The last few weeks of the school year I was in a funk. Usually I know what precipitates my “funk” but I really couldn’t pinpoint it this time. Perhaps it was related to Rachel’s emotions due to her boy craziness or finishing middle school and going to high school or all of the above. I am sure some was related to a lot of sadness and loss in my life this past six months. I lost my aunt, my mother-in-law, my husband’s grandma and several good friends. Just before mother’s day weekend, we lost our friend Charley. Charley and his wife Sharon were like adopted grandparents to Rachel. Kind and loving souls from our days in Memphis. We didn’t tell Rachel until school was out. That weighed heavily on my own soul.
Then, we had a friend issue that launched me into a full scale pity party. My first thought was that I shouldn’t have blogged about “Real Friends.” The circumstances of the situation aren’t really important. Something Rachel doesn’t even know about and more about my disappointment with how I thought a parent should have handled something. My expectations. My disappointments. More than anything, I felt this deep sense of disillusionment. This sense that we have worked so hard to try to facilitate social inclusion, and now some of the people I thought I could count on don’t seem to get it at all. About the same time Rachel, her friend Savanna and I were invited to speak at a conference. Our topic: Social Inclusion. I can tell you in a presentation all we have done to make social inclusion work. I can tell you what has worked and hasn’t worked. I can tell you what I hope worked. On this particularly day, mostly I could tell you that I’m not sure why I did any of it and that maybe it doesn’t work. All I could think was “I feel like a fraud.”
So I wallered in my little pity party for a few days. I even mentioned to two very good friends that I felt like a social inclusion fraud. Neither knew the circumstances but both encouraged me to press on and that this “fraud” contention surely wasn’t true. They gave my ego needed warm, fuzzy strokes. Still, I found myself in this state of what I call disillusionment. So I find myself thinking about my “Real Friends” post and friendships and inclusion even more than usual. That’s a lot. I can’t really pinpoint why (though a wise friend’s words of encouragement did help) but I did pop out of my pity party and funk. You may remember from some of my other posts that I think a good old-fashioned pity party is fine every now and then and as long as you don’t get stuck there.
I have been working on this blog for nearly two weeks because I just cannot figure out where to go with it. In my continued evaluation of all of this, I stand by my “Real Friends” blog. Social inclusion looks different for each individual whether they have Down syndrome or not. For Rachel it is combination of school, church, Christian Youth Theater and other community activities. For Rachel it often involves older friends instead of friends her own age. Today, I must honestly say that something feels so empty about all of this right now. Maybe that’s how I close this. I don’t have all the answers but I’m still committed to inclusion. We will still continue to do what we do, trust in God, and pave a path of hope for ourselves and future generations.
I leave you with this challenge. Invite one of your child’s peers who has a disability or who is seen as different to do something. Those of us who push inclusion grow tired of always being the Social Inclusion Manager, arranging the play dates, sleepovers, movie viewing and lunch dates. If you are afraid that we don’t trust you with our child, just ask what makes us comfortable. I always say that we are all a work in progress – especially our kids. Parents, please be the one who encourages your child to remember to include their friend with a disability in their plans. It makes a huge difference.
Hi Jawanda, This really hit home for me. Sometimes I feel like a social inclusion fraud too and wonder if it is worth the effort. This is such a heart-breaking issue for me because I’ve turned into my 12yrold daughter’s social life manager. I hate that. When my niece lived with us, she had a full social life and was flooded with invitations. My daughter rarely gets invited to parties and if she does, it feels like a sympathy, doing my obligation invitation. One time we accidentally ran into one of her friends at church who was hosting a birthday party that she was not invited to. And this was after my daughter had invited that girl to our home for her birthday party. I was absolutely devastated and to this day that girl’s family is completely clueless as to how much this hurt. Inclusion is so hard that I’m about done with it. I would rather see my daughter have real, genuine friends who are interested in her – she has a few from her sped class – than those who think she is a sympathy case.
Inclusion is always difficult, especially when you have two children who live on different planets. I think a wise woman by the name of Jawanda used that statement with me before Rachel was even thought of. When one is outgoing and one an introvert it creates issues. Or when one is perceived as normal and one is not. Hang in there this parent is a tough row to hoe and the only way I get through day to day, even with my children in their late 30’s, is by the grace of God.
Ms Denise Pedersen, I have had the best role models in the world for parenting and life through my involvement in 4-H. So grateful for being entrusted with your children and being allowed to learn from you all. Now that said, there are a few that I don’t want to model and that’s good to see too!
