If you are the parent to a special needs or medically fragile child you are well aware of the ways in which the extra needs of one child stretches into every area of your life,- effecting even the smallest details of your family. Undoubtedly, the siblings of these extra-special kiddos deserve a gold medal; their life often changes in such a drastic way due to the needs of their sibling(s). And it's not that we feel sorry for them necessarily, but we as parents understand the impact that this journey can have.
Last year, we had several emergent scenarios that took place throughout the school year due to the health of our youngest child-- specifically, we deal with seizures, which means there is no notice and things can change in the blink of an eye. Because of that, as this school year approached I began to write a letter to the teachers of my healthy kiddos, trying to help them understand the way in which our every day life can potentially be turned upside down in a single moment. I was so inspired by this letter over at the Mighty that I thought I would share mine with you as well.
To the teacher of my daughter, the sibling of a special needs child:
We are thrilled that our daughter will have an opportunity to learn in your classroom this year! She is such a great kid and we anticipate watching her thrive as the year goes on.
However, I wanted to make you aware of our situation at home, a situation that could, at times, affect her school life as well. Our daughter is the sibling to a medically fragile child. Her younger sister has a severe form of epilepsy called Dravet Syndrome. (Learn more about Dravet Syndrome here)
What this means for our family is that at times our ordinary days will quickly turn to emergent chaos.
It means there could potentially be nights when mom had planned to help with homework, but she ends up on an ambulance ride instead.
It means there could potentially be mornings when mom had intended to make lunches, but a seizure struck before we could make it that far.
It means there could be exhausting times where we stumble into school late because we didn’t get home from the emergency room until late the night before.
Or evenings where she is abruptly removed from home to stay with an aunt or grandparent because mom and dad rushed to the hospital unplanned-- weeks when mom and dad are out of town for specialist appointments and so the normalcy of life is a bit off kilter.
Sometimes she may show up to school extra anxious, or scared, or tired.
Sometimes you may observe her a bit more on edge.
Or more sensitive to situations that should not cause tears, but do.
We do not want to make excuses for our child, but we also recognize that in trying to fight for one child’s life, the details of another child can potentially fall through the cracks. The emotional strain that comes with her sisters health issues affects all of us.
We are crossing our fingers and hoping that these chaotic days are few and far between, but as our child's teacher and the adult who will be spending the most time with her throughout this year, we feel it is valuable for you to be aware of this burden that she often carries.
Most of the time, our daughter handles all of this so well, and there is a possibility you might not even notice a difference on the hard days. We hope that is the case! But, in the circumstance where it is not, we just want you to know- sometimes our days do not go as planned- sometimes our normal gets quickly altered- and sometimes we need people to understand that this affects her too.
Thank you for investing in the life of our child this year!
A Special Needs Mom
What would your letter look like? What would you add? I'd love to read your comments below!
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