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.