Life Expressions

As some of you may already know, we have been keeping an eye on my youngest, Miss P, and her speech development.  This blog and the ones to follow regarding CAS are the experiences we will go through.  I am in no way a doctor, but I am her mom.  Us mom’s have a perspective that doctors do  not.  When we were given this possible diagnosis, it was a little scary and I of course went through every scenario including the “did I do something” during my pregnancy to cause this?  Of course not, but I over-analize EVERYTHING.  I thought about keeping it quiet because I was a tiny bit embarrassed that my beautiful baby girl wasn’t keeping up with everyone else’s kids their age.  I slept on it and after trying to find more information about CAS with very little out there, I want to share my story so other mothers will know what to expect.  If it helps one mother, I have helped and that is all I want.  If no one does, we will have a detailed story for Miss P to tell when she goes on to be something wonderful!  I know this could be a lot worse.  I am very fortunate to have 4 very healthy children.  The worst thing we have had to deal with up to this point is our son L is dyslexic and we have a teenager!   I am not asking for sympathy in any way, I just want to share this experience with anyone that wants or needs to hear it!

12/12 Miss P is 2 yrs 2 mo.

We have been seeing a speech therapist and we believe we have found what it could possibly be.  The reason I say “possibly” is because the process to actually determine that is her diagnosis takes anywhere from 4-8 months to get into the Children’s Hospital here in KC for a Developmental Evaluation and for that to be completed.

When I called to set up the consultation, they told me that 2 months after you leave your initial phone call to start the process, they will call you back to do a phone interview.

Those results will then be shared and reviewed by the doctors.

They will determine if it is Apraxia or something else where they will need to send you to a neurologist.  If it does prove to be Apraxia then it will be another 6 months before they are ready to start treating her.  If its something like the neurologist, it would only be about 2 months.

During that time, since her “symptoms” are very similar to that of CAS, we will move forward with that type of treatment as it won’t change anything on the back end of the therapy.

What causes childhood apraxia of speech?

Childhood apraxia of speech (CAS) is a motor speech disorder. There is something in the child’s brain that is not allowing messages to get to the mouth muscles to produce speech correctly. In most cases, the cause is unknown. However, some possible causes include:

• Genetic disorders or syndromes
• Stroke or brain injury

It is important to note that while CAS may be referred to as “developmental apraxia,” it is not a disorder that children simply “outgrow.” For many developmental speech disorders, children learn sounds in a typical order, just at a slower pace. In CAS, children do not follow typical patterns and will not make progress without treatment. There is no cure, but with appropriate, intensive intervention, significant progress can be made.

How common is childhood apraxia of speech?

There is little data available about how many children have CAS. The number of children diagnosed with CAS appears to be on the rise, but it is hard to know how the incidence has changed over time. Some factors influencing this rise include:

• Increased awareness of CAS by professionals and families
• Increased availability of research on CAS
• Earlier-age evaluation and identification

At this time, we are seeing a speech therapist once a week.  She is really great and patient with Miss P.  With the lack of communication, she has a tendency to over-react to situations that would normally be settled if she could talk.  It is like trying to communicate with a 12 month old (that is where her vocabulary level is now).  Trying to understand if she is hungry or thirsty or she has an owie and trying to tell me where it is, can take a while.  With these fits, I just chalked it up to her being a very independent toddler.  Our therapist told me that it is her showing her frustration for not being able to communicate.  No matter her situation, we have to show her who is in charge, so always requesting “one more” if she is throwing a fit, then let her be done.  This goes for pages while reading books or toys or anything of the kind.  Its interesting how her mind and body are changing but she cannot communicate it to me.  We are however learning to sign more and more.  She does have some words that she is saying and those are so much sweeter now.  We are all learning the basics to be able to understand what she is saying and its proving to be very fun and satisfying to see her use sign language!

Another thing that we were finally able to pinpoint is why she always makes horrible messes with her food when she eats and she likes to spit out liquids into, on, or around any surface she can play in.  We buy wipes in bulk!  They tell us that will get better too as she learns the coordination stuff along the way.  They apparently have a fixation with their mouths just like babies do but instead of putting everything in her mouth, she spits it out.  She is very picky about what texture she eats and drinks.  We have learned to give her a small taste of anything new and to let her see it, or touch it herself, but if it messes with her tongue at all, she is done!

Our next obstacle is potty training.  She is starting to show interest but should I continue to encourage it or should I allow her to get more communication under her belt?  I think…we are going to wing it!  Right now we will stick with the “ewww, yuck” when she is dirty and she understands “lay down so we can change your diaper”.  She came up with the “ewww yuck” on her own after she decided to take off her diaper one day and make a mess.  I repeated it to her several times while I was Cloroxing down her room.   Now when she is dirty, she tells me.  She has ZERO interest in using the potty that Santa brought her after the diaper incident.

We are going to give it till her 6 month review from First Steps to determine if we need to move her up to 2-3 times a week.  That should be coming up in May or June.  In the mean time we are also taking her to Kindermusic once a week.  Interacting with the kids is good for her and boy, does she LOVE music!  Our instructor at Kindermusic also holds degree’s in music therapy!  She is very excited to work with Miss P and wants to know everything about her case so she can get extra things from her to help along the way!  What a support team to help us through this!  Now I just need to find a play group that we will feel welcomed in and where we both feel comfortable.  That will give her 3 days of speech interaction and with us doing our part here at home,  we are hoping she will be in full swing with no delays by the time she is ready for kindergarden.

Current words:

Dada
Mama
Baaaa (ball)
Doe (door)
Shoooo (shoe)
Nana (banana)
Ewww Yuck (anything dirty or things she doesn’t like, like snow)
kkkkk (drink)
Bop (popping when we do bubbles)
Hi!
Hey!
Ah -ee-ooo (I get you)

Current signs:

Eat
Movie
Horsey
Fish
More
bye

Well that is the update to this point.  I will post any new words or signs as we go along so you can see her progress.  We have a long road ahead of us, but I am happy I have such a happy and smart baby girl to take on this challenge.  Feel free to ask me any questions, I am happy to share any information I gather on this subject and I may learn stuff along the way from your posts too!

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