Holy crap! You know when you are so busy living each moment of the day that you just don’t have time to process those moments until you lay your head on the pillow? That was me today, only the events of the entire week all came flooding back.

Jack’s been sick most of the week. Fever. Cranky. Teething. Come to find out he had yet another ear infection, which is not good. For two nights all he wanted to do was scream. Nothing really helped. Not mommy cuddles. Not daddy cuddles. Not CJ acting like a fool. Tylenol helped with the pain but only for a couple hours at a time. It was a waiting game for the antibiotic to kick in and that felt like an eternity. The good news is that other than refusing naps, Bean is back to his old self again. One fire extinguished.

Onto the next. Home schooling is becoming increasingly stressful with CJ. He’s tired of using the tablet to complete his work, and despite trying to get him in a routine, it’s virtually impossible. I am single handily trying to care for three kids most days while hubby tries to sleep. Even with the two of us, it’s hard to divide yourself in three different ways. He also misses his friends and teachers and is becoming more open about sharing those feelings. Despite the challenging week, we managed to finish all of his work. I am calling that a big win for BOTH of us. Fire two…extinguished.

The biggest blaze of the day came when Steve and I virtually attended Ella’s IEP meeting. All was well until the end of the meeting when recommendations were given for the frequency of therapies Ella should get if school resumes this summer.

Let me first say how unbelievably hard it is to do any of these recommended therapies at home during quarantine time. There are so many factors to consider. Ella’s mood. The boys moods. Whether I have the tools I need to do what they want me to do. Time of day. Difficulty of activity. Steve and I are doing the best we can but Ella is not getting the thirty minutes sessions she is getting at school, at home. Certainly not the three or four times a week they recommend in her IEP. The fact that no one (at a higher pay grade than the district) gives a shit all these kids are missing their therapies brings a whole new level of anger into my life.

That being said, I do understand that under normal, non pandemic, circumstances summer school is meant to maintain therapies, and in a lot of cases frequencies are decreased. I also understand that the decision is made on a student by student basis. Two of Ella’s therapy frequencies remained the same, while two were decreased by one day. Physical therapy and speech being the two that are decreased. Ella is non verbal and non mobile and these are the two they pick to decrease?

I pleaded my case and was given multiple reasons why they were decreasing services, none of which felt valid to me. One of them being they can’t “know” that she regressed being at home and just give her that extra day over the summer because they assume she did. Speech? Ok. Maybe. PT? Four months of at home mom and dad therapy and you think she is going to progress? Negative. I know my kid, but even if i didn’t, I do have common sense. Funny thing is last summer no therapies were decreased. When I questioned that, I was told it was pre-school. It was different. Why? Is it different because the county is paying for it and not the district? Ella still can’t do now what she couldn’t do then. 🤔 Or if her Medicaid is paying for services, then why would the district care how many times a week she is seen?

It’s all so frustrating and at the end of the day I am not sure why parents even offer opinions in these meetings if what they feel isn’t taken into account. The final decision is made by the district with the bottom line being, “let’s just wait and see.” In some circumstances I believe that is appropriate. In this circumstance, with the current climate, I think regression for Ella, and a lot of other children, is a given.

So, before bed tonight I will once again be thankful for my blessings, take a ton of deep breaths, and wake up hopeful tomorrow is a better day! It’s all we can do. Move forward, one day at a time.