Bullying

Ben X is a 2007 film made in Belgium about a high school teen with high functioning autism who finds a unique way of dealing with the cruel bullying of his classmates. This film literally kept me glued to my seat, which frankly is unusual since I tend to fall asleep within the first 30 minutes of sitting down in front of most movies. 

The film brings to light the impact that bullying has on those who experience it. Watching repeated bullying incidents in the film is very painful, but what's amazing about this story is watching Ben find a way to enlighten those around him and not just find his way through a most difficult situation, but come to realize that it is okay to be the person he was born to be.

This film made me pause and think about our children in the mainstream setting. How difficult life must be for them not just having to deal with their school work but, because of their autism, the social struggle to fit in with their peers. Think of the anxiety that must be present for these students. For my own daughter this was not a concern, because she attended a school for special needs and was equal and happy among her peers.

But for mainstream educators the focus is on academics and encouraging their students to get the grades needed to go on to college. In so doing, very little is done to accommodate the social needs of those on the autism spectrum. Many schools offer counseling for students on the spectrum who need help navigating the social pressures around them, but what kind of counseling is required of neuro-typical kids when it comes to understanding those with autism?

In order to promote success among those on the spectrum, we need to educate the general population about what it means to have autism and how to be more understanding and accepting of this population. Those with autism must learn to get along in a neuro-typical world, but life would be better for everyone if the neuro-typical population were better informed and aware of the difficulties that people with autism are faced with on a daily basis. For example, police who are taught to recognize the difficulties of those living with autism are better prepared to handle a person with autism appropriately rather than having a misunderstood situation get out of hand and possibly end tragically.

So, should we be providing counseling to just those with autism, or should we be counseling all students as part of health education? Educating neuro-typical students about autism and it's difficulties could help ease the way for those that are in the mainstream today, and in so doing, help those that are out in the real world be treated fairly by the better educated population of tomorrow.

Learning to Budget Ones Earnings

This year Marisa will be graduating from school and moving on to life in the adult world. Now what is that supposed to mean? Well it could mean getting a job and learning how to spread one's earnings to cover essential expenses. Such expenses as food, rent, phone, utilities, clothing needs and recreation all must be taken into account.

Up till now Marisa has been living a fairly protected existence. She has learned to earn goal points that she can trade in for things she wants. However, entering the adult world means one has to be able to stretch what is earned in money to cover the cost of the things needed and hopefully still have something left over for special purchases. To help Marisa realize the importance of budgeting her money, we now sit down at the beginning of each month to go over the expenses she has each month. She then has an opportunity to consider how she would like to use her extra money. She may decide to use it or save up for several months toward something extra special.

Early each month we talk about the things that are necessary to pay for and then discuss the things she is interested in purchasing for that month. She may want a new dress for a special occasion or a new pair of pants for her job, but I always remind her to ask herself the following two questions:

1. How much money is left for the month after expenses?

2. If I spend on clothing, will I still have enough reserved for recreational activities I am interested in?

By asking these two questions Marisa is actually budgeting herself in a very simplified way. Rather than buying something on impulse, just because she has a coupon or saw something she liked in a magazine, she is being forced to look at the big picture. The big picture means she has to consider all the activities she has planned for that month. She must take into account whether or not she has enough spending money to cover all costs. If she needs money to pay for a planned activity, it may mean putting off the purchase of that special dress.

Since we have started the routine of checking the month's expenses from the very beginning of each month, I have noticed our trips to the mall have decreased considerably. Marisa still saves her coupons and plans what she would like to purchase but instead of rushing out to buy that special dress right away she stops to ask, "How much money do I have left for this month?" I'll suggest we take a look at her balance, and she may then very well say, "I can wait for another coupon. Let's skip the mall!"

