Seeing Specialists with your Child

My younger daughter gave birth on Nov. 6th to a little girl. So just 7 months after becoming a grandmother, I’ve been blessed again. Now six weeks old, little Vered is already beginning to smile and hold her head up. Suddenly, Orly at 8 months seems so much more grown up. She is babbling, picking up Cheerios to eat, and pulling up to standing. I am amazed to see how quickly babies grow and learn, so obvious on those rare occasions when we get to see them together!

Things weren’t so smooth at the beginning. Vered developed an infection from a blocked tear duct within the first two weeks. Off went the parents to a pediatric ophthalmologist who suggested they could try to massage the area and use a warm compress, but scheduled an appointment for surgery. My daughter commented to me, “She’s barely two weeks old and I already had to take her to a specialist!”

This comment resonated with me – so many parents whose children I taught had talked to me of the difficulties involved with the logistical and psychological difficulties of having to take their young children to specialists. The problems they faced seemed so much worse when their own pediatrician referred them to a specialist. How were these parents supposed to handle their child on a minute to minute, day to day basis when even their pediatrician wasn’t able to handle the baby’s problem? They told me it made them feel less competent as parents when they had to take their child to appointments with various specialists (e.g., neurologists, occupational therapists, speech and language pathologists).

Luckily the massaging and warm compresses did the trick on Vered’s eye and the surgery was avoided, much to the surprise of the ophthalmologist!

Let’s hope we can help empower parents of ALL children to have the competence and confidence to support their children as they develop. What kinds of experiences have you had with specialists?

Happy Thanksgiving

Thanksgiving is one of my favorite American holidays. Unlike Halloween, Christmas and Easter, there are no overtones of a religious holiday. Thanksgiving commemorates the Pilgrims sharing an autumn harvest festival with the Wampanoag Indians. Today it's mostly celebrated by a turkey dinner shared by family and friends.

This year, the holiday arrives just as we face the worst financial situation in the US in 75 years. Thanksgiving asks us to pause and give thanks in gratitude for all we have. Is the glass half full or half empty?

Isn't this what we ask of parents, family, friends, and teachers of children with special needs? Don't we ask the adults to see the child's strengths rather than his/her weaknesses? Now we see it's not so easy to do. It's something we have to learn - to see the little positives, the small changes that mark progress, to see the smile or other nonverbal expressions of success. But it's that smile that makes it all worthwhile and rewarding. Now we have to see those same small positive changes in our country, our economy, our own lives. We have much to learn from those who live with special health, cognitive, language, and emotional needs.

Happy Thanksgiving!

New Beginnings

It always amazes me that very close to, or this year coinciding with, the time when the leaves change color, our Jewish calendar starts a new year. Beginnings are good – a clean slate and a new start. A new year offers us an opportunity for changing, for setting priorities, for trying to do things better this time around.

The problem is that we often revert right back to our old ways – over/under-eating, over/under-exercising, watching too much tv, ignoring our promise to ourselves to better balance work, family/friends, and fun. Still, even though we know it will be difficult, we tell ourselves this time will be different and we’ll be more successful!

It’s something we should remember about our students. They, too, want a new start – to shed their old labels, to begin anew and try to do better. This time they will hand in their homework; they will complete projects on time; they will pay attention in class. Even though it’s hard to change, they will attempt to live up to their own promises.

Teachers and students may not have difficulty with the same behaviors. Usually, teachers had positive experiences in school – otherwise why would they choose to spend their working days in schools? So teachers tend to be good readers. We like to learn. We are at least fairly well organized. But these are important school behaviors that many students, especially those with special needs, find difficult. Disorganization is a common issue for students with learning disabilities, AD/HD, or executive functioning issues.

As teachers, we must remember how difficult it is to change one’s behavior. Then we should give our students the positive reinforcement and encouragement they need to change their own behavior. No matter how small a change, it could be first step towards school success.

Accomplishing the TO DO List

It’s been a long while since I’ve written – classes, bike rides and the hecticness of life put the blog on the back burner for a while. Once there, it was hard to move it to the front burner. So I did what we suggest for individuals with organizational issues and for all students with special needs – make a list, break down each task into small and “doable” parts, and check items off when you accomplish them.

And now, I’m back to writing – OK, I’ll admit that I’m a bit of a wimp and the fall temperatures have gotten a bit too cool for my bike. However, it is the list I keep going back to, and it’s what seems to keep me moving ahead on the things I need to do. Without it, what I call the “mundane stuff of life” takes precidence and I forget about the bigger and probably more important things, which then never get accomplished.

