Parents want a life too!

Some of my most recent conversations with parents have been about the desire to have a life of their own. They say to me, "I love my child and I definitely want what's best for them, but I want a chance to have some freedom in my life too."

The parents further explain that it's not easy to live every minute of your life based on what is going on with your child. There are sleepless nights, constant worry, never-ending planning and no end in sight. "We certainly understand our parenting responsibility,", they explain, "but day after day, month after month, and year after year, it gets pretty exhausting."

The stress and anxiety increases as parents get older while their energy level and ability to cope seems to decrease. Parents who don't have children with a disability get to relax and retire in their senior years. On the contrary, parents that have a child who has a disability, don't. The responsibility and demands of their life stay the same and often become greater as their child ages too.

"What do we do?" they ask. "I don't want to write a plan," one parent states. "I have a plan, I want to relax." "I want to retire in another country". "I want a relationship with someone." "I want to travel." "I've worked so hard for many years, I want to have some time for me." "Who is going to help me get my life back?"

They agree that their son or daughter should be in control of their life, to make decisions about what they want and not to have anyone stop them from achieving their goals and dreams. They need help from someone other than themselves to make it happen.

In addition, there is nowhere for their son or daughter to live outside of the family home. "It's not right" they say, "to have him live with us for much longer." "What happens when we get sick or when we die?" How fair is it that our son won't know anyone but us?"

Parents have told me that when they express to others that they want a life of their own, they feel judged and looked down upon. They say that people expect them to continue at the same pace up until the day they die.

"That's just not fair" say the parents. "Why is it so wrong to have what everyone else has?" "What's wrong with wanting the chance to have a life too?"