Inclusion

A few years ago, David and I noticed that my local married siblings' families were doing a lot together. We read my sister Kami's blog posts about the fun the cousins were having and wanted Jonathan and William to have that too, but hesitated to speak up. William was always difficult for me to take anywhere. Even at family gatherings, we'd spend all our time watching him to prevent his running or wreaking havoc. He was difficult. And could we knowingly inflict difficulty on others?

It wasn't too long before our boys were invited to a cousins party at Kami's home (she's kid party planner extraordinaire). We were delighted for this chance for William and Jonathan to spend this time with their cousins. But, as we'd feared, it was hard. I remember, near the end of the party, sitting cross-legged on the floor with William on my lap, fighting back tears. (I'd tried, but not always succeeded, at keeping William from destroying a toy or two here, a cup there.) My dear sister came and sat next to me, and told me that I needed to keep bringing William to family gatherings, even though it was hard. She said they needed to learn to have him around. That meant more to me than she may ever know. She wanted him included.

Flash forward to this year. Jonathan figured out the child-proof doorknob guards and has been spreading his wings into the neighborhood. Our next door neighbors have a little girl his age, and next to her lives a little boy. All three are in the same class at church. Since our neighbors seemed willing to have Jonathan around, we'd been letting him go over when his friends were playing outside. We'd kept William back because none of the children are his age and, again, we didn't want to introduce a difficult element. It finally became clear to me, though, that Jonathan himself was being a "difficult element" at the homes of his friends. His friends were very comfortable at each other's houses, but we didn't know either family as well as they knew each other, and Jonathan hasn't developed the social skills yet to be completely easy to have around. He has a very strong personality (which serves him well as William's little brother). I couldn't be over there with him, because I was home with William, so I determined to not let Jonathan go to play at his friend's homes without a specific invitation. I sent a message to our next door neighbors letting them know as much and apologizing.

Then Jonathan, William and I had a collective melt-down. (Jonathan because he wanted to go play with his friends, I because I couldn't let him, and William because he couldn't take watching us cry.) Afterward, I tried to get the boys to bed, but they were bouncing off the walls. (I was alone with them; David was camping with the Webelos.) A friend called in the middle of the melee, sensed the state I was in, and showed up a few minutes later with her husband. They took the boys to their home while I readied everything to make bedtime go smoothly and took some deep breaths. 

There was a knock at my door. I thought it was the boys returning, but it was my next door neighbors with a plate of apple crisp. They suggested that the answers to the current difficulty lay in 1) getting to know each other better, all three families, as neighbors, and 2) in my visiting their homes along with Jonathan . . . bringing William too. They felt Jonathan needed to be out and social (oh boy, does he) and that as hard as it might be (I warned them), they needed to get to know William. They needed to know more about what it was like for us as his parents. And they wanted their children to learn to be comfortable around children with special needs. They love us and want us in their lives. Ever since that night, Jonathan and William and I have been out and about the neighborhood together often. (Jonathan is helping us all be more social.) We are including ourselves more in the lives of our neighbors, and they are wholeheartedly letting us.

Seclusion vs inclusion. Twice now, we've inadvertently found ourselves leaning toward the former and were encouraged (by the lovely people around us) to choose the latter. William starts Kindergarten next week. Once again, we've found ourselves in the uncomfortable position of having to choose. Do we really want full inclusion with his "typical" peers, when we know it will be more difficult for everyone involved?  We are causing others difficulty by putting William into the regular mix, and that's . . . difficult . . . for us. But if my sister and my next door neighbors are right, it will be worth the difficulty. It helps that we feel prompted to proceed. We are grateful for the staff at The Walden School of Liberal Arts who, despite the difficulties inherent in the situation, have opened their arms to our little boy. I received an email from the special needs coordinator today. She wrote:

I believe William can flourish at Walden and we will love him for as long as you are comfortable with him being here. There are many things our students can teach each other.

The other day, I ran across a speech given by a high school senior in Illinois at an literary assembly in 2007:

I know how much you can learn from people, from all people. Society is changing. The mentally handicapped aren't locked in their families' basements anymore. The mentally handicapped aren't rotting in institutions. Our fellow human beings are walking among us, attending school with us, entering the workforce with us; asking for nothing but acceptance, giving nothing but love.

He said he's learned more from his mentally challenged sister Olivia's simple words and love than he has in any classroom.

I only hope that, one day, each of you will open your hearts enough to experience true unconditional love. I hope that, someday, someone will love you as much as Olivia loves me. I hope that, someday, you will love someone as much as I love her.

We similarly hope that the difficulties of working with William in our extended family, neighborhood, and at school will be worth it to those who interact with him. William has changed us so much just by being born. More than 80% of children with Down syndrome are aborted in our society before they have a chance to be born. There are some countries still where children with special needs are rejected by their families and society, kept away from the general populace in institutions. I have seen wonderful couples, some already with large families, guided by the spirit to go and rescue these children. And I believe it is not just for the sake of the children themselves (who God is so very mindful of) but for those who need to know them.

As a side note, I don't think the principle of inclusion applies only to those with special needs (unless it's understood that we all have our own special needs.) When I moved to Tampa, Florida alone in 1999, I had to choose whether to include myself in church (social) activities. I was uncomfortable entering the fray alone. As I prayed about it, I was surprised to feel that I needed to include myself not just for my own benefit, but because people needed to know me.

I am learning a lot from knowing William. I needed to know him. I thank God I do know him. I'm thankful for those around us who want to know him too.

photo courtesy of SDesigns Photography