Rachel came home from school yesterday and started asking me questions. “Were you invited to birthday parties when you were growing up, mommy?” I tried to answer the question, but it was hard. I grew up in rural Arkansas and we DID NOT have these lavish birthday parties. My mom always made us our favorite food, our favorite cake, and we got a present or two. We had nice birthdays, and I did have some girls over when I was a teenager…but we didn’t do all this stuff we do now. I could tell something was eating at Rachel and I said, “Rachel, is someone having a birthday party and you weren’t invited?” She has the most tender little heart and she was trying not to cry, but the tears started to spill as she nodded “yes” and tried to tell me what happened. As it turns out, a friend was invited to a party by someone who is not Rachel’s friend. The host did this in front of Rachel. Hence, the problem. We talked through it and at the end of it, I think all is well, but it reminded me of the question I so often hear, receive, and see: “Does your child have real friends?”
It seems like that question would have an easy answer, doesn’t it? It isn’t an easy answer for me though. I think it is in the definition of a real friend and also the perceptions of what a real friendship involves. Rachel is popular at school. The kids tell me that. The kids tell her that. The office staff tells me that. She has friends at church and Christian Youth Theater (CYT). She is included at school, at church, at CYT, and at dance class. We have outings to movies, to plays, to eat, and to ball games. We have sleepovers. Her friends come to the Down Syndrome Walk. Her friends help her. Rachel has a full life. However, with some exceptions, it has almost always been me who initiates the play dates and the outings. And as she gets older, I see that is even more true. Notice I did say “exception” because there are definitely exceptions when others have initiated. That is definitely the exception and not the rule though.
Rachel is an only child. So other than by observation and from what I hear from friends, I don’t know if it is like this for typical kids. Overall (again there are exceptions), my friends who have a child with a disability and one without say it is very different for their child with a disability. They talk about their child being lonely and deciding to go to a special class because they want their child to have “real” friends and they just do not have them in the mainstream. Maybe the kids are nice to them and include them at the school or church buildings, but beyond the walls, there is little. Of course, part of the difference for the typical siblings is that their typical child may be better able to manage social outings without the help of a parent. Often it is harder for us to decipher the circumstances for our kids, to interpret a party invitation, to get the correct name of a new friend, and/or to get a phone number to make contact with someone outside of school.
All kids, disability or not, may be victims of mean and sneaky kids. A friend called just the other day heartbroken by the action of second grade mean girls. Yes, I said “second grade.” Girls who intentionally told her daughter (who has Down syndrome) to hit people or taunted her until she did. The mom is not condoning hitting and is trying to work on that. However, the other girls come up with a great story and manipulate their way out of trouble. Unable or unwilling to manipulate the story, her daughter gets caught and is left to be punished. I hear this a lot and Rachel has fallen prey to these kind of mean girl bullies. There have always been and there will always be mean and hurtful kids. There are mean and hurtful adults, too. As a child and in my adolescent years, I vividly remember being left out of some things and the hurt still rears its ugly head if I let it.
Instead of camping on hurt and exceptions, we try to work at helping build relationships for Rachel. We try to process and learn from the challenging experiences. From cookie parties to sleepovers to teaching Sunday school and going to church camp, I have almost always been the one initiating friend opportunities. That’s not just with her typical friends though. Rachel has quite a few friends with Down syndrome and other disabilities, and I am usually the one who is facilitating those friendships, too! In all this facilitating, some work and some don’t. Rachel participates in a “lunch bunch” and girls group at school. This helps with her social interactions. We do peer presentations at school and church. She loves the American Girl books on manners, middle school, and how to act at parties. As Rachel gets older, it is more of a challenge to facilitate these friendships. It is so nice when someone invites Rachel to go with them to a ball game or a movie or out to eat or to sleepover, so I don’t have to be the one coordinating it every time. It is nice when an older girl invites Rachel to do something that would give her dad and me a chance to do something.
Another little aside is that for our family, friendships with Rachel are most often a family affair. Forget Down syndrome—I want to know who her friends are and what their families are like. Do we have shared values? The same as for all of you who have kids who do not have Down syndrome. Most of Rachel’s closest friends have families who are part of our world. Rachel also has several older teen girlfriends and a couple of young adult girlfriends who spend time with her. Their maturity is helpful, and the fact that Rachel sees them as young and cool means that they can help her with things that are a little more difficult coming from mom.
So back to the original question: Does your child have real friends? Yes, I believe Rachel has real friends who are her age. I think her real friendships sometimes look like everyone else’s and sometimes they don’t. All of my friendships don’t look the same. Some I have had to work very hard at and they have been worth it. Others, it has been much easier. For our kids with Down syndrome and other intellectual disabilities, it may take a lot of work to find the right friend fit. I suspect more work than most of my friends who have typical kids. I also think that there are pros and cons in working to engineer friendships. I have more inside knowledge about what’s going on, for one thing. Truthfully, my life situation makes it so I can be very involved in Rachel’s life. I am also a social creature and an organizer, so that plays a role in all of this, too.
Many of my friends, who have kids without disabilities, talk about these same issues and struggles. The bottom line is that anytime our child hurts, we hurt. Yesterday, Rachel and I ended our conversation with a hug and she uttered one of her current Rachel-isms: “Growing up is hard mommy.”
- Jawanda Mast