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Apraxia what's that?

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Editorial Opinion
"Work With Your Child"  
By Lisa and Glenn Geng

I know you have heard this statement before, and if you didn’t, you will, many times.  It is always important to "work" with your child even if he or she does not have any challenges, but even more so if they do, especially the first 5 or 6 years of their life while their brain is still developing.  The experts state that if you have a child diagnosed with apraxia, it is beneficial to spend as much time as possible, playing, reading, laughing, and “working” with your child one on one.  Even though there isn't a lot of research on apraxia, the benefits of one on one for learning with apraxia are already known.   But even if a child doesn't have apraxia, there could be other important reasons for one on one time with a "late talker."  We have a strong example in our first born son Dakota.

Lightning does strike twice!!  Dakota's Story

Our apraxic son Tanner's older brother, Dakota, had many horrific, and some life threatening head and neck injuries from a traumatic delivery.  We spent the first years of his life going from one hospital or doctor to another.

Dakota was a late talker, and the same pediatricians who were not concerned about Tanner, were very aggressive in trying to find out why Dakota was not talking.  One of Dakota’s pediatric neurologists told us that there was a large window up to the age of 3, and a slightly smaller window up to the age of 6.  I’ll never forget sitting in the one neurologist’s office with tears coming down my face as he told us that our then 2 year old son Dakota had a 6 month delay, and because of the amount of head injuries Dakota sustained, there was no one who could tell us if this delay would be permanent or not. 

The only advise the neurologist could give us, other than more therapy, was to “spend as much time as possible in the next few years stimulating Dakota's brain.”  We asked what that meant and he explained.  Once we understood what we believed we needed to do, we were compulsive about his advice to say the least!  For me more than Glenn at that time, much of each day was filled with “Brain stimulating” activities, games, therapy, stories, hugging, laughing, bright contrasting colors, art, music, playing, daytrips to “brain stimulating” places, and more therapy.  Glenn and I even purchased our then 2 year old an entire collection of educational computer CDs, from Preschool to College level, for him to play with!   

Dakota, who will be 6 in a few weeks,  is a whole ‘nother story, but the point is it’s a success story.  Quite a few doctors have called Dakota the “miracle child” at this point.  Perhaps it was part miracle and part brain stimulation.  Either way, Dakota is “normal” now, and for that we couldn’t be happier, no matter how it happened.   

Then we found out that Tanner, our normal child who was "just a late talker" had something called apraxia.

At one of our CHERAB meetings, the President of one of the NJ Boards of Speech and Hearing Association told our nonprofit group that "we are seeing more children with apraxia than ever before, and with much more severe apraxia than before."  Don't you wonder why?   Is is fast food?  The water?  TV?  The weather?

The following is just a thought

Years ago, (Once upon a time) one parent was always home, while one parent worked outside the home.   Outside of siblings or neighborhood children,  babies and toddlers weren't socializing with large groups of children as much as today.  Were parents or pediatricians concerned about a non verbal 2 year old thirty or forty years ago?  Since a large amount are not concerned today, it's safe to say they were not back then either.  So what's the difference now?  "Back then," children were typically not enrolled in pre-schools, or daycares, at least not like now.  In fact, the first time the child was without one of his or her parents, and was with a large group of children on a regular basis, was when the child started kindergarten at 5 or 6.   Is it possible that apraxic children were not seen so much "once upon a time" because by the time they started kindergarten at 5 or 6 the severity of the apraxia was lessened by so much "one on one" time with one of the parents? 

As parents we are educated to the importance of one on one time for our apraxic children in therapy, and are taught to advocate for this in the schools, etc.  Why do we sometimes forget that outside therapy is only a fraction of the entire day in comparison to the other hours and hours our children are awake?  

There has been studies written up by ASHA  about children with speech disorders and "inclusive therapy."  (Inclusive therapy, basically, is where all the children in the class, challenged or not, learn in a group, and can benefit from each others strengths) Most experts agree that inclusive therapy is great for a child with a mild to moderate delay of speech.  The controversy starts when you talk about "severe" speech delays.  Typically, apraxia creates severe delays in speech.   With severe delays, the most positive statements about inclusive therapy the experts stated is "yet to be determined."  In fact, many experts felt that inclusive therapy would be detrimental to a child with severe speech delays.  On the other hand, experts on apraxia in children agree about the benefits and necessity of one on one learning for these apraxic children.  

Just another thought.

With the above in mind, then isn't daycare  worse than inclusive therapy for children with apraxia since children can attend daycare from as young as 6 months?  If both parents have to work, wouldn't a one on one nanny be better for a baby or toddler diagnosed with apraxia?  (If it's affordable)  Verbal apraxia can't be diagnosed as young as 6 months, but according to the experts, oral apraxia can be diagnosed as young as 18 months. (Once awareness is raised, and parents and professionals can spot the warning signs, perhaps even younger) 

If it's possible, maybe as the Mom and Dad of a child diagnosed with apraxia you could look into how one of you can work from home, take your work from the office home when you can, or cut down on hours.   This would give YOU more time with your child.  As parents that work from home, Glenn and I  have found our schedules to be much more flexible now than when we worked at an outside office.  Most likely, if your child is diagnosed with apraxia, he or she already spends some time in a pre-school disabled program, or early intervention program through the state you live in, or through the school system in the town you live in.  (A great time to get your work done!)  

Since Tanner was diagnosed with apraxia we have done with him what we believed helped Dakota.   In addition to praying he will overcome this challenge, we spend as much time as possible “working” with him. (Of course he thinks it’s playing, and sometimes it is!)  Many people who hear Tanner on the “Talking Page” say how great he is doing!  We say positive things to our children about who they are, or what they do throughout the day. We believe that Tanner sings all the time because all of us tell him, including Dakota, "what a beautiful voice" he has, and that he belongs on TV, so that everyone could hear him.   We said this even when he only had few words, and used to sing the B-I-N-G-O song "B-B-B-B."  Funny thing is, we said this to him for years, long before we knew that one day he would be singing on TV nationwide!  

If 4 years from now Tanner is talking just like every other child, and people wonder if he ever had “severe oral and verbal apraxia,” who cares?   Only we know how much time during the day we have spent working and playing with Tanner.  Some parents are afraid of going for an Early Intervention evaluation for fear their child will be accepted and "be labeled."  Shockingly, some professionals buy into that as well!  Fortunately that never was a thought to us, we would rather have a two or three year old with a "label" than a nine year old that couldn't say his name.  We didn't want to be parents that looked back and said, "if only..."

For us we took the words "work with your child" literally!  Both of us have extensive, successful backgrounds working outside the home, but for the past 6 years, I have worked from home, and Glenn joined me to also work from home 3 years ago.  Our family is like a team, we have fun together, and work together.  For us, the greatest thing about both of us working from home is that we always know that Dakota and Tanner have the best possible people watching and playing and working with them. 

Best to you and yours!

Lisa and Glenn Geng and our little miracles:

        Dakota      and      Tanner  

As parents, maybe neither of you can work from home.  Please don't let what we've written here offend you, or make you feel guilty in any way; We are only letting you know what worked for us.  We are not “experts,” only parents who have gone through, and are going through, special needs for our own children.  Even if you can't be home with your child, perhaps after reading this, you will examine closer the person or people that will spend the majority of the day with your child diagnosed with oral or verbal apraxia.