed to do the seat by seat check that would have located Ava in the rear of the bus. An investigation ensued and shortly thereafter the bus driver resigned.

Ava’s family would like the Apraxia-KIDS community to understand how important it is to ask questions about your school’s bus safety procedures and to ask for a written copy. No one thinks that this can happen to their child, however, on the CASANA facebook page a number of parents are reporting similar stories about their child being placed in unsafe situations. For example, one boy was driven past his bus stop but could not tell the bus driver and was taken back to the school before he was noticed. Another child was crying on his bus but since the school bus driver did not understand his communication, no one knew why or what had happened. And tragically, a similar story occurred a decade ago to another little boy who was left on the bus in the bus garage for hours. On a brighter note, parents on our Facebook page also discussed safety procedures that are in place for their child who is nonverbal or limited verbal.

So the bottom line is this: What can parents to do best protect their child with limited intelligible speech?

1. Make sure that your school district has bus safety procedures in writing and assure that you get a copy of the policy.
2. Inquire about whether your child’s bus driver has had special needs training. Arrange a meeting between school administration and your child’s bus driver to discuss your son or daughter’s communication needs.
3. Include travel safety and transportation details as part of your child’s I.E.P. Transportation is considered a “related service” and so specific transportation details can and should be included when the IEP team has agreed to include transportation for your child. A transportation plan would be a tremendous addition to the IEPs of children who are unintelligible or nonverbal.
4. Communication goals at school and at home should include self protection and self identification goals. Children with communication challenges need a way or need practice with skills such as calling for help (“Help Me”); how to gain someone’s attention (“Hey you!” “Wait!”). These phrases can be incorporated into speech targets or augmentative communication.

Having a child left alone for hours on a bus is easily every parent’s nightmare but is particularly disturbing if the parent is already concerned about a child’s ability to speak out. Careful planning and team work are essential to assure the protection of all, but most of all for the child. 

If you are a parent, do not let your concerns and worries be pushed aside. If you are an educator, be an advocate to make sure that children with no or little speech are kept safe!  For a guide designed for both parents and educators, please read An Overview of Special Education Transportation:A Primer for Parents and Educators.

Every Child Deserves A Voice

by Megan Steinke (originally on Hippymom.com; posted with permission of the author)

Childhood Apraxia of Speech is a motor speech disorder, a neurological disorder where the child cannot plan and coordinate speech movements. Ever have that feeling of a word on the tip of your tongue, but you can’t quite say it? Or slip over a word you knew and could say in your head? Imagine every word you ever tried to say coming out like that – even though you know what they should sound like, the sounds never quite make it from your brain to your mouth the way you want to say them.

CAS isn’t a very well-understood disorder. It’s also not a very common one, which is why resources on it for parents are pretty scarce. If your child is autistic or ADHD, dyslexic, any of the “common” special needs, you will find a wealth of information. If your child is apraxic, you might think he’s ceased to exist in the literary sphere. There are papers written by speech therapy professionals for speech therapy professionals, but to a layman they’re difficult to understand. Even books devoted to speech disorders don’t really cover it. If it weren’t for the Apraxia Kids Network website, I would have feared I was the only one. The website has been a lifesaver, both in terms of scholarly articles as resources, and as relief from the feeling of isolation that this diagnosis can bring.

Getting a diagnosis of CAS is very scary, but my children had been in speech therapy for two and a half years by the time we got it, and though I was terrified for their future, it was at least preferable to not knowing why they weren’t talking. We had been to countless speech therapists, and finally got in to see the pediatric developmental neurologist, who immediately diagnosed both boys as nearly identical cases of apraxia. He thought they were quite textbook and was surprised no one had diagnosed them before. He was fascinated by how alike their apraxia is. Since the causes of CAS are unknown, a set of identical twins with identical apraxia seems to make speech pathologists’ research senses tingle.

It’s a long and arduous process of speech therapies to bring language out of children with apraxia, and it’s emotionally exhausting for the parents. Support groups are invaluable. It’s a relatively rare disorder, however, so the only support you get may be online. There is a local CAS network in my area – in a group of seven cities with a population in the millions, home to the largest naval base in the world, there are nine children diagnosed with CAS. Two of them are mine. It is very isolating to deal with that kind of number.

I am continually having to explain apraxia to people, because it is so unusual and so unknown – even to their teachers. I spend a lot of time fighting for them, to get them the help they need. The cost of speech therapy for two children in the amount needed for CAS would bankrupt us if we went through a private firm, or worse, through the local children’s hospital. When we saw that the cost would be nearly $600 a week per child (and would go up if insurance decided to stop covering it), we knew we had to find other means to get what we needed. The local university has been invaluable to us, as they have a speech therapy program and need clinical patients for their students. My boys have received excellent therapy there, from some truly wonderful young women who put their whole hearts into my children’s care.

“Will my child ever speak normally?”

I stopped filling in my boys’ baby books as they got older and older and that “first word” slot was staring me in the face. One year old. Two years. Three. I wanted to write something down, anything. But their only noise was a monotone “mmmmm”. I wanted that word. I wanted it very badly. My children were three years old before they called me “Ma” for the first time, and for a very long time that was their only word, and I hugged it close to my heart every time they said it. On their fourth birthday, they had three words: Ma, Da, and buh (brother). They were four and a half when they told me – in words, not sign language – that they loved me.

When they were younger, we would watch the Signing Time DVDs, because the handful of signs that they had learned in speech therapy were their only means of communicating. I would listen to the song at the end – “Show Me A Sign” – and cry because the lyrics that Rachel de Azavedo wrote so touched me. They were exactly what I wanted to know from my children, exactly how I felt. I didn’t feel like I knew them sometimes. I just wanted to know that they were in there. They seemed so distant sometimes, though they were always affectionate, and no one ever saw signs of autism in them, something I feared. I always felt uncertain that I knew anything about who they were.

Tell me that you love me
Tell me that you’re thinking of me
Tell me all about the things you’re thinking
Tell me that you’re happy and you love it when we’re laughing
Tell me more, show me a sign.

I know I’m not alone in that feeling. An SLP presenting at the 2004 Apraxia-KIDS conference wrote a poem of sorts to describe it that is broadly similar, particularly emotionally, to the song. And I know the CAS children feel it too.

While visiting a friend recently who has girl twins a year younger than my boys, they played with the girls’ dolls. Dominic put a baby doll in a stroller, wheeled it up to his brother, and said, “I be the mama, you be the doctor, and this is my baby.” Chris agreed, so Dom in his high-pitched ‘mama’ voice said, “Doctor, something wrong with my baby, he don’t talk. Why don’t my baby talk?” It was absolutely heartbreaking, and I still cry to recount it.

It’s been very hard on us over the past four years since we first began to realize that – as Dominic so succinctly put it – something was wrong with my babies, but we are finally starting to see improvement in huge leaps and bounds. They’ve come from a handful of single-word utterances to long and complex sentences with a vocabulary nearly on par for their age level in only a year, though they still have a lot of articulation errors and strangers find them difficult or impossible to understand. I’m at about 60% understanding what they say. It’s a wonderful thing to hear my children talking to each other, or to have one run past and say “I love you so much, Mama!” I had worried I would never hear it. I hope someday I’ll hear it without distortion.