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.