Jess is my young adult daughter with autism and cortical blindness. In a recent post titled Learning To Say, I Need Help, I described shutting down after allowing myself to imagine what life could be like to have some flexibility and freedom. The result of that soul-searching led me to learn about supported independence.
Supported Independence – Independently living at home and in the community through formal (paid) and informal (family, neighbors, friends) support and assistance with personal and domestic care.
Working Toward Our Version of Supported Independence
My goal is to have enough caregiver supports in place so that I can occasionally plan to go out-of-town for work or recreation without having to impose on family for extra coverage. My parents already help a minimum of two days a week, and it makes me feel guilty to ask for more.
I have mentioned this goal to Jess. My presentation to her has been from an angle of – Look! You get to have a life of your own! You don’t need me here all the time! – When I talk to her about it, she usually semi-nervously buys in to the idea.
It seemed simple enough. Jess had plans to spend the day with her Granny on Thursday. She had plans for shopping and dinner with a caregiver that same evening and again the next day. It seemed like the perfect time to try this overnight thing. All I had to do was arrange the Thursday night overnight part of the plan, and extend Friday’s coverage just a little bit. After that, it would be time for Jess to go to her Dad’s house for the weekend, which would actually give me the opportunity to be gone for more than 1 night.
Jessica’s caregiver readily accepted the offer for the extra hours. My work office is about a 1.5 hour drive from my hometown. I could leave home that Thursday morning, make the 10 minute drive to Granny’s house, then get on the road. I could be at work in Knoxville, TN before 10:00 in the morning. Proud of the fact that I had easily made the arrangements, I called the office and announced I had worked it out to be in-office for two days. This was feeling really good. I wanted and needed to be in the office to collaborate on some projects in the works.
Ten minutes later…
Granny called and explained that she was still experiencing a lot of pain from a wreck she had a couple of weeks ago and that she wasn’t going to be up to having Jess. I completely understood.
But, poo… if only I hadn’t JUST called the office and triumphantly announced that I would be there for two days. Now what…
I was determined to not give up just yet. I wrote a few texts and made a call. A caregiver I’m in the process of hiring agreed to keep Jess for a couple of hours Thursday morning. I will have to pay out of my own pocket this time. She will then deliver Jess to my parents, who readily offered their assistance for Thursday.
Much to my surprise, just like that I once again had Thursday coverage worked out.
Timing Is Critical
When telling Jess about an upcoming deviation in her schedule, there has to be enough time allowed for her to adjust, but not enough time for her to fret and perseverate for days on end. On Tuesday, I told Jess about the call from Granny. That gave Jess time to call Granny and talk that through. I knew she would have to hear it directly from Granny before she accepted it. I waited until Wednesday to make the announcement to Jess about the new Thursday arrangements. When I told her about the overnight plan, I excitedly described the supported independence plan as her having her very own sleepover party. She bought in. Yay!
The Result of Our First Try
In this first step toward supported independence I didn’t expect the experience to go perfectly. I knew there would be some issues because there always are some. Several factors were in play, one being that this is a new angle on the concept of supported independence at home.
Jess seemed to like it, but was also insecure about it at the same time. The evidence of this was that she had a bathroom accident sometime during the night on Thursday. These accidents seem to only occur when she’s feeling insecure. Jess was missing me. I am her security.
Probably, the biggest factor to consider was that her routine with Granny was off; she was worried about that. Not only was Granny still feeling bad, but Granny’s car was totaled in the car accident. Jess is worried about what that means for her routines with Granny moving forward. Her Thursdays with Granny have been a concrete part of her routine for many years. Jess is stressed about this interruption. Jess is very perceptive and I think she knows that there may not be another car in the future.
Another little wrinkle in the plan occurred Friday morning. Jess and her caregiver accidentally got locked out of the house when they left to run errands. (A side effect of my chaotic life. I have no idea where to find an extra key.) Their plan for the day was adjusted and they spent the rest of the day at the caregiver’s house instead of ours.
What this meant for me was that I cancelled my plans for Friday evening and for staying a second night in Knoxville. I needed to go home and open the house. Jess needed meds to take to her dad’s for the weekend, and her caregiver needed her belongings.
Considering all things, was this first try a failure? A challenge – yes. A failure – I think not. It was just new. Wrinkles are inevitable. There will always be things to figure out and safeguards to put in place – like an extra key for the caregiver.
Just because I had to come home earlier than planned did not make it a failure in my book at all. Actually, I could have said, “Sorry, I won’t be back until Saturday morning,” and they would have adjusted. Jess could have skipped her night medicine and I could have taken it to her Saturday morning along with her iPad and the phone charger that she would be flipping out about.
Instead, I viewed it as an opportunity to demonstrate to Jess that I can be there for her if she really needs me. She has to trust that I’m looking out for her even if it is from a distance. The same can be said for demonstrating to a caregiver that I am available and willing to help out as needed. I need staff to know that I care about them. I need them to be willing to cover extra time slots and occasions every now and then.
Can I consider this first time a success? Yes, I can.
Why? Because it happened. I had non-family overnight coverage for Jess in our own home and I was able to go out-of-town to work – for 2 days.
That insecurity that Jess feels… well, it will probably always be there to some degree. She knows that I understand her like no one else, and that I can communicate with her like no one else. But, it doesn’t mean that insecurity will stay as strong or be as prominent. The more we try this occasional overnight supported independence thing, the more routine it can become. She will become more comfortable with it.
It’s actually just fine that on this first go-around I was able to demonstrate that I can be available for her if she has an urgent need from me.
And what about that bathroom accident? Well, typically when that happens, she leaves her wet clothes in the bathroom floor for me to find and deal with later. This time, with me not at home, she took the clothes downstairs to the laundry room herself, and, she took the wet rug out onto the back porch. She handled those things independently. hmmmm…
I wonder what other things she might be more independent with if I am not here to do for her as often?
Congratulations, Val! This is a huge step for both you and Jess, and you should be proud that you were able to make it happen. I hope that you will be able to make this happen more often in the future, and perhaps with practice, Jess will feel more comfortable with the arrangements too. Thank you so much for sharing your story!
Thank you, I will definitely be working toward making this happen much more often. We both need it. I agree, she will get more and more comfortable with is as time passes.
Stephs Two Girls
Love this post; glad you got away and totally agree that returning will have helped settle any worries about you not being able to. It’s all in the planning, and little steps are so important x
Thank you. Little steps are critical, and honestly, I do have to remind myself to be patient with each little step.
Val, I love reading your blogs and following you and Jess. You give me so much hope! Recently, I had to ask for help with my son. It was difficult to let go, and still is. But I see the small steps that are made, hearing how he adapted without me. I can relate to so many of your stories. Its encouraging to know we are not alone.
Thank you Angel. I agree, not being alone is a huge bonus! I’m glad to hear that you are seeing small steps with your son. The letting go definitely seems like the hardest part.