Sleep-away camp

Ready for Horseback Riding at Camp

It was a very big deal for us (as parents) to make the decision to send Isabella to sleep-away camp. Last summer, she went for two weeks with a girlfriend from school (read: built-in safety net — that’s good for the child, but mostly the parents).When we went to pick her up to come home to attend a family function, she asked to go back for another two weeks. We obliged. This summer we wanted a camp with more academics. We found one, but the only option was 7 weeks. Yikes! Isabella’s response: “Seven weeks is a long time.” Yes, it is.

It felt like diving into water that you know will be frigid, but it’s a hot, humid day. If you want to cool off, you have to do it. If we wanted Isabella to get a more academic experience (preventing regression), while encouraging independence, we had to go for the 9-week sleep-away camp. It has been three weeks and today is Isabella’s 15th birthday. It’s certainly not were I expected her to be at 15 when she was born or even when she was 5. Here she is nevertheless — loving it, learning, and getting those wings that she (just like every child) needs.

Graduation — a milestone

Isabella’s first request for her graduation from the Banyan School was Aunt Joan and Uncle Donald’s attendance. Since her grandparents are no longer with us, Isabella (and the rest of the family) has looked to my father’s brother and his wife as our wise elders. It’s a reminder of the importance of the generational connection. I was lucky enough to have four grandparents until I was 16. My paternal grandfather passed away only seven years before his son, my father. He was a vital force in the lives of all 12 of his grandchildren.

The graduation went off without a hitch. Each graduate was seranaded with words from the director or the principal of the school. What stuck out for me was that Isabella was the only student referred to as queen, as in Queen Isabella. Yay, that’s my girl! She and her sister Victoria both have names that once belonged to queens. So, why not think of yourself as one. I had no idea that Isabella’s school thought of her the way that we, her family, do.

Learning through fear (the parents)

Today marks the fourth time that Isabella has gone off on her own unexpectedly. The first was probably the most serious. She was just four years old and had just learned to use the bathroom. She was with my sister at a street fair. Yes, a street fair — every parent’s nightmare locus for a missing child, perhaps only second to a mall. (Isabella became lost there once several years back while on my watch.) At the street fair, she was looking for a bathrrom. After jumping up onto vendors’ tables and screaming her name, I found Isabella crying in a one of those stinky portable bathrooms. She was wet and very frightened. That was the only time she had any fear when she separated from the adults that accompanied her.

The mall incident was typical. Isabella saw something that she liked in a store, so she went in to check it out. After my panic subsided, I figured which store she would like and found her immediately. She wasn’t gone long enough for me to involve mall cops. The time before today happened while she was scootering. My husband took her out scootering for exercise. They both scootered. Isabella, who once was not able to master the coordination required, has become quite proficient and fast. At some point, she scootered ahead of her father. The police got involved. She was missing for over an hour. She had scootered to the location that was planned. It required no street crossing, but was far from the start point.

Today, was a very different. After occupational therapy each Thursday, Isabella takes the elevator down four floors and meets me in the car. We drive home. This time, her father was picking her up. He wasn’t there after she got outside. She wasn’t there when he arrived. My husband called me. I was out with my older daughter. I called the police and ran home to get my car keys.

Isabella’s school backpack wsa on the kitchen sofa. For a moment, I couldn’t understand how it got there if she was dropped off at occupational theraoy immediately after school. I called her name, she answered and came downstairs. What happened? No one was there to pick her up, so she walked home. Other than walking to the mailbox and grocer around the corner from our home, Isabella has walked no where in our town. This place is really far from our house. I only drive there, espically on very hot days like today.

This means that she had to pass the home of her speech therapist, which is close to our home, requiring her to cross three streets. Today, she crossed many more streets (I do not want to count). We had been considering allowing her to walk home alone from speech. I guess she’s ready.

Following the path

Because we have teenagers and because we live in metropolitan NY, our children have friends of all races, religions, and ethnicities. As a family, we have attended several bar and bat mitzvahs over the past years. The functions following the ceremonies have ranged from somewhat basic (none were at home parties, however) to affairs to remember (more like weddings).

What had the most impact for me was not the high-end table service and wonderful food at one event in particular. It was the bat mitzvahs of two girls from Isabella’s class that really got me. Okay, have you ever been to a bar or bat mitzvah? Learning those prayers…and in Yiddish, oy! This is no easy task for any 13-year-old. Throw in a language-based learning disability and you’ve got , well, a possible insurmountable task.

Both girls got through the prayers fine, though I have no ability to critique them. They both sounded sufficiently Jewish and holy to me. What was really truly amazing was what they said in plain English. One girl, aptly named Rebecca, was feted by her mother who told Rebecca they she learned more from her than anything else in life. Yes, I understand that. If you follow the path that your children lay, you will learn about the deeper meaning of life.

The other girl named Nina was incredible. Though neither of her parents had a mitzvah (her father is an Irish Catholic), Nina insisted on taking Hebrew classes. This child has serious fortitude and ambition. Of course, her parents obliged. The speech. I wish I could tell you more about it, but I can’t. I was crying too much. She got up to that podium and said how she knows that things are more difficult for her. Simply recognizing this is huge. Most of our kids do not moan about their challenges. (Recall, Isabella never asks why she and her twin attend different schools.)

