Have a destination in mind

“To begin with the end in mind means to start with a clear understanding of your destination. It means to know where you’re going so that you better understand where you are now and so that the steps you take are always in the right direction.”
Stephen R. Covey

While I know that the day to day demands of a raising a child with a disability can be overwhelming, I'm still going to ask you to look to the future. Why talk about the future so early in the journey? The answer is simple: if you don't have dreams and a vision for your child, then it's easy to give in to the plans and expectations of others. If you want your child to have the same opportunities that his peers will have, you're going to have to develop a plan; and, as much as possible, include your child in this. No matter how challenging the disability, we can still help them achieve the best possible life. What did you want for your child before s/he was diagnosed with a disability? Which of those dreams can you still turn into a reality, even if it looks a little different than you had imagined?

Families frequently make decisions about their child with a disability on the basis of their fears of what might or might not happen rather than the interests, talents, and capabilities of their child. Rather than forcing themselves to consider the opportunities, families can become immobilized with their fears of failure or their refusal to take any risks where their child with a disability is concerned. Instead, encourage your child to attempt new things. It's ok if they aren't always successful; children without disabilities aren't always successful either. Look for your child's strengths rather than his weaknesses.

One of the ways to achieve this is to connect with other families with older children. What things have been possible for them that they might have once imagined impossible? If you have limited contact with self advocates (individuals with disabilities), then try to change that. Few things have made a bigger impact on my vision for my child than speaking with adults with disabilities who have achieved their own dreams. A starting point might be to view the video the Self Advocates of Indiana has produced: Our Voice Counts.

If you can develop a positive vision for your child, than you can help create the life they want. If you let the professionals, the teachers, the therapists, and others create that vision, it may not have the same outcome you had hoped for. If you want your child to live independently as an adult, then help him develop that independence-give him chores, let him cook with you, take him shopping. If you want your child to go to college, then lay the groundwork for that. He may be auditing classes rather than working toward a degree, but he can still have the experience.

If you're shaking your head saying "she doesn't understand my child-those things aren't possible for him" then you aren't listening. You may have to dream new dreams, but they are still possible.