Our local Down syndrome group, F.R.I.E.N.D.S., has a private Facebook group where we discuss topics among just our local parents. It’s nice to have this space where we have the privacy to talk with other parents who are or will be facing the same issues.
In our Facebook group discussions last week we talked about teaching independent living skills. What are those skills our children, teens, and adults with Down syndrome need to know in order to take care of themselves? And what skills do they need to learn in order to share the responsibility of taking care of their home? It can be hard to know where to start or how to motivate our child to want to learn these skills. Those discussions sparked this blog topic that will be a multi-part series.
There is a lot Jessie still needs to learn, but she has come so far in these areas from where she was a couple of years ago or even just last year. Seeing how capable a couple of Jessie’s friends with Down syndrome were (some are older than her) in some of these areas was what inspired me to expect more of Jessie at home.
Just like with the rest of the “typical” population, everyone with Down syndrome has differing levels of ability. Not every person will reach the same level of independence, however, you might be surprised at what your child can do if you start small and build on each skill as they learn.
There are several reasons why people with Down syndrome need to learn how to clean, cook or generally be helpful in taking care of their home in addition to taking care of their physical bodies.
We’re going to start with WHY, because I’ve learned in my parenting years that if you continually remind yourself WHY, it can keep you going when the going gets tough.
WHY every person with Down syndrome needs to learn home skills even if you think they may always live at home with you.
They get a feeling of accomplishment and like knowing they are more independent.
That’s not saying that when you start changing things up you won’t meet with resistance! When I first starting expecting more from Jessie, she wanted to be selective about when she wanted to do “what teenagers do”.
Like my other kids, she thought it was kinda nice if she could stay up late and have an iPhone, but she didn’t like having to do chores. Like my others kids though, I try to give her age and ability appropriate responsibilities. I frequently remind her that she’s not a little kid; she’s a teenager and teenagers have more responsibility.
From a young age I’ve seen that Jessie, just like my other children, liked the feeling of accomplishment that came when she could dress herself, shower herself etc. She’s watched her siblings grow up and she saw that they took care of things for themselves. I remind her of these things when I need to.
It gives them something productive to do with their time.
I never let my other kids have unlimited screen time or be lazy all the time. Jessie does more of both because there are fewer things she can do independently. The more she learns to do, the less she is vegging out or bored while I am doing the mom/homekeeping things I need to do.
They have less time to be bored.
We homeschool so we have more time at home than kids do that go to school. I’ve heard parents of adults say that when their kids graduated, going from a full-day school schedule to being at home full-time it was a hard adjustment. They were sometimes bored or depressed.
Responsibilities at home won’t take so much of their time to fully alleviate that, but the more they can do at home, the less time they have to be bored.
My other kids knew better than to say they were bored….I would find them something to do that would be helpful to me. Again, this is harder to do with Jessie, but building her skills helps fill up her time in ways that are good for her and good for me.
YOU are probably exhausted and could really use the help!
When you parent a child with special needs, you are in each parenting phase usually for longer than you are with your typical children.
By the time Jessie was 16, I had been a mother for 23 years. This mama is tired. This mama is tired, physically and emotionally, of doing the things that are expected of you when you have a younger child.
Two years ago, I know I felt like I never had a moment to myself that Jessie didn’t need something. If I sat down, it seemed that was the moment she would ask for a drink or something to eat. There were parts of showering that she needed help with for a long time. They weren’t a lot of things that she could do completely independently.
Now, Jessie can make a pitcher of koolaid from start to finish (sometimes it’s a little more tart if she forgets to level the measuring cup) fix herself a drink, heat a biscuit in the microwave or make herself a sandwich. She mostly puts away everything she uses in her makings. She sometimes still spills a little koolaid when she carries the pitcher to the refrigerator when its full to the brim. Now she is learning how to mop it up. To be truthful, some of these steps could have gone faster. Have I told you that I’m tired?
Although I still feel on call 24/7 it has made a tremendous difference that Jessie can do many more things independently. Some days it does still feel like if I sit down that’s a cue for her to call my name, but we have come a loooong way, baby.
Think long-term. Your child will likely outlive you.
I think often, maybe too much, about when Jay and I are gone.
When we are gone, Jessie’s siblings will help take care of her. She will probably live with one of them. I want her to integrate into their families as seamlessly as is possible. Although they dearly love Jessie and welcome this responsibility, I want it to be as easy and joyful for them as it can be.
It helps everyone, Jessie as well as them, for Jessie to be as independent as she is capable of. She may have limitations of what she can do (I think it less likely she will fully operate the oven independently, for example) but we are all, including her, best served for her to do all she is capable of. This helps ME be motivated to keep pressing on.
Okay, so we’ve established there are good reasons to teach them independence and home-keeping skills. HOW do we motivate them and teach them?
That’s a teaser, cause that’s what we’re talking about next week. But here’s one little example of why you want to make the effort. And it is effort on your part.
Yesterday, I had already started this post and Jessie and I made cupcakes for her to take to a youth movie night with our church. Making those cupcakes was a huge reminder of how far she has come from the first times we tried to make cupcakes together.
In those first cooking sessions, years ago now, I would have determined that although it would take much longer and be much messier and mentally tiring, I was going to include Jessie in cupcake making. Then, after all that build up, either she would lose interest or say her arm was tired (holding the hand mixer) and she wouldn’t participate for very long. It was a big let-down. It made it easier for me to not made the effort to include her the next time.
Yesterday, she made the cupcakes almost entirely by herself. She cracked the eggs, mixed the batter, filled the cupcake pans and when they were done she frosted them all. It wasn’t entirely stress free for me but it was so much more relaxed. I remember the earlier days of us baking together when I wondered if we would ever actually enjoy it. We both did and I was so thankful.
I was so, so proud of her. It seemed like such a teenager thing to do. And she was proud of herself too. When I helped her up the steps to my friend’s house where they were watching the movie, she reminded me (sounding like the mother) to not let the cupcakes she was carrying fall. She doesn’t have good balance and going up a step with something in her arms is hard for her. Usually, she’s concerned about herself and doesn’t want to be carrying something up steps. These were HER cupcakes though, HER project and I was the helper, not vice versa. It felt really good for both of us.
I don’t get this right all the time. Not even anywhere near all the time. Probably, Jessie could know how to do even more independently if I always included her in what I was doing.
Just start somewhere and take baby steps. Whatever I’m trying to accomplish, I find that baby steps are usually the way to go. When I try to be all gung-ho over something new I rarely stick with it. Better to take baby steps that we can actually stick with than gung-ho then stop.
And in all this process, maybe you need to give yourself a little grace. You probably already show patience and understanding to your child. Sometimes as mamas we need to realize that it’s okay that we will never get it perfect. Grace.
We’ll talk next week about HOW to teach some of these skills, the tips and tricks that are working for me.
Till next week friends,