Category Archives: independence

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.


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.

Do we ever know?

Excuse this delayed post. It happened at the time by hard drive crashed and the fixers at an unnamed repair store were serving me in a smug way. So I forgot about the incident until a recent visit to the Johnson & Johnson — a friend’s boat (no relation to anyone with money, just mold).

While cruising in the Great South Bay, Isabella jumped off the boat into a very strong current. To be fair, the captain had already jumped in the water for some reason. You never question the captain, especially this one. To test the current? To cool off? To take a whiz? He did say that Isabella should not jump in, though she was poised with a properly-fitting vest on the dive deck or whatever it’s called. I definitely said not to jump. And it happened — she jumped. Several people screamed. And then I jumped.

Isabella and I were quickly swept away by the current. The boat was not as close as I would have liked. It was still light out, so that was good. At some point, though it was later, my husband jumped in the water. Because he is about twice my size, he was taken by the current much more quickly, rendering him useless in his effort to join us in the water. (On a positive note, the water was lovely.) Someone on the boat threw us a rope with nothing attached to it. Swimming back to the boat was not an an option. Eventually someone on the boat (probably a woman) drove the boat and picked us up.

Of course, Isabella had no clue that she caused several adults to become quite frightened. The captain and the first mate (his wife, my BFF) were unusually quite — until he asked what was going to happen to Isabella? No one had ever asked me that question. I had asked myself the question often, but hearing it from a friend who knew me for a very long time was different.

I don’t know what’s going to happen. Do we ever?

Just a comment

Over the years, people (mostly friends) have made comments about Isabella. Most of the comments were not solicited and those that I am writing about were all unwelcomed. For example, years ago when Isabella was about 4-years-old, her speech-langauge pathologist (who Isabella still sees) referred to Isabella as “special ed.” What was she talking about? Yes, Isabella received private speech, occupational, and physical therapy, but she wasn’t even a student yet. Or was she? It took that comment to make me realize that I may need to consider an alternative school setting for Zachary’s twin sister. It took me about 4 more years to take action as a result of that comment.

My response is, thankfully, is not always that delayed. More recently a special needs camp director (who my mother worked with in Brooklyn) remarked that perhaps Isabella’s hair should be shorter so she could care for it herself. I did want Isabella to be more independent, but her hair was so beautiful. Her hair stylist, who is a friend of mine, resisted cutting her hair. We left the salon with a trim as Isabella’s stunning locks tangled in the breeze. I said that I’d give it a week to see how are moving went. By day 3, I called the salon.

Though it was probably more about my morning sanity than it was about Isabella’s independence. I couldn’t take it. Isabella’s fine hair ended up as a clump in the back of  her head every morning. Some mornings, I threatened a scissor, but never did it, fearing that child welfare might ring my bell. Also, and this was at the core of not wanting to cut Isabella’s hair, her hair is exquisite. It’s the kind of hair that people notice — rich color, shiny, and with a beautiful bounce. Unlike the other girls in own home, Isabella does not have a single bit of frizz. She never has a bad hair day.

And there was something else that I was thinking. Most women with developmental disabilities have short hair…and it’s not styled well. It makes them look, well, disabled. I was afraid of that. That didn’t happen. People still remark about Isabella’s spectacular hair…and as an added bonus, she cares for it completely by herself. The scissors are in the drawer and I’m happy every morning.

Roots & wings

It has been awhile…hasn’t it? Way too long. A lot has happened in my life (you can check for that update if you’re so inclined) and in Isabella’s, too. She’s doing something that I never imagined that I’d allow. She’s at camp…overnight…as in sleep-away. Growing up in Brooklyn, we always knew kids who went to camp — some for the entire summer. I went went to Girl Scout camp once when I was 10, so my BBF Joanne and I could be with the Dilworth sisters who had just moved from Brooklyn to Connecticut. That was an abberation in our lives (Joanne’s too), but I do remember having good time.

The director of Isabella’s school had been mentioning camp for Isabella for the last several years. I just couldn’t wrap my head around it. My response was always, “We’re not a camp family” and “We don’t even send our other kids to camp.” Well, those statements are true. Suddenly, things changed or morphed or evoled. Or maybe, I let go. Here’sthe sequence of events. Isabella’s older sister was leaving for 4 weeks and I was worried about Isabella being without her. (Obviously, I know that’s going to happen someday…soon, in fact.) At the same time, we realized that Isabella was not as independent with basic ADLs (aka: activities of daily living) as she needed to be. We were holding her back. She certainly had roots…probably a bit too deep in the ground. Isabella definitely knows about her connection to her family. Wings…not so much. There wasn’t much flying going on. That was for sure. Victoria most definitely has the roots & wings thing happening and so does Isabella’s twin brother Zachary.

The time had come…for me to let go. We had heard about a program at Frost Valley, a YMCA camp in upstate NY, that has a program called MAC, which stands for Mainstreaming at Camp. Two of Isabella’s classmates had attended for several years. And we kept hearing abaout Frost Valley. Some of Victoria’s classmates had attended the non-MAC resisdential portion of the camp. Could I finally send my twins to a place together, but separately? (Sorta like going to different high schools together. Remember that?) This was sounding more and more appealing.

We did it! Or rather, she did it. Isabella is right now, at this very moment, at sleep-away camp and so his her twin brother Zachary. And we have zero communication with them. So, I sent Isabella to camp for 2 weeks and I cannot be in touch with her the entire time. I’d say that I’ve grown up…

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.”

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.