I'm proud of the way Marisa has learned to realize her limits in spending. She loves fashion and will always enjoy shopping for that special outfit, but because she has not had the privilege of unlimited spending, she is beginning to learn the value of saving the money she has for each month. I anticipate that when Marisa does have her first real job, she will develop a true appreciation for her earnings. She will have no trouble budgeting, because she has already come a long way in learning to cover the cost of the things she needs, while still saving up for the things she wants. In essence, she has learned that the challenge of saving can be as rewarding if not more so than that so called special purchase.

Moving Ahead on the Road to Independence

Many years ago, I invested a good 2 years in teaching Marisa how to use her house key to get in to the house after school. This was a slow and steady learning experience that paid off many times over since she fully learned this skill. Every step to achieving this goal took many months of practice.

For example, trusting Marisa enough to walk to the door, rather than stroll off down the street, was the first step. Most parents of young children wait outside for their child's bus. Long past the age when parents are comfortable to have their neuro-typical kids walk from the bus on their own, I was still there to escort Marisa to the house. So letting Marisa walk from the bus to the house on her own was a major first step in this process.

At first, I informed Marisa that I would be watching her from a window inside the house and would come out to meet her and help her with the key. She knew I was expecting her to come to the door, rather than wandering off down the road. For this, she knew she was earning reward points and in so doing, she remained focused.

Then, learning to put the key in the door lock was a step in itself that required her to retrieve it from her safe storage hook in her backpack. Developing the confidence and ability to repeatedly use the key correctly took much longer than it would for most typical children.

Then, once inside the house she needed to learn to turn the alarm off, and then turn it back on and finally make sure the door was locked from the inside. She also needed to remember to return her key to the safe place inside her backpack so it would not get misplaced. Believe it or not, this whole procedure took me two years from beginning to end, when she and I were both fully confident in her ability.

There were times I was late getting home, and Marisa was finally able to use her new skill and prove herself worthy of my trust in her to do the right thing. What a relief it was for me, and what a sense of pride and accomplishment we both felt that she was able to do this on her own. This was not by any means a quick and easy task to accomplish.

Since this has been accomplished, and Marisa is capable of managing on her own for a couple of hours if need be, what next? Well, I realize that since my 91 year old dad has been ill and my mom is in need of help going to see him in the rehabilitation center where he is regaining his ability to move around again after two nasty falls, I know that it is time to help Marisa put some of her interest in cooking to it's practical use.

Thankfully, Marisa is interested in learning to prepare meals and cook for herself. Her interest is so strong, that she has come to plan all our daily meals by selecting nothing short of healthy recipes for dinner. She also has watched me prepare my usual salad each night which involves shredding carrots in the food processor, crushing garlic with a garlic press, slicing red pepper, scallion, cucumber, and avocado by hand, and then finally slicing tomatoes in the food processor after switching the blade from shredder to slicer. Do I think she would  be able to handle this task? You bet I do! Will she be willing to do it if I needed her to help out if I couldn't make it home early enough? There's only one way to find out. It's time to start the slow and steady process of engaging her in the step by step tasks of handling all those vegetables one by one.

So now, each day when I am preparing my dinner salad, Marisa will participate in helping. Of course it would be so much easier for me to just do it myself, but even if it takes longer, because she is listening and practicing the steps alongside me, think of the pride she will feel when she has finally mastered this skill. No matter how long it takes for her to learn, it is one more step on the road to independence.

One day, I may call her at home to say, "I'm going to be late." Then perhaps instead of her asking me,  "When will we have dinner?", she'll be able to say, "I'll get the salad ready, mom!" There will be a true sense of pride and accomplishment for her and and a sense of relief and pride, for me, to know that I have done my job in helping her be less dependent on me and more capable of taking the initiative to care for herself and make a contribution to helping her family through a difficult time.

The Right Incentive Makes All the Difference

"I want my own digital camera!" Marisa said.

"Well then ... you can earn it for points, or save up for it with your weekly allowance," I replied.

Over the next few months Marisa would not spend a penny of her weekly allowance, because she planned to save for her digital camera.

