A Place of Their Own…

My goodness – a few years ago, the words in this title would strike fear into my heart.   How would our family begin to plan our son’s transition to independence or even consider him moving away from home?

Rest assured, there are literally thousands of families in similar situations; overwhelmed by the prospect of planning an independent life for their loved one.  For years, your child has been the center of your family life, you have done your best to raise them and protect them, expose them to social events and encouraged friendships with others, managed their money, laundry and meals.  You cannot imagine how they will cope without your guidance, and as for living on their own…

Do not despair!  This article shares our family’s journey and hopefully offers you a starting point for taking the first steps in planning independence for your child.

If you ever met our son Adam around his community; the first thing you would notice is his huge smile, beautiful clear blue eyes and bright yellow tricycle.  At the time of writing, Adam is 28 years old, an out-going, personable, easygoing young man. He enjoys hanging out with friends and family, taking part in Special Olympics, volunteering at SPCA, singing karaoke and playing the drums.  Adam is developmentally disabled and, up until the last few years, had very limited speech.  Like many similar families his social interactions were limited to our own adult friends and family.

Following high school Adam was placed in transition programs at Ridge Technical College, Winter Haven and Warner University. Lake Wales which offered life skills, work placements and various outings into the greater community.   One such outing was planned to visit a small community of homes in Lakeland.  At the time, it was a relatively new idea – a cluster of four bedroom homes each bedroom with its own ensuite bathroom, shared garden and gathering areas, built specifically for individuals with intellectual and developmental disabilities (IDD).  During the next three years we visited the community several times and eventually became members and volunteers of Noah’s Ark of Central Florida, the organization responsible for building the homes.  This relationship provided Adam with the opportunity to experience friendships with his peers and for us to meet other parents and share our hopes and concerns for the future.

During 2014 we were given the opportunity to lease a room in one of the houses in the community that we had visited.  We replied that Adam was not ready for independent living but quickly received some very direct feedback – perhaps it was us that were not ready!  After much soul searching, we decided to lease the room and let Adam stay for weekends.  We moved him in one Friday evening – his roommates (who he had previously met at many of the social events) arranged for pizza and so we left them to enjoy their food. My husband and I drove home, shed numerous tears and spent the night checking our phones fearing the worst.  Next morning, we discovered that one of his new roommates had dragged a mattress onto Adam’s floor and slept there all night so that Adam would not feel lonely.  These two young men became good friends and still share an apartment today.  It didn’t take long for the weekend stays to convert into living away full time.

Adam has been living independently (with some Med waiver supports) for almost six years.  He loves to spend time with fellow residents and participates in numerous activities – bowling, basketball, bingo, yoga – to name just a few.   He and his roommate take turns with chores for their apartment.  Adam’s speech is much improved and he loves to share news with his friends and family alike.

Has it been easy?  Absolutely not, but I could share many positive stories of how Adam and his friends help and support each other during the initial transition from living at home.  The key is for the family to be 100% engaged and ready to spend time helping their child during this challenging time.

What did we learn?

START EARLY…

There were definitely areas where we could have made Adam’s transition more seamless e.g. teaching him basic chores, prepare a simple meal or sorting laundry.  Thank goodness for video chat – there were many occasions that we had to remotely help Adam read cooking directions for heating a microwave meal or select a wash cycle for his laundry.

Financial Implications

Investigate government services such as Social Security Income (SSI), Social Security Disability Insurance (SSDI) and Medicaid.  You can also supplement government resources with a life insurance policy, special needs trust or ABLE account to bolster income.

Support Team

Identify who will support your loved one; for example a guardian or guardian advocate to make decisions for your adult child and a trustee to oversee a special needs trust.  Create a letter which has a set of instructions of who you want or do not want playing a role in your child’s life.  Also list your child’s likes and dislikes – as much information and detail as possible.  Investigate whether your child qualifies for support services.

Considerations for Accommodation

Research, research, research, reach out to schools, local organizations and other families to find out what types of living options are available in your area.

• Regular community – possible isolation
• Group home – not enough independence for some
• Planned IDD communities such as Noah’s Ark of Central Florida
• Shared apartments
• Distance from family/friends
• Transportation – city bus, door to door, Uber, Lyft
• Social activities and events
• Vocational Rehab – training and assistance with finding a work placement

Start planning BEFORE the move

• Join organizations such as Noah’s Ark, Special Olympics, and Best Buddies  which provide opportunities for your family to share information and activities
• Self-advocacy – help your child advocate for themselves, provide pointers for dealing with conflict over the temperature of the A/C or roommates having friends over for video games until the wee hours
• Have “that” conversation – friends, boyfriends, girlfriends

Teach basic living skills

• Meal prep – how to make a sandwich or heat up a microwave meal
• Personal hygiene – I have found that our population has no problem with telling a friend to shower!
• Grocery shopping – how to make a list, navigate around the grocery store, check “best by” dates
• Laundry – how to sort and launder clothes and bedding
• Home safety – the importance of locking their doors, not sharing personal information
• Managing money – counting change, set up a debit card with a small limit

 

Don’t be afraid of taking that first step, be prepared and be ready to support your son or daughter on their journey to independent living.

Susan Harding is parent to Adam and Past President of Noah’s Ark of Central Florida – a pioneer in making planned residential communities a reality in Florida.

This article was originally prepared for The Autism Notebook