Stuck on the Bridge

It was a beautiful Friday evening at the end of August, and Marisa had a good reason to be happy! We were on our way to Manhattan to see Bring It On, a Broadway show Marisa had requested. The show was scheduled for 8 PM, so we left home at 5:30, planning to meet Marisa's sister, Shoshana, at a restaurant near the theater. There was no reason to believe that anything would go wrong. The sky was clear, and the traffic on the Long Island Expressway was moving well.

We were traveling along keeping a steady pace, keeping on schedule. All was going well till we approached the 59th Street bridge, when everything came to a sudden halt. We had a 6:30 restaurant reservation. It was 6 PM.

If we don't start moving, all hell will break loose! I was thinking. Needless to say, my husband was probably having the same thought.

"Look! We're moving!" We were inching forward, but I tried to sound optimistic.

"I don't want to be late! I don't want to eat late!" was Marisa's reply.

"We won't. Don't worry! We have 30 minutes to get off the bridge and make it to the restaurant," I reminded her.

The clock advanced to 6:20 and we weren't even over the East River yet.

"I don't want to be late. I'll eat fast! I'll eat fast!" Marisa pleaded, anger and desperation in her voice.

At 6:25 I called Shoshana to let her know we were going to be late.  Fifteen minutes later we were still on the bridge but had advanced over the East River. I called Shoshana and told her to enjoy her dinner without us. "I'm so sorry," I said. Marisa was not happy to hear this, as she continued to complain about arriving at the restaurant late.

Finally we were approaching the end of the bridge and could see that things were not moving any better. The intersection off the bridge was totally blocked by cars going against the light. There was constant honking and total disregard for the traffic lights. So, it appeared, here was the source of the problem. No accident had caused the delay. No broken traffic light had caused the delay. It was simply a disregard for traffic signals ... a desperation of people eager to get out of the city. Odd as it seemed, who would think that things could be so disorganized due to the approaching Labor Day weekend? Where were the traffic officers?

It was now 7 PM and it didn't take us long to realize that we weren't going to make it to the restaurant at all. We were a mile away, yet weren't able to move. The intersection remained blocked as we sat watching the traffic light change to red more than 5 times.

"Maybe we should eat after the show," Dan announced.

"I hate eating late," Marisa cried out. "I want to eat first. I'll eat fast," she insisted. "I'll eat fast!"

It was 7:30 and we were still in the traffic jam. Would we even make it to the parking garage and get to the show on time?  Dan and I were both becoming anxious at this point. Our car was stuck in the crosswalk, and oddly, people crossing the street were banging on the back of our car.  Marisa, turned to see the pedestrians behind the car. Frightened by the people, and upset about the late hour, she was crying in the back seat. What started as an evening to enjoy had turned into a nightmare!

I called Shoshana. She had finished dinner by herself. I told her to meet us at the theater. I was hopeful as we finally made the turn on to 2nd Avenue. We only had to go some 10 blocks and across to the west side. How difficult could that be? We hadn't taken into account that we could be stuck behind bicycle carriage drivers. It seemed like there was going to be one obstacle after another as Marisa continued to cry out, "I'll eat fast! I'll eat fast!

We approached the parking garage at 7:55. We filed out and Dan received his parking stub from the attendant. Then we started to race for the theater.

Dan noticed a pizza place and asked Marisa, "Do you want a slice of pizza?" I thought, Is eating more important than getting to the show on time? Surely, Marisa must realize this?

"I'll eat later!" she replied with confidence and certainty that she had made the right decision.

My heart leaped as Dan and I looked at each other realizing that Marisa had thought it through and had come to a wise decision all by herself. There was an affirmation that with age comes wisdom, even for our daughter with special needs. We couldn't have been more proud!

A New Summer!

It's been a while since I've written on this blog. That's because Marisa has been so sad all year about not going back to camp for her 9th summer. In fact she was hoping to go back next year too, so she could celebrate her 10th anniversary at Camp Northwood. Unfortunately, that will not happen, because Marisa has aged out of camp.This does happen to all our children. It even happened to many of us if we were lucky enough to even be campers once upon a time. But it's the 10th anniversary thing that sets Marisa apart from the typical kid who's just sad about not going back to camp.