"Why do you need your own, when you could borrow mine?" my husband asked her.

Marisa took pride in the fact that she could save up and wait many months, before she would be able to purchase her very own digital camera. Each week, she would check her balance after she received her allowance.

From the time she was 4 years old, when I first started her on a behavior goal chart, Marisa knew that she could earn points toward a reward of her choice. In the beginning she earned points for small items.  Marisa would earn just 10 points toward a small reward of her choosing. Then, over time she learned to delay her gratification for more valuable things such as a new outfit or a video game. She would count up her points to see how close she was to the 350 points required to receive her special reward ... something she herself had selected. Earning 350 points could take up to a month to earn. For something more costly, the number of points required could be higher. Earning points by following rules, and learning to save a weekly allowance for something special, are both incentives that help teach the importance of planning and saving for the future.

Children are able to learn, from a very young age, that following rules and working on goals such as brushing teeth, wearing a seat belt in the car, sharing toys and learning to say thank you when appropriate, can be enjoyable learning experiences when there are positive reinforcements in place such as a special reward the child can work toward. Older children can work on more sophisticated goals such as learning to answer the phone and take messages, cleaning their room or helping to prepare a meal.Whether it is something they want or something such as a special trip to the mall or a movie, it helps prepare them for being responsible adults.

When Marisa was just beginning to understand the value of earning points toward special rewards, I was criticized by another mother who felt that I was spoiling my young child by rewarding her with gifts.The fact is, those gifts were things Marisa really, really wanted, and because she knew she would be able to earn them, she was motivated to work very hard to earn the points that could then be traded in for her special reward ... a reward earned for a job well done.

The concept of earning is an important one. It gives one a sense of pride to know that they can do a job well if they try. In the real world, we earn money for jobs we are hired to do. We work to pay the bills to support ourselves, and by earning more money, we may even be able to reward ourselves with special things like tickets to a show, new clothing or perhaps save up for a special vacation or even a new home.

Having goals and working to achieve them by earning points or an allowance, helps prepare our children to be independent and responsible. They learn to plan and save and ultimately are rewarded with a sense of accomplishment. Some day they may be lucky enough to earn a salary for a real job and take pride in enjoying the very special reward of being independent and responsible adults.

Are You Looking for A Small Moment to Learn From? Don't Look Too Far ... They're All Around You!

"Good-bye! Have fun! I'll see you later!"

Those were the exact and cheerful words of my daughter, Marisa, as I was walking out the door to pick up some items at the store. Now ...  you may be wondering why she wasn't going with me on this particular shopping excursion. Well, the fact is she has wised up and realized that she could get more done by writing items she needs on my shopping list while she stays home to do her week-end workout. Granted, it would be nice to have her come along and help at the supermarket, but on this particular day she has chosen to stay behind.

So now you must be wondering what exactly is my point here! Well, when I heard the cheerful way Marisa said goodbye, it made me stop to wonder. How did she become so animated and upbeat? I mean, rather than simply saying good-bye, she chose to liven it up by suggesting I have fun. It made me feel really, really good to hear the enthusiasm in her voice.

Then I thought about where that was coming from. I thought about all the time we spend together, and how an enormous amount of time is spent just commenting on things around us. For example, when Marisa was very little, I would spend 10 or 15 minutes waiting outside for her school bus. I would fill the minutes with observations around us.

"Look at the beautiful sky with the puffy clouds! See how the wind is making them move so fast?"

After the rain, I would notice lots of worms on the pavement and remark,

"The worms were washed up from the soil by the rain. Let's help them find their way back to the soil where they will be able to stay alive and keep the grass healthy!" We would then search for twigs together, to help place the worms safely on the grass.

"See the bird with the big belly? She's gathering twigs for a nest!" We would watch the birds frantic search for just the right twigs to put together a nest.

