Wednesday, December 14, 2016

Don't Stop Believin': The theme song of special needs parenthood

A year and a half ago, during an IEP meeting, I was told that Max's speech wasn't going to progress much more. Around that time, I got a report from a district speech therapist that was primarily focused on the challenges of Max's speech. It didn't say a word about his potential.

I refused to be discouraged. 

If I didn't think Max had it in him to improve, who would? 

I do not have false expectations about Max's speech. He will likely always be tricky to understand, unless you know him. Even then, it's not always possible to understand what he's saying. I am fluent in Max yet there are times when I have no idea what he is trying to tell me. 

Still, I knew that at 12 years old, his potential for progress was not tapped out. Because I am that expert known as Max's mom. I'd been seeing small improvements here and there: new words, words said a little more clearly. His speech was inching forward. 

If I didn't think Max had it in him to improve, who would? 

Consonants are the hardest for him—p, b, d, k, f, all of them. I've never heard an "f" or a "p" or a "j" or a "q." Speech therapists have coaxed b's and d's and s's out of him over the years, but they are not sounds he makes of his own volition. 
Last night, I ran an errand and called Dave before I headed home. He put Max on the phone.

"Hi, Mommy!" he said. "How are you?" For years, I was "Ohmmy," which made me perfectly happy. Recently, he's been articulating the initial "m." Two years ago, he wasn't saying "How are you?" either. 

"Hi, Fireman Max!" I said. "I'm great!" 

Then he kept telling me something that  I didn't understand so I finally said, "Max, I'll talk with you when I get home, can you put Daddy on the phone?"

And he said "OK!" The clearest "OK!" Like he'd been saying it his whole life. I had a gigantic grin on my face as I sat in our minivan in the parking lot. 

It turns out Max had been asking if I wanted to have some leftover pizza in the fridge for dinner. "Pizza" is a really hard word. 

But I will take "OK!" I will take every new word or proximity of a word or half a word or new syllable or new sound that comes out of his mouth. It is all progress. There is no deadline. 

If I don't think Max has it in him to improve, who will? 


  1. There's always room for improvement.

  2. You never know what will happen

  3. My little girl has a diagnosis of CP but she also has a complicated speech disorder. She's six and exactly like Max in that she can only really make vowel sounds. Sometimes we get an M or a D or a G but never at the start of words. I absolutely adore reading about Fireman Max (he and my little girl are similar in many other ways) and it is so awesome to hear about his continuing progress. Our speechies are not exactly enthusiastic about her potential for intelligible speech either but who cares? Their opinions won't stop our kids' progress and long may it remain that way!

  4. I love the, "there's no deadline". I need to remember that often as I think, "They said my daughter will walk at age three". So then I think if we don't hit that, that it means failure, but it doesn't. Its on her time, and I need to continue to work with her over the next year to try and make that happen, but if it doesn't... then we just keep moving forward.



Thanks for sharing!

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