"I missed out going when I was 12," Marisa said so many times this past year. "I wasn't ready at 12."

That was true. Marisa wasn't ready to go to sleep away camp, because we weren't sure that her behavior would be controlled enough for her to have a successful summer. So we waited till she was 14. Now Marisa is 22 and she will tell anyone who asks that she missed her 10 year anniversary at Camp Northwood, because she wasn't ready at 12.

So this year has been a true transition year for Marisa. She graduated from school last June and has had a full year out of the school setting. Don't get me wrong. It has been a spectacular year! Marisa has two jobs that she loves, has joined Special Olympics, joined a number of recreation groups where she's made many new friends, continued to pursue her interests in nutrition, exercise and fashion and has joined a gym and taken aerobics on a college campus. All this has been part of her Self Determination Program funded by New York State's Consolidated Supports and Services Program. Marisa has grown by leaps and bounds.

The year came to an end, with our annual birthday celebration for Marisa. She celebrated her 22 birthday with 32 of her friends at our home with a DJ and dinner. But when all was done, she was still sad about missing the approaching day to catch the camp bus in NYC.

What was I to do?

Well, it finally struck me! I don't know why it took me so long to figure this out. So many of our kids are visual and need to be able to see what is ahead of them, rather than just having a verbal reminder of all the wonderful things to come over the next few months.

"That's it!" I said to Marisa on the evening of June 30, the night before the campers were to meet the bus in NYC at 8 AM. "I'm going to list every day of the summer, so you can see what's on the schedule. And for any blank days that remain, you will have to fill in some date or activity."

For some reason, the calendar wasn't having that effect, so then and there I started to write. Marisa stood over me watching with curiosity and anticipation. As I wrote she could see the days were filled ... not just with work but with all the trips that were planned and all the upcoming parties and dates she scheduled with friends. She then took the list and recorded the events on her own calendar in her bedroom.

We also, signed up to view the camp pictures where she would be able to see some of her friends that were still able to attend. She could write to them and print out pictures to send them of themselves at camp.

"Not only will you have an all new summer, but you're also going to be able to continue to work at your jobs and earn your own money," I reminded her.

"I have a new summer!" she finally said with surprise and excitement in her voice.

"It will be an all new adventure," I said, "because each day is going to be different from the last and you have not only 8 trips with your  recreation groups, but trips with your family as well."

Now how can one remain sad, when there's so many things to look forward to! July is almost over now and it's been a joy!

Managing Mood Swings

Marisa was having an unusually bad week. She cried over things from the past ... things she missed doing perhaps a year ago or even 5 years ago. She cried over missing a friend. She cried over missing camp, since she had outgrown it and was not going to return this summer to the warm familiar surroundings she had come to know as her summer place for the past 8 years.

What was I to do! I sympathized and assured her that there were new and exciting things that would replace the familiar, comforting memories of her camp life and all that it entailed. This  included friends and counselors she adored from far away places.

"I want to visit on visiting day!" she would say. "That will make me happy?"

"If you want to travel 5 hours to visit for an afternoon, we can arrange that if it's so important to you," I said. I realized that it didn't pay to make her feel more unhappy than she already was. After all, things could change over time, why not set her mind at ease? Maybe we would visit, but then again, maybe there would be some summer activity in her schedule that would make her want to change her plans to visit camp, and opt for the new activity instead.

There are always reasons for the mood swings Marisa has. At this particular time, I knew that premenstrual hormonal changes most likely played a roll in her turbulent feelings. At times like this I would go to the calendar and help her understand her emotions by pointing out the time of month and explaining to her that some of her sadness was related to that. It often would help her to get her feelings under control. At least there was an explanation for the onset of sadness, but hormonal mood swings could be a big problem out in a public setting.

