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by Katherine Sefton

Summer 2004 Vol. 7.3 Beginnings and Endings
Spring 2004 Vol. 7.2
Winter 2004 Vol. 7.1
Fall 2003 Vol. 6.3

Summer 2004 Vol. 7.3
Beginnings and Endings

Nothing is more constant in our lives than change. This is particularly evident when we look at the growth and development of children. It seems that there are new things happening every day in the life of a growing child, new things to learn about, new behaviors to test and discard, new people to meet, new challenges and successes. This kind of change and growth is exciting, rewarding and often hard work. It involves gain and loss, one skill or interest making room for the next; while once we were thrilled to see a child crawl across a room, now we are overjoyed to see her abandoning all fours and walking. Positive change and growth means adapting to the demands of our environment, and moving toward a goal that will provide a foundation for yet another goal to come.

The Down Syndrome Connection stands for positive change and growth for kids with Down syndrome, their families and people working in the field. Despite the fact that disability makes learning and developing more challenging and often harder work, the Down Syndrome Connection provides a resource and support system for doing that work. Parents work harder; the Connection puts parents in touch with one another and with needed advocates and resources. Children work harder; the Connection holds classes and workshops designed to make learning easier and more accessible. Professionals have the privilege of working with kids and their parents in a unique and hopeful way; we have the pleasure of learning with and from children while we are offering them chances to learn. It's a good place to come to, and a good place to work.

A really terrific kind of change has been the growth of programs and staff at the Connection. It's been a couple of years since we began teacher training classes, which were put in place to allow for more people to learn about and use developmental therapy as a method of helping and teaching children and young adults. The hilarity of our night classes hides a serious commitment to finding out all we can about the reasons for learning difficulties and the approaches that will make a difference. The variety of experience being brought to bear in each of the Connection classes is astounding, and having the chance to work alongside this group of professionals stands out as one of the more priceless phases of my career.

We are in a constant state of flux; new babies, new families, new volunteers, new teachers and new classes. I see a shift toward more art and self-expression that is truly gratifying, and I see a strong group of young families standing together as families of older children have been doing for years. I see teachers and volunteers communicating and adding new flavor and energy to work that has been going on for more than 25 years. I see that this is a good time for me to make a change in my role at the Connection, and that my moving aside makes room for wonderful changes and growth that are a necessary part of the future of the Down Syndrome Connection. You will still hear from me through the newsletter, through some grant writing, and of course, through the teachers with whom I will continue to consult.

There is absolutely no way for me to express how very much my work here means to me. Those of you who know me know that I have had a difficult time moving away from the Connection, that despite the long drive, I have wanted to come down and be a regular part of this group. In my heart, I will always hold what I have learned and that I have been loved and taught by the best teachers in the world: your children. I thank you from the bottom of my heart.

Spring 2004 Vol. 7.2

The information given to parents of children with disabilities seems to be varied, even conflicting. All too often, however, the general message is the same: Your child is different. Have different expectations for her.

For more that 20+ years I have been privileged to work with parents of children with Down syndrome. Always this is a group of motivated, somewhat confused, searching parents. Almost never are parents reminded that their kids are kids first, usually kids primarily in form as well as function. Hence, it is not unusual to hear parents of young children with Down syndrome asking questions about what they can expect of their baby. Somehow, the thought never crosses a professional's mind to reinforce similarities, as well as if not before, differences.

In my experience, (I really hate that phrase, but I DO have some) children with Down syndrome develop, behave, annoy and charm just like those without the diagnosis. When they are babies, they are helpless; as they grow they need help, support, and sometimes a good push toward independence. As for the child who never resists independence...she doesn't exist! And while it is true that some children with Down syndrome have more trouble developing some skills, we do all children a great disservice by accepting difficulty as a given rather that a challenge. With a child lacking a trisomy 21 diagnosis, we would never consider allowing dangerous or antisocial behaviors...we want our children to be safe and well liked in the world. However, it is tempting to look past these same behaviors in "special needs children" (another of my least favorite phrases). We may assume that these kids "don't know better" without catching on to our responsibilities. A child who doesn't "know better" needs and deserves an adult who loves them enough to teach them better! Should we hold a bottle for a one year old baby with no physical disability? We would never consider letting a "normal" three year old run into the street without levying severe consequences. What "normal" eight year old is allowed to display infantile table manners in public? Do we rely on our "normal" ten year old to respond when spoken to, or excuse them with a guilty little laugh?

Maybe I seem harsh. My concern for these wonderful, funny, perceptive children is that they will learn (erroneously) that they are incapable of full participation in life because it may be a little more difficult for us to teach them. Children are growing beings...you'd have to work pretty hard to stop them from learning. No child born with a disability should be further handicapped by LESS training, LESS expectation, LESS opportunity than their non-disabled peers. Yet, in love, grief and confusion that is often exactly what happens. The question is not "Can they learn?" but "Are we willing to teach?" And part of that teaching is practice, part is loving acceptance, and part is high expectation.

Winter 2004 Vol. 7.1
When is the "least restrictive environment" a mass of restrictions?
When is an "integrated setting" an exercise in segregation?
When is "full inclusion" not really full?

We have, in this society, a set of laws governing how we educate children with disabilities or delays. These laws, combined with social welfare laws and protection and advocacy policies, can put us right out of the business of education. Add to that mix the generally accepted views of people with developmental delay for disability, and it could be impossible to go about finding the right way to offer education to our children.

