Sticks and Stones may break my bones but words will never hurt me. On the contrary, words can hurt very deeply. Yesterday was "Spread the Word to End the R-Word." A day set aside by the Special Olympics every year to bring increased awareness to the negativity of the word retard. Everyone should realize how negative and hurtful the word retard is to anyone that is intellectually or physically challenged, to caregivers and those that work with the special needs population and especially to moms and dads. All around me, people casually use the word retard in their conversations. I hear, "Oh, I feel retarded" Or "That was so retarded of me." Or even, "Why do you have to be such a retard?" Sometimes I think that these people must not realize how offensive this word is. Has it become so commonplace that they don't even realize what they are saying? Each and every time I hear the word retard my heart breaks inside because three of my children arementally retarded.
I am embarrassed to say that when I hear someone use the word retard not once have I been able to be brave enough to say, "Hey, don't use that word." I just get too emotional. Instead of having the guts to say something I get too upset and the words get lost inside. In my mind, I try to rationalize what I just heard by thinking that "Well, they just don't know what they are saying or they don't really mean it." My next thought is that next time I will be brave enough and say something.
For our family being retarded means that our 7th grader can only read on a 1st grade level. It means that our 14 year old still needs help tying his shoes, safely crossing a street and brushing his hair and teeth. Being retarded means that our 8 year old struggles to hold a pencil and write the alphabet. Being retarded means that places kids enjoy like the movies and amusement parks are overwhelming and scary. Being retarded in our family also means unconditional love. Being retarded means facing each day with courage and a smile. Being retarded means not judging others. Being retarded finds joy in the simplest things. Being retarded in our family is not a swear word or a word used to belittle someone. It is diagnosis that our children have been given but it does not define their potential. Being retarded in our family has made us all stronger.
If taken literally being retarded means being exactly like Jacob, Sophia and Liam. It hits home when you substitute our kids names for the word retard. So, the next time you spill something or forget to do something and you have the urge to say, "Oh, that was retarded. You might as well say, "Oh, that was so Jacob or Sophia or Liam."
We are proud parents of 5 children, three of whom have been diagnosed with Fragile X Syndrome and Autism. William, my husband of 16 years owns a brokerage firm but his passion is advocating for the special needs population on a local,statewide and national level. He has been able to help innumerable people throughout the entire United States though his advocacy. In a few words, I am also an advocate, soccer mom, fundraiser, supporter, volunteer, therapist, chauffer, and friend.
In my blog, I will talk about our family's life with Fragile X Syndrome and autism. However, we are not here to offer you scientific information about the genetics and biological side of Fragile X and autism. Rather, the more personal and emotional aspect of raising a family with typical and special needs children. Welcome on this journey with us.
To find the most accurate and up-to-date information on fragile X syndrome please visit:
The National Fragile X Foundation,
FRAXA Research Foundation