On top of this, Nina talked about her mother’s breast cancer…and that she was happy that it was gone. Oh my God, just shoot me! To round out the afternoon, a boy with special needs with whom Nina is acquainted seranded her on the French horn playing a Beatles song. Yes, we had fun at Phoebe’s bat mitzvah, but her talk didn’t particularly move me. Rebecca and Nina’s celebrations left me feeling that our children — the one with special needs — had much to offer the world. I experienced watching their parents follow the paths that each of the girls set. It doesn’t get better than that.

Maybe we did a good job

When you have a child who is not developing at the same rate as her peers, you worry about the future. Really, you worry about all of your children. I see many of my friends’ grown children living at home. Some have graduated from college and have gainful employment, even careers. Others are, well, lost. We really can’t predict who will get out of the house and who won’t — for our neurotypical kids. For our “different” kids, we definitely know. And as they age, we know for sure. So we worry. We consult with attorneys. We look into state programs (and become horrified). We come up with a plan…or at least think about a plan.

While out for brunch on a Sunday with our two girls, Isabella asked Victoria about college and moving away. I commented that Isabella would miss her. This happens now when Victoria sleeps at friends homes or goes away for weekends. Isabella is not quite right. Victoria dismissed my comment by pointing out that college was only for 4 years. And after college (or I was thinking, when we’re dead)? Victoria replied, “Isabella will live with me.” I was at a loss. We had never, ever discussed Isabella’s future with our other children. Victoria cooly replied, “I decided that when I was 9,” and took another bite of her eggs Benedict.

The fashion show

Every year Isabella’s school hosts a feel good fundraiser. It’s the fashion show. Isabella talks about it incessantly. Most of the kids in the school walk down a runway wearing clothing that has been lent to the school for this very purpose. This year, I think, was the first year that Isabella walked, or rather ran, with a classmate, rather than a teacher. She was really excited. I didn’t give it much thought until she jumped on the runway nearly dragging her partner. Clearly in a hurry, Isabella didn’t stop to get her picture taken. And I was worried about the physical condition of her friend, who is not quite as fast. Thanksfully, everything is okay and she has stopped obssessing about the fashion show. Well, at least until next month when she’ll ask,”When is the fashion show.”

Who am I?

Isabella recently stated that her school was different. I was surprised that she verbalized this fact. I thought, wow, this is great. Isabella knows who she is. She pointed out that her school had a large, grassy area. Yes, that’s different from your brother and sister’s urban schools. But that wasn’t exactly what I was expecting to hear. So, I told her that her school was for children with learning disabilities. Quite indignantly, she replied, “I don’t have a learning disability.” My first thought upon hearing this was: she has no idea who she is. When I told the story to a parent of a child in Isabella’s school, she had a very different reaction. Her’s was: she has self-confidence.

Okay. Those are two quite varied thoughts about self-awareness of a special needs child. Right? Well, maybe not. Maybe, the views are alike. Does she have self-confidence because she does not know who she is? Or, does learning in an environment with children who have similar abilities keep you level. The playing field is level. Children who go to school with varying abilities always know who the kids are who get the best grades, as well as those who get the worst. There are a lot of comparisons. And the comparisons don’t end there. Kids rate looks, clothes, humor, popularity, athletics, weight, body type, and so much more. Isn’t it okay for all girls to believe they are pretty even though they all look different? What’s wrong with a kid who didn’t make the varsity basketball team, but thinks of himself as a great basketball player? Nothing.

Kids need to value themselves for who they are. Period. Not as compared to someone else. Self-confidence derives from valuing yourself, not from valuing someone else. Child psychologists, teachers, parents all say the same thing. More than anything else, self-confidence is the most important value to confer on your child.

I’m feeling good today as a parent of Isabella!

Different, Not Less

The spoken motto of the made-for-TV movie and true-life story “Temple Grandin” is different, not less. And Temple certainly proves herself that. She speaks too loudly and too fast; she does not understand body language; she spins around and around for longer than normal; and she experiences tantrums as a teenager — to name a few of the qualities that label her as different. Those of us with children with neurodevelopmental disorders are all too familiar with these and other “non-typical” behaviors. Our children are mocked, shunned, and left out of “normal” childhood life.

Those were not, however, the Temple qualities that I saw. Temple is certainly not less, as her mother believed; she is more. So much more. She excelled in science, going on to college and a very successful career in animal behavior. Temple’s innovations in animal farming, which encourage the humane treatment of cattle, are currently used in more than half the US beef farms. She is a professor at a university, has a consulting business, has written eight books (so far), and lectures about autism. And, perhaps most important to parents of children with neurodevelopment disorders, Temple lives a totally independent life. Temple is clearly a productive member of society, who happens to have autism. How did that happen? After watching the HBO movie and throwing out all my tissues, I searched for presentations about autism by Temple. Here are the keys that  Temple believes contributed to her success while living with, not suffering from, autism.

