Fifteen years ago, when my son Hugh was not quite three, he was identified as needing early intervention. This turned out to be just the start of our family’s long-term relationship with special education. To demonstrate how much I didn’t know then, here’s a confession:
Although at the time Hugh didn’t have a diagnosis, I could see what appeared to be (forgive me) “wrong” with him: Lack of eye contact. Obliviousness to gestures and facial cues. Delayed eye-hand coordination. Repetitive movements. These symptoms baffled and worried me, so I came up with a plan. As Hugh grew, I’d work with him to fix each deficit, one by one, until everything was checked off and he was developmentally indistinguishable from his peers in school (mainstream, of course).
Now I marvel at my early parental cluelessness. I didn’t know then that development isn’t a straight upward line moving into the “normal” range and staying there. I didn’t know that some of Hugh’s “deficits” were adaptive, or that normality wasn’t the appropriate goal. Call it the evolution from the medical model of autism (my baby is broken and must be fixed!) to the social model (my baby can thrive with acceptance and appropriate supports); this was one of the realizations that changed the way I parented and approached Hugh’s education.
What knowledge and insights would have made the difference in those earlier years? Let’s start with this list of five. Some are philosophical, some practical. My experience is based on autism, but much of this can apply to other conditions.
1. Who are these educators?
Critically assess professionals who claim expertise.
Initially I was surprised at how little professional guidance I received. I wanted answers and advice, and didn’t know then how poorly autism was understood. Paradoxically, plenty of professionals were willing to claim expertise. Teachers and therapists told me, “I have experience with autistic kids,” or “I have a certification in autism.” I found this reassuring.
Later, as I saw how much Hugh struggled in the care of these people, I realized that their claims should have been red flags. What experience? What certification? Professionals who are truly invested in autism speak thoughtfully of their observations and insights and acknowledge the challenges—not least of which is how differently autism manifests in different students.
Professionals’ attitudes towards autism can be startlingly regressive, even in inclusive school systems. I’ll never shake the memory of a school administrator’s obvious fear of Hugh (at age six!) and how unfairly she treated him. In contrast, one of Hugh’s best educators started with no special ed qualification and limited experience—her attitude and commitment were everything.
2. How are they educating?
Distinguish between the difference (which should be left alone) and the disability (which needs support).
Developmental disabilities can involve behaviors that parents find alarming; however, not all of those behaviors are alarming for the child. Maybe your 9-year-old flaps her hands, which meets her sensory needs and regulates her anxiety. That difference should be accepted. But, maybe she also has an auditory processing challenge that limits her ability to participate in class and conversation, with no upside. This she might experience as a disability, requiring supports like small classes and visual learning materials.
Separating the difference from the disability is the prerogative of each individual. If your child is too young, ask yourself: does this behavior bother me because it’s not “normal” or because it’s directly causing him or her distress? Then work with educators and therapists to ensure that they’re addressing the right issues. Passing as normal can be an asset, but that does not necessarily make it an appropriate goal.
Pressure to be normal for the sake of other people’s comfort makes a child’s life harder. Autistic adults often say that they were traumatized in childhood by certain behavioral therapies, like the emphasis on “quiet hands” to discourage or punish flapping. Don’t consider allowing “teaching methods” that cause your child pain.
3. What has helped others?
Learn what helped adults with the same condition.
Listen to adults who have your child’s diagnosis. What helped them learn? What made learning harder? What supports have been most valuable to them? Pass on this information to your child’s teachers.
The parents of children with autism tend to reject the input of adults with autism. They protest, “But you aren’t like my child!” In important ways, they are like your child. Regardless of how much or little support a person with autism needs, there are commonalities, and adults with autism have important insights for parents and educators. They can warn you; for example, they could alert you to the impact of those punitive behavioral therapies (see #2). Also, they can offer explanations (for example, “This is why your child might be doing that thing that upsets you, and this could be a way to help him.”) and reassurances (for example, that your child’s development will continue well into adulthood).
4 What’s the process?
Learn about federal and state laws that impact special education.
When Hugh started attending public school, I allowed the school administrators to tell me how the process worked. Don’t do it. It’s not that administrators and educators are out to do your child wrong. But they may be under pressure to keep costs down, and might have limited knowledge of the law and appropriate educational accommodations.
Luckily for us, I discovered a helpful local parent organization and a local nonprofit, the Asperger’s Association of New England (AANE). (Disclosure: I’m now on the AANE board of directors.)
Search for organizations in your state that educate and support parents. Refer to online resources like wrightslaw.com and the Federation for Children with Special Needs website (based in Massachusetts). AANE is increasingly using webinars to facilitate workshop access. If you can afford it, consult an educational advocate who knows your child’s condition and the local school district. You need to know what accommodations are available, how the process of evaluation and the individualized education plan (IEP) works (including mandated time frames), and what your school district is and isn’t legally obliged to do, among other critical pieces of information.
Aside: If the school is making a habit of calling you to come pick up your child early, that’s not okay. They need to find a more appropriate placement.
5. How can the process be more effective?
Improve your executive function.
Executive function challenges aren’t just for kids with special needs. Unless your organizational skills are already stellar, work to improve them. Time moves differently in special ed world—somehow, both slower and faster. It’s surprisingly easy for a full academic year to pass without your child’s team resolving issues that came up near the start of the year, even when good intentions and effort are there.
Chart every email and phone call, every request, every deadline, every date of an expected service (check with your child that it happened) and every reminder to review a new accommodation. The less drift, the more time and options for your child.
What do you wish you’d learned sooner? Please let us know in the comments.