Questions/Answers

You have a terrific website, but I could not find the answer to my question. How can you tell the difference between a child with verbal (not oral) apraxia and one that is a late talker. My son is 25 months old and communicates largely by saying ah, pointing and verbal expressions. He makes lots of sounds and shows no signs of oral apraxia. I'm planning to have him tested by an audiologist and speech therapist this month. Their results will be turned over to a speech development specialist. Before going through all this cycle I'd like to get a better understanding of what sets a late talker apart from a child with verbal apraxia. Do you know? I can't seem to find the answer to this question anywhere.

Thanks,
From California

Answer

Thanks you for bringing up such an excellent question first of all!   I left the late talker vs. apraxia questions to be answered by links and evaluations from experts, however, there are "warning" signs of apraxia that I can point out from a parent's perspective. Even though I'm a parent, like you, because I feel like I had to study for my masters in apraxia in order for my son Tanner to receive appropriate therapy, I forget that it takes time to understand some of the expert's language.

First of all, (from the experts) oral apraxia can be diagnosed as young as 18 months, while most experts believe that it's difficult to get a definite diagnosis of verbal apraxia until the age of 3. You say your son is 25 months with no signs of oral apraxia. This said, it's also believed that if apraxia is "suspected" to begin the appropriate oral motor therapy right away because it won't hurt, and the earlier the better for therapy with apraxia. Even with early intervention, some children with apraxia may always need an alternative way of communicating/to assist communication (sign language, picture exchange communication, computer, etc.) but many will learn how to overcome the apraxia: enough to talk and be understood.

Through Early Intervention (free through your state birth to 3, and through your town's school from 3 up) or through private, insurance, out of pocket, an expert (SLP, OT, developmental ped, neurologist, etc.) will evaluate your child's ability to move his tongue on command, and will "test" his strength in various areas, (physical, language, emotional, social, and intellectual development) all fun ways though with toys, so he'll love it. I recommend that you are in the room with him, I was ALWAYS there with Tanner, for all his evaluations, testing, and therapy, except when he started the preschool disabled program. (We now can watch from a two way mirror when we want) Some therapists want to be alone with the child, some parents feel their child behaves better. I believe that since my husband and I are with him most of the time, we are also so important for "carry through" therapy. For us this has worked the best.

Your child may be a late talker for a number of reasons outside of apraxia. Most likely it is a delay, but like I said, early intervention is a free, federal program your child is entitled to if he qualifies, for whatever the reason for the delay in speech. There is lots of research in to the birth to three brain stimulation, so the "play therapy" your child would receive from early intervention will most likely benefit him for whatever the reason for the delay of speech. If your child just starts talking perfectly a week or a year later...great! And then do you really care what the reason was he was a late talker? Since no large research has been done yet on the neurologically based condition apraxia of "unknown origin," all of us as parents of children with apraxia have questions, but we may not have those questioned answered before our children are teenagers, or adults. Our main goal as CHERAB Foundation is to help all children learn to talk, and we do know what works for teaching a child to communicate, overcome apraxia, reducing frustrations for a "late talker" for whatever the reason, etc.    A few of the late talkers out there do have apraxia, and the fact that your out there researching on the internet shows you are the type of parent who's child is in good hands for whatever the reason he is a "late talker." Knowledge is so powerful in helping us to help them.

Our nonprofit CHERAB email list addresses late talker vs. apraxia, with a focus on medical research, early intervention and education. We have medical, speech and educational professionals on this list from our organization who have volunteered to answer your questions. We also have many other wonderful parents and professionals on this list from all over the world. You may wish to post some some of your questions there.

Here are the "late talker vs. apraxia" or delay vs. disorder signs that I saw/see in my four year old Tanner as he was/is "learning to talk."

Apraxia is a disorder, and it will not self resolve: typical delays of speech will self resolve (meaning even without therapy the child will "learn to talk.") Here is a link that will lead you to "parent friendly" signs of verbal apraxia. Here is a link that will lead you to "parent friendly" signs of oral apraxia.

Question

2. How can you tell the difference between a child that's not talking because he's shy, and one that has apraxia?

'Based on what I have read, I believe my 3 year old son has oral apraxia as
he has many of the symptoms. For the past year he has been in speech therapy and has made some progress. His current speech therapist attributes his speech delay solely to shyness. I know that his shyness is only a small element of his speech delay. Although he is saying many words, his speech is very unclear to anyone outside of the family. He still cannot say any 4 to 5 word sentences confidently. It takes a lot of prompting from me to get him to expand his speech.

