The Race Against Time

Our first Manic Monday needs to talk about the elephant in the room.  We feel like we are in a race against time. The goal of parenting kids with special needs is clear and simple, but sometimes feels completely overwhelming.  We need our kids to be able to go on without us after we are gone. With typical kids, we feel confident we can get their skills to a level which will allow them to live independently by the time they are adults. With our special kiddos, we may need extra time for them to develop personal skills and, even then, they may need support from family and the broader community.

The Elephant in the Room

If there really was an elephant in the room, we can all agree…it would be crazy to just ignore it! It would be just as crazy for me to pretend that Mikey will be happy and fulfilled living with me for the rest of his life without meaningful work, friendships and recreation.  He is a complete, wonderful, joy-filled human being who needs the opportunity to build his own adult life.

This seems so obvious to me, but the world we live in has long expected aging parents to care for their adult children with special needs without a back-up plan or a safety net.  And may I add, not a whole heck of a lot of help! I do think there are families who are making this choice and everyone is happy and living their best life, but I also think there need to be more options for families like ours.

Just like typical adults, adults with special needs should be able to choose where they live (although they might need help with this choice). Home is one option which may work for some people with great family support.  Group homes, planned communities and hybrid living situations are also great options.

One Thing to Consider

As an adult who lost my mom when I was in my 40’s, I can share…the emotion of losing this long-cherished connection is devastating.  So, for our children with greater need and dependence on us, think about what we are doing to them if we center their entire routine around us.  Really stop and think about how poorly that will serve them on the day we are no longer with them. Don’t get me wrong, I am a huge part of Mikey’s daily life! I want to be a part of his life always, but I can’t be his everything because then, when I am gone, how will others help him to move on? He needs a broader circle and opportunities to be his own man.

We all focus on helping our kids build skills to allow for greater independence.  Some of our kids will get to a skill level that will allow for completely independent living. Some will need group homes or apartments where typical neighbors can check in. Others will need communities that can foster connection, offer vocational opportunities and a full social life. For some, living at home will be the best option, but you’ll still need to give thought to what happens when you can no longer care for them.

Start Exploring Options

Without becoming overwhelmed, start exploring options once you have a sense of where your child might fit. Don’t wait until you are checking into a retirement home yourself to figure all of this out.  You’re working so hard to create a beautiful life for your child. Remember to give them the tools and support they need to live their best adult life in whatever setting is best for them!