Inclusion

ICYMI, the award winning show “Abbott Elementary” is back for their highly anticipated sophomore season.   I fell in love with “Abbott Elementary ” during its first season, and I made a joke that every time it goes off air, whether it be for a break or it’s between seasons, my life goes to shit. That being said, I counted down the days until the second premiere. One of the perks of “Abbott Elementary” is that it manages to be over-the-top comedic while still maintaining an emotionally intelligent core that is full of heart, and they didn’t disappoint. This new episode highlighted Barbara (Sheryl Lee Ralph) attempting to make her classroom ADA friendly for a student that uses a wheelchair, Jacob (Chris Perfetti) who learned American sign language (ASL) and uses it to communicate with one of his students, and Janine (Quinta Brunson) who is trying to keep it together after a breakup, when she is quite frankly falling apart. What makes this episode (and show) so great is that while it’s a fictional world, it really does showcase the difficulty teachers have when it comes to supporting their students, and how sometimes no matter how hard they fight, at times they aren’t the ones in control of accommodations. Barbara used the grant the school received in the last season to build a ramp, but still lacked a desk that would accommodate her student who uses a wheelchair . She tried her best, but ultimately wasn’t successful until Greg (Tyler James William) went down into the school’s spare stock and found one. Additionally, Jacob spends the entire episode talking about how he learned (a little) ASL over the summer, and how he would be teaching it to other teachers. The way they wrote his character and this mini-arc were brilliantly hysterical, because it’s clear they’re poking fun at people who treat ASL as a fun quirky thing to learn that makes them better than others, versus an actual language with its own dialects. While that was exceedingly clever, when the moment came to use it, he managed to actually make a difference for a young girl who needed that accommodation. These two plot lines were subplots, which beefed up the main plot line of Janine not having her life together after the breakup financially or emotionally. While “strong Black woman” syndrome was never discussed explicitly, she portrays it perfectly. She isn’t asking for help while burying herself in work and pretending that everything is great when she’s actually deeply grieving her long-term relationship. She tries to push through her trauma and grief, only for everyone to rally around and remind her that the only way out is through. Yes, I just spoiled a lot of the first episode of the second season, but I guarantee you it won’t ruin anything. Normalizing disability and mental health conversations in the media is so important, and I’m ecstatic to see such an amazingly brilliant show do just that.

I do my best to adopt a “know better and do better” motto for life and I hope most others do also. The following is a list of things I want people to know, do or ask to help make society more inclusive. I hope others will add to the list in the comments! 1. Ask questions and really listen to people with disabilities and their caregivers. The only way to really know what our needs are is to hear us out. Please give us a voice. 2. Please don’t say “no” due to lack of funding. If that really is the reason, let us know who we can talk to to get the funding or meet with us to find creative ways to save money while still offering the service! 3. Don’t place limits on us. Yes, people with disabilities often need accommodations, but only the person themselves should decide what their limits are. 4. Do not assume that everyone with a specific diagnosis is the same. We are all different — celebrate our individuality. 5. Over-communicate. The more you share about your venue, program, or product, the easier it is for us to make an informed decision. 6. Disability accommodations are not special treatment. They are essential practices to keep people with disabilities from sitting on the sidelines. 7. The needs people with disabilities have are not “special” — they are basic human needs. Some additional effort and funding may be needed to accommodate these basic needs and the lack thereof should not be an excuse. 8. Do not upcharge products and services, even if they cost more. People with disabilities and their families often have significant expenses and therefore cannot afford to pay more and should not have to pay more than others for similar products and services. 9. See us. See the disability also, but not just that. See our personalities, see who we are. Celebrate us as a whole person. 10. Society benefits from inclusion. People with disabilities have a lot to offer, just like everyone else. Let’s be a whole community! Let’s work together to create a more inclusive world!

