Saturday, November 27, 2010

Great Expectations, Difficult Transitions

Great Expectations, Hard Transitions November 26, 2010

Having kids was the most exciting event in my life. I had thought of having kids since I was a kid. I wanted lots. As I grew older, the wish for children was always in my universe, like the north star......not always visible, but always there, a point in the galaxy to organize life by. As I reached adulthood, the desire remained. I had a familiar nest of hopes and expectations - the joys of birth, the delight of holding and nurturing an infant, the building of a family, the chance to teach, share, play, lead, comfort. As the oldest of four brothers, I had some experience with helping younger ones. I loved the sense of innocence, the spontaneity, the curiosity.....I didn’t even mind changing diapers. I didn’t need for my kids to grow and go to Harvard, win the Nobel Prize, or cure cancer. In fact, having suffered some excess expectations as a child, I was very clear that I simply wanted for them to grow up to lead a good life, to be the best they could be and to find happiness.

I have two wonderful is in college and doing great things that one does in college. He isn’t entirely sure what he will do when he graduates, but he has many options and many talents. For him the biggest challenge may be deciding where to put his energy and taking the plunge to commit to that choice, at least for a while.

My other, older son, alternates his time, primarily living with me at the moment, but spending part of his time with his mother. He is happy right now, perhaps happier than he has been in years, having just started a new transition program, begun to make some new friends, and perhaps, having a real relationship with a young woman that he met through the program.

Since he was two, doctors have given him a succession of labels, some somewhat less ominous, ,some more serious, but all significant. Whether ADHD or LD or NLD or Asperger’s, or anxiety, or OCD, or Cerebral Palsy or Epilepsy, I have learned over the years that in the disability game, there is no winner on the severity scale. All have an impact that can vary enormously from person to person. All can be helped in some ways through various interventions, but all can and generally do have a huge impact, on the child and on their family.

Part of living with disability is recognizing the inevitable tension of finding one’s place in the world in a world that is not very welcoming. How to be “regular” given what ever differences the child experiences? How to participate and feel and be included when the people around are not always welcoming, or may be welcoming, but unsure of how to welcome, or may be sure of how to be welcoming, but not aware of who this person is and what they want and need. Often, life with disability is also complicated because the child’s needs and abilities are constantly changing, growing, becoming more challenging. Some things become easier, some harder. Some things are out grown or treated successfully, others grow worse with time or become harder because the gap between the child’s abilities and others is growing.

And sometimes, the tension is made worse by the inability of the army of doctors, therapists, evaluators, educators, case managers, and well meaning family and friends lead to a witch’s brew of different diagnoses, prognoses, recommendations, and expectations. Condition x requires y, but condition A requires B. This one says x, but that one say A. And if both x and A are present, others say that Z should be done.....
Worst of all, some say - he or she has “reached their potential.” Now it is time to accept that they have gone as far as possible and to provide for them....and if parents don’t accept this, we are in denial.

My son has lived this. We have lived these tensions with him. What is his potential? (Impossible to know unless we keep trying) Where can he function best? (in a program or at home....we are mortal, but programs and staff come and go and are often not all that they appear to be on paper) How can he learn best? (I wish I could figure that out, but I know that giving up on learning will be the only option that guarantees failure). Can he keep learning (yes, absolutely...whenever I doubt it, he surprises me with a big leap forward.) There is so much pressure to accept a accept the lowest level of accept the easiest solution.

The state of the world makes this even harder. An economic crisis. Reduced funding for programs....economic uncertainty for all of us. For kids with disabilities and their families, all of these things are even more devastating than for the rest of the world, because the demands are already greater. And each transition, from one school to another, from one program to another, from one developmental stage to another, brings new challenges, new demands, new surprises.

And for the person with the disability, the question remains: “What is my future?” They and their family must find ways to answer this question at each stage of transition. The answer may not be the ultimate answer. Indeed, any realistic answer needs to include the possibility, no the inevitability, that the path will change, perhaps often. But we need to find a path, a sense of future, a sense of belonging, a sense of community. Ultimately, this is far more important than a particular career, or job, or concrete skills. Ultimately, the most important challenge is to help the individual find a way to be as independent as possible, but as connected and engaged as possible - to a path, to a group of people, to a life that provides a sense of self, of worth, of relationship, of belonging, of happiness.

As parents, we must evolve - I am still evolving, but as I do so, I increasingly recognize that some of the intangibles of life are more important than those that we typically use as measures of success. For both of my sons, I wish for them the most success and independence and happiness possible. They will be on different paths, but many of the things that will be the true measures of happiness for each of them will be the same - doing what they want to do, with people they care about and that care about them, feeling that they are doing some they value and is valued by others, giving, receiving, and having the chance for love of friends and family.

As I evolve (and struggle) with some of these issues, I also struggle with my desire to promote my son’s opportunities for growth without being unrealistic or creating false expectations. But I always come back to the lesson he constantly teaches me, that setting limits creates limits and allowing for unknown or unexpected possibilities and maintaining hope and support that we always can grow assures that growth will keep happening.