Opinion, Parenting

6 Steps to Visionary Planning for your Child with Special Needs

"There are always three positions one can take toward life: cynicism, idealism, and realism."

Richard Stivers, The Culture of Cynicism

Labels Can Be Limiting

...but Richard Stivers makes sense. We often respond to life with one of these three attitudes.  When we do we are cynically negative, naively idealistic, or soberly realistic. Personally, I see all three forces at work in me when difficulty arrives. The cynic in me blames. The idealist in me avoids. The realist in me accepts. None of these responses are adequate for either the good or bad times in life.  They are too limited as a spectrum of responses, and explain the almost universal difficulty experienced by those who fail to explore other options.

Cynicism at its best leads us to question

...but without idealism will simply make us negative.   Idealism may keep us positive, but without realism we’ll end up chasing fantasies.  Realism may face the facts, but rarely sees the dream.  I am a dreamer, so when my wife and I became special needs parents, we needed and found a fourth response to life.  We needed a life attitude capable of facing impossible odds with extraordinary optimism.  We needed vision.

The Complexity of "Vision"

Vision is the attitude George Bernard Shaw described when he said, “Some men see things as they are and ask why.  Others dream things that never were and ask why not.”  People with vision are willing to see with the eyes of a realist, question with the mind of a cynic, and dream with the heart of an idealist. Embracing this attitude has helped us accept the truth about our families disabilities, but question the limits of what has already been done, so we can see what is possible to do.  As a result, we have learned to see the future of our typical and special needs kids with vision.

So, How Does One See with Vision

Here are some tips gained from over twenty years of personal experience, as well as all we have learned from those who have gone before us.

1. Don’t Be Limited by the Diagnosis

The first time anyone hears the diagnosis it is emotional.  It can be devastating. Be careful not to let the diagnosis define or limit your expectations. There were a number of people in our lives who told us stories about being satisfied with the limits of our children’s diagnosis. Unfortunately, they couldn’t understand they were asking us to treat our child as a diagnosis rather than a human being with a destiny. What really helped were professionals, friends, and family who told us stories of purpose and possibility. In particular, I remember a friend telling us about a child with special needs who was doing well in high school. This friend described the purposefulness of the family intent on helping their son become an example and inspiration. We embraced their attitude toward parenting and want to pass it on to as many people as possible. Don’t be limited by the diagnosis.

2. Partner with Your Pediatrician

Finding a pediatrician who will treat you like a partner is essential to the future of your child with special needs. Those who partner with parents listen to their hopes, temper their fantasies, and provide them with a medical blueprint designed to create the best future for your child. Keep looking until you find them, because they are out there.

3. Start Early and Stay At It

The purpose of the first therapy our son experienced was designed to help him develop the muscle tone necessary to crawl. We began when he was around 3 months old. We stayed at it for some time.  As a consequence our son began crawling at the appropriate age. From the beginning to the end of the therapy it made little sense to me. Why did we do it?  Why did we stay it? We trusted something the doctors and therapist told us, which was start early and stay at it. This mantra has served us well for twenty years. Practice it and you will experience the progress necessary for dreams to become a reality.

4. Find Truth-Tellers and Innovators

There are a number of people who will contribute to making the vision you have for your child come true. Doctors, therapists, teachers, family members, and friends will all play a role. Be certain to identify the truth-tellers and innovators. The truth-tellers will help you sustain your hopeful vision without ignoring necessary truths.  They will prevent you from investing in efforts with little to no possibility of success. Innovators will balance the truth-tellers by providing you with hopeful cutting edge possibilities for making progress and even dreams come true. They will do the research, make the phone calls, and verify the validity of new ideas with the ability to break through old limits. The truth-tellers and innovators are your advisory team. Get them in the same room for hard decisions and more often than not you will make the right call.

5. Spend Like It's College

The simple truth is every child with special needs begins college upon birth. Don’t save the college fund. Spend it! Invest it! For most children with special needs Harvard begins now!

 6. Celebrate Every Step and Stay True to the Vision

Happiness is the fuel that keeps hope alive. Keep this fuel burning by celebrating every step of progress. These celebrations keep the happiness flowing, which sustains the hope necessary to keep pursuing the vision. I remember when my son couldn't kick a soccer ball. We celebrated every step from the simple willingness to look at the ball to the ability to kick it into the goal. The serendipity of this effort is the very same 8 year olds who helped him learn to kick remain his close friends today.  Our vision wasn't the kicking of a ball, but having friends in his twenties who would make sure his birthday was celebrated with parties, gifts, double dates, and birthday cake. This vision has come true and makes me believe every visionary parent can experience similar victory.

The Message of Hope

These thoughts are ultimately about hope. Hope is something special needs parents receive too rarely, because everyone seems to be on a mission to prevent us from having unreasonable expectations. I don’t think we need caution about having unreasonable expectations. We need encouragement so we don’t end up having zero expectations and living a life of hopelessness. Here is to the dream of every parent with special needs children becoming a visionary. May we soon see the day when each one is capable of navigating the turbulent seas of life with unsinkable hope.