For example, a month ago Marisa had a tantrum at her dinner club, because she arrived late and didn't get a chance to sit next to the friend she wanted to sit with. Someone else had already claimed the seat. She couldn't control the emotions and frustration she was feeling. She lost control and her anger and disappointment erupted in piercing screams in the restaurant where other patrons were gripped with fear at the scene that erupted. Some might say that people should understand and be accepting of the problems related to people with disabilities such as autism. Still, that doesn't make it okay.

I said to Marisa, "If you want to be able to be out in a public place among other people enjoying a meal, then you have to manage some self control. You can't use the excuse that you have autism. You can't use the excuse that you have PMS either. You need to earn the right to be out there in public enjoying all the things that neuro-typical people do."

When Marisa was little, I helped her manage self control by earning points towards a special reward. It was a strong motivator for her, but now as a young adult, she and I had come to  an agreement. We both agreed she was grown up enough to realize that earning money from her jobs was a strong enough incentive to behave properly at work. Likewise, she agreed that controlling her behavior in public situations was important, if she was to be able to participate in fun activities.

"You lost control and scared everyone in the restaurant including your own dinner friends and the counselor in charge. Now you'll have to work hard to regain their confidence in you," I explained.

I considered the restaurant incident to be a disappointment. It was to Marisa as well. She was sorry for having displayed the outrageous outburst that frightened everyone in the restaurant. But there was more to the incident than disappointment. It was also an opportunity to learn and grow from.

PMS most likely played a role in the tantrum that erupted that day, but it wasn't fully to blame. Marisa had arrived late to the restaurant. She was never happy to be late anywhere. Being late had been my fault. Granted, we need to manage our disappointments. Things don't always go perfect and smoothly, but at least it helped explain the outburst. Nevertheless that didn't excuse it, but it helped to talk it over with Marisa, so that she could better understand the things that contributed to her lack of control and perhaps learn to manage it better next time.

"No matter how bad you feel, and no matter how angry you are, it's never okay to have a tantrum in public. It doesn't solve anything and will only make things worse. You risk losing privileges when you lose control. You're allowed to be disappointed, but have to learn to accept that."

"I'm so sorry!" she said. "I'm not a baby. I can't have a tantrum!"

"Nobody's perfect," I reminded her, "but you can do your part to be the best you can be! Think things out, remembering that there are always consequences for what you do. Tantrums are never the solution to a problem."

"I'll try harder next time!" was her response.

I hoped that talking about the incident helped prepare her for the next disappointment she might be faced with. Learning to accept the good and bad in life makes us all stronger for having the experience. When Marisa is faced with another disappointment, I hope she will be better able to accept the challenge and rise to the occasion.

The Benefits of Exercise on Improving Brain Function

Over the past 3 years, Marisa has become extremely interested in exercising to improve her appearance. She does weight lifting and circuit training by changing up her routine. She does an aerobic workout by running on the treadmill anywhere from 30 minutes to an hour or she uses the elliptical or stepper. Other days she trains with WII Fit, yoga and pilates. She has numerous DVDs to help her in her routines when doing palates or yoga, and uses equipment at the gym that she doesn't have at home. I have watched her go from a flabby 30 pounds more than she is now, to a very fit and toned young lady. But that's not all I have seen change about her. Although Marisa's goal was to trim down and look as pretty as her older sisters, she has gained more positives than she bargained for. Marisa has become sharp in her thinking, more energetic and quick to get all jobs she engages in done, not just in a timely fashion, but ahead of schedule. I decided to check out any research that shows the benefits of exercise on the brain. What I discovered was not surprising at all, so I'm going to share it with you.

Tara Parker-Pope researches information on Health for The New York Times Well section. November 30, 2011 an article in the Well section by Gretchen Reynold, summarized some interesting findings by various research groups.

In a study done in 2011, scientists in Ireland asked a group of sedentary male college students to take part in a memory test followed by strenuous exercise. At first the group watched a rapid-fire lineup of photos with faces and names of strangers. Then the group was asked to recall as many names as they could by viewing the photos. Then half the group rode a stationary bicycle at an increasingly strenuous pace, while the other half sat for 30 minutes. When both groups again took the test, those who had exercised performed significantly better than they had initially.  Those who had rested for the 30 minutes did not show improvement.

