Starting Rory’s Apraxia Journey

By on Jul 22, 2017 in Apraxia | 5 comments

We have been trying to “unlock” our three-year-old daughter Rory’s speech for the past year and a half. While apraxia has been on the table as a potential diagnosis since the beginning, I never really felt like that was “it” and I hoped that even though it wasn’t likely, that she would be one of those late talkers who just woke up one day and started speaking in full sentences. You know, like Einstein.

When she turned three and still had only a handful of words, we took her to the developmental pediatrician, who pulled out her copy of The Late Talker to go through the symptoms of  apraxia with us.  When we got home I checked the book out from the library and joined the Facebook group of co-writer Lisa Geng where I read article after article about her experience with her son’s apraxia.  But it was this article about the soft signs of apraxia that really hit home the most.  Before our doctor’s visit, I had written down Rory’s hodgepodge of seemingly unrelated “symptoms” to go through with the doctor just in case she could help us make sense of them.  Even going through them with the doctor didn’t connect any dots.  But as I read this article I started checking them off the list: her “W” sitting is a sign of hypotonia or low tone; her high pain tolerance and major freakouts over little annoyances, plus the way I have to pin her down to brush her teeth or trim her nails are signs of sensory processing disorder; the way she can do something one day and then never do it again, that’s global motor deficits.

Then I read this article about oral apraxia.  Checkmarks in this one: can’t blow out candles on a birthday cake, can’t blow bubbles, can’t give real kisses, bites straws, overstuffs her mouth, can’t stick out her tongue or make funny faces.  And most especially this statement: Not all children with verbal apraxia will have oral apraxia, but it’s pretty much a given that all children with oral apraxia will have verbal apraxia.  She obviously has so many signs of oral apraxia and that’s causing the verbal apraxia that’s preventing her from progressing in her expressive speech.

So here we are.  Apraxia.  It’s a really scary place, sitting here at the beginning of what’s sure to be a long journey.  I’m trying to find the right mix of therapy and most importantly the right therapists who understand the disorder and can help her finally make progress toward our ultimate goal of speech.  And even scarier, trying to find the money to pay for it.  We’ve applied for the Gardiner scholarship, which would take the money that would go toward her public schooling and give it to us to use on private school or therapy (this is an AMAZING THING and I am so grateful to my friend Carol for letting me know it existed!).  But after the Gardiner, there is still a pretty big financial deficit to be made up to pay for it all.  We are hoping that maybe Rory will qualify for Medicaid (can we talk about how scary a proposition THAT is in these days of attempted healthcare reform??) but because we are much richer on paper than we are in real life, I’m doubting that will come through.  We have been out of the traditional insurance world for the past year and a half, switching to a healthshare ministry “co-op” called Liberty HealthShare, which has been a wonderful thing for our family.  We really love it!  But they only cover 10 sessions of each type of therapy each year which doesn’t even begin to cover what she needs.  So at the advice of my contact at Liberty (yes, I have a “friend” there who I can reach out to with questions and concerns directly…like I said, we love it!), I am appealing for more coverage, a LOT more covrage.  In spending the time writing this letter today, I thought that many of you would find it interesting to read so you can better understand Rory and the struggles she’s having due to the apraxia.  It’s pretty long, so buckle up and read on…

Our daughter Rory just turned three years old.  She also just received an apraxia diagnosis, which has affected her expressive speech so severely that while she understands everything we say (this is called her “receptive language”) she can only say a few garbled words (her “expressive language”).  Most people, including me a few years ago, have never heard of apraxia, so my goal today is to tell you a little bit about it as a justification for why she desperately needs more than the 10 therapy sessions allocated in the sharing guidelines.

Our ultimate goal is to get unlimited habilitative therapy visits without time or visit limits because the services are to enhance Rory’s ability to function.  This is something that many insurance companies will offer as opposed to limited REhabilitative therapy services because they understand the importance of early intervention on long-term outcome.  We are not trying to rehabilitate or fix something that was broken, we are trying to give our daughter something she has never had: the ability to speak and function and essentially the ability to have a normal life.

