I thought about skipping this post, or at least pushing in back a week or two, because there really hasn’t been much going on around here lately. At least not while I’m awake. I’m still working nights so I’m in bed by mid-afternoon and wake up when the rest of the family is in bed. It’s a weird schedule that I just can’t get used to. My body just can’t adjust to working when it’s dark and sleeping when the sun’s out. Maybe it never will.

Back to School Update

Probably the biggest thing that happened this past month was that the school district sent out their plan for school in the fall. As of right now, the plan is to have all kids start the school year remote, with the goal of “having students return to in-person instruction (with significant safety modifications) as soon as it is safe and logistically possible to do so. A District Pandemic Advisory Team will monitor pandemic conditions, discuss solutions to stakeholder group concerns and provide ongoing input to the District on next steps, including assessing the viability of returning to in-person learning. We will continue to keep our families and staff informed as we navigate this unprecedented and unpredictable time together.”

One of our concerns when they shutdown school in March and went remote, was that James was no longer receiving his much-needed therapies. In a separate email from the Assistant Superintendent of Special Education, he assured us that the special needs kids weren’t forgotten.

“I am sure by now you have heard the news that the District will begin the school year in a remote learning format. While the safety of our staff and students remains our number one concern, we know that students with disabilities can face some special challenges learning in this format. I wanted to take this opportunity to explain how remote learning for this school year will be different from what was provided in March through May of last school year.

The school members of your child’s Individualized Education Program (IEP) or Section 504 Plan team will be in contact with you regarding the services for your child. Together you will make a plan around how the services listed on the IEP or 504 Plan will be provided and the schedule that will be followed in order to do so. Services will be provided live via Zoom and/or Google Meet. These services may be individual or in a small group. The staff will also provide the appropriate accommodations and modifications as listed on the IEP or 504 Plan, in a manner that makes sense for a remote learning format. The provision of services for our students with disabilities will occur in a more systematic manner than was done in the spring. If your child was in the midst of an evaluation, the team will be scheduling times with you to complete the assessments, either in-person or remotely, and hold the team meeting.

Our priority has always been having our students return to in-person learning. We know that this is exceptionally important for our students with special needs. As soon as we believe it is safe, we will begin scheduling times for students to come into the school for individual or small group therapies even before we return to full in-person instruction for all students. The staff is eager to have students in front of them again.

Please feel free to contact your school principal or your child’s case manager regarding any questions you might have. I am also happy to help in any way I can. We know that these are challenging times. We look forward to continuing to work with you to do our best for your child.”

~ Assistant Superintendent of Special Education

Because of James’ respiratory issues over the past couple of months, we weren’t planning on sending him back to school if they decided to re-open the school. We’re glad that they are staying remote for now. We’ll have to wait and see how things go after school starts and hopefully, he’ll be able to get at least some of his therapies.

We are really in between a rock and a hard place here. As Stacy vented on Facebook:

“He needs to get out of this house & back with friends & therapies… so badly needs PT but he is always at risk with anything he does now with all this covid shit do we risk it?? He gets suctioned sooo much so he can’t wear a mask. You then risk the “air born bullshit” that could get on his suction catheter. James has never been out of school this long and I fear his immune system is going to go back to being low. He has been doing so good at school with his friends, therapies, & illness has been so low. He has gotten more sick since being with me here. I love him and he loves me, but he has to be getting tired of my mug 24/7.”

~ Stacy

I don’t think James will ever get sick of being home with his momma, but he does need to get back to school, if for nothing else, for the therapies. Not at the risk of his health, of course. We’re just going to have to wait and see how things play out once school starts.

So what else happened over this past month? Let’s see. James went to the dentist to get his teeth cleaned. Many people wonder, “well, if he doesn’t use his mouth to eat, why does he need his teeth cleaned?” Because he doesn’t close his mouth, his teeth have a tendency to develop a film on them and they sometimes become discolored. Stacy found some special toothbrushes that attach to his suction machine that she uses to brush his teeth from time to time, but they still need to be cleaned. It also gives the dentist a chance to take a look at his teeth to see if there are any concerns.

He was fitted for new AFOs and wrist guards.

His one-on-one school nurse and one of his teachers stopped by to hang out and chat. They sat on our back patio where they could socially distance and enjoy the breeze. Look how tall James sits with his straightened back.

And he got a haircut. Stacy and I both envy this kid’s hair. We joke that our hair is falling out and landing on his head!

I just realized as I was about to publish this post that we’re in August now. That means that someone has a birthday coming up. Unfortunately, we probably will not be having a normal party for James this year, but we are thinking of ideas on how to celebrate this awesome kid. All of his birthdays so far have had a theme, and we’ll be damned if this crazy pandemic is going to change that. Check back at the end of the month to see what we came up with.