A Wish Come True

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

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

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

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

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

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

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

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

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

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

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

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

Wow, what a break! I thought.

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

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

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

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

"I'll need to get their autographs!"

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

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

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

A Moment to Shine!

Marisa loves to shop! Like women of all ages, she is fashion conscious. She loves to check out the websites of her favorite stores. She'll methodically search for a particular item she may have seen in one of her fashion magazines. Often she will head for the store branch nearest our home to see if she can find the item she is interested in.

I was with her on one of these excursions. Then, while waiting outside the fitting room at Delia's clothing store, I spotted a sign posted on the wall that sent my own heart racing with excitement. It was an opportunity to be a model for a day in a Delia's fashion show!

The sign read:


Seeking 20 girls to participate in a fashion show at Delia's. 
Sign up on January 24 between 3 PM and 8 PM. 
Show to take place February 11!
DJ and refreshments!


I stood there thinking about how this was a perfect opportunity for Marisa. I couldn't wait to show her the sign on the wall beside me! Once she read it, she was so excited that she exited the fitting room like someone who had just won the lottery! All eyes were on her as she stepped up to the cashier to ask about participating.

"I want to be in the fashion show! Can I sign up?"

We were told to come back on the designated sign up day, when 20 girls would have the chance to participate in one of 2 shows scheduled for February 11. Ten girls would be in the 1 PM show and 10 girls would be in the 4 PM show. Marisa left the mall ecstatic!

The next week we returned to sign up for the show. We were the first to arrive! We were given instructions about when to return to try on outfits for the show.

"I'm so excited to be in the fashion show!" Marisa announced to me as we left the store. "I can't wait!"

A week later we returned. Marisa was told that she could try on as many outfits as she wanted, but would need to select just one to wear for the fashion show. There was much to choose from, but Marisa only selected two party dresses. Off she went to try them on, and when she made her choice, I was not surprised to see that she had chosen a blue sequin dress to model for the show.

When the day of the show arrived, Marisa was feeling very upbeat. As we walked through the mall on the way to Delia's, she had the air of a celebrity about her. She wore an outfit that was clearly Rocker/Pop star ... a white sequin sweater over her worn and holey rhinestone jeans that she reserved for attending concerts and shows. Only today, she was feeling like the show was hers. Her entrance into  Delia's felt like the impact of Niagara Falls. "WOW! You look great in that outfit!" the manager said.

"Thanks!" Marisa's response expressed all the excitement of the upcoming event to take place.

Marisa was escorted to the dressing rooms where she changed in to the beautiful blue sequin party dress. She had her own dressy shoes to wear and was given a necklace and bracelet to accompany the dress.
As we waited, it was nice to see Marisa introducing herself to the other girls in the show. They stood around making small talk till it was time for the show to begin. It was nice to see this natural interaction between Marisa and the other girls who were all sharing the common bond of participating in the fashion show.

Then the DJ started to play and announced that the fashion show was about to begin. I left the dressing room area and headed out to the front of the store where my husband and daughter Deborah were waiting along with Marisa's support staff and a crowd of other parents and passerby shoppers. Each girl was introduced by name and a brief summary of their interests were mentioned as they walked out individually on the predetermined path to the front store window and then back to the dressing room. Marisa was the last one to come out, but she managed to walk gracefully with her head held high. Her smile showed all the pride and satisfaction she was feeling to be included in this fun modeling event. Then all the girls in the show came out as a group and stood modeling their outfits in the store window. It was clear to see how special they each felt!

As I stood there watching my daughter be a part of this fun event, I couldn't stop thinking how amazing this moment was. There was my daughter with autism, modeling among a group of neuro-typical girls. Was she different? Was she noticeably disabled? Did she stand apart from the others? Not at all! However, there was something about her that was very special. She was totally uninhibited to be standing there dancing to the music in the store window, while wearing the beautiful dress she had picked to model. I couldn't have been more pleased and more proud than I was at that moment. But one thing was clear to me.

This event gave Marisa a moment to shine, and that assured me there would be more to come!

Learning to Iron

About a month ago, I pulled out my ironing board and gathered all the items needing ironing. I really don't like this task, so I waited for a number of things to accumulate. Now the basket was full, and I could not put it off any longer. I surveyed the items in the basket to see what order I should attack the job. I started to gather Marisa's button down collared shirts. There were 3 no 4, 5, 6 ... 8 all together! Well, here's something Marisa should start to learn, I thought. For work days Marisa likes dressing in what she was taught were work appropriate clothes. Tailored pants and button-down collared shirts are her choice for work attire. The problem, however, is that I have been stuck with the job of ironing all those shirts. So the time had come to teach Marisa a new skill, but going about it was not going to be so easy. It would have to be a slow and cautious process.

"You really need to learn to iron your own shirts," I started to say. "If you're ever going to live on your own, I won't be there to do it for you," I added as incentive. "Next time you do your laundry, we'll work on that. Okay?"

"Okay!" was the reply. I wasn't sure if she was taking this seriously.

Days went by. Then I heard, "I'm ready to iron!" There was eagerness in her voice. I was not so eager to approach this task. It was going to be difficult, but her enthusiasm was so refreshing!

I pulled out the ironing board and then the iron. I explained how to turn on the iron, fill it with water for steam and adjust it to the proper temperature for the fabric being ironed. That in itself was a lesson and one to be repeated over and over again until she would be able to show me the steps on her own.

"Okay, now we're ready to begin!" I said. Step by step I explained how to tackle the tailored shirt, one of the most difficult items to iron. I ironed one shirt slowly as Marisa watched. I figured if she could learn this, then she could iron anything! First the collar, then each sleeve, turning to do the other side. I ironed the placket and around the buttons and then both sides leaving the back for last. It was a slow process, but after I did one shirt, Marisa started with the second. I showed her how to hold the item while staying clear of the iron. Watching her was awkward and slow, but like anything else, learning something new takes time. She managed, with a lot of help to get through with that one shirt. Then I did the rest. I didn't want to push too hard and discourage her. Even I didn't want to iron 6 more shirts!

We're going to be working on this skill for a while. So what if it takes a long time! I spent nearly 2 years helping her learn to unlock the front door.  It was worth the effort and learning to iron will be worth it too. Marisa will learn to have a freshly ironed shirt ready for work each day.

Just the other day I heard a call from the distance.

"I'm ready to iron now! Will you help me mom?"

What more can a mother ask for?

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!