Wednesday, October 10, 2012

Childhood Apraxia of Speech

For a while I have thought that there is something more going on with Mikail's speech (or lack there of).  People just keep saying that boys are slower to develop speech...blah...blah...blah.

For the past five weeks Mikail has been going to a weekly Late Talkers Play Group.  In the first four weeks I noticed that the words 'motor movements'  have been used and I finally Googled them and found nightmarish possibilities of what this could mean. The Internet can be so wonderful and so horrific at the same time. Instead of continuing to read what I was finding, I emailed Mikail's Speech Pathologist and shared my findings and in conjunction with his MRI report think that there is more going on than just a speech delay, but needed her input and advice.  She called within minutes and we had a wonderful conversation.

Without having done the formal assessment, she believes (and I totally agree with her) that Mikail has what is called Childhood or Developmental Apraxia of Speech.  Sounds scary, doesn't it?  Here is a good defenition of this disorder:

Childhood apraxia of speech (CAS) is a motor speech disorder. Children with CAS have problems saying sounds, syllables, and words. This is not because of muscle weakness or paralysis. The brain has problems planning to move the body parts (e.g., lips, jaw, tongue) needed for speech. The child knows what he or she wants to say, but his/her brain has difficulty coordinating the muscle movements necessary to say those words. (Source: www.asha.org)

Considering Mikail's stroke at birth and how it affected his brain as well as the way he is learning to speak, this motor speech disorder makes 100% sense.

Truth be told, it broke my heart. I think I wanted to believe that he just had a speech delay due to being a boy etc. etc. But I knew better. Deep down inside, I just knew there was something else going on. Yet, it just breaks my heart into a billion little pieces and throws me right back to May 8th and 9th of 2010. I just wish I could go back and re-do and un-do what happened in those 38 hours of labour. I wish I could go back and make more informed decisions. I wish I could go back and NOT trust the doctor who delivered Mikail.  Most of all I wish that I could just forgive and move on, but just as I think I have forgiven, I see that I must do it again (and again, and again). It breaks my heart because Mikail did nothing to deserve this. He has to work so very hard at something most of the world takes for granted.

Once I had my Mama Pity Party, I was hit with the reality that Mikail WILL speak one day, just like when he didn't sit up, we knew that one day he would. When he didn't roll over we knew that one day he would. When he wouldn't crawl, we knew that he would and when he wouldn't walk, we knew that he would.  And one day? One day he will talk, but it will take a lot of work just like all of those gross motor skills took a lot of work to get to the final product. Most of all the reality hits me that the original prognosis was that he would NEVER walk or talk or eat on his own. He would be wheelchair bound forever. So then, when I remember this I feel guilty because truth be told we are so incredibly blessed with this little boy who prefers to use sign language and gestures at the moment. And no matter how frustrating that is at times, we are blessed that he is an incredibly smart little boy who has already shown us that he can work around this disorder and communicate with us in his own way.

So, what is the plan now? The plan is to finish this Late Talkers Play Group and start a Motor Speech Play Group in November. Then in January he will start one on one speech sessions with his therapist and we will most likely top those up with additional private sessions. The Government of Alberta only provides one session a week and CAS kids respond faster when they have 3-5 sessions a week. Then in spring of 2013 he will be formally assessed and Brenda, his therapist believes he will still have severe phonological delay and be eligible for Government funding for Preschool in September that will address his phonological needs in addition to private Speech and Language Therapy that will be one on one. That is the plan. It is good to know that there is a plan.

Looks like this blog isn't going to be ending any time soon, as I thought it might. The challenges and joys and triumphs of having a child who had a stroke continue...

6 comments:

Monica said...

Oh yes ... us mamas know when something is up with our kids. Good for you for trusting your instincts.

Again and again I marvel at the mama this little guy got. There is no one else who would be as dedicated and optimistic and determined to make sure Mikail crossed all those developmental stages off his list. You do not accept excuses and Mikail will benefit so much from you being who you are and supporting him in all the ways you already have. You are amazing.

Unknown said...
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Iris said...

Aw! You make me feel so good. Thanks for your encouragement.

Jo said...

I have a friend who had 2 children with this and they both had therapy sessions and can communicate just fine. I haven't seen them in awhile, but I know it can be learned. Her problem was getting them to stop communicating in their lang to each other :)

betty-anne said...

hello , I stumbled upon your site totally by accident when I was trying to focus on making strawberry jam.
My niece has been diagnosed with apraxia. And she too has difficulty trying to formulate her words.
Kudos to you for forging on with your son! You are blessed anyway you look at it.
Things happen and we don't know why. We ask why why why, and again I stumbled on the book called prayer of Jabez where we are asked for God to bless us. Anyway, thank you for blogging . This has blessed me too.

Iris said...

Welcome here, Betty-Anne. I am sorry your niece and her parents are struggling with Apraxia as well. Yet, you are so right, there is blessing in most everything. I have not read the Prayer of Jabez in about ten years. Thanks for reminding me of it. I will have to take it off the shelf to read again. Such a good book. Blessings to you.