Sometimes while driving home in the evening I would comment on the beautiful peachy, pink and blue sky at sunset and remark about how the sun helps create such beauty as it sets. Other times, late at night, while driving home there might be a spectacular moon to observe, and I might draw Marisa's attention to it.

Walking down a hallway in a busy building, Marisa might brush against a passerby and need to be reminded about being more careful to stay within her own space and to learn to say excuse me when needing to pass someone in her way.

We are all learning every single day, whether we have a disability or not. As we get older we are supposed to become wiser. We learn from our life experiences. So of course our special needs children will become older and wiser too, but we can help them by pointing out the little moments to learn from. There's something to be learned every day and every moment in a day, if we open our eyes and let these moments become moments to learn from.

Our children grow into adulthood. Some will be volunteers at jobs, some will volunteer in day hab programs, and some may have paying jobs. All these experiences will have moments to learn from. Volunteering can make one feel they are doing something useful and helpful for the community. It may also pave the way for a paying job.This can build self esteem and in itself, is a learning experience. Likewise, having a paying job means one needs to be very responsible. There is a commitment to being on time, doing the job right, and staying on task. Over time, one may become so proficient on a job that, perhaps they may then be able to advance to a new level. Why? Because, they have learned they're job well and have been able to prove them self capable. Now that would be a major accomplishment not to mention a boost for ones confidence and self esteem!

So no matter how little your child is able to speak and no matter how little you think they are able to understand ... remember ... none of us are in the position of deciding how far our special needs kids will be able to go. Our job is to assume they understand and share our words and thoughts with them from the time they are very little. Our job is to build their confidence and self-esteem so they are able to dream about and possibly achieve their dreams. And if they don't achieve their dreams, it won't be because we didn't help them try. Just keep dreaming and reaching for the sky. There's no time limit, and there's no expiration on hope! Grab the moments as they go by, and make each one count as an experience to learn from. But remember, if your child is happy with what they are doing, then, in one very important respect, they have already succeeded!

Planning for Life After the School Years End

A very good article was written in NY Metro Parents October 2010 issue. It was:

A Guide to Planning Ahead for Your Child with Special Needs:  Services and Care Options After High School and Beyond by Amber Greviskes

I made a contribution to this very well written article. However, because much of what I wrote was condensed, I have decided to post the information I contributed to the article in it's entirety. It's more than a small moment to learn from but will provide a wealth of information for you and your child's future.

This information is meant to help parents know the steps to take in planning for their special needs child's future. It is a wake-up call. So here it is.

Marisa was diagnosed at 18 months. I vowed from that moment on to do everything I could to ensure that she lead a happy, fulfilling life, long after I am gone.

Time goes by very quickly. I remember many years ago when Marisa was just a toddler, I was watching a video conference by Temple Grandin, the internationally well known person who is classified on the spectrum as Aspergers. She said that parents need to make plans very early. They need to think way ahead because before you know it, the future is here. Think of what your child's strengths are and focus on those.

When Marisa was 4 years old, I took her to a pediatric neurologist who was very knowledgeable in the subject of autism. She gave me some advice that was extremely helpful and has made a tremendous difference in the way Marisa has turned out. She said, "No matter how intelligent your daughter may be, the single most important thing you can do is get her behaviors under control, because that will greatly improve her prognosis." From that moment on, I was determined to set up a working behavior plan that Marisa continues to use today to self-monitor her behaviors. The trick is to pick goals that are achievable,
and offer rewards chosen by the individual. Goals change over time, but the concept remains the same. Marisa earns a certain number of points toward a goal of her choosing. It usually takes her about a month to earn her reward. Of course for a younger child the number of stars or points could be less, because young children may not be able to wait as long for a reward. The idea is to be flexible, and mold the behavior plan to the individual child. A parent once said to me that she thought I was spoiling Marisa by rewarding her with gifts she chose. I said, "Don't we all get rewarded by doing jobs well? Nobody does something for nothing. Most of us get paid for work. That's an incentive and reward after all."