Recently he was tested to see if he qualifies for the school district's preschool speech therapy program. During the assessment I asked the
speech therapist for her impressions. She said she thinks (our son) has poor oral motor planning, but would have to consult (our son's) current speech therapist for confirmation of this diagnosis.

The IEP for (our son) is scheduled for next Friday and I'm extremely nervous
about what they will propose for therapy. From what I have read, working
individually with a speech therapist is most effective. I know they are
going to push for him to be in a small group preschool format. Obviously I
will fight for what is best for (our son) . How often did Tanner meet with his
speech therapist?

I am thankful to have found your website. Any additional information on
Tanner's therapy that you can give me will be greatly appreciated. Please
add me to your e-mail list. I would like to watch the Inside Edition
T.V.'s segment on apraxia and The Children's Apraxia Network. Thanks!"

Answer

The fact that you are continuing to learn more is wonderful. Keep up the great work! We always say late talker vs. apraxia, but now we have with
(your son) "shy vs. apraxia!" I believe this is an easy one to answer!

About the diagnosis of apraxia, according to that experts, it's difficult to give a definite diagnosis of verbal apraxia until the age of 3, (your son's) age. Oral apraxia, which you say Kevin shows signs of, on the other hand, can be diagnosed as young as 18 months.

My son Tanner used to seem or be shy because he was dependent on people he felt comfortable with to communicate for him, or understand him, but that "shy" behavior disappeared as we provided alternative means of
communication. I didn't think of it as much as shy as I did dependency.
His speech disorder didn't go away when his shyness did. In other words,
shy or not shy, Tanner has a speech disorder. Also, does (your son) speak
clearly in front of anyone? Like you or your husband, his mom or dad? Does
(your son) ever, or frequently speak in clear sentences at home, or anywhere? If so, then perhaps your therapist is correct. If not, to help with any shyness/dependency, have you tried Picture Exchange Communication? That would be where (your son) points to a picture of a juice box vs. a cup when you ask him what he wants his juice in for example. You can do this for
breakfast choices, anything! Also, let (your son) know that "everybody has to learn to talk." It's true, your just leaving out the details!

Even though (your son) is showing improvement, which is great, it concerns me that (your son's) therapist believes that his lack of speech, and his
unintelligibility, is from shyness, and yet he is showing signs of oral
apraxia. Again, oral apraxia is something that could be diagnosed as young
as 18 months. Apraxia is neurologically based, and it is not a psychological disorder. Even though children can develop low self esteems from communication challenges, (your son) is still so young to know for sure that
what he is going through is not normal. If he does have shyness issues that
affect his speech, then that's an issue you can deal with in simple ways.
But I would highly recommend that you seek a second opinion from an SLP that is knowledgeable about apraxia and other motor planning disorders.

In addition to oral apraxia, it's not uncommon for apraxic children to have
other issues (Don't freak out-treatable ones) like low tone/hypotonia which
looks like the cherub baby, or sensory integration issues. He's at an age
where you may start to notice these other added surprises and it's good to
know what they are so that you can help Kevin if he has either. But while
your getting second opinions on the "shy vs. apraxia" situation, these are
other things to ask about.

About sentences. With Tanner, at 2.8 he was in therapy 2 to 3x a week for 5 months at that point working on basic sounds, and he couldn't even put "ch" together with "oo." When he was 3 years old, (your son's) age, he had a surge and was up to 20 or so words! But they were all pretty simple words, and he wasn't up to even 2 word sentences. Tanner turned 4 this past June, and he is talking in 2 to 8 word sentences now that are understandable to anyone.

The reason I am telling you this is because if (your son) does has apraxia, I
would let the experts on apraxia guide him to longer sentences when he is
ready. Tanner's therapist had a great example of how many words in a
sentence Tanner was capable of saying.

This is something you could try:
Buy 2 blow horns, and you blow into one and give the other to (your son).
Imitate (in a fun way) each other's toots. Let him take the lead, then you
take the lead. If (your son) can't imitate 3 or 4 toots of a horn, he is not
ready for 3 or 4 word sentences yet. It has to do with breath control. (this response then went into IEP concerns for school, which I believe is covered in this next question.)

