Wow...inclusion can be so easy!

After learning of Kyle’s negative experiences with inclusion in high school marching band, a dear young member of my church encouraged me to bring Kyle to youth group. “I believe that Kyle is unique in his own way and should not be judged for that. He has a great heart and attitude and they don’t know what they are missing out on,” she texted me in part. About youth group, she said “I can personally give you my word he will not be judged there and will be included.” Then, the youth leader told me, with no seeming hesitation at all, “We would absolutely LOVE to have Kyle in youth group.”

So, still a bit gun-shy after the previous failed attempt, I took Kyle to youth group this past Sunday. Nervous and knowing he’d need help, I stayed and tried to be unobtrusive. I was assured I was welcome to stay…or go. They played a game way over Kyle’s physical abilities – but they handed him the rope, showed him how to hang on, let him try, stopped when he fell, and cheered him with “good job” when he got back up. He sat at their table, hung at their couches, and was generally accepted. It was remarkable in its lack of remarkableness. It was just another day in youth group, just another kid with his own story melding into the crowd of teenagers. It was just another imperfect soul being welcomed into the Body of Christ – something all churches should be easily good at, but something that, unfortunately, not all churches are.

It struck me, then, the other side of what I’d written previously – that inclusion is not easy. When inclusion involves trying to make it work, trying to convince people that it can work, trying, trying, trying to get through a wall of uncertainty or resistance, it’s not easy. It’s hard. Probably far too hard. But when done well, it’s pretty darn easy. It’s a matter of welcoming new people, inviting them to do things with you, helping them when they need it and encouraging them from time to time.  Not rocket science.

Kyle knows the difference for sure. After the struggles in band, Kyle said no to continuing that activity. But after youth group, I asked him if he liked it, and if he wanted to go back, and both times he said “yay.” He clapped. I join him in applauding the young people and leaders who understand we’re all imperfect…and for being such an awesome, easy example of the unfailing, all-inclusive love of Christ. 

In my life as an actress, I once played the Virgin Mary in a comedy. (Another story for another blog post.) I often said to my Joseph, “Say yes to Him, Joseph.” I thought of this while watching Kyle on “his’ horse at Horseshoes of Hope in Camby this week. We’d had such a difficult week, and Kyle looked so relaxed and happy on the horse. Because he isn’t doing band now, we signed him up for the fall session. We also signed him up for League of Miracles Saturday baseball games since he won’t need to go to band contests. And I realized Kyle loves these things, and if we’re making this about Kyle, which is what it needs to be about for our family, these are things he needs to be doing anyway. 

When a door closes, sometimes the doors God had in mind for you swing widely open into view. When a door opens in our lives, if it’s potentially good for us, we should say yes. It may be God opening that door, and we’re saying yes to him. If it fails, then I don’t think it was God’s door after all, and the failure, however painful, is instructive. It’s a signpost, a “don’t go here, go there” kind of instruction. With a prayer of “where, God?” and an open heart, it’s amazing the doors that fly open. It’s amazing the joy that awaits.

When you think of that failure, that closed door, the disappointment may still stab your heart a bit. But the joy of the morning can sit beside that and slowly, gently overtake it. For us grown-ups, that’s an effort sometimes – something to work on. For Kyle, it happens the minute he sits on a horse, gets a smile from his leaders, has a good time in his class. We should all look for ways to forgive, forget, and move toward joy as easily as my guy. We should all look for ways to say yes to the little joys of life.

Thank you, God, for special education teachers

Kyle's wonderful former teacher sent me a lovely note after reading my inclusion dragons post. It said in part: "Please always know that there are some of us who know what extraordinary people the Kyles of the world are, and how much we can all learn and are blessed to have our lives and hearts touched by these wonderful humans."

Meanwhile, Kyle's current teacher sends me texts or emails fairly frequently to let me know how Kyle is doing, or to ask a question about what Kyle likes or what his behavior might mean. He's new to high school and can't tell me about his day. She's fully invested in making school a success for him. He loves her. He loved the teacher who sent me that note, too. He has loved every teacher of special education he ever has had.

Kyle is an excellent judge of character. I would just like to give a huge gratitude whoop to the people who lead our special education classrooms, and the paraprofessionals who serve as aides in those classrooms. They aren't paid enough. Some students with challenging behaviors sometimes hurt them. Every student has an individualized education plan. They adapt curriculum, environments, activities and their teaching approaches to meet the needs of their students. They run into parents who sincerely hope their child never has to set foot in their classroom. Their students rarely give passionate senior speeches about their awesomeness. They are overworked and underappreciated. They're chameleons, they're advocates, they're coaches, they're firm, they're soft. They are love. What they are not, by the way, is paid enough.

Kyle may face challenges of understanding and compassion out in the general education environment, but venturing out into the stormy seas of inclusion is oh so much easier when you have a safe place to land, a soft place to fall. A place that challenges and embraces you all at once. That's exactly what a good special education teacher and her paras provide. Thankfully, Kyle has had a lot of great special education teachers throughout his life. We are the better for them.

Truth and Love

As people have reacted to my blog post about Kyle’s inclusion issues of late, and as staff has reacted to my withdrawing Kyle from band, I’m struck by a few truths.