As soon as a child is identified as needing extra help or special education services, the family is embroiled in meetings and forms. The systems come together, ostensibly to offer help, evaluations, parental rights information, and services to address the area of concern. Meanwhile, information about the child herself can be lost. This is not even to discuss information FROM the child. Yes, even babies can tell us a great deal about what they need-if we pay attention. The youngest child I know can give us clues about what areas are delayed, can point out things that need strengthening, and problems that are getting in the way of "typical" learning and developing. This same child can let us know what is NOT a problem, what areas are strong and can be used right now to help reach and teach her. Amazingly, a child can do all of this without benefit of having EVER read PL94-142 or any child development texts.

This column is being written to alert all of us to the fact that we are making decisions based on laws and policies and not on children. For most of you, this is not news. What could be news is that the very structures put into place to make the education of kids with special needs work can make it virtually impossible to do so. Not too long ago, I sat in an IEP in which the family insisted on placing their child in a typical classroom, without regard for the fact that even they did not think the child would like it or learn there. They made this stand because it was their understanding that "least restrictive environment" meant the closest possible classroom to "normal". This child spent the next number of months being sent out of the classroom daily, made no friends, did not learn one academic thing, and hated being there. He needed constant supervision, was routinely banned from the playground, spent many hours in the principal's office, and was not allowed to participate in the class play. "Least restrictive environment" turns into a mass of restrictions....

A little girl in an "integrated" classroom who has no plausible way to communicate with her peers who don't know sign language, who requires the constant attendance of an aide who translates for her, who spends recess alone unless she is playing with her aide, and who has not one classmate who sits with her at lunch...this certainly doesn't sound like integration to me. It seems very much as if she is segregated, and maybe as if she could feel truly integrated in a different kind of classroom.

When I hear the words "full inclusion" these days, I really don't know what they mean. I know that inclusion in a classroom on a full-time basis can be a truly wonderful experience for some children. Kids who need some support to attend school with their more "typical" peers most definitely should have that support. Kids who do well with inclusion in their neighborhood school deserve every chance to make that work, as do the teachers who include them. There is, however, something about the phrase "full inclusion" that can be sad...and that is the word "full.". We hope and believe that our children will have full and wonderful lives, we work toward that end with every meeting, every evaluation, every class party, and every page of homework. But I think it is too common to see a day "full" of work and effort as the only result of full inclusion. A full life, for me, includes fun AND work, effort AND success, growth AND rest. The laws and policies have insured that we can put our children in a least restrictive, integrated and fully included school setting. It's up to us to learn from the children themselves what's needed and to place equal value on the ease, joy and comfort we all deserve.

Fall 2003 Vol. 6.3
Should I sign her up for that new speech program?
What if I don't push for supported full inclusion?
Could I fit extra work with my child into our day?
Do I know enough? Am I doing enough?

Last time I wrote for this column, I looked at the questions that parents have about their children. It is so common, so tempting to compare our kids, to see their little faces and lives through a film of concern and expectation. Disability adds a heightened sense of urgency, a focus on the problems in a child's development. I wrote about the importance of seeing our children as the marvelous creatures and teachers that they are, and the value of attending to the positive sides of each child.

Right after writing that column, I had a conversation with Loren Spina, who is one of my best 'mirrors.' Loren reflects what I have said, and asks questions about the next logical step in a given course of thought. She is incredibly valuable to me as a teacher, a writer and a parent.

That conversation made me realize that the process of comparing our children is only one way we can impair our perceptions and our relationships. We can, and do, question and compare ourselves as parents of children with disabilities. We listen with wrinkled brow to another parent tell of a service they've found, and try to figure out if we can afford the time and/or money to add that service to our already full plate. We see a brochure for a new nutritional supplement, a new speech program, a new camp, or a new STEP class! Right away we have the opportunity to judge ourselves as inadequate if we choose not to sign our child up. Maybe another of our children has soccer practice. Maybe we live too far to get there comfortably without facing horrendous traffic. Maybe we just want one afternoon a week free from minute-by-minute scheduling. In any case, our choice not to sign up can come back to haunt us: the next time we see a parent whose child is doing well in the class, the next time our child has a "bad day", the next worried, sleepless night.

There is just as much emotional drain involved in judging and comparing ourselves as parents as there is in comparing and judging our children. In putting the focus on what we should do about a disability in our family, we have less opportunity to accept or even enjoy our own particular parenting/personal life skills. When children learn that their disability is the focus of stress and "shoulds" (usually this is subconscious knowledge) they begin to act out, to pressure themselves, or to withdraw. Nobody wants to be the reason siblings are in the car from dawn to dusk, the reason that parents are tense and worried. It's hard to do your best parenting when you're tense, worried, and tired of the disability treadmill.

Some of the most impressive parenting I've watched and learned from has NOT revolved around an area of delay. Some of the best lessons I've learned from parents has had only to do with that personality, that sense of humor, that solution to a "typical" discipline issue. We are all so much more than parents of a child with a developmental delay; we are all so much more than the classes we sign up for, the organizations we belong to, and the meetings we attend. There is so much of value in the way we talk with our kids, in the family stories we tell them, in the holiday traditions we pass on.

It is certainly true that having a child with special needs puts us in the position of having to find extra help, different classes, unique solutions. It also seems true that living in that state of awareness, of grief and of concern changes us. It may seem that issues about disability are predominant, that the "shoulds" take over. However, we are still ourselves. Each of us responds in a different way - thank goodness! If there weren't so many parents with different ways to grieve, to challenge the system, to find resources, and to share ideas, we would all be poorer at this monumental job.

It's pretty common knowledge that children do best if they experience acceptance and love. Accepting and loving my child for their whole self only works in the long run if I can also accept and love myself as a parent who is using everything I have to the best of my ability. I'll make better decisions, be truer to myself and my family, and move through this era in my life with more ease and clarity.