The 3rd birthday milestone, and what that means for Leo
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Lewis/Laczko family
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Lewis/Laczko family
Leo turned 3 years old last week. That's a milestone of its own for him — I told my grandmother it felt like we've already been through a decade with Leo — but in Tennessee, it's a different milestone.
Since he was 6 months old, Leo's had all of his therapies (developmental, physical, occupational and speech) covered by a combination of private health insurance and TEIS (Tennessee Early Intervention Services). When you're in the TEIS system, a child turning 3 represents a new opportunity: They're evaluated by the Metro school system to see if they qualify to begin receiving special ed services through Metro.
TEIS' goal is to graduate its kids. They don't want kids to always need therapies, right? The tough part is that through Metro, a child might not qualify for all the interventions a parent/guardian believes they need.
It's been a lengthy process, but the short and sweet version is that that's where we've landed with Leo: We're going to amp up his subsidized therapies until the fall, at which time we plan to (gulp) apply for him to enter the school system.
The reason is this: Through his Metro evaluations (a many-stepped, many-meetings process), they've determined he isn't sufficiently developmentally delayed to qualify for physical, occupational, or speech services. He's made such terrific strides in those areas.
Where he does need support, and where they're concerned by the difference they saw in him, is his social/emotional/cognitive state at day care. There, he's a completely different kid.
At home, he counts to 18. Sings the ABCs. Tells us what he wants and needs and likes and doesn't like. Follows simple instructions (as much as any 3 year old does).
At day care, he doesn't talk. Stands to the side. Rarely interacts. Observes. When given instructions, he watches for his peers to model the requested action before he seems to know what to do.
The reason makes sense: Without his left frontal lobe, which is responsible for executive functioning, he doesn't understand how to apply his home skills, with his preferred people, in different scenarios. In other environments, he has trouble with reasoning, paying attention, organizing, planning, social context and switching his attention between two tasks. His diagnosis and medication adversely affect him in the school environment, and getting him into a classroom with proper special ed support would address that in a way that his current therapies — which are one-on-one — simply cannot.
There are two options for families who decide to leave TEIS and enter Metro at this age: either a daily general ed setting with a special ed teacher who comes in weekly, or continuing day care and doing a separate twice-weekly 90-minute special ed session.
Since he was 6 months old, Leo's had all of his therapies (developmental, physical, occupational and speech) covered by a combination of private health insurance and TEIS (Tennessee Early Intervention Services). When you're in the TEIS system, a child turning 3 represents a new opportunity: They're evaluated by the Metro school system to see if they qualify to begin receiving special ed services through Metro.
TEIS' goal is to graduate its kids. They don't want kids to always need therapies, right? The tough part is that through Metro, a child might not qualify for all the interventions a parent/guardian believes they need.
It's been a lengthy process, but the short and sweet version is that that's where we've landed with Leo: We're going to amp up his subsidized therapies until the fall, at which time we plan to (gulp) apply for him to enter the school system.
The reason is this: Through his Metro evaluations (a many-stepped, many-meetings process), they've determined he isn't sufficiently developmentally delayed to qualify for physical, occupational, or speech services. He's made such terrific strides in those areas.
Where he does need support, and where they're concerned by the difference they saw in him, is his social/emotional/cognitive state at day care. There, he's a completely different kid.
At home, he counts to 18. Sings the ABCs. Tells us what he wants and needs and likes and doesn't like. Follows simple instructions (as much as any 3 year old does).
At day care, he doesn't talk. Stands to the side. Rarely interacts. Observes. When given instructions, he watches for his peers to model the requested action before he seems to know what to do.
The reason makes sense: Without his left frontal lobe, which is responsible for executive functioning, he doesn't understand how to apply his home skills, with his preferred people, in different scenarios. In other environments, he has trouble with reasoning, paying attention, organizing, planning, social context and switching his attention between two tasks. His diagnosis and medication adversely affect him in the school environment, and getting him into a classroom with proper special ed support would address that in a way that his current therapies — which are one-on-one — simply cannot.
There are two options for families who decide to leave TEIS and enter Metro at this age: either a daily general ed setting with a special ed teacher who comes in weekly, or continuing day care and doing a separate twice-weekly 90-minute special ed session.
Knowing that where Leo needs the most help is in learning how to be a student among his peers, we've still decided to wait instead of immediately putting him into a school program.
There are many reasons why we're waiting:
- If we chose to have him start with Metro now, his therapies would immediately stop being paid for. They'd put his Metro student ID (which we had to apply for during this process, and which required paying to have a new birth certificate created and shipped because we couldn't find his; nothing is easy, is it?) into the system to find a school with an open seat, and we'd have no input about where that would be. That means we couldn't anticipate where he'd go to school, and the location might not work for our family. Yet at that point, there would be no going back to TEIS.
- Leo's birthday falls mid-year, so he'd be entering halfway into a school year with kids who've already been in the school routine. He's been in day care, but the routines and expectations aren't the same.
- Most of the kids in these programs are older than he is.
- Many of the kids in the twice-weekly sessions are either nonverbal or have limited communication skills. That wouldn't necessarily strengthen the skills we're looking to encourage in Leo.
- Leo wears SMOs braces like these, which he outgrows every 6-8 months. If we can stay in PT until he outgrows his current pair, then we can get the new pair paid for before he moves into school.
Now, once Leo does one day move into a general education setting, we can always opt to pay for additional therapies ourselves, if we're able to afford it. Yet earlier this year, I applied and was accepted for the Katie Beckett Waiver — a state program for kids with disabilities or complicated medical needs. These families get up to $10,000 a year in services to care for their kids, and this would help go toward Leo's therapies, SMOs, and any other devices or supplemental aids deemed necessary as he ages.
However.
There are so many families in need and simply not enough available slots to receive money. TennCare worded the letter like this:
You asked us to look at you for Katie Beckett. To get Katie Beckett, you must meet the Level of Care Requirements AND there must be an available Katie Beckett slot. Our records show you do meet the Level of Care requirements. But, you can't enroll in Katie Beckett because there are no slots available.
And so, Leo's on the wait list and we simply wait for his name to come off the wait list, which hopefully it does before he ages out of being able to qualify for Katie Beckett, at age 18. We don't have to reapply for this waiver every year, but he will need to medically qualify every year.
It's hard to overstate the amount of medical records, applications, enrollment processes, due dates, updated doctor letters, rotating case managers, meetings that have to be in person for wet signatures, meetings at which Leo is legally required to be present — and this is, at times, deeply overwhelming.
It means requesting time off work, which means lost wages.
It means pulling Leo out of day care for the day, which means lost learning opportunities (in addition to lost wages).
It can be very lonely being a parent of a medically complex kid, and we're grateful to the friends and family who've let us talk through this minutiae. It's gratifying to be seen and heard, so thank you.
It's also gratifying to see Leo embrace the possibility that there is for him in this life. A recent exchange:
Mama: "Don't lick your sister."
Leo: "Why not?"
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