Ella had another okay day! One episode, one major breakdown, and a day full of fatigue. I will be so incredibly happy when this medicine is fully into her system and I can have my sweet girl back, all day, every day. Plain and simple, this sucks!

Tonight I found out that necessary in-person summer school for special education students was approved in New York. Once the news broke, I was immediately getting texts, messages, and phone calls asking my thoughts regarding this development. I have openly said for the last few months that Ella has been regressing. By regressing, I mean mainly in the areas that she was receiving therapies in. I have also said the schooling that has been put in place for her is a joke. I partially blame the school for the way things have been implemented, and partially blame the state for being clueless. They had no idea what they were doing when they closed. Their clearly was no plan for Ella’s population.

Being home with three children, and a husband that works full time, there is absolutely no way Ella is getting the amount of therapy she needs to sustain the level she was at during the school year. Not to mention, I don’t have the equipment at home that they have in school, nor am I am trained therapist. Sending me pictures and narratives of what to do with her is nice, but for me, who is a visual learner, it’s not helpful. What if I turn her body in the wrong way and do damage? She won’t let me know it’s hurting until it’s too late. How do I know how hard to push her? Sometimes she screams the second I manipulate her body. I can’t know the answer to any of these things, and for that reason, therapy at home is far less challenging for her than at school, and I would say way less effective.

In all fairness, certain therapists have offered tele-visits, butttttttt they won’t work past 2:30 pm, and Steve doesn’t get up until 3 pm. There is no way I can do therapy with Ella while Jack is wreaking havoc in the house. I asked for later therapies and meets. I was told that they have contractual hours they work, and can’t work past them. I will say this, when I was teaching there were always exceptions, and I made sure I was available to my students, and parents, when they needed me. I can’t tell you how many calls I made after dinner. My contract also had a work end time. A time I never once used as an excuse, or reason to not do my job. I don’t know what the right answer is, but this can’t be it.

As much as Ella is regressing, we can’t get behind sending her back to school in July. There are just so many unanswered questions. Her therapy rooms are used by the entire school. Will each piece of equipment/toy be wiped down the way it should be before each session Ella has? She puts EVERYTHING in her mouth. Her immune system is compromised and she easily picks up what is going around. Knowing that, the decision to send her back was a frightening one.

Also, the guidelines state she has to wear a mask. That will be a fun game with her aide each day. Her record for keeping one on, before ripping it right off her face, is five seconds. There is just no way. This doesn’t mean we aren’t for summer school. We just aren’t on board with Ella going this year. It’s still too soon to tell how things will play out with covid either. Not enough has reopened to know.

The plan was, and will continue to be, to do our best to get Ella as many private therapies as we can this summer. I am looking into who provides them locally that will accept Ella, and our insurance. Scheduling all of that around Steve’s work/sleep hours could be challenging, but for Ella we will make it work. We always do.

I don’t envy the people who have to make these decisions on educating our special needs kiddos. Each child, and school, is so incredibly different, and one answer isn’t gong to be right for everyone. My hope is that they really take the time to gather information and make the best choices for as many of the children as possible.

I know some parents are really struggling at home and have it way worse than we do. I have heard from many firsthand that their mental health is suffering. If anything positive can come out of this, it’s that a plan can be put in place so that our kiddos don’t have to go through something like this again. Change is not their friend, and adapting for these kids is one hundred times harder than most other children. There has to be a better way.

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