A behavior specialist once asked me, "What are your goals for Marisa's future as an adult?" I thought about it and replied that she would probably live in a group home or a supported apartment because her judgement was poor, but hopefully she would be able to have some kind of job that she would enjoy.
Then he said, "So strive to help Marisa become as independent as she can, so she will be able to get into the best supported living arrangement  possible." I always considered this excellent advice. It has motivated me to keep working on Marisa's ADL (activities of daily living) skills.

It's also important for parents to face up to the fact that they will have to plan, and plan early. While our kids are in school, parents would like to believe all is taken care of. Many parents struggle to get services in regular public school programs. Some have their kids go out of district to special schools. Parents are happy when they get the services they want for their child. Some of these kids will be able to graduate from regular schools with regular diplomas and then go on to college. However, it may be a struggle, because in many cases, social skills have been neglected. The result is that many of these kids will have a hard time navigating the college experience on their own.

Others that are not as academically able, will be able to stay in school till they are 21, because by law they are entitled to a free, public education up till that age. However, upon graduating, all services end. Then parents are faced with a rude awakening. Transition planning is supposed to start at age 14, and it is important that parents insist on this from their school districts. Many parents don't want to think about this, so they put off planning till the last year. This is way to late. And what is transition planning supposed to mean? Many parents don't understand that either. There are a number of things that parents need to do:

Before age 18 they need to legally become their child's guardian because once kids turn 18, they can no longer make decisions for their child without legal guardianship. Health insurance companies won't even talk to you, and if your child can't handle their own medical decisions this could be a major problem.

Most important is establishing eligibility from OPWDD (Office for People With Developmental Disabilities). This requires sending psychological test scores to the OPWDD doctor who reviews the child's scores. Eligibility for services requires IQ be below a certain number. If the score is too high, it's important to have a Vineland Second Edition test done. The Vineland tests adaptive living skill level and establishes if the child actually would need assistance in living, even though they may be very capable academically. Parents need to insist on having the required tests for eligibility of OPWDD services done while their child is still in school. This is part of the schools responsibility and should be considered part of the transition planning. Once the child graduates, any testing becomes the responsibility of the parent.

Also parents should apply for SSI (Supplemental Security Income) when their child turns 18. Actually, they are able to apply before 18, but social security decisions are based on family income before age 18.
After age 18, the parents income is no longer included in the decision, and since the disabled child is entitled to receive SSI, it's a good idea to apply as soon as they are 18 years of age. Also, once SSI is received, Medicaid automatically kicks in. Medicaid is important, not so much for the medical insurance, but for the services that are granted through Medicaid. Parents need Medicaid benefits to receive services from OPWDD. These services include Service Coordination which is important to have in order to navigate programs once the child has aged out of school. Of course, to receive services from OPWDD, one needs to have established eligibility, as I mentioned in the above paragraph.

There are so many resources available to parents today. The Internet makes it easy to find many of these wonderful resources. On Long Island we have AHA which is The Asperger Syndrome and High Functioning Autism Association. They have expanded and grown and have a wonderful on-line newsletter at www.ahany.org. There's also the Cody Center at Stony Brook University in Suffolk County and The Fay J. Lindner Center for Autism n Nassau County. In New York City there is an agency called JOBPATH that helps graduates with disabilities find jobs and helps them have smooth transitions in to the working world. In New York State there are numerous other organizations and agencies to call on for help:

Parent to Parent of NYS at www.parenttoparentnys.org
The Jewish Child Care Association at www.jccany.org
The Long Island Advocacy Center at www.theLIAC.org
There are numerous Jewish Community Centers throughout Long Island and the entire Metropolitan area. The Sid Jacobson JCC, The Plainview JCC and most recently The Oceanside JCC have programs to help children with special needs on Long Island.

