Magic of Progress

So often, even with appropriate therapy, progress with Apraxia is slow but steady.  The syllables in words have to be learned individually.  Then E has to be able to say all of the syllables in the word together.  Then in a phrase, then in a sentence, then we have to work on generalizing it into everyday speech.  It is exhausting and sometimes it seems like two steps forward and one step back.  The thing that saves me is comparing her progress over time; taking videos and then watching them months or even years apart.  The progress is absolutely amazing but difficult to see day to day.

I often get caught up in the day to day stresses and frustrations of organizing appointments and getting her to all of her speech and O.T. sessions, keeping her involved in sports and gymnastics, as well as her sister and brother.  But when you see the magic of progress it is all worth it.

Yesterday, I sat on our curb watching E ride her bike in the street.  Eighteen months ago she could not even pedal.  She was so proud of herself when she finally got it and she would ride up and down our sidewalk on her little bike with training wheels desperate to be able to ride like her older sister and neighbors on the street.  Five months ago, she begged me to take her training wheels off.  I didn’t think she was ready and didn’t want her to be disappointed but she begged and pleaded so I relented.  In one day, she taught herself how to balance and ride her bike.  She still could not steer but she kept at it and it was not too long before she got that down too.  Then they only thing we had left was how to start off.  She couldn’t balance the bike in order to begin so she needed me or her dad to get her started with a little push.  Pretty soon she figured out on her own that if she started at the top of a driveway, she would get enough momentum to start herself.  Then yesterday, she figured out how to start from a flat surface.  I watched my daughter in absolute amazement yesterday as she rode her bike up and down our street, starting and stopping by herself, beaming with pride that this summer she can ride with the big kids in the neighborhood.

Learning to talk isn’t like learning to ride a bike.  I won’t be able to blink and suddenly have E understood by strangers.  But the determination and can-do attitude that E demonstrated while teaching herself to ride a bike is the same thing she needs in order to learn to speak.  Watching her ride yesterday left me speechless.  This kid has grit like no other.  She can do anything she sets her mind to and I’m so glad she’s mine!

Just As She Is

As E has continued to improve we’ve noticed she seems to have more control over one side of her face than the other.  When she’s frustrated, whining, or trying to smile on command she scrunches up her face and eyes unevenly.  Sometimes it even seems like she’s talking more from the one side of her mouth than the other – kind of like a person who has had a stroke.  She doesn’t do it when she’s talking or smiling or crying without thinking.  It seems to be only when she’s cognizant of trying to control her face and mouth.

According to ASHA’s CAS Technical Report causes of CAS fall into three categories: known genetic and metabolic syndromes, strokes and trauma (sometimes intrauterine), and idiopathic.  As far as we know, E’s CAS is idiopathic.  In reality, we think it’s probably genetic or inherited.  We have several family members with some similar symptoms, although nowhere as severe.  We’ve never spent much time concerned about the exact cause.  As long as the cause doesn’t change the treatment, it’s not something I really need to know and in any case may not be something I can know until more research is done.

But watching E contort her face when trying to plead to stay up longer has led my husband and I to talk further about the cause of E’s CAS.  We could put her through genetic testing.  Although expensive, I think it only involves a blood test and is not invasive.  Or we could take her to a neurologist and get an MRI to see if she has had a stroke we are unaware of – maybe a stroke at or before birth.  If either of these tests were positive, would it change her treatment plan?  If both of these tests were negative would we have done anything other than waste quite a bit of money on a wild goose chase?

Pondering our options also make me concerned about E’s reaction to all of this.  She’s not a toddler anymore who won’t remember the visits to endless doctors.  She’s five.  She has a very good memory and she is very aware that she has CAS.  She knows that she’s the only one among her siblings and friends who has to go to speech and occupational therapy and counseling.  She knows she’s the only one still using training wheels when all of the other neighborhood kids can ride bikes without them.  She knows she talks funny and that most people have a hard time understanding her.

But does she also know how beautiful she is, inside and out?  Strangers always comment on her beautiful eyes and hair.  Those of us that know her see how kind she is to both her sister and her brother.  When we tell them no to something, she’s the one that takes up their defense and tries to convince us to relent while they cry.  Does she know how smart and clever she is?  At times, her vocabulary amazes me.  I’m constantly surprised by the words she can already read by sight.  Does she truly know how proud of her we are?  She tries new things that are hard for her on a daily basis – softball, soccer, swimming, and gymnastics.   And she doesn’t give up, just like she doesn’t give up with her speech.

I don’t want E to ever feel less than, to feel broken.  Would finding a cause make her feel that way?  If she knew that she was born with a specific genetic mutation that caused it, how would she feel?  If she knew that something during or before her birth was responsible would that make it any better?

The more I think about it, I think that these are questions that only E can answer when she gets older.  If she decides that she would like to try to find out the cause then we would certainly support her in doing so.  If she doesn’t want to know then we’re okay with that too.  It will be her decision to make.  We don’t need to know because she is perfect just as she is.

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