• Turn-taking. To encourage sharing and living in the real world, Temple’s mother hired a nanny who played turn-taking games with her and her sister as a young child.
• Speech therapy. Though a medical doctor said that Temple would never speak, her mother refused to believe that sentence. Like Helen Keller’s Annie Sullivan, Temple praises her wonderful speech teacher.
• Nutrition. In her book Developing Talents, Temple says that she has noticed that people on the autism spectrum who are successful at work followed special diets, took nutritional supplements or medication, or used other treatments.
• Manners. Temple was taught table manners. Bad behavior was not allowed at the table. No stimming. No eating with your hands. No talking with your mouth full.
• Respect. Temple was taught to greet people. No rude comments. She was expected to adhere to the rules of  genteel society.
• Responsibility. Temple had chores that she had to do every day. This was required because she was part of a household. Everyone in the family pitches in to help one another.
• Outdoor time. Temple was encouraged to play and explore outside. Temple bemoans the amount of time that today’s youth spend inside watching television or using computers.
• Self-care. Temple was required to take care of her personal appearance. No dirty clothes, unkempt hair, or unbrushed teeth.
• Independence. First, Temple’s mother arranged for her daughter to spend two weeks, which turned into a summer, at her aunt’s ranch. Then, though it was difficult for both of them, Temple attended boarding school.
• Skill building. Temple took classes like shop and home economics in school. Her mother bought her a play sewing machine on which she made costumes for her school play.
• Job preparation. Temple’s mother arranged for her to work (for money) for a friend who was a seamstress when she was 13.
• Mentors. Temple learned to sell her skills and ability before she sold herself, garnering mentors at crucial points in her life. Temple’s most important mentor was her high school science teacher, who encouraged her to attend college. Along the way, Temple found people who saw her strengths.

These are guidelines that parents should apply to all children, not only those with special needs. Neurotypical children usually learn turn-taking by osmosis in kindergarten. They often learn manners by mimicking the adults around them. At about puberty or sometimes earlier, they care about their personal appearance. Children with ASD (autism spectrum disorders), however, need direct instruction for many things that happen naturally for other children. Turn-taking, speech therapy, nutrition, manners, respect — Isabella is okay on all those fronts. Responsibility, outdoor time, and self-care definitely require more work.

Temple has reminded me that I need to raise my expectations for Isabella. She needs to clean up after herself and keep her half of the girls’ bedroom clean (her sister would be much happier). This will require me to make sure that it happens, breaking down cleaning into doable tasks. That means daily monitoring by me. She needs to spend more time outdoors or engage in more energy-expending activities, which means that I have to do this with her. Self-care, well, that’s not so easy. Isabella often uses too much shampoo, doesn’t rinse out the conditioner thoroughly, forgets deodorant, hates to brush her hair, and puts on clothing backwards. We’re working on the self-care portion and have a long way to go. I’m open to suggestions.

The next three keys to Temple’s success (and probably all children) are much more elusive for Isabella. We’re working on independence. She has walked to the store and the mailbox, crossing one street with a stop sign, by herself several times. Isabella has friends who go away to sleep away camp. I have rationalized that I never even sent my other, non-ASD kids to camp. A wise school director pointed out that my other children don’t need the experience that time away from the family garners. I get it, but I’m just not there yet. Funny thing, Isabella is begging us to go to sleep away camp this summer. There’s one not far from my father’s country home. I could move up there for the summer to be closer to Isabella…just in case.

Santa: is he still coming?

When my older daughter was 10 (I’m guessing), she said, “Mommy, I have something to ask you. I want you to tell me the truth.” Okay. “Is there any such thing as Santa Claus?” I answered her truthfully. Her response, “You’re lying.” Once again I am faced with a child and the reality of Santa. But the difference is that this child, Isabella, still believes in Santa. She’s 13. She needs to be told. Many children with learning challenges are exceptionally gullible. Often adults need to step in to set things right. No parent wants to see her child being taken advantage of. It really stings. So one day in the car recently Isabella mentioned something about Santa. I just came out and told her. She took it well. She didn’t say that I was lying. A few days later she mentioned Santa again. I reminded her about the truth. Yes, she remembered our conversation, but she was worried. Would she still receive presents under the tree if there was no Santa. Ah, perhaps the reason why some children believe for so long. Now that’s thinking!

Leaving home for more than an errand

A 13-year-old (same age as Isabella) boy with Asperger’s left school and rode the subway — for 11 days. Just writing the sentence makes my heart sink. He was reprimanded in school and did not want to deal with further scolding at home, so he rode the subway until a transit worker spotted him. All parents worry about their children getting abducted, thanks to all the publicized incidents since Ethan Patz in Greenwich Village. I remember seeing his image on milk cartons. Parents of children with development disabilities have much greater worries. We worry that our kids will get distracted and watch something in a store window instead of coming home. We worry that out kids will forget the way home. We worry that our kids will decide that they want to go to the park instead of coming home. So we don’t send them out alone. How long can we do that? At some point, children need to become independent.