What do you do?

Here is the situation. A couple weeks back my wife was notified by Shane’s school administrator that his Para would be absent for a week in March and wanted to know if it would be OK if Shane missed that week of school. Initial reaction was What?, are you crazy? How does that work? Would you ask the entire 4th grade to take a week off if the teacher was absent??

We know that kids with special needs take more time , more resources, usually a special person to guide them through the day however let’s try to ensure we are giving a positive opportunity to each and every child. It’s hard in the case of a rare disease kid as they end up missing SO much school as it is with all the doctors appointments, follow up, tests, check ups -etc. it’s hard to tell what is exactly the correct answer.

As it ends up we are fighting for a solution - at least meeting somewhere in the middle. I guess I hope it’s not about the fairness or equal - I still struggle with this in terms of special needs but more so the opportunity to learn, experience, to have a different kind of day then when your home with your parents.

In the end we are advocating for our child who is non-verbal, blind, has learning, physical and developmental challenges but the upmost ability to be kind, show tremendous grit, resilience and continue to keep every day in the present.

JB