Dear Ms. Michele: Thank you for believing in our Abby. Thank you for believing in yourself that you could teach a child with Down syndrome. Thank you for rising to the challenge of communicating with a child who is non-verbal. Thank you for helping Abby soar. “I want to see Abby soar.” Those were the words that you said to us during Abby’s parent-teacher conference. Those were also the words that reduced my wife and me into a pair of glassy-eyed adults in much need of a tissue. As you know, Abby is our only child. After she was born, we spent 78 days in the NICU of Children’s Hospital of Philadelphia. So it goes without saying that we were extremely protective of our little miracle. She was just 3 pounds at birth and still remains on the smaller size on all the growth charts. As an only child, and non-verbal, we were also very nervous about how Abby would handle herself around other adults and peers. When we first met you, Ms. Michele, we told you that Abby was not speaking yet and used sign language to communicate. We explained that she knew about 200 signs at that point. My wife and I did detect an element of worry and concern. We could sense your discomfort with the fact that Abby could not talk. But we totally expected a reaction like that after hearing this type of news. Flash forward to today and you have become a champion for sign language. You were extremely open to learning how to communicate with Abby through signs. Thank you for working so hard with Abby’s speech therapist to not only educate yourself in signing but to also teach your entire class to sign. You have totally exceeded our expectations. To hear the love in your voice when you share stories about the children signing in class and at home warms our hearts. When we talked about our passion for having Abby included in a Catholic School, you shared a story with us about your friend’s brother who had Down syndrome. As a young girl, you wondered why he could not attend school with the rest of the children in the neighborhood. Now, as a professional educator, you wonder what opportunities that young man missed by not being included in the local school. Thank you for sharing your experience; it has fueled our passion to ensure Abby is always included. The school principal told us when we first met her that she never wanted to deny a student a Catholic education because of a disability. It is teachers like you, Ms. Michele, that are making inclusive Catholic schools a reality. Lastly, we would also like to express a heartfelt thanks for the way you and the whole school jumped right in to embrace and celebrate World Down Syndrome Day. We were so grateful to be able to come in that day and read a book about kindness to your students. Seeing everyone, including yourself, “Rockin Your Socks” for Abby and other individuals with Down syndrome, showed us firsthand the caring environment you have created in your classroom. And when the local news showed up to interview you that day, we were so proud! And we will never forget your quote, “No matter what life throws at you. You just got to pull up your pants, put on your wacky socks, and just tackle it!” Amen, Ms. Michele! Amen! In closing, I come back to your words to us: “I want to see Abby soar.” Those words touched our hearts. Those words assured us we made the right schooling choice for Abby. Those words make us forever thankful that Abby has you as a teacher. Sincerely, Abby’s Mom and Dad

Do you have a child with a disability? If you do, I’m almost positive that at some point in this parenting journey you have felt the pain of wanting them to be happy and included. Do you have a child without a disability? Have you ever been sad when your child felt left out? If you have, I can confidently say to multiply that feeling by infinity and you’ll have a small understanding of how awful it feels when your child with a disability is excluded. Infinity. Infinity. My daughter Ashlynn is now 12 and started middle school. She’s only ever been invited to one peer’s birthday parties. Despite being happy and kind with a smile so bright it could rival the sun, it’s always been a struggle for her to be included. A natural-born socialite, Ashlynn was born with disabilities that have effectively worked as barriers between her and her desire to be social. How much does she long to feel included? I can’t really say for sure but anything I can imagine I’m sure we can multiply by… infinity. Infinity. Infinity. Inclusion is not something new. Disability advocates including special education staff and others have been trying to do this successfully for decades. Though we’ve come farther than when I was in high school, where the kids in special education only had a hallway and never attended general education classes, simply sticking them in general education classes wasn’t including them either. As time went on, we have been learning. Inclusion is not just a place. If it were, kids on the outside would have long been included by now. True inclusion is really a culture. It’s in a culture of people who all viscerally buy into this idea that everyone matters. It’s a culture of many many people beyond disability and diversity advocates who accept we all have way more in common than we do not. So what are the possibilities of an entire culture of people practicing inclusion? I’m no expert, but I think the answer is probably infinity. Infinity. Infinity. That leads me to