The Benefits of Being Gainfully Employed

Since Marisa graduated in June of 2011, she has joined a gym where she manages to work out a few times a week, participates in Special Olympics and is employed at 2 jobs that she enjoys immensely. Knowing that young people coming out of school are struggling to find jobs, it is truly a blessing that she is able to be gainfully and happily employed. But the best part about this is that having these jobs has boosted Marisa's confidence and self esteem. It has given her the chance to prove that she is a responsible young adult. She has shown me in numerous ways that she is quite capable of anything she puts her mind to.

For example, walking in to a store with the intention of purchasing a particular item, Marisa will go straight up to a sales associate, pull out a picture of the item she is looking for, and ask where it is in the store. Recently, Marisa's support staff Kathy, informed me that Marisa surprised her with a response to a sales associate in a store. The sales associate told Marisa there were no more of her requested item in stock. Marisa was not satisfied. Why? The sales associate hadn't even gone to look in the stock room. How could she know for sure? Marisa  immediately approached another sales associate and asked her the same question. This sales girl promptly went to check the back stockroom, and to Marisa's delight produced the requested item! How many of us would have been that persistent? We might have felt foolish to approach another sales person in the store. After all, the first one clearly stated that they were out of the item. Perhaps it was intuition on Marisa's part or just sensing that the first sales person couldn't care less or was too busy to help out. I can't be sure what Marisa was thinking. But there is one thing I do know for sure.

Marisa, being employed in a retail store, learned that the customer is supposed to be treated in a friendly, helpful manner. If all customers were treated the way the first sales associate had treated Marisa, the chances are the store would send the customers running. That is something she learned from being employed. She learned that a customer should always be treated courteously and given the time and attention they deserve. After all, without paying customers, the stores would go out of business.

Not only did Kathy notice this polite but persistent approach when out shopping with Marisa, but I noticed it as well. Marisa has become a patient and methodical shopper. If an item is not in stock, she will ask when it is going to come in again, and will check back with the store at the designated date.

I have also seen other benefits as a result of Marisa's employment. Just the other day I was headed in to my laundry room to take the bath towels out of the drier. But there they were, already folded neatly on the counter. How did that happen? When did I fold these? I have no memory of doing this, but they're folded exactly the way I would fold them! I thought. Then it occurred to me that perhaps Marisa had done it. I decided to ask.

"I folded them because I needed to put my laundry in the drier," she answered.

Why was I not surprised? Marisa had learned to fold clothing so perfectly while working in the clothing store. Of course she was able to fold the towels! It really had become no big deal. Where previously she would have asked me to remove my towels so she could use the drier, she realized it would be quicker and more efficient to just do it herself. Her goal was to get her job done, even if it meant doing some of my job.

Then the other day Marisa and I were preparing one of the new recipes she had given me. There were numerous steps involved in this Spicy Macaroni and Cheese recipe. It wasn't anything like my standard 5 ingredient macaroni and cheese that takes 5 minutes to throw together.

"You have a recreation program in an hour. There's no way you can get this done, eat it and get to the program in time," I said. "Would you like to skip this recipe and eat something quick?"

I expected Marisa to grit her teeth and do an anger dance to express the turmoil in her head. She usually could not accept having to choose between two activities, expecting that somehow she would have to do it all no matter if there wasn't enough time. There was silence now as she was thinking out this problem ... searching for a solution. I waited. Then ...

"I'll skip the program. I don't need to do a holiday craft," she replied. I looked at her as she busied herself at the stove.

"Are you sure?" I asked. "You could go a little late," I suggested.

"That's all right," she answered. "I'll work on the dinner instead."

Pleasantly surprised at the ease with which she made her decision, I thought about how mature she had become. Was it the responsibility of her jobs that had helped her? Was it the ability to problem solve that comes from being in a work environment or was this just normal maturation? I can't say for sure, but one thing is certain. Every working experience in life contributes to growth. Whether it is through a paying job or through volunteering for a worthy cause, there is an intrinsic reward for one's efforts. That reward is knowing that we are all able to be contributing members of the society in which we live. Realizing that in itself is a wonderful thing! May we all continue to learn, be happy and productive in the new year!

Graduation Is Not the End, But the Beginning of Real Learning

Someone once said to me that graduation is the real beginning of life planning for parents of children with disabilities. In a very true sense this is correct. While in school, many parents feel that all is being taken care of. Our kids are in a safe and familiar place and we tend to go about our daily lives, often dismissing what seems to be in the far off future. The problem with this is that the groundwork for graduation needs to be taking place in a transition plan that is supposed to start at age 14, but should really start long before that. It is both the school and parents job to prepare our children for the real world. This can be done by providing responsibilities at home and at school, which will help prepare for a job in the future. Learning to save earned points or an allowance for special items teaches budgeting skills, and providing social experiences helps children learn to get along with others whether at work or at recreational activities.

By the time our children graduate as young adults, sometime between the ages of 18 and 21, there needs to be a plan in place for what comes next. Will it be a continuation into higher education, a vocational school that provides specific skill development toward a career of interest to the individual, employment where one has the opportunity to learn on the job or a day habilitation program? Those going on to a college setting, usually are academically able to do so, but should have some idea of how their course work will help them find the right job placement once school ends. Those in a vocational training program are usually lucky enough to be accepted in to a program where they have a strong interest in a specific skill that can be developed. Others may be lucky enough to find employment doing something they enjoy. This provides such individuals with a sense of accomplishment and improved self-esteem, because they are productively occupied and able to feel the reward of earning their own money. Still others may be best served in a day habilitation program with others they feel socially connected to, where they are able to go out in the community as a group and participate in activities that are planned or decided upon by the group.

