We’re approaching a significant birthday in our household. No, no one will soon be able to drive or drink alcohol or vote for the first time. No kiddos are entering double digits just yet. No grown-ups are hitting a new decade.
But on May 23rd Toby will be turning three.
I know right. THREE!
You have no idea why three is significant do you?
Then you must not have a child with special needs.
Three, in the life of a special needs child is a big deal because three is when they age out of the state’s Early Steps program. (Different states have different names. Here in Florida it’s Early Steps. When we lived in Texas it was Early Child Intervention. In North Carolina, where we lived when it was just Kaden who received services, the title was the biggest mouthful: Children’s Developmental Services Agency.)
Toby was six months old when we moved to Florida. He began speech therapy services by the time he was eight months old. He started play therapy shortly after that. And occupational therapy shortly after that. I can still remember his very first speech therapy appointment. The therapist casually used the words, “sensory defensive,” and I was almost brought to tears. Here was my beautiful baby boy. He could sit up. He was on the verge of crawling (and did by the end of his eighth month.) He could exchange an object from one hand to another. He smiled and cuddled and seemed genuinely affectionate. Ok, maybe he had a Fragile X diagnosis, but I’d gotten used to his one and only label because overall he still just seemed like a baby who could do baby things. Now suddenly here was another label. I had officially entered the world of tests and labels. I had a baby who wasn’t responding “neuro-typically.” I had a baby who wasn’t doing enough baby things. I made it through the appointment, but I cried in the car.
It got better.
This world of tests and labels really was out to help my boy. My skin thickened a bit. We forged ahead.
We eventually grew to love our speech therapist. And our play therapist. And our two occupational therapists. But now we have to say goodbye. Therapists who have known Toby since before he could crawl! Therapists who used to carry him back to their rooms but eventually walked hand in hand with him to his scheduled activities. One even came to his second birthday party.
If we kept up their services we’d be paying out of pocket, 100%. It would count toward our insurance deductible, but that’s so high, we’d never hit it and see insurance kick in. Instead, we are saying our goodbyes.
And transitioning.
When a special needs child hits the age of three he enters the world of school board services. Last week we trekked up to the Fort Pierce offices for Toby to be tested. In another week I have my follow-up appointment to review their assessment and find out their initial plan for Toby’s new services. And then, because Toby’s birthday falls with two weeks left on the school-year calendar, he may even start that new plan before summer begins. We’ll see about that. It’s a lot of change for a kid who faces the Fragile X symptom of anxiety particularly heightened by changes and transitions.
He’s not the only one hitting some anxiety about these transitions.
This Mama Bear wants what’s best. I get that the school board has many kiddos with many needs, but this is MY kid. I want a service plan that best meets his needs. Period.
And I hate that he won’t have services through the summer.
Then again I also realize that because he’s MY kid, ultimately it’s MY job to keep up his services. Although I can’t financially fill up his schedule with private appointments, I can take an even more active roll in his day-to-day at-home therapies. Play therapy has always been Friday mornings for one hour at the house. We aren’t going to fill that hour with Sesame Street or independent play. We’ll have puzzle time and matching games and sensory play and finally give riding our very ignored tricycle a better go. Yes, these are things we sometimes do, but not in a regularly scheduled way. Pushing Toby, is something that happens inevitably because he is the youngest in an active family. Will Toby play in the ball park and handle ball park noise and concession smells? Yes, he will, if big brother has a game. Will Toby get squeezed into a life jacket and tossed onto a kayak to be glided along inlet waterways reflecting back Florida’s glaring sun? Yes, he will, if that’s what Mom decides we’re doing to celebrate Mother’s Day. And he goes with it. Fragile X or not, like most kiddos third in the line up, he is one helluva trooper. But… that doesn’t mean there isn’t room for more structure and stimulation of a more deliberate design within our week.
Yup, this mama gets to add “therapist,” to her chef/housekeeper/chauffeur/nurse/party planner/teacher/activity coordinator/family photographer/videographer job title.
Have I mentioned that I’m now 30,000+ words into the novel I’m not writing?
Oy.
And the other thing about three… The baby title is a distant memory. Toddler doesn’t even fit. He is officially a preschooler.
High chairs, diapers, and cribs are not the trappings of a preschooler.
We have some more adjustments to make.
We still have a high chair in our dining room, but Toby sits in a regular chair now for most breakfasts and lunches. His bed is still set up like a crib, but he sleeps in a big boy bed when we travel and the plan to convert his crib to a toddler bed is in place. (After his party weekend we have a little paint update and remodel scheduled for his room).
As for the diapers…. He hates the potty seat. There is much, much anxiety surrounding his potty seat. For months now I’ve been asking him if he wants to try his potty seat. No way. I have tried bribes. Still, no way. That boy is getting a potty chair for his birthday and finally trying on the new Thomas the Train underpants that have been waiting and waiting for him in his pajama drawer. Oh yes he is. Not saying that it will work. Just saying we’re giving it a more concentrated effort right as soon as we turn that three corner.
Kaden and Blue started swimming when they were three.
Swim lessons already scheduled.
Three is also the age when I will consider meds. I will start that discussion with his pediatrician at his three year appointment, pay much, much attention to this at the Fragile X conference in July, and then, if I think there is something that will just help bring things down a notch, calm that distracted brain a touch, we’re trying it.
I’m telling ya. Three. Is. BIG.
At his last Friday play therapy appointment his therapist asked what my goals were going into his school board IEP (Individualized Education Program). I looked her, wondering if she’d think I was crazy but answered, “That he be mainstreamed by the time he starts kindergarten.” She nodded. She hopes for that too.
We’ve got a lot of work to do.
Meanwhile I’m still making my truffula trees and attending to Seuss party details.
Because, it’s still, well, just three.
Toby’s three-year-old world may now include words like school board, IEP, potty training, meds… but it still has to be a world of whimsy. A world with silly tickle fights, cupcakes, cotton candy, story time and snuggles. A world with Sesame Street.
One day at a time, right?
(And then before I know it, he’ll be four.)
Toby during our recent kayak adventure. Is it just me, or is there a look of Old Man and the Sea determination in his eyes? In any case, he was ready to get back onto the water after a brief island stop.