3. Is it appropriate to ask for 5x a week, one on one therapy for a nonverbal 10 year old?

"We have a 10 year old son that is completely non-verbal. He has been getting speech therapy since he was 3, although not very intense. Would it be unreasonable to ask for half hour a day, 5 days a week from the school?"

Answer

There are so many unknowns to directly answer your question. For example, has your son ever had a diagnosis that explains why he is nonverbal? If so, who diagnosed him, and when? Was he ever diagnosed or misdiagnosed as having cognitive issues/autistic/mentally retardation, etc.? Have you taken him privately to a developmental pediatrician, neurologist or speech and language pathologist that is knowledgeable about apraxia and other disorders? Does you child use picture exchange communication, sign language, or augmentative devices to communicate now? Is he mainstreamed, and if so, how does he perform in school both academically and socially? Does he play appropriately, with friends, or alone?

Your son's school is required to provide him with appropriate therapy,
either in district or out of district. They aren't necessarily going to
tell you this of course. What this means is that once you know what your
child requires (even if that is 5 days a week, intensive one on one
"appropriate" therapy) if that's what experts evaluate that he needs (again,
seek diagnosis and therapy outside the school) because of his diagnosis,
then they need to provide "appropriate" therapy. If they can't within their
own program, then they are required by law to find alternative situations.
Again, this can include paying for you to take your son to an outside
therapist, paying for an expert to work with your son in the school and give
direction to the school based SLP to follow, or even out of district
placement. This means of course that a private school could be paid for by
your school system if they are not providing appropriate therapy.

Of course your son's school system will most likely say they are providing
him with appropriate therapy, have done so for the past 7 years, and that he is not responding. If however, your child is severe apraxic, the type of
therapy he has received does not sound appropriate according to the experts, but without knowing what his reason is for being nonverbal, or what therapy he receives, that's hard to say. This is again why it's so important to have some experts outside of the school overseeing your child, It's important to have a hero for your child on the outside of the school, especially since your child is 10 years old and non verbal.

These same "outside the school" experts on apraxia and other disorders,
(developmental pediatrician, neurologist, SLP, OT, etc.) can diagnosis the
reason for him being nonverbal, watch over your child, provide therapy as
often as you can afford, and make sure your child is meeting the IEP
(individual education program) goals that he/she helped to set. I believe
you will need to pay for these second opinions or therapy sessions
(hopefully through your insurance,) because if they are on the school's
salary, I don't believe results are always going to be unbiased, which is
what your child deserves/needs. Know that you can have it written into the
IEP that you want evaluations (from now on) every 3 weeks, 2 months, 6
months, whatever your son's (private) therapist believes is necessary. Many
people, like me and my husband, thought IEPs are yearly, they are contracts
between the school and you and your child. Just like any contract, it's
negotionable. In your child's case, you've given the school 7 years to
help, and perhaps they have done "everything that is appropriate," but why
wait another day if they are not.

Again, it's a federal law that they are required to provide your child with
appropriate therapy. And also again, please find out what that appropriate
therapy is for your child from outside experts, and then fight to have them
offer that to him. Of course you can use information found on the internet,
but that's once you have a diagnosis. Squeaky wheels do get the grease!
It's good to look into other town's programs, out of district, or paying for
your private therapy. I noticed some of the responses to your question from
other parents said their child's therapist was only in the school for 2 days
a week, so they couldn't receive any more therapy. If you show they are not
providing appropriate therapy, then you can have them pay for your private
therapy sessions, or pay for your private therapist, or another expert on
apraxia, to come to your son's school as a consultant once or more a week.
With some creativity and willingness, things can be worked out in most cases
without having to go to a special ed attorney (another option of course.)

If your school tells you things that make you uncomfortable or that you
believe are not accurate, tell them, "That's interesting. Could you put
that in writing for me?" (For example if they say they can't provide more
than two or three days of therapy a week) Also know that you don't need to sign the IEP right away. You can take it home and show it to others, even
before that, you can take others with you to the IEP meeting, including your
child's private SLP, or a parent advocate, or even a tape recorder!

Use the severity/Intervention matrix link found as a link on our website-
and if your son is apraxic, the page and links which show the importance of one on one therapy for apraxia stated by various experts-one after another, there are also numerous links to other sites which have a wealth of information if your child is apraxic.

You are an expert on your child, and you can back that up with your
knowledge/experts on apraxia, or whatever the reason your child is
nonverbal. Together, you are a powerful team that will find appropriate
therapy for your child. Have you seen "Ask the Dr.?" Dr. Agin is
brilliant, and can probably help as well.

