My daughter, Kari, just celebrated her 34th birthday. When she was born I was given the expectation that if she survived her first year, she might live to be 35. Changing expectations has been the most exciting part of these 34 years. They have changed the community, my daughter and me. First our family had to get through the grieving process. “What did I do wrong?” “Why me?” With the support of our friends, grieving was quickly replaced by “What next?” “Who is this child?” Help came from The Prophet by Kahlil Gibran.

And a woman who held a babe against
her bosom said, Speak to us of Children.
And he said:
Your children are not your children.
They are the sons and daughters of Life’s
longing for itself.
They come through you but not from you,
And though they are with you yet they
belong not to you.

You may give them your love but not
your thoughts,
For they have their own thoughts.
You may house their bodies but not
their souls,

For their souls dwell in the house of
tomorrow, which you cannot visit, not even
in your dreams.
You may strive to be like them, but seek
not to make them like you.
For life goes not backward nor tarries
with yesterday.

You are the bows from which your
children as living arrows are sent forth.
The archer sees the mark upon the path
of the infinite, and He bends you with His
might that His arrows may go swift and far.
Let your bending in the archer’s hand
be for gladness;
For even as He loves the arrow that flies,
so He loves also the bow that is stable.

Now the process of ” letting go” started. Letting go is still going on and it is the most difficult of anything you must do. My daughter and your sons and daughters are so “special.”

Well, my daughter, Kari insisted on being Kari. She was neither “my princess” nor “my dumpling”, she was KARI; end of discussion. I learned that letting go was a process of transferring decision making from my wife and me to Kari. Training for making appropriate decisions -- absolutely no different than for our other children except for the techniques used. Obviously “by example” is the most important. Our children, including Kari, are very observant. What a difficult responsibility! But this is the responsibility that we undertook when we conceived our children.

One of our earliest “expectations” was shattered. I had been told that Kari would have to be taught by rote and the lesson repeated over and over because Kari would not be able to generalize from specifics. WRONG!!! Every person with a developmental disability, who has cognitive ability, generalizes from specifics. Kari certainly does and she is quite perceptive.

Another “expectation” shattered; Kari might not be able to read. Imagine Kari’s delight when she realized that those symbols on the page - words - were concepts that she already had in her vocabulary. Also, words in Spanish and Italian and Greek were just as good as English. Children with Down syndrome could be multi-lingual. We shattered the expectation that Kari would not benefit from an academic curriculum but would need a program that was vocationally oriented. Our argument was that Kari needed the skills in how to learn more than the skills of how to do something. Learning how to do is, to me, a sub-set of how to learn. The irony in this is that by the time that Kari finished public education at 21 she had the skills to start learning. I hope that these changing expectations will bring things like 2-year enrollment in community colleges and revised high school curricula.

Next came the new expectation that Kari would be able to live and work in the community. Her transition program in high school included how to deal with public transportation, life skills, sexuality issues of ” how to say no”, how to work, etc. At what age would these transitions be appropriate for Kari? The present expectation for work is age 21. This is something that we should re-examine. Kari would have benefited from two years in a community college. She did take some courses and some community night school courses but work and night school, particularly with the night transportation problems, seemed overly difficult. These also conflicted with her sports programs that have been so very beneficial to her physical well being. Swimming and skiing and bowling and tennis and softball have helped Kari to control her weight, which is a chronic problem in the developmental disability community. Appropriate diet is also critical. As Kari says, “No junk food.” Just to set the record straight, pizza is not junk food.

There is the present expectation that transportation to non-work activities will be provided by families. We need some innovation here. Kari has started her eleventh year as an office assistant at the corporate headquarters of Puget Consumer Co-op. She loves her job and never misses a day of work. They love her and what she does is cost-effective. Kari is paid well for 24 hours per week and receives the benefits of full medical and dental coverage, vacation time, sick leave time and a 401k retirement program. How incredibly expectations have changed.

What I have no expectation for is when Kari will “retire” and what she will do and how she will live. I possibly will not be alive when this time arrives. However, Kari’s mother, Kathy, is on the founding board of a parent controlled, non-profit corporation, LifeSPAN, to maintain “Circles of Support” for individuals, like Kari, to assure that Kari’s quality-of-life is maintained when we, as parents, are not capable. It is my sad task to tell you that the final time of ”letting go” is when we die. You and I are committed from birth to death and this is probably the biggest change of expectations of all. Before, the expectation was that our children would die before we would. No longer. Advances in our medical care and changes in the motivation to live have profoundly changed our world.

The earlier expectation that children with developmental disabilities would be given to the state, which would provide institutions for their care, is gone. Doctors have changed their advice to parents. Not all, but most. Individuals with developmental disabilities now have the expectation of civil rights, which they did not have before. We have ADA and the Supreme Court Olmstead decision that say that people with developmental disabilities cannot be discriminated against and that people with developmental disabilities do not have to live in institutions. The institutions in this state are incredibly expensive to keep open but more to the point, individuals in institutions have no choices and no control over anything in their lives, therefore giving them little motivation to continue living. The downsizing of institutions in our nation is the second biggest factor in the changing expectations of mortality. We have no children in our state institutions nor do we wish any.

The changing expectation of mortality is changing the expectations of people with developmental disabilities to establish intimate relationships. My daughter, at 34, is dating. Suddenly I am in a time warp. My daughter is now 16 and no young buck is going to take advantage of my daughter. Seriously, “we” did not prepare for this. We did not see that specific training was available on appropriate sexual development. The expectation was that they weren’t going to live long enough to need this training. We gave lots of attention to “How to Say No.” What about “How to Say Yes, and When”? Noboby wants their son or daughter in the clutches of the justice system on the charges of inappropriate sexual behavior or sexual harassment or being labeled as a sexual predator. The employment sector is paranoid about inappropriate sexual behavior; and remember, inappropriate sexual activity is in the eye of the beholder. We, as fathers, have a mandate to get training in place. NOW!

What is the point of my daughter’s experiences? To me, it is the message that everything is a process without preconceived goals and expectations and that there are no “end” goals. Where are we going? To a better future. How are we going to get there? One step at a time. The saddest lament I have heard was a father grieving that he would not ever have a “normal” son who would earn an Olympic medal. I have no “normal” children. They are all extraordinary.

Where did I fail as a father? Now I think it was a mistake to shield Kari from the controversy and battles with bureaucracy. Kari has little concept that there are people who do not have her best interests as a priority. Their need for control is paramount over Kari’s needs. Kari has this universal drive to be in control of her life. She expects to have choices and expects to participate in the decision making. The major weapon that Kari has is passive resistance. It is my experience that people with developmental disabilities are masters in this technique. For many, passive resistance is their only control in their lives. So, what is the bottom line? What “reward” do we fathers get? Well, for me, it is unconditional love from Kari. Sorry guys, I am the “Best Father in the World”.