In the fall, as the children begin to go back to school across the US, my social media feeds are divided neatly in half. From my friends whose children are neurotypical come posts like these: My baby is off to kindergarten (or middle school, or high school, or college). I can’t believe she/he is so grown up! Where does the time go? I appreciate and enjoy these posts, and as the mom of three neurotypical children (and a person who loves kids in general), I enjoy them very much.
But there is a jarring juxtaposition between the reality represented by these posts and that represented by my friends whose children have cognitive, social, and emotional disabilities. There are the stories from friends who cannot find a school placement where their child will be safe; families struggling to convince schools to do meaningful work with their children instead of reducing expectations to the point that no real education happens; people who are terrified to send their children to school because they have been abused by staff or other students in the past; children who are so anxious to go to school that a family’s entire life revolves around managing that anxiety; and parents of young adult children who have no more educational options for children who urgently need somewhere to be and something productive to do during the day. While back to school may be challenging for any family, it is all too often a crisis for special needs families.
For nine years, I was the parent of three typically-developing children, and I found it plenty challenging. When my youngest son Carter, now 13 years old, was born, howling and miserable, I entered a new realm of parenthood with challenges that feel insurmountable. It took years to identify the cause of his suffering, a prenatal hypoxic brain injury, and more years to develop an adequate clinical picture that enables us to access the treatment he needs to help him live his best possible life. Even with treatment, life is hard for Carter. His diagnoses include bipolar disorder with psychotic features, sensory processing disorder, borderline intellectual functioning, and every learning disability listed in the DSM-V. For all the big clinical words attached to Carter, he isn’t a diagnosis to me. Just like any parent’s feelings for any child, he’s my baby, my beloved little boy, and I want all the best life has to offer for him. He may be different from most kids, but my love and devotion for him is the same. His worth and value as a human and child of God can’t be altered by a neurological accident.
Why, then, is accessing quality education for children with significant special needs so very challenging? Carter is among the most fortunate of children with disabilities, since financial help from my family means he attends a private school where his teachers work hard to help him feel safe and happy. The school is tiny, so all the teachers know Carter well enough to push him on his good days, and pull back on academics and love him through the hardest days. The director of the school takes Carter on walks when he needs space to regulate himself, and lets him call me so I can try to talk him down when his anxiety spirals out of control.
All children with disabilities require this level of sensitivity in their education. They need well-trained teachers who know their students well enough to “read” their capacity, both overall and in the moment. Few children are educated this way, not (usually) because their teachers aren’t dedicated and wonderful people, but because the culture in public schools isn’t commonly conducive to it, and the overwhelming workloads of public school teachers leaves them without the time or the emotional energy to devote themselves adequately to each student. When my friends and I find educational environments that suit our children’s needs, it’s too often after years of trauma in unsuitable situations. We’re pleased and grateful, which is appropriate, but also shocked, which is not, given that federal law guarantees appropriate educations for our children. My son gets his appropriate education because he was born into a family with abundant resources. Some of my friends’ children get appropriate educations by luck or by lawsuit. None of this should be so difficult, when we have laws (not to mention a moral obligation) that promise all our children the opportunity to learn.
About the Author
Adrienne Jones lives in Albuquerque with her husband and children, and in the hours just before dawn, you can find her at her desk in the little office next to the kitchen, writing stories. She blogs at No Points for Style.
Find links to almost everything she does on the internet at about.me/AdrienneJones.