Falling Into Change

This fall has felt a bit more hectic than other years for many different reasons. Certainly, the stress of school starting is always an adjustment, but this year more than ever as we all chose to send our children back to school, full-time, during a pandemic, and months before a vaccine was available for the 5-11-year-old population (insert celebratory dance, going tomorrow for shot 1!) People would ask me before the start of school how I felt about sending Aleck back with COVID still a threat and the Delta variant on the rise. I compared it to every single procedure he’s had done in his 10 years on earth. We trust the doctors, we make the plan, then we hope for the best. This felt no different. And so far things have been going great. The kids don’t seem to care that they are wearing these masks on their faces every single day, though their chins are definitely a tell-tale sign of trapped oil. Aleck is over the moon about his teacher this year and instead of the usual reports that “nothing” happened at school I’m getting all kinds of anecdotes and stories about how he’s doing in the classroom and who got in trouble for what. Picking him up after school is the best part of my day as he bounces into my car filled with excitement, energy, and stories practically spilling out of his mouth. Overall, this school year is off to a great start and we can only hope that these kids get to stay in school all year long.

Since Aleck is in 4th grade this year it was time for his re-evaluation for his school plan. Each of the professionals on our team, occupational therapy, physical therapy, special education, psychology, and his teacher, had to do deep dives into who Aleck is as a student, what he needs in order to be successful at school, and what services should the school continue to provide Aleck to ensure he remains a thriving student. In short, it’s time to see if he still needs his Individualized Education Plan (IEP), or if he can be dropped down to a 504. We went through all of this when Aleck started 1st grade and it was a stressful rabbit hole. At the time Aleck was not responding well to his teacher and was constantly having to be prompted in order to stay on task. I believe one report quoted 3 times in a 15-minute period. The recommendation was made then that Aleck is dropped down to a 504 since the biggest difference, as far as we can tell, between the two different plans, is the special education component. However, we had heard all kinds of horror stories about families having their IEPs taken away and being unable to get the type of services that their children required to continue a successful education. We both felt panic-stricken when this was proposed in 2018, and we felt even worse this time around. After all, Aleck, like so many other kids, hasn’t been in school full time for the last year and a half. But the main guideline of having an IEP for students is to fill an academic gap. And with all A’s on his report card for this year so far he’s definitely not showing any problems keeping up with the curriculum. This means he won’t be getting special education services, which when they were implemented in Kindergarten, we thought were kind of a joke anyway. I remember the case manager and I laughing on the phone together as she explained that any student with an IEP is required to have special education services. Aleck was the last student that needed help keeping up intellectually with his classroom, and the same is true today.

Still, it’s a drop-down on the ladder of Chicago public school services, and the fear of the unknown made us both lose our cool. A lot is going to change for Aleck’s school life in the next three years when he is up for his next re-evaluation. That’s 7th grade and that’s a big leap from 4th. In the end, we got everything we wanted to be written down in the 504 plan. He still has his paraprofessional/aide, he still has occupational therapy, he can still get help with the bus, he still gets extra time transitioning to classrooms, he can still use the elevator, and we added in a quarterly consult with special education. There was a bit of a tete a tete with the physical therapist, claiming Aleck was doing so well he was no longer going to pull Aleck from class and instead use his minutes to consult with the teacher on how to make the room and materials more accessible for Aleck. In the end, we agreed to the 504 as long as PT remained the same, 30 minutes a week, and that the goal is for Aleck to be able to get up and down off the floor with only 50% assistance. Since services provided in school are only meant to meet the needs of the school day we had to argue that even though circle time has long since been a thing of the past, the students are still asked to sit down in the gym, to sit down in hallways, and in the case of an active shooter drill, get under their desks. Weighing in at a whopping 88 pounds, Aleck needs to be able to meet his paraprofessional halfway otherwise K is definitely going to need a backiotomy before Aleck hits middle school.

Speaking of backs, we met with Dr. Altiok over at Shriner’s last month and he brought up a concern with some minor curvature in Aleck’s back. They took X-Rays and it seems like there might be a small curve that we will be keeping an eye on as we go back in six months for additional X-Rays. He also wants Aleck to wear a knee immobilizer for one hour on each leg every day. We gave that a go for the first two weeks and it just doesn’t fit into our life. With every new piece of splinting or exercise there’s always this struggle to get it scheduled, it has to fit perfectly into the routine, or you have to design the daily routine to fit with the new device. This is difficult and I’m not even sure it’s worth the amount of effort. Especially now that Aleck is in aftercare at school three days a week, has talk therapy once a week, and we haven’t even set up this OT and PT with Shriner’s yet. I mean, he’s at a point right now where he’s not even getting his beloved tech time on a regular basis.

We were going to meet with Dr. Swaroop but she’s been out on medical leave so instead, we met with another orthopedic surgeon on her team, Dr. Jill. The issue on the table was removing the hardware from Aleck’s leg. It’s her opinion that the hardware should stay, it’s not in a place that will interfere with bone growth like the hardware in the hip was, and the last time we removed it he broke those bones barely 6 weeks later. We agreed and decided that to try to prevent another round of tibia/fibula surgery we will let the screws stay. Then she watched Aleck walk with his AFO. Since right before lockdown Aleck has had a carbon fiber ankle-foot-orthotic (AFO) that really gives him only very light support. Originally the idea was that an SMO (Supramalleolar Orthosis) inside the AFO, but then both Altiok and Swaroop decided that he looked good with only the AFO. But Aleck has been walking funny. I’ve been looking at old videos of him before his major surgery and he didn’t walk this hunched over back then. Plus we are concerned about this curve happening in his back. Dr. Jill pointed out that Aleck’s right ankle and foot are collapsing in on themselves, therefore the AFO is not giving him enough support in the right place. She put in an order for a new AFO and we are currently waiting on insurance to clear it so it can be made. The collapsing of his foot and ankle could be the cause of the curve happening in his back. Right now I’m very anxious to get better support for Aleck’s right leg and am hoping that this will help to correct his gait and his posture before we do any more damage to his body.