By Eliya Stromberg, PhD
To: Parents of a child who is disabled
Yesterday, I had coffee with Adam (note: not his real name). He is the father of five children: twins, two others with genetic disorders and an infant (so far, typical). Besides all the attending needs of children with disabilities, some of his children have serious behavior issues that manifest at home and at school. His oldest child is 10. (When my son with Down syndrome was young, meeting all his needs seemed equivalent to raising three children at once, not one. I can imagine what it is like at home for Adam.) In addition, Adam himself is under a doctor’s care for a chronic condition. He is also beginning a new career path, with all the challenges of new beginnings in business. He is financially stressed.
Yet, Adam is positive about every aspect of his life. He accepts gratefully the challenges he has. He values his wife and lets her know how much he appreciates all that she does to keep their house and home together. He is open to new ideas that may build his family and himself. He likes people and has the attitude that there is something to learn from everyone. And he wants to give to others. He is realistic that he has a lot of work ahead of him, but he looks forward to it, believing that by doing the work he is making his life good.
I walked away from my meeting with Adam feeling that there is no time and no room to feel negative about anything in my life. If this man with all his challenges can see good and promise in everything around him, so can I.
And so can you. I will tell you how in just a moment.
Parents of children with disabilities bond deeply with one another because of what is common to all of us: our atypical children. We each live a life with big challenges that we never expected and never wanted. We have suffered the pangs of loss and we have had to readjust our expectations. Our whole lives we will most likely have big challenges. And we need all the support, information and love we can get.
I am sure it is true for you that there are times when things appear to be going OK and you are thankful for a moment’s relief from the stress, trauma or heartache that we know oh, so well. And if you could, you would just coast along hoping that life would just stay that way.
But in the natural world, at any one time, the movement of life goes in only one of three directions: up, down or sideways. Down is not healthy and runs away from joy. Sideways doesn’t improve; it just stays the same. However, without bolstering or strengthening it, sideways will eventually go down. A life coasting sideways or going down is not a joyous life. It does not generate the dynamic and positive energy that Adam puts out. Only by aiming and working to make one’s life movement go up produces true joy.
What is it about Adam that gives him such positive energy in the face of so many serious challenges?
It is so simple. He finds good in everything that comes his way. He is not some Pollyanna who doesn’t see what is. He acknowledges how difficult it is to control the rage and destructive behavior of one of his children. He shares the stress his wife is under managing their home. And he feels pained that he cannot provide right now more financial security for his family. But he is not down. Not for an instant.
He sees that the challenges of his children are opportunities for him and his wife to be a team, to love, support and comfort each other. His children’s needs lead him to learn about human behavior, be it acting out behavior, developmentally delayed behavior or typical child behavior. The difficulties of starting a business open up opportunities to learn skills of marketing and salesmanship. Life for Adam is filled with opportunities to learn. Learning energizes Adam.
Life for Adam is not moving up all by itself. It moves up because Adam sees what is good and then expresses thanks for what he has. He thanks his wife, all those who offer him help, and his Higher Power.
With this positive outlook Adam can move his life upward in a dynamic way.
He faces his challenges and acts decisively to meet them in the best way he can.
What about you? Do you see the good in every challenge? Are you thankful for everything that you have: the “good” because it is good, and the “difficult” because it is an opportunity for you to learn and develop yourself?
Are you making your life good?
How is your health? What are you doing to maintain or improve it?
How do you truly feel about your child? Do you accept him/her and all his/her attending needs with love in your heart? Or do you withhold yourself, unable to feel joy?
How do you and your spouse/co-parent get along? Do you have a warm, supportive and giving relationship? If not, what is blocking you? Are you on the same page when it’s time to make decisions? Do you keep score (in your head) of how much work each of you has put out, and when a new task needs doing you say, “You do it; I did …”? Do each of you make sure that the other’s needs are met?
How are the typical siblings developing at home, at school, socially? Do you know how they really feel about their brother/sister? What are you doing to make certain that they get love and attention equal to what they think their brother/sister receives from you?
The list goes on:
Do you advocate for your child at school, in the social service and health system, or do you feel steamrolled by them?
Are you arranging for the future when you will not be able to care for your child, or you just don’t ever think about it?
Do you feel understood and accepted by your community?
Do you ever have a private moment to be creative?
And on and on…
What are you doing to make the movement of your life go up?
Up takes effort. It doesn’t happen by itself. Gravity and entropy are inescapable truths we cannot change.
To get moving up, start by looking at your situation and seeing what is good. Acknowledge the good by telling someone about it. Then say “thanks” to whomever you think is responsible for the good you see. If telling them directly is not practical now, write it down so you can remember to say it later. Build up your “good” and “thanks” list.
Then tackle any one of the many challenges you face. Finding a solution will encourage you to see the good and will energize you to meet the next challenge. And so on until the burden is lightened and there are moments when the “good” turns to joy.
Every one of us can become more like Adam. You can find good in everything in your life. Even in what is most difficult and painful for you. It doesn’t mean this work is easy, but you can do it. The only difference between you and Adam is that he has decided that all his efforts will go into making his life good.
From the deepest place in my heart I promise you there is joy waiting for you to experience. Start now to feel it by declaring to yourself: I choose to find the good.
Remember: This is your life.
Now get busy and make it good.
Eliya Stromberg, PhD, lives with his wife in Jerusalem. They have three children and several grandchildren. Their second child has Down syndrome. He lives in an assisted-living apartment in a community that is a model for inclusion in Israel. Dr. Stromberg has been a classroom teacher of both typical and special-needs children and adolescents. He was a public school and Jewish day school principal and university lecturer to graduate students in education. He writes for and speaks to fathers and couples and teaches them how to reframe their situation to see what is good. Meet him at www.fathersconnect.com and contact him at firstname.lastname@example.org.