Starting school with disability #WilliamsSyndromeWednesday
There are two parts to registering a child who is starting school with a disability. There’s the functional part – who do you see, what do you need to bring? And then there is the emotional part. This is not about the functional part.
Enrolling our daughter in school was the hardest thing I’ve dealt with on our parenting journey. So hard that it’s taken me a year to talk about it. But today, when I saw that another mom I know is in the same place I was last year, I felt it was time to open up.
I’m going to skip all the drama that happened between when I started the process (and the tears) of enrolling Alma in school and the first day we put her on the yellow bus to let you know that she has an amazing placement. Some even call it a unicorn placement as it feels like the kind of placement you only hear about. It is perfect. But it is not the placement I was crossing my fingers for at this time last year.
And I now know that’s ok.
I learned a lot along this journey. Hopefully, some of it will help you, as you work your way towards the right placement for your child.
I Am Not An Expert
First, I wasn’t to start by saying I am not an expert. I’m not an expert on school or education. I am not an expert on parenting by any stretch. I could write a book on all the things I don’t know about parenting a child with a disability, education and my daughter’s rare syndrome.
But I do know this. Last year at this time I was crying every day over the stress and uncertainty that came with the process of enrolling Allie in school. It wasn’t a few tears. It was ugly. And it didn’t stop for months and months and months.
It may seem like no big deal to parents of typical kids. And it still seems ridiculous when I write these words down. But there is A LOT riding on the assessments, determinations and placement of your kid in pre-K. And they are no walk in the park. You get to hear all the ways your child deviates from what one would expect from a typical child. No one is prepared for these to be painstakingly cataloged for discussion. And these discussions are what bring you to potential placements.
I went into the process thinking I knew exactly where would be best for her. I quickly realized I needed to figure out what we wanted for her, and then work towards a where that could help us get there.
Creating a Vision Statement for your Child
At a conference, I attended a session on creating a vision statement for your child. This vision statement, prepared by parents of young children, then influenced by the child as he or she gets older, can help you understand what you’re fighting for, and why. Mine helped me better articulate what we hoped for Alma’s future, and what needed to happen now for that to even be a possibility.
To get started we needed to understand all the facts and face the music. We needed to look at her current ability, what strengths and challenges many kids with her diagnosis face and what else mattered to us.
Ultimately Alma will determine her fullest potential, but if limits are set on that potential now, we’ll never know just how far she can go. The Vision we have laid out is a supported, inclusive education in the least restrictive environment to allow her to show us how far she can go.
Let that be your compass
Once I was able to say the one thing that mattered most to me in an easy way, it was a lot easier to discuss how we saw her placement shaping up. Now, it needs to be said “There is no right answer for all kids.” But there is a right answer for your family. And it might not be the answer you’re getting, as you’re trying to figure all this out.
No really, stick to your vision
My personal idea what I thought my kids’ going to school would be like was one thing. I needed to separate that from the vision we had for Alma’s education.
The idea I had in my head included my kids at the same school. I’m from a small town and where I come from, siblings go to school together. They look out for each other, they belong to the same community of kids. I believe this is best, and United Nations agree. It is, in fact her human right: Persons with disabilities can access an inclusive, quality and free primary education and secondary education on an equal basis with others in the communities in which they live.
Don’t compromise if there is another way
At the end of the day, my idea that kids should be at the same school and wanting MY KIDS IN THE SAME SCHOOL, was going to stand in the way of achieving The Vision. Keeping them together was an option, but it came at the cost of the support she needs. And accepting the placement my son’s school board was offering went against The Vision too. The offered placement was not in an inclusive environment. We were faced with two bad choices…so we chose to scrap them both.
I believe you need to be prepared be disappointed, to speak up, and to change your plan. When the idea that you had of how your vision would come to life doesn’t match reality, you need to keep working on it. We were lucky that we have another school board in our city that was in line with The Vision. It was not where I had expected to land. But the placement is working out wonderfully and I can see Alma learning and thriving here for years to come.
There are amazing educators out there. Seek them out.
This process isn’t easy, but you can’t do it alone. From her preschool teachers to the principal at the first school that declined her admission, to various principals and school board staff, we did find allies in this journey. I suggest when you find an ally, hang on tight.
Use their experience to help you get as close as you can to that vision. Often there are processes, loopholes, previous cases and other examples of how you can find what you are looking for. They say you catch more flies with honey, and I will say that I spent a lot more time spitting fire than I did try to sweeten the situation. But whenever I heard even the slightest note of agreement on how I thought this should go, I asked questions. I pressed for who to speak to next. And I thanked them profusely for helping us get one step closer.
You’ll get through this.
If you’re here because you’re at the start of this journey, I don’t envy you. It is a hard place to be. Just know your child has as much to offer the class he or she will be joining, as the class has to offer your child. No matter what they tell you. No matter what well-meaning people tell you about how having your child in a class with ‘regular kids’ might cause others to have less of an education (yep – people have said this to me – like with their out-loud voice).
Just know that it is ok to cry and rant and be really, really angry. It’s ok to shout “why me, why my child” to the sky. And to glare at all the kids skipping past your house with parents who’ve never thought twice about all this stuff. Just know it’s normal to be sad, to say no, to wonder what the #%$@ you’re going to do when your child is starting school with disability.
And just know there are unicorns out there.