So my “TO DO LIST” is long and colorful (I group the areas of work by colors). My rainbow list now has lots of bold Xs on it, a testament to my perseverance and the ultimate success of the strategy I’ve used with so many of my students – write tasks down, break the tasks into small component parts, do it, and X it off the list.

That’s what works for me. What works for you??

Four Children at the Seder

One of my favorite parts of the Passover seder is the four children, who were sons when I grew up, but now include daughters as well. This section of the readings highlights the idea that children are different and that we must relate to each by meeting him/her where s/he is at. So the responses each receives is as different as the question they pose.

Imagine my surprise at a Hebrew College class a few years ago when the daughter of a Chabad rabbi told how her father taught her about the fifth child – the one who isn’t even at the table to ask a question. She explained that this is the Chabad mission to find those who are so disenfranchised and detached from their Judaism and to bring them to the table.

I love this midrash, not only because it so clearly explains Chabad outreach efforts, but because it makes me think about all those who aren’t visibly part of our Jewish community – in synagogues or even at their family seders.

I am reminded of the parents of a child with special needs who no longer celebrates seders with their family because their sibling is uncomfortable around their child who has difficulty chewing and swallowing. I think of the family whose child complains bitterly about attending the family seder. Her reading disability is front and center at the seder because of the family ritual of “round robin” reading of the Haggadah. Such reading, in English or Hebrew, was introduced to make their seder more participatory! I think of the family who no longer joins their extended family because the home where the seder takes place is not wheelchair accessible. Then there are the cousins who seem to be playing so well while waiting for the adults to finish the meal, but are too loud for one of the adults. When the children are told to be quieter, the uncle is told to “just close the door.” The uncle returns to the adults and has a tirade about his nephew’s rude behavior. Who’s the child in this situation, the uncle or the boy who has Asperger’s?

Yes, each of these situations could be easily improved through a rational discussion that could lead to a truly more inclusive seder for all family members. But families aren’t always rational or always sensitive or even sometimes aware of the impact of their actions and words.

So the four children continue to serve as a model for all of us to be more inclusive, to respect each person’s needs, and to really see all the people who are at our seder as well as all the “fifth children” who aren’t.

Grandchild Dreams - and Nightmares

Awaiting the birth of my first grandchild awakens me at night with concerns and worries. While I sailed through my own pregnancies, ignoring thoughts of any possible complications that could arise, they now fill my mind.

I tell my daughter and son-in-law their lives will never be the same once this baby is born, that raising a child is the most awesome and important work of anyone’s life. But I don’t tell them about Kingsley’s piece, “Welcome to Holland,” a reading I have shared with so many students, teachers, and parents. Nor do I tell them about the information on how parents adjust to having a child with disabilities, the research on the grieving process they go through. People ask about the child’s sex – do we know if it’s a boy or girl? do we want a boy or girl? I think, “I really don’t care” – all I obsess about is its health. Despite all the prenatal tests coming back perfect, I know there are no guarantees in life.

Then I move past my nightmares, and dream about a girl who could inherit her mother’s toys. Then I dream about a boy who would bring a new adventure and could also play with his mother’s toys. Then I dream about watching my daughter mother her own daughter. Then I dream about watching my daughter mother a son. Then I dream about a safe world that this child will hopefully inherit.

In the end, I know we will love, support and nurture this new addition to the family and bring out his or her potential, yet to be determined. It’s not really about having expectations; it’s about having dreams and hopes and knowing that those dreams and hopes will change over time as we get to know this real child – the very healthy baby girl born March 27, 2008.

Learning from Lior

Somehow we get caught up in the details of life and work we kind of lose track of the big picture. At work there are emails to respond to, calls to return, memos to write, meetings with students and colleagues. At home there are also emails and calls, laundry, shopping, and meal preparation. Time to relax? Time to remember why you work anyway? Time for yourself? Actually, time seems to disappear before my eyes, with the clock and the calendar moving faster than I ever thought possible!

And then once in a while, something comes along and you have an “ah, ha” moment when the big picture stares you in the face. Watching the movie “Praying with Lior” provides such a moment. This movie, ostensibly about a boy with Down syndrome preparing for his Bar Mitzvah, is so much more than that. True, the producer, Ilana Trachtman, has captured Lior and his family and friends and his Bar Mitzvah, but really, she has captured life with all its perplexing questions.

