Tips & Tricks: Parenting my Special Needs Sister

When I became an insta-parent and caregiver to my sister with special needs, I searched for topics that related my situation. What I discovered is, despite how I concoct my on-line search, I always get articles on how to parent the siblings of children with special needs. Now, I’m one of those siblings who has a sister with special needs, but this isn’t exactly the info I’m looking for. I guess people think something like “Well, you are a parent now so go look at parenting articles, already” Oh probably not, but anyhow, I can’t be the only person in the world who’s parenting their sibling with special needs. So, to help those like me, I’ve compiled my own list based on my experiences and research from the last four years.

These tips and tricks are things that have helped me with my sister, Nancy, and her unique set of demands. We all have personality quirks and different needs, so by no means am I saying that this is the only way to do something. So that said, please feel free to use and modify any of these that might be helpful for you and your loved one.  

# 1 Resetting Expectations

I had to set clear and consistent expectations. First and foremost, I’m her youngest sibling. There are family dynamics at play. I need her to do what I say, i.e. “Nancy take your pills,” or “No, you cannot eat a fourth pudding cup today,” or “Don’t come into my room at 3:30 in the morning and wake me up!” Seeing that she is older than me, of course, she wants to boss her kid sister around, i.e. “I’ll take my pills when I’m ready to,” or “I’ll eat what I want. You’re not the boss of me,” or “But I have to ask you this very important question, right now!” Resetting expectations has taken some time and a little convincing. Our other siblings, friends, and even doctors have helped to reinforce that I am the boss now.

Tip: Use the broken record technique. I will repeat to her as often as it takes that, “I am the boss, the judge said so,” calmly and firmly whenever there is an issue.This is a transferable technique. It doesn’t have to be about who’s the boss. It works for literally any situation. It’s just something I learned while teaching and working with teenagers.

#2 It takes Time

There is a learning curve to this parenting thing especially when you dive right into the middle of something that most parents have had years to figure out. It takes time deciphering her behavior, her quirks, and her needs. It takes time knowing how to respond. It takes time developing trust even though we are sisters. I mean, she knows I’m not mom. Shoot, I know I’m not mom! Often times we both would rather have mom doing the discipling, the guiding, and the everything. At least mom knew what she was doing or at least she pretended like she knew what she was doing better than I do. Here is a small list of things where Nancy is like a child and requires parenting:

• Nancy will take her time getting ready to leave the house even though I’ve already walked her through the steps and I think she’s ready to go. I have to remember to make time for this.
• It’s not easy to get her to take a shower. It’s a production every time.
• It’s not easy to get her to help with chores, you know the basic ones like not putting her clothes on the floor or emptying her trash can. I have to think creatively to get her to help without a fuss.
• I can’t make plans without thinking of her. I either have to find someone willing to “babysit” or plan on taking her along.
• She is incontinent and wears adult diapers.
• I can’t talk about certain things. It might trigger her, and she may have a meltdown.
• I can’t listen to certain things. It might trigger her, and she may have a meltdown.
• I can’t watch certain things. It might trigger her, and she may have a meltdown.
• I have to go to my room at a certain time at night or she’ll stay up and annoy and bug me with questions even if I’ve put her to bed already.
• It’s almost like I play the game of don’t wake the baby! I try very hard not to wake her up and I treasure my mornings when she is still asleep.
• I can’t have my own phone conversations. Nancy will help me talk on the phone.
• I can’t use the bathroom by myself. Nancy will need it or need me.
• If company comes over, Nancy will be the center of attention.
• Nancy eats all day long. It’s expensive to keep food in the house.
• We live from holiday to holiday.
• Nancy interrupts.
• Nancy wears clothes for a minute and then throws them into the laundry.
• She uses dish after dish after dish…
• She repeats herself.
• She is scared of storms.
• She worries about everything.
• If we don’t eat our meals together at the same time, then she will want another meal whenever I decide to eat.
• She wants you to buy everything from the store. Her lists are super long. If you don’t buy something that she’s ben fixated on she gets intense with her bugging.
• If you have something that she doesn’t, or she perceives that she doesn’t, she will whine.

