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When Do You Know It's Time to Pull Your Child From School?

I knew eventually I would find myself asking fellow parents who have been in our shoes this very question. However, I never thought it would be so soon. My son, Carter, is currently 9 years old and he’s pretty medically complex.

Over the past year and a half since COVID started, Carter has been in home hospital. This is a program districts in California offer for children who may be immune-suppressed or their doctor believes they are too high-risk to be attending in-person school. Legally, as required by the state, we are to get a teacher to come to our home five hours a week and the allotted therapy time in his IEP.

When we first came to the district, Carter was 3 years old and accepted into their special day class under other health impairment (OHI) due to chronic pancreatitis. At that time, we were focused on getting our boy back to an average level of speech and skills so that he might be able to join a typical class. We had no idea a new diagnosis was to come and days before his fourth birthday, we were shocked by receiving the diagnosis of Sanfilippo syndrome. This new diagnosis gave us answers to exactly why he had a speech delay, developmental delay, along with so many other things. We quickly realized the goals we had set out for him were unrealistic and geared up to make achievable goals.

Home hospital is excellent theoretically. We heard of it when the district first suggested the possibility when Carter had a new central line placed around four and a half. As you can imagine, the Sanfilippo diagnosis completely turned our world upside down, and it opened our eyes to the fact that something we won’t have with our son is a lot of time. We were tempted to put him on home hospital then; however, socializing with his peers was more important. We had to take a step back and realize although we would love nothing but more time with him at home, it was best to send him to school. Fast forward to today – we’ve officially been on home hospital since August 2020. Unfortunately, the district could not bring someone into our home for in-person services until this summer; four months after they brought all students back on campus, to be exact.

Over the last year and a half, Carter had about 150 words to now maybe having 20. He has lost many skills and abilities, and we’ll never know if it was the progression of the Sanfilippo or if it’s the lack of support and services that many, if not most, children with disabilities are seeing due to COVID. If I had to guess, though, I would say it was the second.

In last year’s IEP, I had a complete breakdown. I remember begging the district for help, assistance, ideas, anything; I just needed help! At that time, they had already brought his special day class back on campus for in-person learning. I was met with — nothing we can do at this time but only offer virtual therapy. I remember sobbing as I abruptly left the meeting shouting, “You say no child left behind, what about my son? That’s exactly what you’re doing. You’re leaving him behind!”  

Of course, as any parent would, I fought. I fought for my son and his rights. I fought for them to do the right thing, not just to let him slip under the radar. This was not fair by any means, and this was not the first time I would go head to head with the district over it. Speaking with other parents I know we’re going though the same thing the one thing we all collectively saw was a lack of support and services for our children. The people in charge say, “don’t worry we’ll make it up later in the school year.”  But what about those children who will not be able to make it up?  What about those children who have already lost and will not be able to regain those skills?

Fast forward to today; we’re still waiting on getting a teacher for him to come into our home for the five hours a week. We’ve finally scheduled speech and occupational therapy weekly, only a month after school has started. Our goals have drastically changed from socializing with peers and gaining skills to now focusing on maintaining his current skills and abilities. However, if I am honest, he’s not getting much, if anything, from our therapy sessions from the district. In a typical session, I am blocking his behaviors for the entire session, so the therapists do not get hurt and end with them just giving me ideas on things to work on throughout the week, which I am grateful for, but it’s not the same. And if I am candid, I think I am really just keeping therapy going, so he is not just seeing and socializing with our family all the time.

a mom laying with her terminally ill son in a hospital

Knowing that we don’t have a lot of time with Carter, I want to pull him from school to make as many memories with him as possible. I know I can find other ways to incorporate therapies and keep him stimulated and moving, but I also know that’s also not fair to him. I am not a a certified therapists, just a mom. I am just tired and at a loss. I fought for something he deserves, something he needs, and now, I am not sure if he’d even benefit from it at all because there has been such a significant regression in various areas. And with that, I am left constantly asking myself, when do you know it’s time to pull your child from school?

 

Photos submitted by contributor.

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