Jake's Journey with Apraxia

And the Friends We Met Along the Way

Last week my family and I went to Blue Mountain Beach in Florida. Travelling with kids in general can be far from the R&R we all so deserve, but when you have a special child, a whole extra set of challenges (and laughs!) come about.

Here are a few of ours …

1. Cuteness … There are very few perks when you have a child with apraxia, but one thing I am enjoying with my 5 1/2-year-old are the funny mispronunciations that come out of his mouth. A neurotypical child would have been at this stage three years ago, but it’s kind of cool to have it delayed. I appreciate it more and also feel proud that I can laugh at these words (even with other people!) without overanalyzing and correcting. For example …

2. Allergies … Jake’s allergies are improving and he was able to eat a chocolate ice cream cone. Big deal for this little guy! I think I heard the angels singing the Pharrell Williams’ “Happy” song while he ate his ICE CREAM with a FORK and was insistent on NOT eating the BOWL (cone).

We also got to eat at a seafood restaurant for the first time in three years. I brought food for Jake to eat in his lunchbox, but he didn’t break out in hives when he was around the smell of fish. This was a huge step for us and I was a nervous wreck the whole time.

3. The dreaded conflict … We’d been in our condo for about an hour when a problem arose. Jake had gone down with his ten-year-old brother to play baseball with a group of kids who were out on the grassy common area. I was on the balcony watching and making out a grocery list. I glanced down and saw an older lady scolding Jake and motioning for him to come to her ground-floor unit. I told my other son to go help Jake as I walked down to see what was going on.

Turns out, Jake accidentally hit a four-year-old little girl as he was batting. The older lady apparently was the grandma and wanted Jake to come inside to apologize to the little girl, but he refused … mainly because he freezes in conflict.

Maybe my sense of perspective is a little twisted, but I was actually glad that Jake froze and didn’t talk or go with a stranger. I think I can mark this down as another apraxia perk … does not talk to strangers! Also, I was proud of my other son who said, “Bring her out and I’ll make my brother apologize.” Great job boys!

By the time I got down there the grandma was inside and the mom was outside with her daughter. It couldn’t have been that big of a deal because there was no mark on the girl and she wasn’t crying, however I did understand why it was important for Jake to say that he was sorry.

But, Jake just shut down and was crying and scared. I wanted to just tell that Mom who was looking at us with her disapproving glare … “Look, he’s only been talking for a little over a year. He needs extra help. He may not *look* like he does, but he does. He’s not that confident with his voice yet. When he wasn’t speaking to the other lady, it wasn’t because he is bratty or rude. And when I tell him to say ‘I’m sorry, it was an accident,’ to someone he doesn’t know, that’s literally very difficult for him to do.”

Those are the words that were going through my head, but not the ones that I spoke. I just didn’t want to get into it with her and I didn’t want either he or I to start using apraxia as a crutch or an excuse. So, I just spoke for him. He wasn’t acting nasty, like he was refusing just to be spiteful, and I just went with it.

I explained that he said he didn’t see the little girl and it was an accident and that he obviously feels terrible that he hurt her and that yes, he was sorry. Then I asked, “Aren’t you sorry, Jake?” and he nodded his head. The mother in turn took some of the responsibility saying her daughter shouldn’t have walked out to an area where boys were playing baseball. Jake and I chatted about the situation on the way back upstairs and all was good.

4. Book Love … I read the best book on this trip! I’m always so buried in nonfiction for Jake’s issues, I don’t read fiction nearly as often as I used to. The Art of Hearing Heartbeats is a love story about two people who have disabilities (blind and crippled) and how those issues make them uniquely awesome people in other ways. It’s a book about doing the impossible, optimism, hard work, faith, and discipline.

heartbeats

Have a blessed Easter weekend!

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