The bottom line in tips for parents?
Plan, plan, plan and do it early. It will make your life less stressful and easier when your child is grown and ready to go out into the world. Don't put anything off till later, and face the fact that there's a disability  to deal with. If your child grows up and grows out of the problem, that's great, but most don't grow out of the problem. Autism is a life long disability. Learn to accept, embrace and work with it. Don't turn a blind eye expecting the schools to do all the work. You have to do your part. You'll reap the benefits later if you do, and your child will be there to thank you in their hearts if not in their words.

Teaching Our Special Needs Children How to Handle Awkward Situations

When the phone rang, I answered to find it was the voice of a young man.

"Marisa?"

"No," I answered.

"Is Marisa there?" he asked.

"No, she'll be home at 5:30," I answered. "Who should I say called?"

"Jay," he said.

"What's your last name?" I asked.

"IT! I ... T," he said with a tentative laugh.

"What?"

Then he told me his name, but since I didn't know who he was, I asked him how he knew Marisa.

"Oh, we met at the town dance last Friday night," he said.

The town dance was an event run by our town recreation program for people with special needs, and this particular event was for people ranging in age from 16 and up. I started to wonder why Marisa had given him the house number rather than her own cell phone number she used for her friends at school and camp.

I engaged him in conversation to find out a little more about him. I learned he had a part time job and was no longer in school. Not wanting to make him self conscious, I did not ask his age.

"What else do you do on the days you're not working?" I asked.

"I might have a doctor's appointment or stay at home," he answered.

"Okay," I replied, "I'll tell Marisa you called. Does she have your number?" I asked.

"No," he said, "I only have hers. I want to get to know her better. You know ... ALONE!."

I suddenly got the feeling that something about this was not right. I decided it was time to make something clear.

"As Marisa's mom, I'll tell you that she doesn't go out alone with men," I said.

"I figured you were her mom, so ... don't tell her that she shouldn't see me alone," he said. "Yuh know ... I want to get to know her better ... ALONE!," was his response.

I was surprised by his brazen attitude and started to get the feeling that this young man may not be quite so young.

"You have many opportunities to see her at town functions, but I will tell her you called. Have a good evening!" I said as I ended the call.

When Marisa arrived home, I asked, "Did you give your phone number out to someone named Jay at the dance?"

"He asked me for my phone number," she answered.

"Did you want to give him your number?"

"Not really ... but he asked!"

"That doesn't mean you have to give it out! How old do you think he is?" I asked.

"Oh ... maybe 30 or 35."

"Well, I think it was wise of you to not give him your cell number," I said. "I guess you wanted me to handle this call for you. You know, it seems to me that you were trying to be polite, but you don't have to give your phone number out to someone you don't really feel comfortable with or want to be friends with," I said.

I decided to call the director of the town program to find out who this person was. After placing the call, I was not surprised to find that he was in fact an individual in his forties. This was clearly not someone that a 20 year old girl should be going out with socially.

Not really knowing how to handle the request for her phone number, Marisa made the wisest decision possible for her at the time. She gave out the house phone number, knowing that I would help her handle this sticky situation.

We teach our kids to be polite. How to turn down a request for an inappropriate relationship is something that needs to be talked about. I realized that it was time to give Marisa the options she would need to be able to politely refuse someones advances without hurting their feelings.

I said, "If you don't feel comfortable in a situation, then it's not right for you. Then it's a good idea to respond in a way that is noncommittal, like:


'It's nice to meet you, but I am not dating.' 


or


' I'll see you at the next town function.'

In any event, I'm happy that you realized this situation was not right for you, and since you didn't know what to say, giving out the house phone number was better than giving out your cell number."

"Okay!" she responded.

There will be other awkward situations for Marisa to be faced with as she enters adulthood. I know that only time will tell if she will be able to handle these as they arise. How to be polite without compromising one's own feelings is a tricky and important social skill to learn, not just for those with special needs, but for all of us as well. Hopefully, her experiences coupled with supportive guidance will help her to make safe and wise choices that will eventually become easier as she navigates her way out in to the real world.