Back to school time has already come for some students,
some students are preparing to go back to school, and some are preparing to
start their first year in the school system.
Courtney, Brenna’s mom, shared her experience with transitioning from the
state’s birth-age 3 program into the the public school system in a post
Take a look below….
Brenna’s big 3rd birthday is looming in less than 4 months,
which means one thing in the world of “special needs”… transitioning from
the state’s birth-age 3 program (Early Intervention in our state) into the
public school system for services.
Last week, we had our first such meeting to begin that transition, which will also
bring a couple more meetings in the next few months – to create an IEP or 504 plan
for Brenna, to evaluate her for therapies that she will have at the school, to figure
out exactly what services she will quality for.
This is a whole new world to navigate and one that we’ve been trying to prepare for.
We selected our new home specifically for its school district, and we visited the
elementary school last spring, met with the principal and brought them brochures
of information about ichthyosis from FIRST.
During the FIRST family conference, Evan and I attended a breakout session about
education and the school system, and even though it felt a little early, I’m so glad
we did it because it got us thinking about things that hadn’t even crossed our minds.
Sure, we knew Brenna might need an aide and other assistance…but we didn’t even
consider things like making sure the school bus has air conditioning, or otherwise
coming up with alternative transportation. What happens if there is a field trip
outdoors and it’s too hot? Where can she go if there is a fire drill, but it’s too hot
for her to stand outside? What if there is a substitute teacher who is uneducated
about ichthyosis? I took notes like crazy during this conference session.
We’ve been constantly reading about other families’ experiences with their
schools – struggles and accommodations and bullying and inclusion and all kinds
of situations. And we’ve been asking questions specifically of other families who
have children with Harlequin Ichthyosis – why do they have a one-on-one aide and
what does their aide specifically help with? What are the resources we need to give
the school to help educate everyone – from teachers to cafeteria staff?
There is the obvious – making sure infection risk is minimized and making sure temperature is not an issue – to the little things, like having a small dust buster
available for quick and easy clean-up of skin flakes.
In our meeting last week, I noted that Brenna likely wouldn’t need any Aquaphor applications during preschool… it is only a 2.5 hour time period. But there are so
many other things that kept popping up in my mind that I think I probably gave
the social worker a hand cramp from her note-taking.
Infection risk. Temperature. Mobility issues. Making sure she is getting enough
to eat and drink. Assistance with tasks like going to the bathroom. Etc. Etc.
And yet, I didn’t find it overwhelming. Not yet anyway. The conversation
actually sparked more of an excited anticipation for me.
I’m excited for Brenna to experience school. Because I know she will thrive.
She fights against leaving the classroom when we drop Connor [her big brother]
off in the morning, and she begs to play on the playground when we pick him up.
She watches all the kids and says hi and wants to play too.We are determined to get
her whatever she needs to be successful in the school setting and help prepare
her for donning her little backpack in just 11 short months.
And I can’t wait for her to get to experience school.
To follow Brenna’s journey, be sure to follow her mom’s blog here and her
Original post can be found by clicking here.