1.  Truth often lies in the gray areas that exist between the perceptions of those involved. It turns out that some of those who, in my perception, excluded Kyle, in their mind, did their best to include him. I’m not here to debate it. I would suggest that it might serve as a reminder to all of us that, when we are quite sure we are in the right, to pause to reflect whether there could be any nuggets of truth in others’ perceptions as well.
2. Many people have hearts full of love. Kyle’s former teacher who emailed me to tell me how anyone who allows Kyle in their life is wonderfully blessed. The 15-year-old who reached out to me and single-handedly orchestrated Kyle’s invitation to youth group. The church youth leader who sought me out to tell me they would LOVE to have my son in youth group. The many people who correctly assumed that those who can’t accept Kyle are the biggest losers in this scenario.
3. We are not alone. Our story resonated with many parents of kids with special health care needs because they too have been down similar roads. It is important to tell our stories. It is important because together, we can make change. It’s also important because we can let each other know we are not alone, we are understood, and we are not delusional. Parents are still the best source of support and power for other parents. For this reason, I’m glad Kyle’s story is being shared, as a little reminder that no one is alone in this.
4.  Kids with intellectual disabilities have a lot to teach us. I asked Kyle how school was and he clapped and said “yay.” No band today. Lots of fun and learning with the teachers and classmates he loves. Life has worked out, yesterday’s moment is over, and there is plenty to enjoy about today. Let’s smile and hug. That is truth. And love.

So tonight, Kyle smiled, and hugged me. I laughed, and hugged him back. He’s moving on. And I’m doing my best to keep up.

Slaying inclusion dragons may not always be worth the fight

It has been a week that I had allowed myself to believe couldn’t happen. My son Kyle may have multiple intellectual, developmental and medical disabilities, but I believed he was welcome, even loved, by just about everyone he meets. That people are basically good and would either welcome my son or stay quiet and at a distance if they did not.

This week, the rooster crowed three times. And I am reminded that people with disabilities are welcomed by some but not all. That some adults’ comfort with people with disabilities ends where the invisible line that marks entry to their world begins. That inclusion is best but not easy. And that parents’ advocacy for their child to be included must not supersede their child’s right to make their own choices and pursue their own happiness. Most of all, I’m reminded what some Olympic divers mentioned last week: that my son’s identity is not in others’ attitudes, not in his activities, but in Christ. And that even if others don’t recognize that, it is my solemn duty as his mother not only to remember but to honor it. Anyone who can’t see that Kyle is fearfully and wonderfully made does not require the repeated donations of our time, our son’s happiness, my efforts or my tears.

On Monday, our nurse felt a photography assistant at band pictures was actively trying to exclude our son and made fun of the fact that he is the band’s manager. This individual vehemently denies this. I have made my displeasure known to the photo studio, the band and the school administration. In the end, Kyle has been mostly supported, and I have negotiated a free glamour shots photo session and pictures for all the students in special education in his high school. It was painful but there was no easy solution, and by the end of the week, I was ready to make some good out of it and let it go. Then, on Thursday, I took Kyle to band practice and tried to find things for him to help with. As the director told the band booster that he needed 12-14 parents, and as I volunteered that Kyle and I could help, the parents proceeded to round up other parents from various locations and left Kyle and I standing, alone, without a word. Taking a deep breath, I took solace in the information that Kyle could help pass out water to band members at the football games and at contests. Friday night, at the football game, I approached the band area just before halftime with Kyle, and told the band mom in charge that the booster officer told me he could help with water. She said volunteers had to have background checks. I said I’d had an extensive background check and am an approved volunteer, and Kyle is a student. She said young students can’t help with the water because the kids are in their uniforms and we can’t risk spills (of water). I said Kyle isn’t a young student, he’s 16, and that I would be with him. She said she was told no one could help. I said I was told to bring Kyle to help. She said she was sorry, but she just didn’t know who to ask. I looked at her long and hard, turned and walked away with Kyle. I walked away before I yelled, or cried, or did something else inappropriate.

Kyle’s involvement in marching band seemed like a good idea. His brothers had been in Ben Davis Marching Band. Kyle hung out with me while I volunteered with the band sometimes. He loves music. There are lots of things to do for marching band, and he could be a helper. I wasn’t asking much. The director said okay. The band booster president was supportive. The kids were always just fine. But in the end, there was never anything for Kyle to do. There were never any ideas about how to actually include him. Every idea that came up just didn’t work out – or wasn’t tried. Kyle liked the idea of being with the band at first, but spent summer band camp and band classes mostly sitting, watching, and bored. By the time I actually asked him last night if he still wanted to be in band, he said no. I’m not surprised. Like any human being, he wants to feel like an important part of the groups he belongs to. He doesn’t want to be tolerated, he wants to be accepted. And, as it turns out, his presence in band was absolutely, and mostly kindly, tolerated. But his participation was not accepted. I could keep trying, but he doesn’t want it. I can’t say that I blame him.

Inclusion is worth fighting for. But it’s a means, not an end. A means to a good life, to belonging, to happiness. When the efforts for inclusion are making the child unhappy, and the resistance to inclusion is making the parent angry and hurt, and the program involved in the inclusion can’t find a way forward, then it may be time to give up the fight. I don’t like to give up a fight, particularly when the fight is for justice and acceptance, but more than that, I don’t like to make my child unhappy to prove a point. So, I’m done. No more band. Kyle can skip band class and stay in the life skills class that he clearly loves. We’ll continue to look for extracurricular activities in the school and community – and that search will begin again next week. He already has a number of community and family activities he loves. Not all dragons must be slayed. Nevertheless, I’m sad. Sad that dragons still run wild where I had thought, and sincerely hoped, that they could be tamed by the unassuming smile and open-hearted love of my boy.