The last 18 months have been challenging, to say the least. My family has been hunkered down in quarantine, with Merle and I working from home, Catherine virtually learning and Christina working her NYC-based job remotely, as well. We had a full house and with COVID-19 essentially shutting down most outside activities, Catherine and her big sister had more time to spend together than ever before. Their rooms are connected, and they saw each other every day, all day, which strengthened their already strong bond. 

This made Christina’s inevitable move to New York City an extremely important milestone for Catherine. After spending every single day together, we knew we needed a plan to help Catherine through the transition of her sister leaving our home for good. Looking at our own situation, I wondered how other parents of children with cognitive disabilities prepare them when an older sibling leaves the nest. I was fortunate enough to have Angela O’Brien, who is no stranger to Beyond the Waiting Room join me to share how her family prepared their daughter, Casey, for her older brother’s departure for college.

Lillian

For most teens, leaving home for college or other worldly pursuits is a rite of passage, for them and their families. Parents and the remaining siblings go through a transition period where they have to adjust to the “new” normal and the shifting of the family dynamic. But for children with cognitive disabilities, this transition can be even more stressful and the impact more significant. 

Both Lillian and Angela agreed that preparation and communication were key in readying Catherine and Casey for their older siblings’ departure. 

Lillian: “As long as she knows the routine, Catherine can adjust. As Christina’s been preparing to leave, she’s been very deliberate in telling her sister, ‘I’m leaving, but guess what? You’re going to a new school, you’re going to high school, you’re going to have new friends and new teachers. It’s going to be so much fun!’ Even though they’re going on different paths, she’s been very instrumental in speaking to what Catherine’s going to experience that’s exciting and different.”

Angela: “We talked about it a lot with Casey beforehand. We talked about how her brother was going to be going off to college and he’s going to be living there. We also showed her a lot of Youtube videos about what his school was like. I really had to break things down to help her understand what it actually meant. Dan is not going to be sleeping here. He’s not going to school here. He’s going to be on plane and he’s going to be living farther away and we’re not going to see him for a while.”

Lillian and Angela’s preparation plans were very similar and including the girls in the actual moving process was important.

Catherine was involved in every aspect of Christina’s move. Merle took her with him when they started shipping Christina’s things to her new apartment and the entire family accompanied Christina to New York City as both a family trip and as another step in acclimating Catherine to Christina’s new location.

Angela and her family planned on doing the same.

Angela: “The original plan was to take Casey and show her where Dan’s going to be living and how all that is going to work. Then we were going to drive out there and then drive back and do a little vacation on the way back, so that it wasn’t like we’re heading back home to an empty house the very next night. It was really more for me than for Casey, but that was our original plan. And of course, all that got blown up.”

After COVID-19 ruined their first idea, Angela had to come up with an alternate solution. 

Angela: “Casey watched a lot of Youtube videos and we set it up on her phone that she could FaceTime Dan or call him. She doesn’t spend a lot of time on her phone, so we had to encourage her. Like, if she would say, ‘I miss Danny’ or ‘I want to talk to Danny’, we’d say, ‘Well, you should text him or call him.’”

Casey isn’t very social and prefers to be in her room with her iPad, but Dan’s absence elicited an unexpected change. 

Angela: “It was actually really good because there were two things we noticed after Dan left. One was that she actually spent a lot more time with us. I think, because she didn’t want to be alone upstairs. We did a lot more evening things together after dinner.

The other thing we noticed is that she became a lot more verbal when Dan was gone. Dan and his dad are both into math and data and sometimes I can’t even follow along with some of their conversations. They’ll get going on a subject and we’ll have a discussion at dinner and Casey knows she can’t contribute, so she kind of withdraws a little. So, we have to work hard when there’s all four of us that we make sure she’s included a lot of times. I think because we weren’t just talking to Dan about his things, she came out of her shell a little bit.”

Once Catherine and Casey’s siblings were gone and things settled down, Lillian and Angela made it a point to create excitement and expectation at seeing Christina and Dan again. 

Angela: “Casey’s very visual, so we use a calendar all the time. I have a whiteboard in her room and every month on the first, we wipe it down and start over and talk about everything that’s going on in the upcoming month. We did that with July and August and talked about when we’re going to see Dan again and marked on the calendar when he was coming back.”

Lillian: “We make sure Catherine has something to look forward to. We’ll say things like, ‘We’re going to go back and visit Sissy’ or ‘When Sissy comes home, she’ll take you to get your nails done.’ For Catherine, communication and understanding expectations is a huge part of her success in any transition.”

And that’s another thing Catherine and Casey have in common.

Angela: “So, there are changes we have to make, and it can be a little tough for her, but we’ve found that if we give her a little bit of time, then she’s okay. Sometimes, we have to write it on the calendar and once it’s on the calendar, she’s got it.”

Both Lillian and Angela hope that seeing their older siblings leaving home for new adventures, Catherine and Casey will someday want that kind of independence for themselves. 

 

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Written by: Tamara Devers