Blood samples taken throughout the experiment offered a biological explanation for the improved performance. After the strenuous activity, the cyclists had much higher levels of a protein known as brain-derived neurotrophic factor (BDNF). BDNF is known to promote the health of nerve cells. The Irish study suggests that the increases in BDNF prompted by exercise most likely played a role in improving memory and recall.

Other studies have shown similar conclusion. A study done by Brazilian scientists, using elderly rats found an increase of BDNF molecules in the rats who ran just 5 minutes a few days a week for 5 weeks.
This group of elderly rats then performed almost as well as much younger rats on rodent memory tests.

A similar animal study performed by researchers in the Brain Injury Research Center at the University of California, Los Angeles, and published in the journal Neuroscience, also showed increases in BDNF molecules among adult rats allowed to run at will for a week.

Another study involving aging human pilots was published in the journal Translational Psychiatry. Scientists at Stanford University School of Medicine asked 144 experienced pilots between the ages of 40 and 65 to operate a cockpit simulator three separate times over the course of two years. For all, performance declined as the years passed. A similar decline with age is common in all of us. Dr. Ahmad Salehi, an associate professor of psychiatry and behavioral sciences at Stanford was a lead author of the study. He found that the decline was especially striking among one particular group of men. This group carried a common genetic variation that is believed to reduce BDNF activity in their brains. What was discovered is that the men with a genetic tendency toward lover BDNF levels seemed to lose their ability to perform complicated tasks at almost double the rate of the men without the variation.

Even though this study wasn't an exercise study, it makes us wonder if strenuous exercise could slow cognitive declines by raising BDNF levels, and help improve our ability to perform skilled tasks for a longer time into our senior years. Dr. Salehi points out, "Though other growth factors and body chemicals are 'upregulated' by exercise, BDNF holds the most promise. The one factor that shows the fastest, most consistent and greatest response is BDNF. It seems to be key to maintaining not just memory but skilled performance."

It was noted that Dr. Salehi plans to examine the exercise histories of the pilots, to see whether those with the gene variant respond differently to workouts.

In every study so far,  the evidence shows that physical activity will increase BDNF levels and improve cognitive health. If this doesn't have you convinced then check out the below benefits of exercise that are sure to jump start us all.

"Exercise is the single best thing you can do for your brain in terms of mood, memory, and learning," says Harvard Medical School psychiatrist John Ratey, author of the book, Spark: The Revolutionary New Science of Exercise and the Brain."

Here are 7 benefits of exercise written up in US News and World Report by Deborah Kotz and Angela Haupt.

1. Exercise reverses the effects of stress, by increasing levels of soothing brain chemicals like serotonin, dopamine, and norepinephrine. Exercise also will work on a cellular level to reverse stress's toll on our aging process, according to a 2010 study from the University of California in San Francisco.
2. Exercise lifts depression. Research suggests that burning off 350 calories three times a week through sustained, sweat-inducing activity can reduce symptoms of depression about as effectively as antidepressants. This may be because exercise appears to stimulate the growth of neurons in certain brain regions damaged by depression.
3. Exercise improves learning. It increases the level of brain chemicals called growth factors, which help make new brain cells and establish new connections between brain cells to help us learn. Activities like tennis and dance classes, which require more thought, provide the biggest brain boost.
4. Exercise builds self-esteem. Seeing fitness improvements like running a faster mile or lifting more weights than previously, can improve your body image.
5. Exercise leaves you feeling euphoric. Sprint bursts through interval training seems to be the most effective.
6. Exercise keeps the brain fit. "In a 2011 study published in the Archives of Internal Medicine, Canadian researchers analyzed the energy expenditure and cognitive functioning of elderly adults over the course of two to five years. The most active participants scored significantly better on tests of cognitive function, and they showed the least amount of cognitive decline."
7. Exercise keeps Alzheimer's at bay. "The Alzheimer's Research Center touts exercise as one of the best weapons against the disease. Exercise appears to protect the hippocampus, which governs memory and spatial navigation, and is one of the first brain regions to succumb to Alzheimer's-related damage."

