Advice From the Middle of High School

We are midway through the last year of “regular” high school and here is what I wish an experienced "Special Needs" mom had said to me when we started:

• It will be great and awful. You will watch great progress and painful isolation. You may see that the world closes up for your child with disabilities while it opens up for other kids. The opportunities will not as they should be. It will wear you out. Not everyone will like you or your message. Keep pushing and look for the open doors. • Use expert resources! Bring in Special Olympics, Best Buddies, Circle of Friends, Sparkle, Unified Sports, Unified Theater, inclusion trainers – these programs are entirely focused on enriching inclusion, training staff and typical peers, and building capacity. These are generally low cost, high yield programs that fill critical gaps – use them. Schools can sometimes be closed systems, and bringing in outside experts seems to cause some discomfort. That’s ok. Be uncomfortable. Keep pushing to get these rolling – you will need these resources in place. These programs are culture shifters. Find out if these are in place, and if they are not, ask why. • Build a “disability expert” in the school administration. If one school administrator chooses to learn about disability advocacy, trends, and experiences, the likelihood that students and families will feel safe sharing their needs and concerns will increase. Students with IDD need an identifiable champion within the school leadership. Look for that leader and make sure everyone knows that they will champion the needs of these students. If that leader isn’t there, seek someone out. Never, ever accept the message that these issues are only for the Special Education department to manage. If you are an administrator, raise your hand for this role and become a champion for these students and families. • Lay off the Special Education team. Time has made me acutely aware of the unrealistic burden that is placed on this team of professionals. I have often been the one with unrealistic expectations of this team. The paperwork, the ongoing challenges that come from working closely with students who need intense support (often both behaviorally and academically), the family concerns, the meetings – it is a wonder that we hang onto these teachers. The teaching, planning, and care of students with IDD belongs to all teachers and administrators, just as it does for “typical” students. Buy those Special Education teams some drinks, ask them how they are holding up, and encourage the administration to give them plenty of opportunities to plan and learn away from the classroom. Acknowledge the tough work that their role involves and give them the resources that they need for success. Stop expecting them to manage all the needs of students with disabilities. See them as your partner – they will buoy you when you are tired because they love your kid. • Build an inclusion team that focuses on including students with IDD OUTSIDE of the classroom. Do not take no for an answer – you will need a team that is consistently looking for opportunities outside of school. You cannot do this alone. In our experience, isolation happens all of the time, but much more often outside of the regular school day. School events, sporting events, clubs, teams, dances – this is where the joy of high school often lives. In order for students with IDD to actively participate, plan intentionally for them to have success. Better yet, include them on the planning team. How can events be more sensory friendly? How will students get to and from events? How can they be connected with their peers? Think about being a parent sitting in the car with your kid, who really wants to go into the school dance, but is too overwhelmed to go in alone, and certainly doesn’t want you to walk them in … you sit watching the other kids walk in in huge groups, piling out of cars, and you pray that a student that you recognize, and is kind, walks by so that you can ask them to walk your child in. Sound fun? We have to do better planning intentionally for all of our kids. ALL OF THE TIME. This is not a one and done, problem solved situation - it is an everyone, all the time circumstance. • Don’t take it too personally when you feel judged… and you will feel judged. Special needs parents are often labeled as difficult or over-involved or disengaged. It is fun these days to label parents for being “lawnmower” or “helicopter” moms and dads. But, truth be told, raising teens, with and without disabilities, is really hard. We are ALL doing the best we can with what we know and what we’ve got. If a special needs parent reaches out to you for help, support or guidance, know how hard (insert – embarrassing, frustrating, disheartening) it is for them. As a matter of fact, I would prefer to be almost anywhere other than a school administrator’s office, sharing our struggles or needs. It is a gift when an administrator listens and acts... emphasis on ACTS. You will need an administrator who hears you, trusts your guidance, and takes action. If you find that champion, value the relationship. • Assume that teens with disabilities are capable of more than they show or communicate. Let them try things that you think might be too hard. Let them take risks. Say yes over and over again. It won’t always work, but something will be learned and you will try again. Many of the “No’s” we have gotten over the years have been based solely on discomfort or fear of the unknown. Again, that’s ok. Be uncomfortable. The very best experiences we have had in high school often involved a good amount of discomfort. The high school experience for students with disabilities would be transformed if we started saying yes and went from there. • This is a tough one, but it has been heavy on my heart since high school began. Students with disabilities need lots of opportunities to build employment skills, to try new job experiences, and to explore their job interests. There are many ways to make that happen. But, students with disabilities do not benefit from working in a role that requires that they clean up after their typically developing peers. ALL students can learn to clean up a cafeteria, to wash dishes, to mop, or to scrub toilets. My child with a disability does not need these skills or experiences any more than my child without disability. Think about the dynamic that is created when the student with a disability is in the cafeteria washing the dishes of her “typical” peers who just ate lunch and then went off to class. Rotate everyone through these “learning experiences”, or find a new way that doesn’t create an even wider gap between those with disabilities and those without. Know how your school handles this and be prepared to advocate. • Stop rewarding typical kids for being kind to students with disabilities. None of us should get a gold star for being decent, and the message it sends to those with disabilities is that it is “harder” to be nice to them, and therefore deserving of accolades. It also relies on the false assumption that students without developmental disabilities don’t have authentic friendships with students with disabilities – which simply isn’t true. Knock it off. • Consider asking students to solve the problem of inclusion. If you sat in a room of high school students and presented the problem of inclusion in high school, and explained what the experience is really like for those with disabilities, I’m certain they would blow us away with their commitment and creativity. Let them do some of the problem solving and include students with disabilities in the discussion. I’m certain that many of them are acutely aware of how it feels to be on the “outside”, to feel excluded or misunderstood. They would make quick work of building a more inclusive culture if they understood it to be their responsibility. Empower them.

Thank the fabulous people that have spoken up for you, made changes for your kid, and done hard things to support students with disabilities.