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!

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.