this new middle school my daughter Ashlynn is at this year. Even just walking through the doors, one gets the sense that this building houses a culture of inclusivity. It’s literally written in signs on the walls and throughout the building. In the girls’ bathroom, positive affirmation notes are hung above the mirrors. I remember washing my hands and wondering if instead of hating my reflection every day as a middle schooler how it might have helped to then read a positive affirmation above it? In hallways, inspirational messages are posted throughout like this one from Eckhart Tolle that reads: “Some changes look negative on the surface, but you will soon realize that space is being created in your life for something new to emerge.” Middle school is full of so many changes. Changes to our bodies, our cognition, and our way of navigating the world. Imagine a child going through that but reading that sign above Ashlynn every day. Could it change how they feel? I don’t really know for sure, but even if it helped one child, it’s worth it. Who knows how many that child would go on to help? Maybe the answer is more like infinity. Infinity. Infinity. Ashlynn has thrived in her sixth-grade year, being included in general education, track, and basketball. Her science teacher modifies her school work on his own. He takes responsibility himself for scaffolding her work instead of relying on the special education teacher. The dean of students who helps with traffic flow in the morning took to Ashlynn “helping” her do traffic duty. Every morning Ashlynn happily smiles and waves on the cars alongside the dean. It would be impossible not to notice how Ashlynn is being included every morning by teachers, parents and students alike. You know what this fosters? Inclusion times infinity. Infinity. Infinity. The year culminated into something called the first annual “Inclusion Spirit Week.” Excuse me? I’ve worked in special education since 2004 and I’ve never ever heard of anything like this. To make it work though, all members of the community had to believe in and practice inclusion, because as I said, inclusion is not a place, it’s a culture. It’s a culture like Spirit Week for school pride! It’s a culture like team spirit. It takes a collective group of people, disabled and non-disabled, advocates and non-advocates who truly believe inclusion matters. To be clear, inclusion week was not just about kids with disabilities. I’m writing about it because my child happens to have one. The week had themes of not letting anyone sit alone, how to be a friend when you see someone sitting alone, and more. The assembly featured games and incorporated all members of the student body participating in games against the teachers. That’s where Ashlynn came in. She was on a basketball team of students working to get more baskets in one minute than the teachers. She was paired with a peer buddy who helped her alongside other general education students working to defeat the teachers. How much did this mean to her? Well to quote Buzz Lightyear, I’m pretty sure it was “to infinity and beyond.” Infinity. Infinity. I don’t say it lightly when I tell you that Ashlynn’s new school has been nothing short of amazing. Reading, writing, and math are important, but so are kindness and mental health. This school offers all of that. What’s the name of such an amazing school,  you might ask? Well, it’s none other than Infinity Middle School. Our gratitude overflows. My husband bawled through the entire assembly. The only way to describe happiness like that is nothing shorter than infinity.

Our school district is slowly moving towards inclusion as the rule, not just an exception that parents need to fight really hard for. I believe our son Daxon is the first child with Down syndrome that his first-grade teacher has ever had in her General Ed classroom. One of the “problems” she brought to our attention was that Daxon takes his shoes off in the classroom as it was a hardship for her to have to put them back on every time they left the classroom. When she reached out for help in finding a solution to this issue, I told her I could understand why he feels like taking off his shoes is the right thing to do. After all, we have him take his shoes off when we go home, go to other people’s houses, and when we go to camp at our local karate dojo. He is good at following rules as long as they are consistent but has trouble understanding when there are nuances or exceptions. I almost hate to admit it, but my first suggestion was that we could buy shoes that were hard to get off. Turns out, this didn’t stop him and shoes that are harder to remove are also harder to put back on. Ultimately, it made everyone’s life more difficult. Eventually, we got him shoes that were super easy to get on and off. She reported back that while he was still taking them off, he could put them back on by himself, and he was so proud of his independence. I was happy we found a solution, but frustrated with myself for doing the same thing I often see the school district and society doing. Instead of making everyone conform to arbitrary rules, we need to take a step back, re-evaluate what is truly important, and take down barriers. As small and simple as this example is, I will carry it with me when I am looking for solutions to future “problems” and do my part to help build the least restrictive environment that all our kids deserve.

