When Beth was little, she was just one of the kids. At home, at church. She played with them, hung out with them, went horseback riding, did crafts. (I was the over-protective crazy mom. When her Missionette group went horseback riding, I didn't know if she could do it so I ran along side. The entire mile trail. Jumping over bushes... SO embarrassing when I think about it now.) But Beth was just a regular kid.
(Beth is in red, sitting on the couch)
When all of these friends reached Jr High, things began to change. At school, the teachers wanted to keep Beth in Grade school one more year. As hard as I fought, I knew they were probably right. She wasn't ready for Jr. High. At church, their Sunday school class was getting into topics that were over her head. So we took her out of class and had her sit with us in church. A decision I regret now. Even if she didn't understand the discussion, maybe she would have gotten more out of it then we thought. And keeping her out caused her to grow away from her friends. The better way to say that is that her friends grew away from her. They were the ones changing. As they should. Beth was still only around 6 or 7 mentally.
I showed Beth how to shave her underarms and her legs, but she wasn't interested. (The ironic thing is, today her arms and legs do not have any hair!! I sometimes wonder what would have happened if I had never started shaving...) Well anyway, I showed Beth how to put on make up too, but she didn't care about that either. Meanwhile her friends were all entering high school and Beth was not keeping up. I really began to see the differences between her and her peers. For me, that's when her having Down Syndrome really became difficult. I would see her friends learning to drive, going out to the movies, just hanging out and Beth wasn't a part of that anymore.
Beth has one seat that she sits in at church. We've attended there since she was 4 and for years, her seat is in the 'youth section' (it's not an official section, it's just where the youth always sit) second row, on the right end. She goes in early, puts her coat over the back, her bag on the floor, then goes to the coffee stand to get a strawberry banana smoothy. She knows she can't take the drink into the Sanctuary so she leaves it at the main information booth. All the ladies there know Beth will be back for it! I will never forget one Sunday, Beth was coming back into the Sanctuary to sit down. An old friend (one of the kids in one of the above photos) was sitting in the seat next to Beths. She sat down, got all settled and this 'friend' after watching Beth, picked up their stuff and moved to another seat. I sat there with my mouth hanging open. I couldn't believe it!!! Beth of course, didn't even notice, but I was stunned. (Well, at least I think Beth didn't notice. This was years ago and she never said anything. Gosh, one more thing to worry about!)
Beth joined the youth choir at church but after a year was asked to leave. They brought me in for a meeting and explained that Beth just wasn't able to keep up. They were right. When she got tired, she would sit down, right there on the platform in the middle of a song. She just couldn't keep the pace that was needed. So we pulled her out. I want to try her again, but I honestly don't know if she has the stamina.
Today all those friends that Beth grew up with are getting married. They're moving away and having children. Beth.... sits downstairs watching TV. I still check her toenails once a month. I still help her with the laundry. I take her grocery shopping. A big day for her is when we go out to eat. I don't think it's just us. This is the very reason Gene developed All Aboard. His son grew up as just another kid. He had a lot of friends, then he graduated from high school, his friends got married and moved away and Mike sat in his room. The All Aboard bowling event started with just 5-10 kids. The latest newsletter stated they now have over 100 bowlers each week! Adults with special needs have a difficult time fitting in.
It's not hard to jump on a trampoline or throw water balloons. But getting married? Driving cars? Having your own apartment? Those are huge. I'm not saying our kids will never do those things. I am saying you will see the differences in your child and their peers at that point in their lives. I find those differences the most difficult. It's been harder for me to accept Beth having Down Syndrome as an adult than it was when she was a kid. For kids, (any kid, every kid) most things are physical; crawling, walking, learning to tie shoes, running, etc. But as they become older, life becomes a mental game; teenagers lying, trying to get away with things, geometry, college applications, etc.
And it's Beth's mental abilities that we're so unsure of.
10 comments:
thank you for sharing this with- i can imagine it was very difficult to write and i will admit it was difficult to read... of course these are the things i think about with whitney and it breaks my heart to read about your experiences with the noticeable differences with beth becoming an adult - and how she went from being 'just one of the kids' to not able to keep up... these are the things i instantly thought of when she was born and the fear of the future and the unknowns took over, but then i tried to concentrate on the day to day and enjoying each day and celebrating each thing that whitney is doing now and only let myself go there (the future) every so often... i guess all we can do is take each day as it comes and do the best we can which is what you obviously have done with beth!!! thank you again for writing this post and sharing your experiences with us!!!
Yep - this is the big elephant in the back of my brain... I don't even know how to think about it, wrap my mind around it. I hope Max really loves hanging out with his parents, and more-so, that we continue to love being hung around :)
And hopefully, all the Ds kiddos we live near, stay in the community so we have lifelong buddies!