Whatever the choice may be, parents should consider if there will be continued growth for their child once out of school. Thinking back to the time when I myself graduated from high school, learning continued on through college, a job as a teacher, in graduate school and then in life itself. Likewise, learning should continue for all individuals regardless of whether there is a disability or not and regardless of whether the individual is in school, a vocational program, at a job or a day habilitation program. The one thing all parents should consider once public schooling ends, is if continued growth is taking place. Every day should be a learning experience, no matter how small or large that experience may be. Ask the question: What did you learn today? If there isn't an answer to that question, then something is wrong. Being able to learn and grow is an entitlement. It should not be something that ends at age 21. We all learn by living and by participating in life itself. That should hold true for our children with disabilities too.

Self Determination, Making Choices and Discovering New Goals

Self Determination is all about making choices. The problem, however, is that not everyone knows what they want to do. But sometimes it's important to just try something new rather than just doing what someone else tells you to do or doing the same old things. How do you know you won't like something if you never get to try it? Just like a new food, its good to try it out. That's one of the reasons the concept of Self Determination and Consolidated Supports and Services is such a wonderful program here in New York. It gives young adults with varying disabilities a chance to choose their own goals, try new things to find out what they might enjoy and ultimately decide how they want to spend their time.

When Marisa first graduated from her school program and decided to use The Office for People With Developmental Disabilities Consolidated Supports and Services Program, she had specific goals in mind. She wanted to take part in Special Olympics, join a gym to exercise regularly, study nutrition and learn to cook healthy meals. She also knew that she wanted a job working with fashion in a clothing store. It did not occur to her that she might enjoy the idea of working on an organic farm. So when the opportunity arose for her to volunteer at SustainAbility, a new non-profit started by another family whose daughter's ultimate dream was to work on an organic farm, I decided to take Marisa over to see it for herself. We visited for a short time and enjoyed walking around with farmer Daley, who showed us the various vegetables that were growing. When Daley asked Marisa about some of the things she liked to do with her time, she quickly responded about how she loved going to the gym.

"Oh ... if you work here you'll get enough of a workout. You won't need to go to the gym on farming days," he remarked with a chuckle in his voice.

We were only there for a short time, but when we left, Marisa was wide-eyed with excitement!

"I want to grow my own vegetables in my garden!" she said.

Not being particularly good at growing a vegetable garden myself, I didn't want to discourage her.

"Helping out on the organic farm is the perfect way for you to learn about farming!"

I hadn't yet realized the close co-relation between the organic farm idea and many of Marisa's already existing interests.

"When can I come back?" she said with animated excitement in her voice!

I planned a one hour visit in her schedule with support staff, Christina, accompanying her. Marisa, back on the farm a week later with weeding gloves and rain boots on, set to work along side Daley. When Marisa was called to leave after an hour, she didn't quite look ready to go, but I felt it was best to take it slow in determining exactly how involved she wanted to become.

A week later Marisa was back on the farm. She was so excited to go! She knew that this was a chance to learn and grow in a new direction. That had a wonderful appeal to her. What's amazing and magical to me is that even though conventional school has ended, a new classroom has begun. It's the classroom of life and all that the world around us has to offer. Yes, school has ended, but every day is still a day to learn and grow. Whether it's learning new skills by pursuing one's choices or learning new skills by trying something new, it's learning and growing with each passing day. Having the chance to make choices ensures that greater learning will take place, because by pursuing activities that one finds interesting, there will be a greater ability to learn.

"Mom, here's a Jalapeno pepper to use in tonight's dinner!" Marisa yelled out when she returned home from the farm. 

That's so nice and we'll use it with the recipe you selected for tonight. And do you want to head for the gym this afternoon?" I asked.

"I had my workout today!" was her surprising answer.

"When?" I asked.

"On the farm!"

We never would have realized that two of Marisa's goals, healthy eating and exercising, would tie in so closely with the farm if she hadn't tried it.

The Job Search

Marisa graduated this past June 2011 and went away to camp for her last season. It was an opportunity for me to finalize the plans for her CSS Self-Determination Program. The Consolidated Supports and Services Program is a New York State program for people with special needs funded by the Office for People With Developmental Disabilities. It is meant to enable those with developmental disabilities to choose their own goals and be able to pursue those goals with support staff.

Camp gave Marisa time to transition away from school life in to the real world, where one will hopefully be able to earn a living, learn to save for a rainy day and someday graduate to living as close to independently as possible. Marisa's goals and dreams summarized in her CSS plan, which was started in October 2010, was finalized by early July. What she wished for was to be involved in Special Olympics, join a gym for regular daily exercise, learn to cook nutritious and healthy meals and obtain a job in retail sales, preferably in women's fashions. She also hoped to be able to attend concerts of her favorite pop star singers and navigate in the community with friends.

Fortunately, for Marisa, Camp Northwood located in Remsen, New York, which she attended for 8 years, has a separate program called The Northwood Center for 24 young adults to learn to live and work as independently as possible. The Northwood Center, for 18 to 21 year olds, consists of 4 homes on the camp grounds. It is a place where 6 young adults live in a home with the support of 2 counselors. They shop for their food, prepare their meals, clean the house, do their laundry and hold jobs on the camp grounds, while also experiencing tours at local merchants to learn how various businesses are run and what kind of jobs might be available to them.