While our request is pretty huge, I want you to think very hard about our little girl while I tell you about what she is going through.  Rory is our fiery redhead with bright blue eyes and a charming smile.  She loves doggies and her family more than anything and can often be found chasing her two big brothers around the house or snuggling with her baby brother.  She is the only girl in a sea of boys and is most definitely the princess of the family.  She is obviously intelligent and loves building with blocks, doing puzzles and dancing to music.  In so many ways she’s just a normal kid.

But unlike most kids her age, she has been in therapy since she was a toddler and likely will be for years to come.  She went through the Early Steps program offered by our state with EI (early intervention) therapy, but that was really meant for developmental delays and apraxia is NOT developmental, it’s neurological, so it had little effect.  With only one 30 minute session each week of traditional speech therapy (many of which we have paid for out of pocket since we blew through the 10 covered sessions this year very quickly) she has made little progress in the past year and a half.  It is time to get her the extensive therapy, both speech and occupational and maybe even physical, that she needs to essentially reprogram her body.  Children with apraxia of speech require 81% more individual treatment sessions than children with severe phonologic disorders in order to achieve a similar functional outcome.  (The article where I got that statistic talks more about the frequency and intensity of speech therapy she will require: http://www.apraxia-kids.org/library/speech-therapy-for-apraxia-frequency-intensity-11/)

Apraxia is a motor planning disorder, which means her brain is having trouble communicating with the rest of her body.  As it applies to speech, she can think of what she wants to say but she cannot make her mouth make the movements necessary to make the sounds necessary to make the words necessary to express her thoughts.  To imagine what it’s like for her, think about being in a foreign country where you do not know the language.  You know what you want to say, but you are unable to communicate your wants and needs to the people around you.  This is what it’s like for Rory every day.

She has learned some sign language and uses every tool in her arsenal to communicate with us (in technical terms she has “intent to communicate” which, for example, many non-verbal autistic kids don’t have).  If she wants to watch her favorite movie on TV she will bring me her hot pink Troll stuff animal so I will put it on for her.  If she wants a cookie she will sign “cookie please” with a smile and grab my hand to bring me in the kitchen to get one for her. (Note: this rarely works, but it is pretty adorable!)  These are things we are ABLE to work around.  However there are also many, many, many times that Rory wants something and there is no way to tell us what it is.  She becomes increasingly upset when this happens, whining, crying, and even hitting, scratching and kicking because she is just SO frustrated.  This is hard for our whole family, but especially for Rory.

Rory’s apraxia is global, meaning it not only affects her speech, but also her whole body.  She has trouble with fine motor tasks so she is unable to draw pictures other than scribbles, eat with utensils, turn door knobs, flush the potty.  Her “oral apraxia” means that she can’t blow bubbles or give kisses.  I have said to my husband that apraxia is robbing her of many of the joys of childhood.  Big things aside, can you imagine not being able to blow the candles out on your birthday cake?  These are the things that she needs occupational therapy for.  In fact, occupational therapy can often be very effective in helping with speech since the apraxia is affecting her whole body, so it is a tool we definitely want to add to her regimen.

Aside from how it affects her body, Rory’s expressive language delay makes it hard for her to make and keep friends.  While the other children in her pre-school class are chattering about princesses, or asking their parents “why” questions a million times a day, Rory is either silent or “voicing” her frustrations (loudly). She often gets frustrated and overstimulated when we are out doing fun things that most three year olds love to do. She tends to use her hands to communicate, which is usually taken as aggression even when it’s not.  Her imaginative play skills (having tea parties, playing dress up, etc.) are nowhere near where they need to be because she doesn’t have the words to use to play the fun pretend games that her friends play.

Rory is at a very major crossroads.  Apraxia will not get better without extensive therapy.  We cannot afford extensive therapy on our own.  If she GETS the extensive therapy she needs, she will hopefully learn to speak and function to the point that after a few years you won’t even be able to tell that at the age of three she could only say a handful of words, and she will go on to lead a completely normal life.  If she doesn’t get that extensive therapy there is a good chance that she will never be able to tell us about her day at school.  Never be able to have real friendships.  Never be able to fall in love, have a family. Even typing those statements out makes me want to scream for her.  We can’t let that second possibility become a reality.

Because of the enormity of the situation and the values behind Liberty’s company culture, we hope that you will find it in your hearts to find a way to help us give Rory the future she deserves.