For most parents, going back to school means buying new school supplies (another pair of scissors!), fighting with your child over new sneakers and back-to-school clothes.
For the special needs parent, it means that the IEP season is on us and we have to review the current IEP to see what goals our child have attempted to accomplish, which goals were good on paper but an epic fail in reality, what new goals we want to see our child attempt and the parent concern statement.
The dreaded parent concern statement. How does a parent whose child has significant special needs create a “concern statement”. Our child’s entire being is a concern. Yes, we want the IEP to be a guide of how to address the concerns. But in reality, there is no way this piece of paper is going to address them. Even if we concentrate on what the school team needs to focus on, forgetting about every other aspect of our child’s life, there is not enough ink in the world to truly capture a parent’s concern.
I have been incredibly lucky that since Bridget’s first IEP at 3-years old (before I even knew what an IEP was), the IEP team has always been a true team. Collaborating together to create a document to guide the education and progress of Bridget. In the 13 years since, there really have been only two times that I feel I had to go toe-to-toe with the educators to remind them that while we are a team, I am the Captain of Team Bridget.
Looking back, when Bridget was younger the IEP was about trying to catch her up to her peers. As she aged, and the gap became too obvious to ignore the IEP became a document to relocate Bridget from the traditional school system to a specialized school that is more equipped to fulfill her significant needs.
As she gets older, the IEP becomes less about learning how to read and more about how to stay at a task for increments of time so that she may one day work at a vocation. It is about learning how to hand a card with her information on it in the case she gets lost. How to navigate a crosswalk and parking lot safely.
As her parent, my expectations are sometimes not in alignment with her capacity.
This is why each participant on her IEP team is important and must come into the room to collaborate with kindness.
This morning, before the IEP meeting I addressed the team with this intention:
If my expectations for Bridget are too low (like giving up on her learning to read), they need to tell me. If my expectations are too high (like her working at a job), I need to know that to.
I believe that at times the educators and therapists are afraid to tell the parent that while they adore your child, there is a reason they are not in the traditional public school.
As we worked through the IEP, I realized that Bridget has entered a new era in her life. We are working on function over form. We are working on making her safe, helping her communicate more effectively, and how to navigate a vocational site.
Bridget is learning how to use a visual menu at McDonalds and how to use a gift card to get her strawberry milkshake.
There are still academics being taught, but not in the traditional sense. Instead of learning algebra, Bridget is learning how to follow a recipe with visuals. Instead of learning how to read a novel, Bridget is learning how to follow a visual schedule.
I admit to this being a painful realization, but that pain is easier to bear when I remember this was the child that wasn’t supposed to survived.
And thanks to the time and compassion her IEP team being invested over the past 14 years…
Bridget has thrived.
(Un)Diagnosed and still okay 