Category Archives: Parenting

Visiting Day

Isabella on Visiting Day

Isabella would be at camp for nearly four weeks when visiting day finally arrived. I had prepared for this day practically from the day that she had left for camp. I marked it in my calendar (paper for me). I started a pile of items to bring to her at camp. I pleaded with Victoria’s conservatory to allow her to leave for the weekend, so she could join use on the visit (The answer was no, unfortunately.) I informed Zachary that he would need to awaken before noon the morning of the visit. I had evidently done everything except read “the literature” thoroughly.

The day prior to the visit, which happened to be 115 with the heat index, I journeyed to Rockaway Beach with my BFF Kathleen. Upon arrival, we ate at Rockaway Taco on the boardwalk and then went in the murky water for a dip. It was surprisingly cool under our Marimeko umbrella, so Kathleen took a nap. I scanned my phone and noticed a missed call from a 570 number. Panic ensued — 570 was the area code of Isabella’s camp. I had had a nightmare that I missed visiting day! Was it happening? My head began to spin.

The message went something like this: “Laura, no emergency. You indicated on the form that you would pick up Isabella at 1 pm and she has been waiting for you.” Click. I called. I had not missed visiting day, but we had indicated on the form that we would pick up Isabella at 1 pm. That was an option? Yes, parents have been picking up their children since 10 am. What? The response went something like this: “You obviously did not read the literature.” If it were a Woody Allen movie, the unspoken would say: “Bad mommy.”

I got on the phone and found a hotel nearby. Kathleen and I quickly packed up our gear. I called my husband Stephen and asked him to call the camp to say that we would pick up Isabella at 9 pm. There was an hour wait at the Hudson River crossings to get home to pick up the rest of the family. Then, I accidentally called the camp. The conversation on the camp’s end went something like this: “I already told Isabella that I made a mistake and that you are coming tomorrow. She’s fine and looking forward to the dance tonight. Why bother if all you are going to do is check into a hotel and go to sleep!” (That was a rhetorical question.)  My response: “But I’m not okay.” The camp director: “Well, that’s your problem.” Ouch.

Next stop: a bottle of Prosecco.

The next day, we were the first family to arrive (that has never happened). We waited for Isabella. When she spotted us, she ran down the steps and cried. I cried. I think my husband may have cried, too. We were happy to see one another and had missed each other a lot. She loved camp. She assured us that she could make it another three weeks.

The four of us got in the car and drove to a nearby lake. Though we are an ocean family, we really did not care where we were. We were happy to be with Isabella — even if only for four short hours. (It felt like a generous prison visit, though I have never visited anyone in the joint.) We gave her a choice between a boat ride or dinner. As she is my child, she chose dinner. We sped 30 minutes away to Bar Louis in Milford. It was a lovely afternoon.

After dropping her off at her cabin, we met with the director. At that point, my tail was no longer between my legs. (I had avoided her on the pick-up.) We were planning to pick up Isabella on the last day of camp. I wrote in my calendar. Just in case, I inquired about the date. It was the day before the date that I had written. Um, once again my mother was right — reading the directions is very important.

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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.

It is what it is

I read something very interesting in Psychology Today (it’s like being in Psych 101 again). It was an article about genetic testing — a topic that interests me for several reasons. I learned something unexpected from the article (always a good thing for a jaded person such as myself). Here’s the sentence that got me: “An uncertain future leaves us stranded in an unhappy present with nothing to do but wait.”

That’s what a lot parents who have children with special needs do. Wait. Wait to see what the neurologist says (I can assure you that he or she has no clue). Wait to see what the latest test reveals (good luck interpreting that!). Wait to see what the latest intervention (eg: vision therapy; art therapy; yoga) does (at the very least: makes the parent feel  better). The waiting. It’s non-productive. In fact, according to the author: “Instead of adapting, we get chronically stressed out..” Umm…

This brings me back to what Victoria, Isabella’s sister, has said. It is what it is. Of course, as the parent of a chid with special needs, I am doing everything for Isabella that I believe will help her. At the same time, over the past year (finally, as she is 14 fast approaching 15) I have come to the realization that Isabella is a fantastic kid just the way she is.

I feel released.

The other siblings

Of course, a book with the title Twin appeals to me as a mother of twins. This book is especially pertinent to me. It’s authored by the twin of a disabled (I do not like that term) twin. Um. What does he have to say? The author is Alan Shawn who happens to be the son of the former editor of The New Yorker. Okay, that probably means that the book is well-written.

The book starts by Shawn revealing that his phobias (which are many) are due mostly to the fact that his sister was shipped off to a residential living facility following a summer at camp. He as also inherited a few phobias from his father. (Aren’t all very bright people a bit off?) And he tells us several times that his father had a protracted love affair while he was raising his family. (This fact is not particularly germaine to the what happens to the other sibling theme, though it does make for interesting reading.)

The most poignant part of the book is when the writer’s literary father observes that Mary (the institutionalized twin) is a happier than they are. This is something to think about. It’s the parents who mostly suffer…and the closest in age sibling (according to the book). Parents bemoan the life that they believe that the disabled child ought  to be living. This is very far from the life that the child lives in real life, of course. Hence, the term “bemoan.” The parents are unhappy because they believe that the child is missing out.

The child, however, does not think that she is missing out. She lives in the same lovely home as her siblings. She eats the same nutritious food (and then some) as her siblings. She has relationships with the same relatives. She goes to school and has friends at the school. The school isn’t the same as her twin and only was for a short time in her educational career, but she’s okay with that. In fact, she’s okay with everything.

Once, I asked Victoria if she’s missed having a normal sister relationship with Isabella. Victoria coolly responded how can she miss something that she never had. I quickly pointed out the other sister relationships in her life, such as mine with her aunt. She just looked at me. WTF. I’ve come to believe (or pretend to believe) it is what it is.

For me, the major theme of the book was not be sure to keep your other children in the loop least they end up with the problems. It was each person in the family impacts the other. Zachary, Isabella’s twin, would not who he is  today without living with Isabella. Of course, the twin thing makes her influence on him more intense. Maybe it has something to do with being bathed in the same amniotic fluid or experiencing the exact same moments together in the womb.

You really never know how your kids will end up. In the end, you simply want them to be happy and to be loved.

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.