Wait…is she the ….R word?
Oh apraxia is a sneaky devil. For so long I prayed to just hear her sweet voice say what she wanted to say. At some point she started imitating really well. She didn’t really call out to me “mama” and she didn’t really offer up “I love you” but she could say it in imitation, and this was good. This was very good…because NOT hearing those words was devastating.
I still hear my husband putting her to bed at night.
Husband: “I love you Ashlynn.”
Husband: Say, “I…love….you.”
The progression was slow, but she would do it, in her own way using word approximations. Never spontaneously though.
The last two years are a blur of therapy appointments, speech practice, working toward the next goal. Despite what I would see at home, she would never show her skills to others so anytime she did something new at school or in therapy and they were so proud, I was just left giving a small thanks that at least she’s showing what she does at home.
Family who knew her began understanding her more and more. However, those who didn’t still questioned what she was saying. Disappointing to say the least, but the honest feedback was a necessary reality check. I know what she’s saying 99% of the time, so it sucks when even her school SLP rates her at about a 60%. Oh well. I need honesty, and that’s honest.
On her fifth birthday though, it all started to change. I posted a video of her, and the feedback was incredible. Everyone could understand her!! Other people were validating what I have seen for so long!!
A progress note from school only lists a few artic errors: inconsistent ‘l’ and ‘l’ blends, a frontal lisp ‘s’ pattern, and occasional errors with multi-syllabic words and consonant clusters. Of more concern now are expressive language delays including: grammar, sentence formulation, and word finding.
That’s when it hit me. Ashlynn is almost “resolved” from CAS. Her motor plan (I’m tearing up), has caught up.
What? Could it be true? Can I actually start to even consider my daughter might be working toward resolved CAS?
How could that be? It’s only been two years, but then I remember the struggle has been so much longer. Is this really the girl who could only say “hi” and “a dah” for everything? The girl who said “nah” for “bus” and “dada” for “iPad?”
I read something once that said,
The days are long but the years are short.
Yes. Yes. Perhaps this is true. At some point I stopped praying my nightly prayer that she would overcome apraxia. When did that happen??
I’m always looking toward the next problem. The next goal. She has an expressive language disorder now, and the future for a reading disability is still unknown.
Maybe I need to stop for a minute. Smell the roses Laura. There was a time you yearned to hear that sweet voice. That very voice today that told you, “I like you mama. I like you. I like daddy and I like Jace. You’re my family.”
What I would have traded or given to her those words two years ago.
So yes, I’m going to pause. I’m going to freeze time. I’m going to think, if only for a moment, how sweet it is to hear my daughter’s voice. A voice that is her own and able to express her own thoughts.
I’m going to reflect on the fact, that in just two short years, I met the head of CASANA and went on to now have advanced training and expertise in CAS. I literally have national apraxia experts a keystroke away via email.
Say what? How did that happen? How did any of this happen?
I just asked to join the facebook group for resolved apraxia but with new issues. Yes. That’s us. We now fit into that category. My daughter talks so much I now know she needs help with expressive language. How amazing is that?
Even though I was late to the game in my opinion because I so wanted to believe Ashlynn was just a late talker, none of this would have been possible without early intervention…..wait…let me clarify…appropriate early intervention.
For reasons I will probably address later, I’m so, so, so grateful that Ashlynn’s initial evaluating SLP (in the schools) told me it was CAS. I knew then I had to get her private services. I knew then I had to research this disorder. I knew then our life would never be the same.
I’d seen CAS before. I’m an elementary SLP, and in my 10 years of experience, two kids walked through my door in Kindergarten nonverbal.
That would have been Ashlynn had not appropriate therapy been initiated. That meant that as an SLP, even I had to pay out of pocket. $365 – $425 a month. Yes. Ouch. Therapy is expensive, but it’s worth it. I just had a baby in that time too and was on maternity leave. We didn’t have any extra money. You make sacrifices. It’s necessary.
I knew I didn’t want Ashlynn walking into a Kindergarten classroom nonverbal, so my husband and bit the bullet and went broke funding her therapy.
It doesn’t matter now. It was all worth it. I’m so proud of her.