What Every Parent of a Child With Intellectual Disabilities Fears

Today I realized that I’m getting closer to the edge of the cliff.  What cliff?  The cliff my son will go over unless mama starts taking charge.

My son Spencer is 19 years old and has intellectual and development disabilities – IDD for short.  If you aren’t familiar with how the “system” works, people with IDD can remain in school until they turn 21.  In addition to academics, they receive Occupational Therapy, Behavioral Therapy, Speech Therapy, Physical Therapy and other support services that help them function in the real world.

And then, at 21, it all stops. They go from a regular routine of school and programs to nothing.  As their parents, we’re left to figure out how to keep them busy during the day so that we can still work (because not working will never be an option for us) and they can still experience personal growth rather than sitting on the couch all day. Within the special needs community, we refer to the time when our IDD children are forced to leave school as “falling off the cliff.”

Depending upon which state you live in, your now adult child will hopefully receive some financial assistance towards an aide to assist him with his daily living, a day program (which simply means activities to keep him occupied), a job coach and possibly residential assistance (which means a small amount of money to be used towards rent.)

This probably sounds great – as if the person is set up for life.  The reality, however, is far different.  For people with profound disabilities the financial assistance doesn’t go very far and certainly doesn’t cover all the support the person needs.  In Connecticut where I live the residential financial assistance is non-existent due to financial mismanagement.  There’s a waiting list of over 2,000 people.  And while it’s great to think they will find a job, how often do you see people with severe disabilities working in offices, restaurants or retail establishments?   Even for a person like my son who is considered “high functioning” but has an extremely limited attention span, talks to himself and is in constant motion when he’s not sleeping, the prospects of finding and maintaining a job are still limited.

Very often people with IDD end up living with their aging parents who still need to support them.  Parents in their 70s and 80s who are caring round the clock for their adult children, some who must be bathed, fed and carried, now in their 40s and 50s.  Parents who are terrified wondering what will become of their child once they die.

For those of us lucky enough to have other children we hope that they will care for their brother or sister but feel equally guilty knowing how this will impact their own lives as they start a family and build a career.

As my son gets closer to the edge of the cliff my main goal is helping him to become independent and a valued member of the community.  It would also be nice for him to have a social life – not really that much to ask for.  This requires me teaching him how to do things that many parents take for granted – learning to use his smart phone to communicate, shopping for groceries and making healthy choices, cooking his own food, washing his own clothes, using public transportation and, eventually, holding down a job.  Sure, the school helps and I’m fortunate that Spencer is in one of the best in the state, but it still requires a great deal of time and effort from the family.  It’s a full-time job.

I’m also fortunate to sit on the Board of Directors of STAR, a not–for-profit organization serving individuals of all ages who have developmental disabilities, as well as providing support services to their families.  I’ve gained more information about how I can help Spencer than most parents normally would.

And so, I’m beginning a series of blog posts chronicling my journey to the edge of the cliff and my goal of building a safety net to keep Spencer from going over.  My hope in writing these posts is that I will not only help other parents who are in a similar position but also enlighten everyone on the struggles parents of children with IDD face.

I welcome thoughts, comments and questions and hope we all can support one another.