It was the perfect transition for Marisa! When camp ended Marisa came home with mixed feelings. She was scared and sad about both her school and camp years ending, yet hopeful and excited about her future. Fortunately, before school ended, she had obtained a part-time paying job one day a week at a local clothing store where she had trained with her class before graduation. The manager got to know Marisa while she worked in the store with her classmates once a week. Marisa enjoyed the job so much that she had actually approached the manager about work. To her delight she was rewarded with the part time position!

Now back home, Marisa is hoping to find more work. Always trying to fill her time productively, and being a very fashion conscious person, she is eager to earn her own income. She started by listing all the stores that she enjoys shopping at for herself. Self-determination has made it easy for Marisa to get around with the help of her support staff, apply for numerous jobs that she is interested in. With each outing in the community, advocating for herself, she has gained valuable experience in how to approach store managers when applying for a job.

Marisa has been home from camp since August 20. It has been exactly one month since her return, and in this short time I have seen amazing growth already. She has joined the gym of her choice where she goes with support staff a few times a week to exercise regularly. Pam, one of her support staff, also belongs to the gym and is able to exercise along side Marisa, making her feel like she is participating in an activity with a friend. Marisa has also joined Special Olympics and is enjoying participating in the practice sessions scheduled. She attended the Cow Harbor Walk and Run event to raise money for Special Olympics this past Saturday, where she proudly helped carry the Special Olympics banner with her coach. She has also been busy these past 2 weeks visiting many retail stores to fill out job applications, in the hope of adding more hours to her employment schedule.

So what has been accomplished? Having CSS has given Marisa the chance to be out on her own and pursue her dreams of working with fashion and staying fit and healthy. To me this is an invaluable experience, not just because she is advocating for herself, but because she is gaining experience filling out job applications, meeting potential employers, learning how to converse and ask questions about potential jobs all with the support of staff right there by her side to encourage, support and cheer her on with positive reinforcement for her efforts.

Seeing the smile and pride on her face as she walks through the door and announces the days accomplishments after being out on the job search with her support staff, Kathy, is a wonderful feeling.  Will she be rewarded with one of her choice jobs or have the chance to add more hours to the job she already has? Only time will tell. The fact is, having the self-determination supports in place will increase those chances, creating more of an incentive to employers who might otherwise be hesitant to take a chance hiring a person with a developmental disability. And if it doesn't happen this month, there's always next month to follow up on and try again. Nevertheless, the time spent on the search is time well spent. Experiencing the interaction, the application process, the chance to converse and make ones thoughts and feelings known will increase the likelihood that an opportunity will arise. After all, life is  about challenges and Marisa is facing those challenges head on. So I am thinking, Marisa charge ahead and find your dream! We are rooting for you!

Storm Related Assistance from Marisa

Just before Hurricane Irene hit Long Island, Marisa gave me a recipe for Veggie Burrito Salad. This is a healthy recipe she found while reading through her Seventeen Magazine, where she was directed to seventeen.com/salads. Once again, I am considering myself to be an extremely lucky mother! For someone who has spent years helping Marisa learn from small moments in a day, I am now reaping the rewards. Very frequently lately, I find myself being the recipient of a small moment to learn from.

Just last week, as soon as Marisa arrived home from her sleep away camp, she enthusiastically handed me a recipe for a surprisingly simple salad. Okay, I thought, here we go again! Marisa is back to planning lots of healthy meals for our family.

"Write the ingredients on my shopping list," I said.

At the local food store we purchased the ingredients. I didn't really give it much thought, though I could see from the list that the ingredients were indeed going to produce a very nourishing salad. Once at home we started to prepare the salad for that night's dinner. As Marisa and I put the salad together, I began to realize I had lucked out! The salad was coming together very quickly and it was looking amazing! When we finally sat down to eat, our mouths were actually watering from anticipation.

Just before Hurricane Irene hit, we went out to get the ingredients for the Veggie Burrito Salad. I knew it would be the perfect dinner choice, should we be unfortunate enough to lose our electricity. Sure enough we lost power on Sunday morning during the height of the storm. Later that day, as we assembled the salad, I thought how lucky I was to have Marisa selecting easy and healthy recipes for me. So I am going to share this recipe with you. Keep it in mind for the next approaching hurricane, but regardless of hurricane weather, do enjoy this one soon, because I believe it will not disappoint! This recipe was written for 1 serving, but I am re-writing it for 4 servings as we prepared for our family.

Enjoy, and stay tuned for other easy recipes I will post!

Veggie Burrito Salad for 4

One bag of baby spinach
approximately 1 pound can of black beans rinsed
11 ounce can of corn rinsed
1 avocado diced
1 red bell pepper diced
1 green or red onion diced
1 pound cherry tomatoes diced or sliced in half by hand
1 pound crumbled feta cheese
8 tablespoons ranch dressing
Mix all ingredients and serve with tortillas sliced in eighths and toasted on a baking sheet at 350 degrees Fahrenheit.
Enjoy and stay tuned for other easy and healthful recipes!

