The day I hit "Publish" on it, I cried.
If I'm being honest, I cried for what I thought I was missing. What I felt was stolen from me, and even more so Ryder.
I made many who read the post cry too.
Apraxia of Speech.
3 words I still wish I never knew. 3 words, when linked together, were life-altering for our family. 3 words I have grown, with time, to accept. And, maybe even appreciate. Maybe.
367 days ago I wrote about Ryder's diagnosis. At that time, we had been through several months of frustration with our local hospital and school district. The SLP diagnosing him had me feel infinitesimal in size when I brought up those 3 words at Ryder's evaluation. My heart hurt for my son. He had done nothing to deserve this. Nothing. Yet, we were facing what felt like a long, lonely path. My writing reflected this, I believe, between the lines. I didn't write about the way I was treated when Ryder was diagnosed - I stated she was kind. She was kind to Ryder. Not to me. I didn't write the near battle it was to get Ryder to been seen the first time by the school district months prior. Or, the many failed methods suggested to us to get Ryder to "stop being lazy" with his speech. Or, really, the heartache. In looking back now, I see it written in every line. And, between each line. It wasn't my intent.
But, 367 days later I hope what you read between the lines is hope.
Ryder has completed a full year of Speech Therapy. It's been a road with many curves and bumps, but we've navigated it together as a family.
Almost immediately it was clear that PCMC was not a good fit for Ryder. But, we (more me) pushed it. PCMC is world-renowned for their work with children. World-renowned. What I failed to see is that it's status made no difference to my struggling son. The therapist was easily frustrated with Ryder, and he was even more easily angered with her. She primarily worked with children a few years older (which makes sense, seeing as Ryder was the youngest child to receive the Apraxia diagnosis by PCMC). Her patience level would wear thin quickly.
At the time, Ryder was attending a Montessori School two days/week. His teacher had let us know earlier in the year that the school worked with a Speech Therapist company, and a specific SLP came into their school weekly to see students. We declined at the time, but made the call to get more info just weeks into the PCMC therapy.
And, although this blog is personal, it is also public. We'll call this new SLP "S".
S has been a blessing to our family. Beyond words. I recently sent her boss a review of our near year of therapy. I wish I was a better writer, as I am sure I failed to convey my full thanks for her. If asked, I am positive that S would say that it is Ryder's effort, and the effort Patrick and I make throughout each day. And, she is correct, but she fails to see just how immense her role plays in his success. My son has the ability to communicate. He can express his feelings. He can say "me no know da word" when he knows what his is thinking, but can not physically say the word. He can SAY that he doesn't know the word. SAY it.
Also at the time I first wrote about Apraxia, Ryder was being seen twice monthly by the Early Intervention (through our school district). Following the diagnosis from PCMC, we had nothing but great experiences with the SLP. It was as if she needed the confirmation of a diagnosis to do things differently than she was "supposed" to. It took us awhile, but I would say that Early Intervention played a key role in Ryder's success as well.
When Ryder "aged out" this summer, the therapy from Early Intervention stopped. He qualified for the district's Special Ed Preschool, and attends 4 days/week. It's hard to quantify his improvement directly related to his attendance, but we are happy to have him there. Ryder has an awesome teacher, whom he loves. He is in an environment of peers who also struggle in some area of their development. Many are more severe than Ryder, in different ways. In this environment, Ryder has learned how to better communicate with children. I place credit with the school (over daycare, home or church) because it is there that he has to problem solve most frequently. He has the opportunity to interact with differently-abled children, which has made him more aware.
So, 367 days later.
This year has been hopeful. As we were able to make the right connections for Ryder, he was able to begin success. Ryder has a long road, still, ahead of him. He is still, in many aspects, behind his peers in verbal expression. The truth is, he may always be. But, we are hopeful for his future. If he can go from 2 words (ball and "ba-woon" (balloon)) to no longer being able to count the words he can express, what can he do in a year more?
Ryder will continue in the Special Ed Preschool through this school year (he will likely no longer qualify next year - both a blessing and a curse - for another post). He will continue his therapy with S, and decrease slightly in the coming months, as S prepares to welcome a third baby into her home. He will get a full month "off" from formal sessions, before going back to S regularly (and, her willingness to take only a month off makes me forever grateful).
Now, our concern shifts to encompass little brothers. Harvick and Jarrett are nearly 20 months old, and non verbal. They babble. Constantly. But, have no words. We see in them the same signs we saw in Ryder. PCMC had told us, upon diagnosis, they have never treated a sibling set for Apraxia of Speech. This, combined with being boys and being multiples, gives us a slight chance they just have delayed speech.
We have made the choice to not pursue speech intervention with them yet. We know (very well) basic speech therapy techniques, and use them with the boys regularly. In the coming months, if their non verbal state remains, we will begin the process over again. Only this time, we have hope on our side.
Thank you, YOU reading this, for being a support to our family. I know that "only" have a speech issue seems insignificant in the greater picture, and it is, but in the moment, it is hard. And lonely.
For those of you that interact regularly with our boys, just as it was 367 days ago, you should continue. Encourage words, even if none come. Require they make an attempt, even if it is very far from the correct sound.
Finally, to any of our friends with young children (especially Ryder, Harvick, and Jarrett's ages) : don't hesitate to tell me fun things your child says. Or, new words they are learning. I'll be honest, sometimes it takes a conscious choice to not be sad for my boy(s), but I have never, ever, not been happy for you to experience this.
Apraxia of Speech is a challenge, but one that we will overcome.
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| Their new bedtime routine (hence the sleepy eyes) includes running over to their growth charts to check if they have grown since the night previous. It is likely one of the cutest things ever! (Ryder, Harvick, and Jarrett) |
One-step-at-a-time.
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