Thanks for reading friends. When Rachel was a toddler, her speech therapist had a teen daughter with spina bifida. She had an incident where a friend didn’t invite her daughter to a party. This was a friend who she had been friends with since childhood. The ST pointed out that while the teen should have done better, she was most angry with the parent. I agree. Sometime parents need to prompt their kids to do better. That’s really at the crux of my crossroads today. And we do have friends (parents) who do that but they are definitely a shrinking exception.
Have faith! You do so much and it DOES make a difference! Even if you don’t see it! I didn’t know much about Down Syndrome before I married James. I’ll admit that I know much more now, but the biggest thing that I learned is not so much about how children with Down Syndrome are different from other children, but how much they are just like any other child. Rachel taught me that. She also taught me how sweet & loving & trusting & accepting Down kids are! I don’t think I’ve ever seen or heard any thing from Rachel that’s even remotely exclusionary or prejudiced. It’s not just older people who want to include Rachel either: Claire LOVES her cousin! Even if they fight sometimes (mostly due to Claire being bratty) she still loves Rachel to death! She’s been sayin lately how much she misses Rachel and she’s been asking when she can see her again. Claire sees nothing “different” about Rachel at all! All she sees is a beautiful girl whom she adores! We don’t even talk about the fact that Rachel has a disability. It hasn’t come up, so as long as she doesn’t see anything “different” about her beloved cousin, we don’t think we should point it out. If it comes up, we’ll explain what Down Syndrome is, what it means, & how it effects Rachel then. Until then, we think Claire should just be allowed to love her cousin just how she is; the same way she loves everyone else. No preconceived ideas of what Rachel should or should not be or what she can or cannot do, or anything else people tend to do once they realize there’s a condition called Down Syndrome and that some people are born with it, & before we start to associate negative attributes to that condition. Claire just sees Rachel for who she is, and loves her just like she is. We hope that knowing her cousin as a person first, she will develop nothing but positive opinions. When she does eventually find out about Down Syndrome, she will associate all of those pleasant memories & opinions with the condition because of knowing Rachel, and not (we hope) automatically attach negative prejudices to the condition. I know that it might not mean as much that Claire doesn’t see anything different about Rachel as it would if Claire were the same age as Rachel, but I hope it at least means something! Changing opinions of society permanently starts with us raising our kids to believe that Down Syndrome doesn’t equal “bad” and that people with the condition are essentially the same as everyone else in all the ways that are important: they think, they feel, they love, they have hopes & dreams, they can get their hearts broken, and they can accomplish great things…just like everyone else!
Natalie – thank you for your heartfelt post. It means a lot. I am not losing heart of giving up. We have always been an open book because I want other families to see what works but I also want them to see that it is not always pie in the sky. It is not a perfect world. Thanks again, Natalie.
A few of my son’s friends have invited him to “play dates” this year at school. Each parent has approached me to say that they don’t feel comfortable watching my son because they don’t know what to do with him. I explain that he is like every other kid but he has to know what is scheduled for the day. I am actually looking forward to the Just Like You autism film so I can get copies for these parents. They are nice people, they just do not know what it is like to take care of a child on the spectrum. Neither Kade nor I take it personally.
Thank you for the honesty of your blog. “Disillusionment” comes and goes with us as well. However, we always come back to social inclusion being way better than the alternative; so like you we carry on. The good, fun experiences our daughter shares with “friends” far outweigh our moments of “disillusionment.”
Maite, thanks for reading and commenting. You summarized my thoughts well.
I had hoped this post would encourage conversation and it has. I think those of us who are strong inclusionists know there will be valleys and mountains. I agree with Maite that the good, fun experiences that I have blogged about a lot far outweigh the disillusionment. Still we need to visit it and converse about it and continue to improve.
Jawanda,
I miss you all, but I enjoy keeping up with you through your blog. Thank you for being so honest, even when things are tough. I know you know this, but Rachel is a lucky little girl and you and Jonathan are lucky parents. 🙂
Keep sharing~
Laura
Oh Laura – thanks for reading and your kindness. Please be sure to read today’s blog on my blog. Trying to do our part and it is not always sunny but you can usually find a silver lining. Miss you. I need to see more pictures of your family. I never see your stuff on FB?
I am not on Facebook anymore. Shoot me an email! I would love to catch up. 🙂