A Lesson for Caretakers - Compassion Should Go Beyond the Care of A Child With A Disability

I am greatly saddened to learn today, that someone who calls themselves a caretaker of my eldest daughter, Rebecca, felt compelled to write a trashy review on Amazon.com of my book, Finding Marisa. This person, who claims to enjoy working with Rebecca, seems disturbed by the fact that the biography on Marisa's life growing up with autism, does not include Rebecca to any great extent. And because of that, this person, who doesn't even have the courage to identify herself in any way except by calling herself, "Happy," claims that I failed to devote any attention to Rebecca, failed to develop rapport with Rebecca, failed to acknowledge her on the dedication page which included some but not all those in my family who truly were there to help Marisa while she was growing up. I did not, for example include teachers or grandparents on the dedication page. They weren't living in my house dealing with day to day problems and moments of crisis. Nor was Rebecca living in the house, and it's a good thing she was not there. I would have had a major problem juggling the care required by both Rebecca and Marisa, considering that I am not working a shift as "Happy" is. I was a 24/7 day a week parent, as my four daughters were growing up. I was 100% responsible for the care of all my children. I was the cook, the housekeeper, the driver, the person in charge of unexpected trips to the doctor, among other things. I was responsible for all aspects related to my family to the extent that there was no time in a day for down time and rarely time to sleep when Rebecca came to visit.

"Happy" fails to recognize that when a severely disabled person is taken out of their familiar and daily routine and thrust into a different environment for a short period of time, it could be disruptive and confusing, creating problems that one may not have anticipated.

How dare "Happy" use the words "scary monster" as the way she perceived my daughter Rebecca in my story. If that is the way she perceived Rebecca, I don't think she even bothered to read the whole story or maybe she perused it and missed the point. And how dare "Happy" accuse me of being ashamed of Rebecca. She may think she knows Rebecca after working with her for a short time, but she obviously doesn't know me, or she would never say that. Anyone who has ever met me, knows that when I speak of my 4 daughters, I always mention Rebecca first. Not only will I mention Rebecca first, but when commenting on blogs related to autism and other disabilities in regard to group home care, I have mentioned Rebecca numerous times when referring to the wonderful care she receives. Maybe I shouldn't be so generous in complimenting the care Rebecca receives if there is staff among the caretakers who could be so backstabbing of a parent. It makes me wonder. Caretakers working with people with disabilities need to show compassion not only to those they care for, but to the family members as well. Families raising a child with a disability have numerous obstacles to deal with. Obviously, "Happy" has no concept of the complicated dynamics of family life.

Lastly, I must point out that Finding Marisa is a biography of Marisa's life growing up with autism. It's about her life, her difficulties, her obstacles and her achievements. It is not a story about Rebecca's life growing up profoundly disabled. I wish I could say that Rebecca didn't need to be in a group home. I wish I could say that I could bring her home to visit with the rest of the family, but I can't say those things. I know my own limitations, and I know the care that she requires is beyond what I can provide. I accept the fact that she needs the care she receives, and I think that she is happy where she is. At least I hope she is. I visit her and know that she always shows recognition of who I am, but also shows that she is content. Maybe I should say this is a success story. She has her own bedroom. She has the music that she loves. She is cared for. She is happy! Isn't that what we all want?

But I'm not very happy right now, as I'm sure you can tell. Knowing there is someone out there working with my daughter, Rebecca, who thinks she is smart enough to comment on my life and what she feels is my inability to develop a relationship with my daughter, makes me extremely angry. The nerve of this person to be so accusatory and not even identify themselves. Only a coward could behave in such a manner.

P.S. I just want to say at this point that the abusive review of my book has since been removed by amazon.

The Jalapeno Pepper Lesson

It was early evening and Marisa and I were preparing one of her hot and spicy vegetarian stir-fry recipes. This particular recipe called for cumin and cayenne pepper. It did not call for jalapeno peppers, so when Marisa asked if she could cut a jalapeno pepper in to the recipe, I thought it would be a fun experiment that could be toned down with some brown rice if necessary. I did not for a minute think that within an hour, we would be making decisions about whether or not to head for the hospital emergency room.

Marisa did a wonderful job mincing the one very small jalapeno pepper and stirring it in to the almost completed stir-fry on the stove. She had perfected her mincing technique by preparing the family salad each night, and I had no doubt that she was better for this job than I was.

"You really minced that up so fine!" I commented as I thought about my own not so perfect chopping jobs of dinner vegetables. She was clearly much better than I was at doing this.

"Thanks!" she replied as she headed off to do something else for a few minutes. 

"I'll be serving dinner in 5 minutes!" I called out.

When Marisa came back into the kitchen she was rubbing her ear and complaining that she had pain.

That's weird, I thought. She never gets ear infections.

"What is it that you feel?" I asked.

"It burns!" she answered.

"Burns? Well, you happen to have your annual well-check-up tomorrow morning. We'll have to have the doctor take a look," I said.

We sat down to dinner and Marisa was clearly not looking well. Suddenly she was screaming.

"My nose is burning. Give me ice!" She couldn't wait and got up from the table.

I put some chipped ice in a small plastic sandwich bag and handed it to her, not really understanding what was going on. Dan and I were both totally confused as we watched her sitting there eating and holding ice on her nose. By the time she finished dinner I was convinced that the problem was an allergic reaction to the peppers, but she had eaten jalapeno peppers before. Then again, allergies could start at any time.

The screaming and crying continued, as she tried to take her mind off it by checking her e-mail. Dan and I started to wonder if we should drop everything and head to the ER. We realized that the burning ear pain was not an ear infection after all. It was something else that was going on here. Something we had never seen before, and it was scarier than any ailment I had ever encountered in the 33 years I had of raising 4 daughters.