4. What are some strategies to help my child deal with his frustration due to speech challenges?

" My son Gabriel, who is now three, has been recently diagnosed with apraxia. He has improved drastically over the last three-four months. But he gets frustrated very easily. The harder he tries to say something, the more scrambled the words come out. I
don't know what to say or do to help him, help me understand. what are some at home activities that we can do to help him? During the week I only get to spend about
three hours with him before he goes to bed and I want to make it count. Also,how can I go about finding a speech therapist in the Houston area that specializes in apraxia?"

As far as a therapist in Houston that specializes with apraxia, have you checked with ASHA? We have their link at our site as well. If you still can't find someone, and nobody emails you with names, let me know.

Question

5. Are all late talkers apraxic?

" You mention that both your sons were "late talkers", but had apraxia. I
thought there was a difference, meaning some kids are late talkers, but do
not have apraxia. Did I misinterpret?"

Answer

Sorry if our story is so confusing, but I hope this explanation will clear things up.

The easy answer is yes, a child can be a late talker and not have apraxia. But because you brought up my two "late talking" kids, we go to the tough question! The pediatric neurologist diagnosed our older son, Dakota, with oral apraxia at 2, but Dakota never had oral or verbal apraxia in the way our son Tanner does. Dakota's "apraxia" was used as a symptom (like if you
look up the word apraxia in the dictionary and use it as a definition to
describe what is happening. Loss of ability to...) The word apraxia was
used for Tanner as a diagnosis. Tanner has oral and verbal apraxia.

Up to now there are so many names for apraxia - the neurological based
disorder we are talking about when we say "Children's Apraxia Network" for
example, names such as dyspraxia, verbal apraxia, oral apraxia,
developmental apraxia, global apraxia, limb apraxia, oral motor disorder,
etc. and because the speech and medical community are not always on the same
page, names are used by professionals that are very confusing, or that even
conflict at times. Some neurologists are knowledgeable about apraxia, and
some are not, some are knowledgeable about apraxia, but use other names to
describe it. I'll explain.

Tanner was diagnosed as severe oral and verbal apraxic by various SLPs, and by Dr. Marilyn Agin, however the same pediatric neurologist who wrote in an evaluation that Dakota has "oral apraxia,"diagnosed Tanner as having a "phonological motor processing disorder which effects motor planning and
speech." You see, this neurologist used the term "apraxia" as a symptom
rather than a diagnosis since in his medical opinion the diagnosis "apraxia"
was not clear. "Apraxia of what? The limbs, the eyes, it's to vague a
term!" is what he said to me in a frustrated way. "I don't like this name
apraxia, it's to vague!," he also said. So even though this neurologist
knew Tanner was diagnosed as having oral and verbal apraxia by many other speech professionals, and by a medical professional, and even though he understood what apraxia was, he still did not want to use the term "apraxia" to diagnose Tanner. He preferred the diagnosis "phonological motor processing disorder," but if you run that past some SLPs, some will say that means something different than apraxia!

Since Dakota, our older son had "facial palsy" from crushed facial nerves,
among other things, from a traumatic delivery, it created "oral apraxia" but
this was describing the action of the nerve damage, not diagnosing him as
being oral apraxic. It's complicated, but yes, even though both our sons
had oral apraxia, only Tanner has apraxia, the neurologically based speech
disorder of unknown origin. So for all of you with one child with apraxia
trying to explain this to family and friends, imagine us! Thank God that
Dakota today is mainstreamed and getting top grades in school! We just
can't wait until Tanner makes it out of the woods as well at some point.

Once again though, our situation is unique and isn't the best example of two
typical "late talkers." One was a late talker from birth trauma, and one
was a late talker from apraxia, but they both were described as having
apraxia. The average late talker does NOT have apraxia. Apraxia is not
rare, but it's not that common either.

Question

6. Is there an association between apraxia and mental retardation?

"Hi! My name is Candace and my three year old son has apraxia. I have a few questions for anyone who is familiar with this language disorder. First, Is
there an association with apraxia and mental retardation? I asked a professional what they did 25 years or so ago with children who were late talkers and she said alot of them were labeled mentally retarded. Also, she said the an IQ test is based so heavily on language development. What are your thoughts? Second, people say that when my son does use his words ( which is the approx. of 20) that he sounds like a deaf child. Although my son had alot of sinus infections, he did pass a hearing test. He has no high and low pitches to his voice and he mostly picks up the vowels. Is this typical with apraxia kids? Third question, my son also babbles like a baby at times. When we are out in public, people tend to look at him. What do I do?"