This made me cry. The girl leaving at church. That breaks my heart. Now, the thing I wonder is, what if the choir director let her stay. And SO WHAT if she sits down halfway thru the song. Does that really matter? What matters more? That she likes being a part of something or she sits down when she needs to? I feel sort of mad at the choir director.
I am sorry you are hurting. I know that has to be hard. I love that you have Beth and you get to be her Mama and you love her so much.
Wow. Ok, so my question would be this: What can you do to change this for Beth? She doesn't HAVE to spend her time in the basement watching T.V. There are ALL SORTS of things she could be doing with her peers!
Angela is almost 15. Yes, her typical friends have long since left her behind. They stopped inviting her to birthdays and other events years ago. (who am I kidding? Angela's behavior was so horrid she was rarely invited to things even when she was little) Her GOOD friends are her TRUE peers. The ones who don't care if she makes odd movements, or noises, or is still obsessed about the shows on the Disney channel. Why? Because they're all kids with various special needs who all have their own quirks. They could care less about Angela's. Her social life is far more busy than mine. She plays adaptive floor hockey and her two best friends are on the team (the adaptive rec league is a competitive high school league for students in grades 7-12, with several sports throughout the school year.) She bowls and swims for the Special Olympics, and has A BLAST doing so. Most of the people she competes with are adults. Most of those adults also have DS. Friday night she went to the school dance, along with all her peers. Yes, she mostly hung out with her friends from her special ed class. Did she care? No, because she was with her true friends. (and the boy she has a crush on. LOL) There is also the Friendship Club for people with disabilities age 14 and up. There are several activities each day of the week to choose from. Angela rarely attends them because she's too busy with other things. Here, once kids graduate from school, there are several organizations that hold adult activities. They can be busy every evening of the week if they choose to be. My guess is, when Angela reaches that age, I won't be able to keep up with her social calendar. It's definitely an effort on my part. She can't just get herself to activities, I have to get her to them. (or she can take the public transportation provided to people with disabilities here.) It did take me some time to learn about all of these programs, and I'm sure there are more I've yet to hear about. But, lonely and Isolated are far from our vocabulary! There is just too much to do!
So what is there in your area? Most cities have lots of organizations that have activities going for adults with disabilities. If you haven't already, contact your local ARC and see just what there is that maybe you haven't stumbled upon yet. Special Olympics is a GREAT organization to get involved in. There are sports that don't require much physical stamina, like bowling. Also, check out your community Ed. department to see what kinds of activities they might offer for adults with disabilities.
Thank you for sharing...I'm sure this wasn't an easy post to write! Obviously we are no where near this stage, but it is something I think about from time to time. I try to stay focused on the present but I think a good dose of reality is healthy too!
This was good for me to read. Makes me wonder if we shouldn't try harder for Eon to make some "special" friends along with his typical peers...ones that won't leave him behind. I'm been of the mindset that the local Ds group is "too much trouble". Probably need to get over that, soon! :)
Thanks for writing this. As hard as it is to read, it will be harder to go through. This has been one of my greatest worries since Kaety was born...what happens when she's older. Right now, she's a "typical" baby...but I so worry about the future. One question is how your other typical daughters dealt with this. Did they help stick up for Beth? Did they lose friends over the "pulling away" as well? Just curious.
Thanks again for your perspective and helping those of us who are miles away from adulthood with our kiddos see both the good and the sad.
This is exactly why I've bookmarked your blog and now love checking in! our M doesn't have DS but she has intellectual disability and devel delay and doesn't fit in either. She kinda knows it and kinda doesn't. But the other kids pick up on it, right away. And sometimes it doesn't matter. But, she's only 14. Sooner than later, it will matter more and more. And, I don't know how to get her involved in the special olympics and ARC activities and all….she has little language, and well….as you know, it's just so complicated. Sigh.
Hard post to write.
But important to read and open for discussion.
Thank you for this!
I can imagine this probably wasn't an easy post to write, but I'm glad you did. Everything isn't always roses and I think sometimes we like to share only the roses of life. But there is more to life...the thorns on the roses too. I've thought about what it'll be like when the gap between Kayla and her peers widens as I know it will. Life will be harder as a teen/adult. I just need to prepare myself for it, but I don't know if you can actually ever prepare for something like that can you?
I fear this. I do a good job of finding the more a like then different now while my daughter is 9 months, but as much as I try to fight it, I know someday shes going to be really different. People aren't going to think shes so cute as an adult who cant take care of her self. Ultimitely I want her to be happy. But I also want her to fit in, to be liked, to be wanted. Its the one thing about her diagnosis that I have kinda refused to really think about. Thank you for your honesty and not just sugar coating a happy-go-lucky DS life. I will enjoy each day with my daughter but I also want to be prepared for when its different.
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