Marisa was still sitting at the computer crying and holding the ice to her nose when she suddenly started to scream that her eyes were burning too. Now she was really hurting and all I wanted to do was hold on to her tightly and make it go away. I was feeling totally helpless as I realized I couldn't help. Do we go to the ER?

"I'm going to go to bed," she cried.

"I'm going to google jalapeno pepper allergy," I announced with a hopeful tone in my voice.

Marisa left the room crying. I headed for the computer and typed jalapeno pepper burning in the google search bar. Up came a link that was hard to believe! It was a link to a blog post entitled jalapeno pepper hands: how to cure the burn at Newly.com

Newley Purnell, a journalist in Bangkok, had written a story about a friend who had burning hands from jalapeno peppers and what happened to him after he went to the ER with the problem. The story was actually quite humorous, as it pointed out how the ER doctors tried everything to help this man and then sent him home in the same condition he had come in. All they had to tell him was to wait it out. I wanted to print the story and read it to Marisa, so she would understand that she was not going to die as she had already decided.

I hit print and then realized that there were 90 pages of other stories to follow. OH NO! How do I cancel this now? Rather than cancel the printing job, I became enthralled by page after page of jalapeno burn stories all caused by not washing ones hands after handling the peppers. I printed out a book of blog posts all from people like me who were searching for answers to the affliction of pain after handling jalapeno peppers.

I rushed down the hall to give Marisa the good news ... that she had a reaction to the oils in the jalapeno peppers. She had not washed her hands after handling the pepper, and once the oil from the pepper gets absorbed in your hands, it causes the burning that can spread from your hands to any other part of your body that you touch.

As I entered her room, Marisa was now crying about burning under her fingernails.

"Good news!" I said as I explained to her what had happened. I read a few of the stories and then told her that she needed to always wash her hands after handling not just poultry, but any food even if it wasn't something sticky. Clearly washing hands with soap and water after handling food, is just as important as washing before handling food. Obviously, there are many adults who didn't know that, since so many had been and will probably continue to be afflicted by this nightmarish situation.

Marisa was in pain, but she was visibly relieved to understand the reason for the pain. Knowing it would eventually go away was a big help emotionally.

"I'm making a poached egg for breakfast!" she announced with a cheery tone in her voice.

"Any pain this morning?" I asked.

"All gone!" she announced.

A new day had come. It was one day smarter for all of us!

Looking for a Happy and Productive Future?

The school year is coming to an end. It's not just the school year, but the school years that are ending for Marisa. What comes next? We are taking a leap of faith into what other hopeful parents before us have done ... putting their faith into the Consolidated Supports and Services Self-Determination program, a program that is meant to develop a Person Centered Plan.  A Person Centered Plan means that all funding of services is to go toward meeting the needs and goals of an individual. Rather than have funds go to an agency running a program with a pre-set agenda for a group of individuals, the funds are specifically set aside for a specific individual to focus on the goals they want to achieve.

Self Determination is a Medicaid funded program in New York State. As such, those seeking services through CSS (Consolidated Supports and Services) must be Medicaid and HCBS (Home & Community Based Waiver) eligible. Self Determination/CSS is a HCBS Waiver funded program that is  available throughout NYS. Hopefully, the positive outcomes of those using the program here in NY, will help other states to recognize and take interest in developing similar programs in their states. This can only help advance the potential of people with developmental disabilities, which will ultimately lead to many more happier, fulfilling lives.

Many of our adult children with developmental disabilities have talents and potential to contribute to society in meaningful ways. Placing these individuals in Day Habilitation programs will not help these individuals grow in ways that are meaningful to them. Being in a group and following along submissively, does not encourage those involved to think for themselves or develop personal skills that are useful to society. There may be some small contribution to helping out in the community, but it is not in a way that was chosen by the individuals involved. Day Hab provides a place for these individuals to be cared for safely during the day while caregivers are working or personally occupied in other ways. There is nothing wrong with this if that is what the person  is happy with or if they truly need to have all their daily activities decided for them.

However, if you have a child who has hidden talents, goals for their future and ideas of how they would like to live their lives, then take note. Think twice before leaping onto the bandwagon of day habilitation care. If you are willing to take the initiative, invest time and effort and commit to your child's adult development and growth, then self-determination is something to consider. As parents, isn't our job to help our children grow into happy and productive adults?

We all dream, but only those who work hard enough to achieve their dreams may actually achieve them. Isn't that what living is supposed to be about? Don't our children with developmental disabilities have that same right? If capable, shouldn't they too be given a chance at deciding their own future? Marisa will have that chance, so stay tuned for updates as we watch Marisa's dreams unfold.

Guiding Your Teenager with Special Needs through the Transition from School to Adult Life

This is the title of a book I read by Mary Korpi, a Licensed Mental Health Counselor (LMHC) and a Vocational Rehabilitation Counselor in Long Island, New York. This book is a wonderful resource for parents. It is full of information on how to guide young adults with developmental disabilities toward a  successful transition into adulthood. Developing autonomy, learning to self-advocate and preparing for the grown-up world of work by building responsibility into your child's routine at an early age and creating incentives and motivation, are all vital aspects of transitioning to adult life. This is all meticulously covered in this well organized book.