So keeping ourselves and our kids moving is a no brainer, but the trick will be finding those activities that are most enjoyable for each individual and making them part of our daily activities. That is the best we can do to make sure our brains stay healthy and at an optimal level. And for our special needs kids, this would provide every advantage toward improving their physical well being and bringing their cognitive ability up to their optimal level!

Helpful Supports for Parents of Children on the Autism Spectrum

Recently I received a comment from Healthism Blog, informing me that my blog was selected to be among a group of most inspiring blogs on autism. I was honored by this news!  Here is a link to the list of the blogs selected, that many of you might enjoy reviewing. Also, is a link to a post that will be helpful to parents preparing their children on the spectrum for a college experience. By the way, this is also good advice for parents of neuro-typical kids. And lastly, is a link to a post with tips from a teacher. This offers advice to those having students on the spectrum in their classroom.

http://blog.healthism.com/post/20520919101/parent-blogs-of-children-with-autism 

http://blog.healthism.com/post/20836865415/how-to-prepare-your-child-with-autism-for-college 

http://blog.healthism.com/post/20461553402/teachers-guide-for-children-with-autism

The French Toast Nightmare

Lately, I've been writing such wonderful little stories about Marisa. I'm almost left with feelings of guilt that I'm not writing so much about the difficulties I have with my daughter due to her autism. So here's a story that is a reminder that all is not always well and perfect in my house. Autism is very much still with Marisa, just under the surface, ready to spring forth at any moment when something isn't going quite as she would hope for.

Deep in an early morning sleep, I could hear a high pitched song. Then rapid phrases follow in a disguised voice from some past time. Then its repeated over and over. The high pitched song ... the rapid phrases ... the high pitched song ... the rapid phrases repeated again in that disguised voice that is not Marisa's sweet voice.  And I thought, It's happening!

I bolted upright out of the comfort of my dream with the realization that something had to be going terribly wrong in the kitchen. Marisa was up at the crack of dawn every morning, and always followed the same routine. She would dress and then come to the kitchen to prepare her breakfast. But every day is a different breakfast, and I knew that this day she prepared a french toast that wasn't quite right when she made it last night. Marisa wanted to prepare french toast following a recipe she found in one of her magazines. I was busy at the time, so I didn't get to see the ingredients she put together, but later when I looked at the large bowl of liquid she prepared to dip the toast in, I knew something was wrong.

"What's in here? It looks like too much liquid for just 2 pieces of bread?" I asked.

Marisa showed me the recipe, which I felt was strange, because there was 2/3 of a cup of milk for just one egg.

"I think it's a typographical error," I said, "but we'll try it and see how it turns out." I didn't want to disappoint Marisa or toss the ingredients and make her feel bad, so I let her put butter in the pan and proceed to fry the toast. It wasn't going well at all, but she persevered and managed to salvage the 2 slices of wet, soggy toast. I helped by scrubbing the pan clean.

So this morning I knew the toast was soggy, but it was already prepared. The only thing left to do was heat it up. HEAT IT UP!!!  OH NO! I knew what had happened before I even got to the kitchen. She had to have put the soggy french toast into the toaster instead of the microwave. Recently, I had told Marisa to warm waffles in the toaster instead of the microwave because the toaster would keep them crisp, whereas the microwave would make them soggy. Come to think of it, Marisa's idea of crisping the soggy french toast in the toaster was not such a bad idea at all! However she wasn't prepared for what would happen if she placed WET french toast in the toaster.

As I arrived in the kitchen, my biggest fear has been confirmed. The french toast was in the toaster. It fell to wet pieces, much of it sticking to the inside of the toaster. Marisa was doing an anger dance and gritting her teeth at me. Then she just started to scream at the top of her lungs ... a scream that was piercing and a reminder to me that Marisa was so disturbed by her spoiled french toast that she just couldn't handle it.

"I need to do it over!" she yelled in between screams and her continued crying.