Answer

I'm sure you will receive many responses to your excellent questions, but I wanted to address some of your questions right away that I have the ability to even though I'm a parent, not a professional. (This is because of my e-degree, and life degree in apraxia research!)

Children with apraxia have been MISdiagnosed as mentally retarded and autistic for far to long. Our oral motor specialist, Lori Roth, MS CCC-SLP states it best, "It's criminal!"

A child can have apraxia and have normal or brilliant intelligence, from what I've read, seen, and heard, most do. Just so you know however, a child COULD have apraxia and other issues, such as apraxia and mental retardation, or apraxia and autism, or apraxia and cerebral palsy, or apraxia and downs, etc. (Just like they could have a broken leg and autism) This is why it's so important to bring your child to developmental pediatricians, or/and neurologists who are knowledgeable about apraxia as well as other issues. Don't let anyone treat or educate your child as having cognitive challenges unless you know for a fact he does. And don't leave it up to your child's school to "find out" and classify him or her as mentally retarded. Find out by having your child privately evaluated by a medical authority, or two, that you respect, and who has experience and knowledge of apraxia and other issues.

Careful of "receptive" language evaluations on written reports. Your child can have a severe expressive delay, but if they write a "severe expressive and receptive delay" it means something different. That's a red flag that there could be cognitive challenges going on. It translates (in parent language) to "Your talking to this child, but there is nobody home." If that's the case, again, see a medical professional, but if that's not the case, your child does understand and can follow simple commands, these are the first baby steps to misclassifying apraxic children. Take it seriously and find out privately.

Don't just depend on one diagnosis, especially since many apraxic children have been misclassified or misdiagnosed. This is one of the reasons we so highly recommend Dr. Marilyn Agin, because she has the background of an SLP, but is now a developmental pediatrician who specializes in autism and apraxia. She does lectures to medical and other professional communities about these issues and others, and tries to raise awareness so that apraxic children will no longer be misdiagnosed, and will receive the appropriate therapy and early intervention. On top of that, Dr. Agin is the Medical Director for Early Intervention for New York City, the largest of it's kind in the USA. Dr. Agin states that since so many apraxic children are intelligent and know they aren't being understood, some tend to withdraw, and be misdiagnosed as autistic. Her information is at our website under "Ask The Doctor."

Again, apraxic children can be brilliant and misdiagnosed or misclassified. What's fortunate is because of the internet you can speak with the children who have grown up with apraxia or their parents to prove this point.

The way apraxic children speak varies. You can listen to various apraxic children at "The Talking Page" and you will find that link at our site as well. Our son Tanner used to sound deaf when he spoke, but what's funny is that now that he goes to a school for the hearing impaired and deaf, he no longer sounds like he's deaf, and he has many inflections when he talks, or sings! Lori Roth, who has worked with both many deaf as well as apraxic children believes that they both may learn to speak in similar ways, which is why so many apraxic children have done well in schools for the deaf or hearing impaired. It's something to look into anyway. Dr. Agin can explain why apraxic children sometimes sound deaf from a medical aspect as well.

As far as people looking at your son when he babbles, I know how you feel! Tanner is a big kid, so even when he was only 3 he looked 4, and now at 4 and a half he looks like he's at least 5 or 6. At three he had only a few simple sounds or words. He went through the "babbling" stage after three too. His SLPs say that is typical, and a good thing, since it's an important stage in language development that our apraxic children either miss, or don't fully go through when younger. Apraxic children typically go through most of the "normal" stages of language development if they are getting appropriate therapy, but just LOTS slower and later than a typical "late talker" that is not apraxic. Today Tanner talks "like a baby" using 3 to 5 word sentences, and not only are we all proud of him, but he's proud of himself! We don't want to lose that healthy self confidence, so if he doesn't notice any strange looks cast his way, I ignore them. But if these people say anything, or Tanner notices them staring at him, I use my now classic, "He's learning to talk, and he's doing great!" Works like a charm! Also read "What's wrong with him?" at our site, it's pretty funny.

Lisa Geng, President of both nonprofits, CHERAB Foundation, and Children's Apraxia Network

If you have questions you believe need to be answered on the site, please send them on. Please state if you want a parent, or a professional's perspective.