From the early years when parents should begin to give a child responsibilities for jobs at home, to the process of transition planning, to the search for programs available once school ends ... it's all here in this very compact book that also includes many other helpful resources for further reading. For parents of newly diagnosed children to those already transitioning out of school, there is something for everyone!

The Happy Shopper

We all know the feeling we get from planning a shopping trip to the mall. Usually we have something in mind that we are looking for ... a new pair of sneakers ... a dress for a special occasion ... new clothing for the upcoming season. Speaking from a woman's point of view, I think I can safely say that most women love shopping. Marisa is no exception. She would happily go out to shop every week-end if I were willing to take her, but since I have been teaching her to budget herself for the month, she has cut back a bit. Recently, she approached me to ask if we could go to the mall. She had cash in her wallet but knew it wouldn't be enough to cover her shopping excursion. I was pleasantly surprised when she asked how much money she had left in her account for the month.

 "Well, that's a good point!" I replied. "Let's take a look!" 

I pulled out the notebook where I have all her monthly expenses recorded and we checked the balance.

"It appears that you have about $150 left for this month, but we're not even halfway through the month. You will need to save some of this money for unexpected expenses. What do you need?" I asked. I then noticed Marisa had a collection of coupons in her hand for various stores.

"I have coupons that are going to expire, so I have to use them this week-end," she answered.

Marisa didn't seem to understand that the coupons were simply a way to get her in the store, even though I had explained this to her numerous times. I mentioned it again, but she seemed to disregard what I said.  She clearly had her own agenda.


There were 5 stores Marisa was planning to look through with very particular ideas of what she wanted to purchase. To be perfectly honest, once she explained what she was going to shop for, I actually felt it made sense to try to use the coupons. For example, she wanted more collared shirts for work, but needed the short sleeve version since the weather was warming up. She had a coupon for the store she was hoping to find this item at. She wanted shoes for the school prom and was planning to check out another store where she had a coupon. Among other items on her list, it all seemed to make sense. We went from one store to another but on this particular day, Marisa was not finding a single item that she felt was right for her. At this point, I was expecting her to start getting frustrated and angry. Odd as it seemed to me, but pleasantly surprised by her calm way of handling one disappointment after another, this didn't happen. After two hours at the mall Marisa had had it.

"Let's go home! I'll throw away these coupons and wait for new ones," she suddenly commented.

"You are so smart today," I said. "That is such a good idea!"

When we arrived home, Marisa took her wallet out of her bag. She opened it to remove the collection of coupons she was storing and tossed them in the garbage.

"Maybe I'll wait," she said. "I have time, and we can go another week-end."

I thought about all the times I had been telling Marisa to space her shopping trips throughout the month, so she would have enough money to last, not just for purchases in stores but for recreational activities like movies or lunch dates. I thought about all the times I had told her that coupons are just a way to get you in to the store, and that there will always be more coupons. Then I realized that something was clearly happening. Marisa was thinking things through. She was learning to delay her gratification. She was learning to make wise choices. She was becoming a wise shopper. My mini lectures were not wasted on her. She had been listening all along. She was ...  growing up!

Is it Possible That There's a Role Reversal?

Back in February 2011 I wrote a post entitled Moving Ahead on the Road to Independence. It didn't occur to me then, that the task of teaching Marisa to prepare salads for our family dinner would be mastered as quickly as it was. Marisa learned to prepare a salad using 8 vegetables. She learned to wash and dry the vegetables, cut by hand and use the food processor to shred and slice others. This is not your ordinary lettuce and tomato salad. It is a favorite combination of vegetables and seasonings that I use to prepare our dinner salad every day. It never occurred to me that Marisa would master this goal completely in less than two months. I am happy and proud to say that she has done just that!

So how is it that Marisa was able to accomplish this goal so quickly I asked myself? Then I decided to ask her that question.

"I'm going to move to my own apartment!" she answered.

I was surprised! But why should I be surprised? Marisa, just like any young person on the brink of adulthood, is eager to assert her independence. She is trying to learn all things necessary to accomplish that goal. And one thing that she should be able to do is prepare her meals. So, preparing a salad may not require oven cooking skills, but it does require some understanding of hygiene in handling food and some knowledge of how to handle knives and a food processor safely.

Then a couple of weeks ago I walked in to the kitchen after completing my treadmill workout. There was Marisa already busy at the kitchen work island. She had assembled the salad bowl, the cutting board and all the ingredients for the preparation of our dinner salad. WOW! I thought. I never even asked!

"That's great Marisa! You've started my salad for me. I'll help you get it done," I said.

What really surprised me was what she said to me in response.

"Mom! Do you like helping me out?"

I looked over at her as she busied herself cutting red pepper into precise 1/2 slices. I was amazed and delighted by her question. This is truly a role reversal! 

"I absolutely do! I love helping you out and watching you do such a super job too!"

I feel blessed and grateful that she is eager and able to learn these skills. Then I thought about all the time and hard work teaching Marisa the skills she needs to help her manage on her own. She really, really wants this. No matter how long, I will share her pride when she is able to accomplish this goal one day. The time and effort will be well worth it for both of us. 

A Trip to the ER

3:50 PM ... just a typical afternoon. I was on the treadmill watching Dr. Oz.  Then the phone rang. Marisa was at her after-school program at the JCC ... or so I thought. I answered the phone. I slowly started to realize that something very different had occurred. The bus company was calling to tell me that Marisa's bus was in an accident.

