Since the day we realized Ella was struggling, Steve and I have always done our best to make sure we found a way to get Ella what she needed. Whether that be therapy, equipment, the best care, or advocating for her at school.

Just before Ella turned three, our PT suggested that we look into getting Ella a prone stander. It would provide her the opportunity to bear weight on her legs and get her body in an upright position. Our insurance is fabulous, but not perfect. We quickly found out the stander would not be covered. It wasn’t cheap, but thankfully I was able to obtain money through a local foundation to offset the cost. When we got the stander we had such high hopes that it would facilitate her remaining in a standing position. Initially, Ella hated every second of her time strapped in it. As the years went on we found she was much happier standing at school, where there were way more things going on to keep her distracted. It has now become part of her daily therapy.

As I have mentioned before, our most frequent obstacle to date has been Ella’s education. Even being home, within the last few days, emails and messages have been shared that got my blood pressure moving in an upward direction. For one, we got Ella’s quarterly report. Understandably so, it was very difficult to assess the progress that she made this last quarter. Steve and I were totally fine with all the NA’s that we saw under each goal, and kind of expected it. What we didn’t expect were the comments from certain therapists passive aggressively taking shots at us.

Here’s the thing. I will admit I wasn’t the best teacher, PT, OT, speech, or vision therapist for Ella. (I can honestly say I thought the people sharing lessons with me weren’t either.) Some of them were giving my therapy skills way too much credit. I know that I adapted and did the best I could, based on their instructions, and Ella’s willingness to participate. Even with that, me reporting back, or not reporting back, wasn’t going to change the NA in her quarterly column. In the three months we have been distance learning, I may have personally heard from these particular therapists twice, in addition to the posted assignments. Clearly they were very concerned about checking in, and OBVIOUSLY had Ella’s best interests at heart.

From the very first second Ella’s IEP was written all we kept hearing was about the “team” working together, the “team” working to reach her goals, having an open line of communication with the “team”. We had a great team in pre-k and now that we are in kindergarten I wouldn’t even begin to call the people working with Ella a team. Everyone has their own agenda and I rarely get the feeling they collaborate. Do they communicate with each other? Yes. Do they come up with goals and strategies together for Ella? I would guess not.

It’s so much easier with CJ. When it comes to school, we follow the rules and do what is told. He’s very good about coming home and reporting any injustices he experiences, and we act accordingly. His work was plentiful these last three months, and completing it was sometimes quite the battle. Not because it was too hard, rather because CJ didn’t want to do it. These are obstacles we overcame, and ones CJ brought upon himself. Never once did his teacher set a final deadline, leaving us with some flexibility, and she was always reaching out to see how he was doing.

I know there will always be obstacles with Ella, and I know all too well how quickly they can turn into battles. All we can do is recharge in between and be ready for whatever comes our way.

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