In the Blink of an Eye

Things really can change in the blink of an eye in Mitoland. About a week ago, Will randomly started stuttering. It came out of nowhere. He hasn’t been sick, nothing.

Of course I have tried to connect about 100 things with the onset of this stuttering… I was switching up stuff with the Miralax (BTW, that didn’t work, he needs to stay on it), he had two BM accidents, he’s been sleeping later in the morning, it’s hot… you name it and I’ve tried to correlate it.

I have noticed it’s mostly around vowel sounds like “I” or “Elmo” and it’s usually at the beginning of a phrase or sentence, not necessarily in the middle. But, it has happened in the middle, just very rare.

I can’t correlate it yet to being tired, hungry or overstimulated.

I’m going to keep a diary this weekend and try to record the time, the letters and where it is in the sentence to try and make some sense of this.

From the research I started this week, it appears that there are two types of stuttering: Developmental and Neurological. (Duh). This seems to over a good overview of the differences. http://www.stutteringhelp.org/DeskLeftDefault.aspx?TabID=81

I thought this was very helpful to describe symptoms between the two. Some of the patterns that set the two apart include:

• Neurogenic stuttering may occur at any point in the production of a word, rather than primarily at the beginning, as is common with developmental stuttering.
• Neurogenic stuttering often occurs on any type or class of word anywhere in a sentence rather than being linked to content words such as nouns, verbs, adjectives and adverbs.
• Neurogenic stuttering may occur in any type of vocal behavior, including singing and repeating well-learned passages, such as the pledge of allegiance. The disfluencies may occur with equal frequency in any type of a speaking situation.
• Neurogenic stuttering is often not alleviated by the same conditions that significantly lessen developmental stuttering. These include choral reading, singing, adaptation (repeated oral reading of the same passage) or speaking while under auditory masking or delayed auditory feedback.

So, this is also why I’m going to keep a diary this weekend to see if I can discern anything. Likely, we’re going to add speech therapy into the mix asap. I firmly believe in early intervention, so hopefully this will help curb it.

You know to the average eye, Will looks like a normal little guy. Maybe that has made this whole Leighs/mito “easier” because he’s not in a wheelchair or showing obvious signs of other things. Maybe that’s why this stuttering thing is hitting me hard. It’s yet another outward display and sign that he really is sick and that we’re going to lose him.

To be constantly reminded of his physical limitations is one thing and we’ve adjusted. Now, it’s a constant verbal reminder of other limitations. His teacher told me that he was trying to say the name of one of his many girlfriends, Ella, and he simply couldn’t get it out. You could tell he was frustrated.

I had just, literally in the past month, finally gotten to a really good place. Neil and I have lost about 8 pounds (each of us), and I felt like we were in a good groove. My mental outlook has changed literally overnight. Hopefully the weight loss will continue, but Will’s health is just so fragile. It’s easy to forget when things are going so well.

Maybe things will improve, maybe they won’t. At least I’ve gotten to hear his beautiful voice say I love you Mommy and see him walk and enjoy life. That’s a gift I can really focus on enjoying today.