My Daughter Has a Significant Physical Disability, and I Worry About Her Future Every Single Day

I know I'm not alone when I say I think about my daughter's future every day. We daydream about what our kids will be when they grow up and what they'll be like. To get them there, we steer them toward a productive, independent adulthood. We teach them to be kind, to try hard, and to do their best. We think about what activities to engage them in, which sports they should play, who their friends should be, and what academic support is right for them. But because my younger daughter has a significant disability — pontocerebellar hypoplasia type 2 — this type of deliberation occupies an especially great deal of real estate in my mind. What will my daughter do when she grows up? What will her life look like? What does she need now to get her ready for it?

Many children with my daughter's diagnosis don't survive childhood, but we have no indication that Freyja's lifespan will be any different than yours or mine. She's learning and growing with fierce determination, and I believe she'll continue to blossom as she gets older. But into what? And how can my husband and I help her get there?

Freyja has undergone every type of testing. She's evaluated twice a year at school in every academic subject and in every related service. She's had three neuropsychological evaluations, which consist of intensive questioning, "game" playing, and a variety of other systems to not only assess her current state but to measure her learning capacity and potential barriers long-term. We have reports, scores, charts, and graphs to show what she should be doing and where she'll have trouble and why. These are not always helpful. One indicates a slower paced classroom may be more appropriate for her, yet socially and emotionally, her scores are those of a typically developing child.

I understand all of this and none of this. But we know Freyja. Because she defies so much of the tragedy woven into her diagnosis, because her patterns of development and learning are erratic and unusual, because she consistently achieves milestones everyone said she never would, the best thing to do is just follow her lead.

What I know about my daughter is that she loves people. She is extroverted, social, and engaging. She's kind to her friends, willing to share, and never tires of playing with her sister, even after her sister tires of playing with her. She interacts well with other children's parents and usually remembers to say please and thank you. In short, she's a social butterfly, so vibrant and brightly colored that she lights up any room she wheels herself into.

So, when it comes to school, I can't help but think inclusion is what's best for her. She belongs in a group. Studies show that inclusion is better for both atypical and typical children for many reasons, but for Freyja in particular, I think inclusion speaks to her strengths. She thrives when she has both typical and atypical peers to model activities and behaviors for her. She's easily infected by the enthusiasm of others, picking up their phrases and body language, wanting to be with them and like them. She loves working and playing in groups and is always willing to try something new if someone she likes or respects offers to show her how.

Yet, for the first half of every school day, she's in a self-contained classroom, otherwise known as the special ed classroom, substantially separate, learning center, intensive classroom, resource room, etc. To me, it's segregation. I understand that a quieter environment with more adults and fewer children might be what Freyja needs to master arithmetic. I don't doubt that she needs one-on-one attention. I get why the school district has chosen this path for her and why they feel it's the best solution to help her overcome her many challenges with learning. Freyja gets it, too. But I want her in an environment that also speaks to her strengths.

She begins to shine after lunch, when she rejoins her pals in the general education classroom. She looks forward to doing music, art, science, and gym with a big group of kiddos. She enjoys Spanish class and shows off her accent with numbers and days of the week to anyone who will listen. She loves the hustle and bustle of an active classroom, and I can't help but think that by keeping her segregated for half the day, we may be missing out on a greater opportunity to prepare her for life as an adult.

The real world is not split up the way her classrooms are. Life is full of frustrations and challenges. I can't protect my children from that; no one can. Instead, our job is to prepare them as best we can for a busy, blended, multidimensional world that can be vibrant and exciting and difficult and awful, all at the same time. For Freyja, this means teaching her that yes, she can't rollerblade like her sister can, and maybe she never will, but if she works at it and is willing to accept that she'll always look a little different and need a little help, she can and will rollerblade her own way.

This is why I believe in inclusion from the start. Freyja won't get a job because she's a straight-A student; she'll get a job because she connects with someone deeply enough that they're willing to take a chance on her. She'll get a job because she's learned to navigate a world that was not designed to include her, because she's determined and resilient enough to advocate for herself. And the only way that will happen is if we focus on inclusion now, preparing her for real life outside the classroom.

I want her to have every opportunity to meet real people now — kids who like her and kids who don't, kids with whom she plays peacefully with and kids with whom she has conflict. I want this for her more than I want her to be able to do algebra or follow a physics textbook. I believe the lesson that all people are different and that she must effectively express how she is different to everyone else is far more important for her to learn to be successful in life and in work. This will be what helps her succeed in adulthood. There is nowhere better to do that than in a mainstream, inclusive classroom setting. And I hope schools start to listen.