Team Lucas

Why do I walk for Apraxia?

At Lucas’s two-year check-up, I mentioned again Lucas’s lack of speech. How there had been no changes. My son has not spoken in the last year. The only sound he still continues to make is “uh.” He recommended continuing to wait it out, and Lucas will eventually talk. 

I didn’t want to wait! I was very concerned about my son’s lack of speech. I demanded something! There had to be something that would help him! 

And that’s when we received our referral for speech therapy. 

Soon after, Lucas had his first evaluation with his speech therapist. It was very obvious Lucas had a speech delay and was recommended speech therapy 2x a week. 

So we started speech therapy. 

After starting speech therapy, Lucas started making other sounds, not so much words. He would sometimes say a word once and then never say it again. He was years delayed in speech at 3 years old. 

When Lucas turned 4, he started trying to talk. He wanted to talk! Most of everything he said was not understandable. Lucas received his yearly evaluation that showed they believed Lucas showed characteristics of Childhood Apraxia of Speech. 

After Lucas started preschool, he really tried his best to talk, and that’s when you could really hear what sounds he struggled with. That’s when his speech therapist felt confident in the diagnosis of Childhood Apraxia of Speech.

What is Childhood apraxia of speech(CAS)? CAS is a neurological disorder that affects a child’s ability to plan and sequence the movements needed to correctly produce words and sentences. 

 I was upset, like why did it take so long to get this diagnosis? They needed to hear him speak to be able to diagnose him. Soon after his official diagnosis, Lucas received a speech device to help him with his needs while he’s at school. At home, I could understand Lucas, but it was more of a learned language. Other kids often asked me what language Lucas spoke. That’s how apraxia works; he has his own way of saying words. 

I asked his therapist what this means now for him? What more can I do? They told me he needed specialized speech therapy for apraxia. That Lucas has a severe case of CAS. They told me about Kaufman Children’s Center. And how they were specialized in CAS. His sessions then started using the Kaufman Cards. 

Before Lucas started preschool, I told the school about his troubles communicating, and we got the IEP for Lucas to receive speech in the school. He began with 2x a week, 30 mins each session. In preschool, Lucas’s teachers reported they could understand about 10 percent of what he said. He had amazing teachers who went out of their way to understand him. He had classmates who helped when they knew what he was saying, and his teachers didn’t. I’ll never forget how happy his teacher was to tell me they asked what word started with the P sound, and Lucas raised his hands to be called on. His teachers couldn’t quite understand what Lucas was saying, and a classmate said, “He’s saying Pokémon”. 

I had Lucas evaluated by a childhood developmental specialist through U of M who referred us to a pediatric speech pathologist. That Speech Pathologist told me, my son’s case of CAS was very severe. She told me while evaluating him, she couldn’t understand most of what he was saying. She told me right now his speech might be “cute,” but it wasn’t going to be so cute when he is 7 or 8 years old. She told me he needed specialized speech therapy for CAS and that his best bet at ever talking was for him to go to Kaufman Children’s Center. I should consider moving to Bloomfield for him to go there. She put in for Lucas to do temporary speech therapy through U of m. Which was booked out, and he wouldn’t start for another 6 months. 

Of course, I had already looked into Kaufman. Kaufman doesn’t take Lucas’s insurance and is very expensive. I needed to try to find somewhere that would help him but also took his insurance. 

There was nowhere! Everywhere was out-of-pocket private pay. Kaufman is an hour away. That’s far, but it wasn’t far enough that I would consider relocating. So I signed him up to be put on a waiting list. 

During that time, Lucas started Kindergarten. His speech was still mostly not understandable. We were still doing speech 2x a week after school. Waiting on that call from Kaufman, expecting that it would be more towards the end of Kindergarten. And then we got the call! 

A month after starting kindergarten, Lucas received an evaluation from Kaufman Children’s Center. He was approved for speech 2x a week. He started seeing his amazing therapist at the end of September. Watching her teach him words I have never heard him say has been amazing. Truly a blessing! At Lucas’s parent-teacher conference in March, his teacher said she can understand most of what he says and even laughs at his jokes now. Lucas still struggles with speech. Especially if he’s very excited or upset. Kaufman has really been life-changing! We dropped his original speech therapist to once a week to focus on Kaufman. He misses 2 days of school every week. I told his school he can repeat kindergarten but he can’t repeat being 5. He needs this. These years are so important for speech therapy as he was teaching his brain how to talk incorrectly. At his last parent-teacher conference, his teacher said she would not be holding Lucas back. He is doing well in school and thinks he would be too bored in kindergarten next year!

Between all the speech therapists Lucas sees. He does 30mins of speech therapy 5x a week. This month is about recognizing Lucas and kids like Lucas who have CAS. And their hard work and dedication to speak!

If you have read Lucas’s whole journey, thank you! Before Lucas got diagnosed, I had no idea what Childhood Apraxia of Speech was! So it is now my responsibility to educate everyone in his life. 

I love you so much Lucas. 💙

keep on fighting for your voice! 

#teamlucas