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!