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. Well, 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 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 fiends, I don’t know if it is like this for typical kids. Overall (again there are exceptions), my friends who have kids 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 building, 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 that 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 sometime look like everyone else 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 pro’s and cons to working to engineer friendships. I have more inside knowledge about what’s going on for one thing. Truthfully, I 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 Rachelisms, “Growing up is hard mommy.”
Wow!!! I agree with you 100%! When Jordan was younger I prayed that God will send her true friendship. I’m blessed that Jordan has a group of girls that she calls her “BFF’s”… But I’m still frightened about the moments I’m not around and girls are rude. It’s a struggle but I’m thankful that when she’s around her friends she forgets about the rest!
This was like I was reading about my son’s life! I always hear how much his is liked in school, how popular he is, etc….yet, we have NEVER had anyone call him to just say hi or invite him to parties. Instead………..we have the party! Every year since elementary school (now he is going into HS) my husband and I have thrown a end of the school year/birthday party for all! Use to be held at our house, now…….we rent a hall, get a DJ, make food and invite anyone who wants to come. You would think all this would help the situation of him not getting calls or invites, but…….nope:-) so….we keep making at least one day a year all about him! Thank you for sharing <3
As always, I am learning, learning, learning from you… 🙂 It breaks my heart to hear that Rachel was upset about the party invitation, but I love hearing about everything she does with her typical peers. I, too, had my own social issues as a kid, and yes, some still haunt me, but we learn to roll with it as we go along, as will our daughters. Thank you for this post, Jawanda!
This has been a heartbreaking issue for me. My 11yrold diva D’Andra has a lot of casual friends but maybe 1 close friend who is in her special ed class. She has lots of girls that come up to her at church but she rarely gets invited. When she was invited to a typical peer’s birthday party, it was excruciating to watch. I know the family meant well, but I could read the body language of certain girls that didn’t understand my daughter. Ugh! I’ve warned D’Andra of how to handle people that make fun of her but it’s still hard. I have 2 older sons and the 15yrold is a social butterfly who gets invited all over the place. My 19yrold also gets lots of invitations. So this is hard to weigh, but I’ve lowered my expectations and appreciate any sign of friendship for my diva.
I really loved reading your post. Unfortunately today society in general does not teach people to THINK OF ONE ANOTHER. Instead we go about our own way and tend to hurt others feelings. I grew up with very few friends and was often excluded from being invited to parties, sleepovers, etc so I know what it feels like. I also had an older brother that was somewhat retarded and I know how he used to get “picked” on. I wish people would stop and consider others in what they do and say.
I tell my kids all the time, “Different isn’t bad… it’s just different.” When you’re talking about experiences, like going to a new city or trying a new kind of food, I believe that’s completely true, and many people are willing to accept that kind of truth. BUT– I’ve learned over years that when it comes to PEOPLE, too often we choose to focus on our differences rather than things we have in common. For instance, I grew up as “the fat kid with the bad haircut who sang in the choir”… and many people never took time to know me. Now I know it was #TheirLoss, but back then, it was miserable.
When you have the opportunity to be kind… SEIZE IT!
Kindness is important, and it carries an its own set of unexpected rewards.
Thanks to everyone for reading. Obviously a popular and a difficult topic. We’ve had other issues like this but overall, Rachel has a lot of friends and a full life. I was able to use this as as teachable moment. We tell Rachel not to talk about outings in front of others because we don’t want to hurt their feelings. We are not always going to be invited and especially when the person isn’t really our friend. Rachel just likes parties! We also talked about how it was probably not using good manners to invite someone with Rachel standing there. So it was a teachable time and a growing time for both of us.
Jawanda- Great post. Something for me to think about with all my girls. Thank you
This really hit home for me. My daughter is 12 and im trying not to be so protective over her!
Sadly Jawanda I feel the same way. I agree with Rachel, growing up is hard-for them & us trying to support them. You know us & our kids well & we’ve seen the challenges are all over the place. Mean kids, mean adults, bullies, etc. but you’re right to make it a family affair. Most of our get-togethers are activity related & really sparse. Three kids activities limit any extra time, even precious family time. We do the same-have to talk to the parents before any plans are made & encourage the kids to invite the kids to our house. We want the kids to feel comfortable having friends over. It’s a great opportunity to see the raw interaction & witness the real heart of the friend. With 3 kids the “friend” knows from the beginning that the other siblings will usually be a part of the activity & it’s a good lesson for all. I respect the child & try to limit the shared time but the other kids want to be included (esp. McKinley 🙂 ) and it’s a good lesson for all! I think it teaches them to embrace & appreciate the differences (age, interests, humor, etc) & in general respect for all. We keep tabs to make sure this goes well & correct ours or the friend if they don’t act nicely. It definitely makes us think twice about who they spend their time with; really treasure the kindhearted ones who take it all in stride & bring everyone up to the higher, kind, accepting level. Really appreciate the parents diligence teaching the child how to accept & treat others and love they chose the right way to behave!
Thanks for starting this conversation Jawamda. Peer relationships are the one area that I wish we’re better for Elizabeth. It’s the one thing that can make me very sad. On one hand I am so amazed and thankful for how comfortable and happy Elizabeth is at her middle school. On the other, like you, I find myself being the constant organizer to facilitate out of school get-togethers. The times when someone calls and says “hey can Liz do…” makes my heart soar! Would love to keep this conversation going.
Thanks to everyone for reading and commenting. Roxanne, it is a discussion we need to continue to have. And the comments from those who have kids without disabilities just shows that we are just like everyone else in so many ways. I am considering a follow up on how you can be a friend to someone with DS or another ID. I think sometimes there may be a loyal and faithful friend there for someone who does have a disability, if they will take that step.
Hi there! I wanted to reach out to you and ask if I could feature your blogpost “Real Friends?” in the next issue of Special Miracles.
My name is Sabrina Moyer and I am the founder of the online platform known as Special Miracles which was inspired by my son Colton who happened to be born with an extra chromosome of awesomeness! I recently launched an online/digital magazine that features inspirational stories and posts from our 180K+ members.
I came across your post and thought it was great! I would love to include it in the next issue (May) and I will have links back to your blog etc…If that is ok with you can you also email me some hi res images to use as well? sabrina@specialmiracles.com Thank you so much 😉