That the movie is a moving tribute to living with a child with Down syndrome is clear. Definitely a two handkerchief movie! But it is also a humorous one – laughter through the tears. More than that, it is a picture of a family, devastated by their mother’s early death from breast cancer, who move on with their lives, integrating their father’s remarriage and living with a son and sibling with special needs. It portrays Lior as a boy remembering his mother, loving his stepmother, and loving his Judaism expressed through his praying with fervor and belief. It portrays Modechai, Lior’s father, worrying about this Bar Mitzvah’s meaning, examining his dream, hopes, and expectations. It portrays Lior’s siblings, each with their own fears, realities, pride and love for their brother. It portrays Lynne, his stepmother, who gives space for the family’s memories of their mother while establishing her own role in nurturing and loving the family. It portrays a community that provides support and continuity.

As a special educator and teacher educator, I found the scenes of Lior at school and the interviews of his classmates mesmerizing. Here is an Orthodox school that includes Lior and provides not just a warm place where he thrives, but where his classmates are also his friends. From their words, we see how much they have gained because Lior has been a part of their school years. They respect his differences, care about him, and learn from him. Here’s an example of a school and students who really “get it.” Lior’s classmates have thought about the challenges he faces and it clarifies their own choices as they live their lives. Yes, this is what inclusion is about, providing important life lessons for everyone involved.

And this is what special education is really all about – we teach to enable each person to reach their potential, we learn from each other, and the process enables all of us to be better people. And this movie has captured it all – memories, continuation, spirituality, friendship, love, pride, and community. And this is why, through the tears and laughter, it provides an “ah ha” moment of utmost clarity.

If you haven’t yet seen the movie, find out where it’s playing at www.prayingwithlior.com and run, don’t walk, to see it!

People of the Book, People with Learnng Disabilities: A Disconnect

This Shabbat, Professor Neil Gillman was the invited speaker at my synagogue. Several of his statements and ideas resonated with me, but I want to focus on his statement, "Jews are good with words." Yes, I thought, that sounds familiar, we are often called "the people of the book."

As a special educator, I hear those words and wonder about those individuals who have difficulties reading or listening to words. How included do they feel when we use these phrases? Do these phrases make them feel alienated, left out, different, excluded?

But then Dr. Gillman went on to say that words aren't enough. He used the story of the golden calf to suport his premise. Moses went up on Mt. Sinai to receive the Ten Commandments. The people remained at the bottom, waiting for their leader. But it took a long time for Moses to return and the people were impatient. They needed something more concrete to touch and see, and hence the golden calf was created.

How many of our students similarly are learners who need more than words? How many need to use pictures, graphs and charts to help them remember? How many learn by touching and manipulating materials? And how many are impulsive, acting before thinking things through and considering the options and consequences of their actions?

Maybe we really aren't so different from our ancesters.

Structure in Ritual and Special Education

I've been thinking about how teachers handle behavior issues because this semester I’ll be teaching “Behavior Management for the Inclusive Classroom,” at Hebrew College. While I've taught this course before, each time I start to prepare the class, it's a new beginning. I may take out previous notes and PowerPoint presentations, but then there's new research to read, information to add, and ideas to consider. This semester I am adding a focus on Jewish ritual, considering what lessons we can learn from that perspective regarding improving behaviors in the classroom.

Behaviors play an important role in leading a Jewish life and in being a special educator. Looking at life through each of these lenses, we can learn from our Jewish heritage about the importance of structure and routines.

Structure provides security and safety. It is commonly accepted that structure offers a person a set of boundaries within which it is possible to function; without prescribed boundaries a person may be at a loss to know what behaviors are expected and accepted. Judaism provides many opportunities for structure. Judaism provides many ways for structuring our environment. Our Jewish laws and practice suggest (at times fairly strongly) what should and should not be done; often laws outline consequences for non-compliance. These laws and practices provide a structure for how and when to pray, eat, and treat others. While we see differences in practice based on denomination, the basic structure for living a Jewish life remains similar across denominations. Special educators can draw on this perspective in emphasizing the role of structure in providing a safe and secure classroom environment where students can learn.

Judaism also offers routines for people to implement. Preparations for Shabbat and holidays involve cleaning, cooking, lighting candles, washing hands, offering blessings and singing. These routines are examples of specific behaviors that get repeated week after week, year after year. The consistency and repetition of these actions help reinforce the behaviors and support their implementation. There is a midrash (story) that when the angels appear at a Jewish home just prior to Shabbat and see a home clean and ready for Shabbat, the angels say, “it should be just the same next week.” And when they see the next home but it is in disarray, they repeat the same comment. This story holds an important lesson for special educators about how behaviors easily become repeated and habitualized.