"Marisa's okay! The bus was rear-ended by a car. The police came. They had Marisa taken to the emergency room at North Shore on Community Drive. That's what they do when these things happen and there isn't a parent around to make the decision. I'm so sorry."

"Oh ... who went with her?" I asked.

"The police had an ambulance take her, so you have to go down to meet her there." Again, "So sorry!"

I got off the phone and called North Shore ER.

"Could you check if she is there?" I asked after explaining what had happened to the man on the other end of the line.

"She's not on the list, so don't come here because she might have been taken to another ER," was his answer.

"No" I said, "I was told she would be coming there. She's probably not there yet, so please let someone know that she has autism and may not give expected answers to questions. This could make the examining doctor think that she has an injury from the accident which might warrant admitting her."

"I understand," he answered.

I was thinking back to the time when Marisa was just 2 years old and had developed a fever. I had scheduled an appointment with her doctor. Unfortunately, since our regular pediatrician was on vacation, she was seen by a covering doctor who was unfamiliar with signs of autism. The doctor, confused by Marisa's extraordinary quiet, decided to admit her to the hospital. He refused to accept my explanation of autism, and the result was a 4 day unnecessary nightmare in the hospital for what turned out to be just a cold. We were finally released when our regular doctor returned. So having been told that Marisa appeared not to have any injuries at the site of the accident, I was worried about how an examining physician might view her in terms of typical behavior to be expected of a 20 year old.

I quickly freshened up and dressed for the half-hour ride to the ER. A number of really bad thoughts were going through my mind:

Was she perhaps really hurt in spite of my being told by the lady at the bus company office, who was not at the scene of the accident, that she was fine?

What if she was taken to a different hospital emergency room?

The bus company late afternoon shift would be coming on soon. If I needed to call them back, they most likely wouldn't know anything about the accident.

If Marisa was taken to another ER other than North Shore, how would I ever know where to go? I would have to drive around from one hospital to another. Would Marisa be smart enough to give the ER my cell phone number?

So as all these thoughts were racing through my mind, I was weaving in and out of early rush hour traffic in an effort to get to the hospital as quickly as possible. Finally I arrived at the ER, and the attendant told me there's no room to park. I must park up the hill at the main hospital. Frustrated and angry, I drove the mile distance to park, and then ran back down to the ER as if in a marathon. I arrived out of breath and approached the main desk at the ER entrance where the receptionist glanced over the list of patients that were brought in. At last she says, "She's in room 40. I'll take you there."

Relieved, I followed her to the nurses station surrounded by numbered cubicles.

"I'm here for Marisa Rubin," I say.

"Oh, I'm the doctor who examined her. She's just fine!" the young physician informed me.

"Was she worried!" I asked.

"No ... she said you were coming."

I was pleasantly surprised to hear that.

Just then from the corner of my eye, I saw a bouncy curly haired girl jumping off an examining table. It was Marisa coming toward me.

"Hi mom! I'm ready to go!" Her enthusiasm and eagerness to escape the confines of the ER were a refreshing relief.

We patiently waited to have insurance information taken and discharge papers signed. Then we were on our way. Out in the sunshine of the late afternoon, we walked the mile up the hill to the car.

"I missed my after-school program," she said with a sad tone in her voice.

"Marisa be happy! You weren't hurt, and you can go home and do something else. Just think, you get to walk a mile and exercise with me right now!" I said, trying to sound upbeat. "And tomorrow you can share your ER experience."

"I'll check e-mail when we get home," she decides.

The events of the afternoon were unnerving to me, but how pleasantly surprised I was to see Marisa having the ability to take it all in stride. She wasn't hurt, but she could have acted out in anger at having been taken to the ER instead of to her fun after-school program. She managed to handle herself in a mature manner, accepting the unfortunate turn of events with understanding and grace.

"How come you were not so worried about being in the ER alone?" I asked.

"I knew you were on your way," she answered with confidence.

As we walked up the hill together a very pleasant thought occurred to me. How far we have come.

Joy Felt in Sharing A Day With Neurotypical Peers

Marisa has a very active social life, but most of her activities are planned with her friends, all of which are either on the autism spectrum or have other developmental disabilities. But this past Sunday, Marisa had a special opportunity to spend some time with neurotypical peers. A very receptive professor at Keuka College who is using my book to help her special education students learn about life for families living with autism and other disabilities, apparently got some of her students interested enough to take this one step further.  For the past couple of years, the professor has been sending me letters written by her students to let me know what they have learned from my book. Her hope is that her students will gain more from expressing what they learned from me, the author, than simply writing a class paper on the subject of autism.

I have found this to be very rewarding because, these college students are able to gain insight from the years I have spent raising a child with autism. Whether they become special education teachers or not, is irrelevant. What is important is that these young adults are gaining an appreciation and a new perspective on what life is like living with a family member having a disability. They are learning by reading a first-person experience, rather than just getting the basics from a textbook approach.

When I first published my book, Isabelle Rapin, a well known neurologist, very knowledgeable about autism, wrote a wonderful review of Finding Marisa in The Journal for Autism and Developmental Disorders (2007) 37:2024-2025 issue.

She said, "I hope the professionals who take the time to read the book will recommend it widely to the parents of the children they care for because I believe it will be useful to parents and professionals alike."