Tip: Be kind. Be kind to yourself. Cut yourself some slack. Life isn’t easy. Parenting isn’t easy. Parenting an adult sibling isn’t easy. Training yourself to react in more meaningful ways is not easy. Learning new things isn’t always easy. Remember this, because it is reciprocal. Most importantly, “Be kind even when you don’t feel like it.” I have that quote hanging in my hallway as a reminder to myself. Be kind.

#3 It’s Overwhelming

Nancy has many health issues that I must understand and is the root cause of behavior problems and misunderstandings. She takes a lot of medications that I must fill and make sure she takes. She has at least six specialists that I have to make sure she sees regularly. I’ve witnessed mom deal with these things my entire life. I even helped mom in the past. What I have discovered is that I must not beat myself up if I forget something, make a mistake, or lose my temper. I had no idea how overwhelming and hard everything was until I was the one taking care of Nancy.

Tip: Do not take it to heart when/if other people look down on you or judge you for how you take care of your loved one. You are doing your best. (*I’m proud of you, seriously. If you were sitting in the room with me…okay wait if you were here… honestly Nancy would rush into the room, show off, be an attention hog, and talk your leg off but then I’d fix you a coffee, give you a hug, and let you tell me all about it.) Remember, those people are not in your shoes. They are not in the trenches living it day in and day out.

#4 Behavior Modification

Finding a behavior modification plan that works has been the absolute best thing ever! It’s been a life saver and trust me, I’m not exaggerating. I’ve talked about the specific behavior plan that works for us. She thinks it’s a game and wants to a good job to earn the rewards at the end of the week. I enjoy finding her the cute little prizes. It’s a win/win situation. Most importantly her behavior improves, and our quality of life improves.

Tip: Make it fun for the both of you. This is important, because if she didn’t enjoy it then she wouldn’t do it and neither of us would be happy.

# 5 Routine

Finding a routine that works for the two of us has also helped with her behavior. She craves structure and having a daily routine helps her not feel so overwhelmed. If she doesn’t know what to expect then she is persistent in asking questions which, if I’m being honest, gets old pretty quickly. She needs to know what is going to happen next in order to feel safe and secure otherwise the world is a little scary for her. Our routine is more flexible than other people, she’s okay with that as long as she gets a heads up about what we are doing. It doesn’t seem like much of anything, but it helps her not to be a worry wart.

Tip: It really helps knowing what’s coming next. Our routine may seem trivial, like it’s not much of a routine at all, but she knows what’s coming next and this helps her so much. Everyone is different, and your routine may be more rigid and that’s okay too.

#6 Rest & Recuperation

Taking care of Nancy is an emotion drainer. I love her, but she is frustrating. She knows what buttons to push to make me angry. She takes a lot of energy. She takes a lot of patience and grace. Sometimes I feel stuck and resentment comes into play. This is when I know that it’s time to take a break. I need a little time away for rest and recuperation. It works wonders. It doesn’t have to be some big whoop-di-do vacation or event either. Just getting someone to watch her while I take a country drive, walk the dog, go out for coffee with friends, or go see a movie helps my mental state so much. I can literally feel the tension drain away and feel like me again. Hey, don’t get me wrong, big vacations are nice and necessary too, but I don’t need those as often.

Tip: Take time for yourself or you will burnout. If I let myself get mentally run down, then I’ll get sick and that doesn’t help either of us.

#7 Ask for Help

Asking for help isn’t always an easy thing to do. Mainly I feel like ick, I don’t want to be a bother. Also, Nancy is hard. She can be a handful. Finding someone who is willing to and available seems like a nearly impossible task. So, it takes planning on my part. I can’t be spontaneous on my own, say you call me up out of the blue and have some incredibly fun thing to do right now then it will include Nancy. Or, depending on the activity, I may not be able to do it because of her health issues.  I have family and good friends who will watch her from time to time, but sometimes I have to branch out and ask other people if they could watch her. There are so many different things one could ask for help with, but this is my big one, finding a sitter for Nancy. She may throw a fit if she thinks that I’m doing something fun without her, so I have to hype up the babysitter too, “But you love so and so! You will have so much fun together.”

Tip: Just ask. The worse thing they can do to you is say no. Remember, if they do say no, don’t take it personally. Trust me, I’m speaking from experience here, I know it’s hard not to and it really sucks when it feels like no one will help. Just try not to overthink it or wear your feelings on your sleeve. Move on and ask the next person and the next. If no one can help, there are programs out there made for that very situation.