May 2-6 is National Teacher Appreciation Week. My daughter Rachel is 22 years old and has Down syndrome. While she has completed her formal education, showing teacher appreciation is always appropriate. I believe there are some common threads among the good teachers she had that helped make inclusion work for Rachel. I wanted to share some of those common threads. First, I want to say a heartfelt thank you to those who teach and specifically to the teachers who taught Rachel. That includes the support and related services personnel like paraprofessionals, speech, occupational and physical therapists, social workers, and counselors. I believe teaching is the highest calling. I am thankful many of you choose to teach and so many of you have been good teachers for Rachel. Throughout her life, Rachel has had many teachers. While some were definitely a better match than others, she had exceptional instruction and supports. I believe Rachel’s pursuit of her dreams and ability to navigate the world as a young adult is a direct result of the excellent early intervention services she received from Special Kids and Families and the Harwood Center. And it is a direct result of the outstanding teachers she has had. When people inquire about Rachel’s academic experiences, I try to make a conscious effort to tell people that Rachel had some really good teachers in her school endeavors. Rachel’s educational experience had plenty of bumps and train wrecks, but Rachel did have many educators who invested in her and believed in her. I believe that good teachers teach all children. Many of Rachel’s best teachers didn’t have specialized “special education” training. However, they believed that all children could learn and that you find a way to teach them and find a way to discover what they have learned. Accepting that everyone’s learning journey is unique is important. Communication is probably the area of greatest frustration for many parents. One of the most important aspects of Rachel’s positive experiences was the teachers and others who communicated openly. In my blog Communication 101, I talk about the fact that if you do not tell us, we do not know. Sometimes a simple email or phone call takes care of a misunderstanding or clarifies otherwise confusing information. On that topic, communication with paraprofessionals really does help. Paraprofessionals are often the ones who are writing or supervising the writing of the back-and-forth communication and one text, phone call or email can prevent an emotional meltdown from a parent. A willingness to admit what they do not know. I loved it when Rachel’s English teacher called me before school started and said, “I need your help. I want to teach Rachel, but I am not sure that I know how.” She had never taught a student with Down syndrome. Rachel had several teachers brave enough to say that out loud. We can work with that. We can help, and we can do this together. One of Rachel’s teachers told me she was thrilled and terrified when she found out Rachel would be in her class. She knew her from being around her at school, knew us because of our volunteer efforts at school but she had never taught a child with Down syndrome. She told me that she was afraid she would fail Rachel and us. They taught each other and a whole classroom of friends that year. At the end of the year, this teacher of 15 years told me that Rachel was the most memorable student she ever had and changed her as a teacher and her expectations for all students in a positive way. Another common thread for success is teachers who remember Rachel’s IEP is not a list of suggestions. It is a legal contract. There is information in her IEP to help her to maximize her potential, but it also provides information in the form of accommodations and modifications to help teachers know how to best meet her needs. I don’t like having to be “That Parent,” but if teachers don’t follow Rachel’s IEP, sometimes I had to be “That Parent.” Think outside of the box. Rachel’s class was reading “A Christmas Carol.” Her teacher sent me an email (open communication) and said, “I did something different with Rachel on the “Christmas Carol” test. From her class participation, I knew she knew the information, and I thought she could take the same test as the other students. I knew she could tell me the answers, so I didn’t give her a modified test. I gave the same test as the other students, but I let her give me answers orally. She made a 14/15!” The teacher may have been even more excited than we were. Embrace our idea of inclusion. Inclusion isn’t just about the classroom teaching. It is about the process. It is about the classroom interactions. It is about others seeing Rachel and others with intellectual disabilities as capable. The long-term rewards for all students are immeasurable. I suspect the results will include more jobs for individuals with disabilities and the ability to interact with clients and managers who have different strengths, preferences, and abilities. I suspect there is a group of people who will better navigate the course of life because of their experience in inclusive classrooms and communities. Sharing our high expectations. Our best partners in the journey have shared or learned to share our high but reasonable expectations. I have saved emails and notes from many we have worked with who say that working with Rachel and seeing what can happen when you try new things, when you don’t accept the status quo but instead set high expectations has changed the way they educate. Rachel’s team members often told stories of what the other students gain from Rachel. Others have their own little party when they see and hear her demonstrate what she is learning. As a side note, when you see your child demonstrate knowledge they learned from a teacher years before, drop that teacher a note. It means a lot to them. Again, I want to say thank you to the many educators who have shaped Rachel’s life and have joined us on this journey. They are now part of Rachel’s personal “Friends of Rachel Club.” Many, if not most, continue to follow her progress and be involved in our lives at some level. Final note: People tell me they stress about what they will do to recognize/honor/thank their child’s teachers. When you have a child with an IEP, that group is bigger than the average student, and it can be expensive. We did different things for Rachel’s teachers/team from serving an annual appreciation meal to gift cards, plants, and homemade treats. I did a little research and one of the number one things teachers told me they wanted? A card from the student/family. Just say thank you! They will appreciate being appreciated.