I have helped Marisa, my daughter with autism, grow to be the best person she can be, while at the same time being happy with who she is. To me this is a most valuable accomplishment because, when one truly believes in oneself, there is a better chance that others will believe in them too. That being the case, I trust that with good supports in place, Marisa will be successful at whatever she chooses to do.

So when I received an e-mail from a student attending Keuka College, whose home is relatively close to ours, I was absolutely stunned! She and another student were requesting to come and meet Marisa. Marisa was so excited that she set out immediately planning the day. There would be an opportunity to share and play her Wii games, share the DVD copies of the shows she had main roles in (The Little Mermaid and Mary Poppins), prepare a dessert and perhaps play Uno and Scrabble, both favorites of hers. She also shared some picture albums and some of her favorite Facebook games. It was a magical day for Marisa! I have to say it had to have been the very first time she actually had two neurotypical girls over for a fun afternoon.

Was this a valuable experience for the students, Briana and Alex, both Sophomores at Keuka College, who spent a good 4 hours with Marisa?  I think it was. Although Marisa was able to take charge of numerous games, prepare and serve a dessert and share her picture albums, there is still one very important fact that clearly set her apart. Marisa's autism made it difficult for her to hold an extended conversation. The give and take and natural flow of ideas expressed openly to another, is one area that poses a great challenge to someone with autism, and though there are many things Marisa is able to do well, this is not one of them.

For Briana and Alex, who were happy to have the opportunity to share an afternoon with Marisa, there had to be an appreciation of what was truly present, and a growing awareness of what was clearly absent in her ability to openly converse. Just as there are challenges for someone who is blind or deaf, there are also immense challenges for those with autism. Clearly, the biggest challenge is the ability to process language and participate in the joys and ease of interactive conversation. One must appreciate that the ability to express one's thoughts and feelings, can lead to frustration and outbursts for those on the spectrum who are more severely impaired in language.

Was this a good experience for the students who took the time to visit? I believe it was, and not just for them. This was a hands-on experience at it's best ... for me, because I experienced the joy Marisa felt for having the opportunity to share her life with neurotypical peers; for Marisa ... for having the chance to do so; and for Briana and Alex ... who cared enough to take the time to reach out and connect with someone living with autism, a condition that still remains a puzzle to most of the neurotypical population. However, if more young people attempt to reach out and understand and accept those with autism, then there is hope for a better future, not just for the next generation of those on the spectrum, but for the rest of us who will be able to gain from the many talents this special group of people have to offer.

Learning to Deal With the Unexpected

The sun was shining brightly and it was the start of a new day. After she had gone through her usual morning routine of dressing and making her breakfast, Marisa was about to get ready to leave for school. Now she could be expected back in the kitchen to ask me to mute the TV news (she doesn't like listening to news in the morning), but something was clearly wrong by the tone in her voice.

"MOM! My shirt has a HOLE in it! Can you FIX it?" she cried out as if the world was going to come to an end any minute.

I knew this was going to be a big challenge for me. I quickly thought over my options. I didn't want to get her upset any more than necessary over what seemed like a major problem to her. Of course I would be annoyed if it was MY shirt ... one that was just bought under a month ago. If it had happened to me, I would simply return it with my receipt, but Marisa's shirt was actually a special one that she had purchased from a Miranda Cosgrove concert. That being the case, there was no way of returning it or exchanging it. I looked at the hole in the shirt ... smack in the middle of the chest and wondered how that could have happened. It made me angry to think it was a defect that had gone unnoticed.

"I can't fix it now but I will definitely fix it with a matching iron-on patch and even a rhinestone to cover the patch. After all, the hole happens to be just above the "D" in Miranda. It will add a nice sparkle to the shirt. Why don't you wear another shirt today?"

Marisa wasn't quite happy about that. She started to grit her teeth and get more upset. That's when I realized that she needed to hear the options.

"Okay, look! Here's the choices you have. You can wear the shirt with the hole today. It doesn't really show anyway, and I can fix it for the next time you wear it. Or, you could take it off and wear another shirt that doesn't have a hole. It's your choice. Either choice will be fine, but gritting your teeth and getting angry isn't going to solve the problem."

She stood there thinking it over and then said, "I'll change."

Off she went to find another shirt, and a few minutes later she appeared looking as together as usual.

"Hey, you're looking very pretty now," I said.

It's all about choices and making wise decisions. Marisa needed someone to help her navigate those choices, but once she made a decision she was back on track and ready to face the new day.

I sent a note to her teacher to let her know what had happened, just in case Marisa seemed upset about the change in her planned attire for the day. Later I was happy to receive a note back from the teacher that Marisa had not once referred to the hole in the shirt incident.

Now I know that Marisa has really matured! She was able to handle this disappointment and move on. There was a time when this would not have been the case. For example, she might have had a major tantrum that would have made her late catching her bus, or she might have gone to school and been upset all day, which would have been disruptive. She also might have refused to change into another shirt, which would have caused her to obsess over it all day.

The point is that although she was upset initially, she was able to think it through, make a wise decision and then move on with her day. I couldn't have handled that any better myself. Was I pleasantly surprised? Yes I was! Then I realized that with age comes wisdom, even for our special needs kids. This is something that all parents of children with autism or any disability should always remember. Maybe it comes at a slower rate, but we need to realize and have faith that wisdom does come with age, no matter how small an amount. And with the patience, nurturing and ever so gentle guidance we provide, every bit of wisdom our children gain, should be appreciated and acknowledged as a successful achievement in their quest to become fully functioning adults.

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.