"Okay, we will!" I answered. I knew that if we didn't do it over, her day would surely be a disaster from this point on. There was no settling for a bowl of cereal once she had her heart set on french toast. And why not redo the toast? It was only 7 AM and she didn't have to leave the house for work until 9:30. This was not a problem at all, and it even left room for a lesson in preparing easy french toast.

"All you need is an egg, a drop of milk and some vanilla. You don't even need a recipe, and you don't have to measure either," I said.

Together we made the new french toast, and Marisa went to work happy.

Later when she returned with her support staff, I mentioned how the day almost turned into a disaster.

"Oh she told us at work all about the french toast, and said she would NEVER make it again," Christina, Marisa's support staff informed me.

It was refreshing to hear that Marisa was able to talk about the french toast disaster, but I wasn't satisfied to learn that she felt bad enough to decide not to ever make french toast again. After all, we had redone it together and it turned out just fine!

"Marisa, there was an error in the recipe. It wasn't your fault. We all learn from our mistakes, so we can make corrections for next time."

And there will be a next time for Marisa to make french toast on her own. Only this time, I'll be right there to watch and make sure it's going well, so that the memory of the french toast nightmare will be erased and replaced with the knowledge that it can be done successfully. If we want our special needs children and young adults to learn and continue to grow, then the word never should not be an option.

A Wish Come True

Marisa's been pushing the limit on requests for special events. A few months ago she requested to see the show The Fantastics.

"Why do you want to see that particular show?" I had asked.

"Aaron Carter is in it!" was her quick reply.

I'm not too up on all the young celebrities, so I asked who he was.

"Oh, he's a singer and the younger brother of Nick Carter from Backstreet Boys."

Okay, so at least her urgency to see this show made more sense to me.

Shoshana, Marisa's older sister, purchased tickets for the four of us. Marisa was delighted!

"I have to get Aaron Carter's autograph!" she announced in an extra exuberant voice when she heard that we were actually going to see the show.

Oh no, I thought. She's going to be so disappointed when we don't hang out at the back door to the theater waiting in freezing temperatures for the stars to exit.

 "It would really be so hard to wait in crowds of people for an autograph. Who knows how long that will take?" I said.

"I don't care," was her quick response. She was so determined.

The special day had arrived. Delight and excitement was written all over Marisa's face. We arrived at the theater 30 minutes early. The Snapple Theater in NYC is a small theater. We were able to sit and wait in the lobby till the audience was able to enter. As we sat, Marisa grew more and more excited about the event and was talking about waiting for Aaron Carter's autograph after the performance. We kept telling her it was going to be difficult. Not willing to accept that, Marisa took the initiative to ask an usher how she could get an autograph. The usher told her that the stars would come out to the lobby to sign autographs after the show. Marisa was delighted and the rest of us were finally put at ease.

Wow, what a break! I thought.

The Fantastics turned out to be a very enjoyable show for all of us. At the end, we filed out in to the lobby to wait with other young people eager for an autograph.

Then the performers started to come out and Marisa waited second in line. She not only got Aaron Carter's autograph, but a hug and 2 pictures as well. She was thrilled! She also was able to ask other stars in the show for their autograph. So with much satisfaction we left the theater, happy that Marisa was able to have her wish come true.

Two days later, while Marisa was at work talking about her experience, she mentioned that she always wanted to see Big Time Rush. They actually performed at Radio City Music Hall the day that we saw The Fantasticks. Then Marisa found out that Big Time Rush was going to perform in August at Jones Beach Theater. Jones Beach Theater has a capacity of 15,000 seats with an additional 5000 general admission lawn seats.  Later that day, Marisa asked if we could attend.  Since this was a group that Marisa's been talking about for a couple of years, we considered it, and thought it would be fun to attend a performance at a summer outdoor theater. Then we decided to purchase tickets!

Marisa was so excited to hear the news, but there was just one problem!

"I'll need to get their autographs!"

"This time it won't be quite so easy to do," I said.

Will Marisa's wish come true, or will the size of the amphitheatre soften her desire when the time comes?

On a more positive note, this could turn out to be a good lesson in realistic expectations, a subject for another post in August.