Steps Toward More Independent Living

submitted by Lindi Kessinger, Mom to Maddi, living with PWS

What steps did you take to prepare for her life as an adult?

We honestly had a lot of help and 1:1 with Maddi through one of our waiver programs. We were unsuccessful in our small public school system and homeschooled the last few years of her high school. The school did not provide appropriate services for a person with PWS, so we blended her days during high school with a mixture of academics as well as personal care and life skills that were appropriate for her to learn. She did learn how to do her own laundry, put away dishes, make her bed, and do some light cleaning.

What does independence look like?

After a couple years in residential placement, we brought Maddi home and began working on a plan B for adulthood. We transitioned her into an apartment to help set her environment up solely for her. She does have 24 hour a day staff partially through our waiver program and partially private pay. We have had to get creative to find what works. This year we determined that having 300 calorie a day meals in individual meal prep containers works best. These are made outside of her apartment and since then she has learned how to use an air fryer and microwave to heat everything up. She is on the carbetocin study and made it to the extended phase to where she has her medication for sure. This is helping us give her a little more control. She now has access to her gum and a week’s worth of sugar free drink packets at a time. Just recently we have started putting a day’s worth of food in a cooler for her to self-regulate what time she wants to eat.

What supports are in place?

My daughter has some considerable behavior needs. Hyperphagia created the need for 24/7 supports and as the carbetocin is proving to be beneficial we are starting to give her little bits of control. Her anxiety and OCD additionally contribute to her daily level of functioning beyond PWS, but we are learning how and where we can give her control in life to help her feel like her opinion matters.

She is allowed 2 drink packets per day and at this point we have a check off sheet where she signs off that she has a week’s worth of these. She is in a position, thanks to the medication, to self-regulate this small thing along with her gum. Every night she gets to choose from her menu the pre-prepared meals for the next day. Staff places them from the freezer into the fridge overnight to dethaw. Every morning, staff takes those meals out and places the entire day as well as snacks into a cooler with ice packs. This step came only after she was delaying her lunch until midafternoon, and staff was not sure how to handle her not feeling hungry at normal lunch time.

We realized our pre-determined mealtimes intended for Maddi’s emotional food security were becoming a control issue between her and staff. We had to look back at the heart of why we were so strict on mealtimes and had to remind her helpers that this was intended to give her food security and help her to trust that she will never go without her meals and snacks. At this point we are putting those mealtimes back into her control and beginning to allow one day’s worth of meals and snacks to remain in the cooler during the day. She still has staff there to support her through activities of daily living.

She has lots of check lists in her apartment and our son, who happens to have his own disability, helps some overnights to provide supplemental supports where our state waiver program will not help. We have a couple cameras and a simply safe alarm set up in her apartment that helps me to assure she is safe. Her apartment has a gate around it. In reality, I know this is not enough to keep her safe, but she is proud of herself and said she feels the gate is a deterrent. I live 5 minutes away and at this point it is the best scenario we have found. Staff takes her where she needs to go and most groceries and meds are ordered ahead of time for them to pick up.

She has required 24/7 care, but we are working toward her having more autonomy and control of the little things in her world. Inclusion has not been successful, but with staff she is able to go into the community for a lot of intentionally selected activities during the week.

Romantic Relationships

Maddi has had a boyfriend with PWS since she was young. They truly care for each other, but the ins and outs of relationship drama reminds me that things have to move at a snail’s pace. Despite this, he proposed and gave her a ring a couple years ago. She talks to him on the phone every couple of weeks and they see each other a couple of times a year. She has a lot of triggers, and he is a very liked young man by the fellow PWS ladies, so for now, we remain at a snail’s pace and just let them call each other what they would like.

Volunteer/Work in the Community

Prader-Willi has been complex in the day program world. The one program that stated they could manage PWS is the program we pulled her from after finding a trash bag worth of food a couple different times. They were refusing to keep others with special needs from giving her food gifts. We ventured onto a couple other options that have not worked well. She was involved for a few days in a village like setting with animals and lots of choices of programs. Sadly, on day 3, she asked for food. They were concerned they would not have appropriate staffing to keep her safe and asked us not to return. This has been a continued source of rejection. She does like animals and does well with younger kids. I am hopeful we will find some volunteer work for her to do with her staff.

Advice for Parents on Preparing for Adulthood

My best advice pretty early into her adult years is to take it one step at a time and remember that very few things have to be concrete. I am reminding myself weekly that her ability to control these tiny areas of autonomy we have given her will help me navigate her next steps to more independence. My dream, if these small steps were to work, would be to create a village for her and a small group of others with PWS. A world where her needs for food security run parallel with supports in place to help her learn how to manage a lot of life in their own environment. I often get my hopes up but never want to give up on her having a level of independence that helps have a sense of dignity and purpose while balancing out her crucial need for a safe environment.

More about Maddi

Maddi loves to bowl, has gotten involved again with Special Olympics playing basketball and bowling, and has a baseball league she is involved in. She has a lot of daily living skills she does great with, which makes it tricky since she still needs people to keep her safe. She doesn’t like being told what to do and I’ve learned if we can guide her to a few choices and let her tell staff when she needs help, she feels more in control.

Thank you for sharing Maddi’s story with us!

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