How to Talk to Your Child About His/Her Disability
by Mercedes Alejandro
First and foremost parents of FAS children must be prepared to put their own emotions aside and concentrate on conveying the information in a matter-of-fact, non-judgmental manner during the conversation. Rule #1 when talking to your child about sex disability:
1. Donít panic - remain calm. If you act nervous or hedge the subject you make it appear that it is something to be avoided, or be ashamed of. Certainly, your level of discomfort shows in your body language, tone of voice, or hesitancy so practice in front of the mirror. Say out loud the words you feel uncomfortable saying, practice saying them in a matter-of-fact tone of voice. Remember, by conveying the information in a calm manner, you let them know that sex disability is a part of life and only indicates how we are made (boy- girl- down syndrome- red headed) not who we are.
2. Answer only the question. That is, listen closely to let the child know this subject is important to you too. (a) give them your undivided attention, I turned off the TV and sat down on the couch and brought out the photo album, sit close together, (b) be prepared to use age appropriate language. In my sonís case I did not use the words "mental retardation" until he was much older, at the time he asked he was 10 and I simply said "the doctors said you would not be able to learn." Which gave me ample opportunity to point out all the things he had learned up to that time (reading, math, etc.) (c) on the other hand, do give them words that are important to know (I told my son he was born with a head size smaller than his body and was missing a part of the brain called the corpus callosum). In the case of children with other disabilities there is nothing wrong with them learning to be comfortable with saying, "I have Downís Syndrome," etc.
When my son asked "why am I disabled, but Iím not handicapped?" I took a deep breath and said, "well, letís talk about itÖ" and turned off the TV and got the photo album. "It all started when you were born, here you are with your dad, here you are in the incubator." "You see, when you were born the doctors said your head was smaller than your body, so they did a test in a machine called a CAT Scan." Continue to talk slowly watching his eyes for a reaction (fear, curiosity). If he is responding with more questions continue the conversation or end there.
The CAT Scan showed that he was missing a part of the brain called the Corpus Callosum. I told him the doctors said he would not walk or talk and he would not be able to learn. "Grandma in Chicago was praying and her whole church was praying and your Daddy and I wanted to do everything we could to get you strong. Your dad decided to quit his job and stay home with you to do the therapy. Here he is with you and your therapist, here he is with you in the pool. Since your arms and legs were limp your dad and I would move them for you. We did this for 3 years. After two years of therapy 5 days a week, you started to be able to crawl. And boy, you crawled everywhere!! Here you are crawling to get away from mom and the diaper!!"
"At the end of three years you wore braces on your feet to help you carry your weight and began to slowly walk by holding on to furniture, here you are holding on to a row of chairs that I put for you to practice." We were so proud of you! And here is where you started going to school, remember your friends at school? I looked all over Houston to find the best class for you and it was a class called "Special Education" and I thank God we have that because it had teachers that were trained to teach what you needed to learn, and you got your speech therapy and physical therapy there too. Here you are with your friends on the floor doing therapy time together!
"Did you know that we meet to talk about what you will learn in Special Ed.? Itís a meeting called the IEP and your teacher is there, your therapist, the principal, and me and your dad." "Would you like to come sometime and just listen in?" My son started attending his own IEP meetings in 5th grade. I stressed to him how far he had come, "The doctors said you would never walk or talk or be able to learn, and look at you now, you are walking, talking, and reading up a storm!"
3. Let the child express their feelings. At this point it is suggested when talking about (sex) disability with you child to ask, "what do your friends say about it?" "what do you think?" gauge by his answer if you have satisfied his/her curiosity. In the case of my son I saw that he was distraught. I asked, "How does knowing this about how you were born make you feel?" At the age of 10 he did not have the vocabulary so I volunteeredÖ."Are you disappointed?" "What does that mean?" he askedÖ "It means you expected to be a regular baby and now you find out you were notÖ and you are disappointed, like when you wanted a toy but got a different oneÖ like that?" He said, "yes," and I held him close and he began to cry softly. I cried with him and said, "your feelings are very normal, I felt the same way too." I let him cry so he could let his emotions out, itís not healthy to hold them in or pretend they arenít there Ė they can easily become anger and rage against the world.
After I held him close I said, "Look at the pictures of you now! You are certainly proved those doctors wrong, didnít you?" With the help of your teachers in Special Ed, all your friends in church and the neighborhood and all the people who love you, we can keep on showing those doctors they were wrong!
4. Find opportunities to convey your morals. As parents we should be prepared to use everyday examples to guide our children through the maze of modern morals regarding (sex) disability. We must let them know some people will be rude and stare (they donít understand), some kids will tease (they donít realize if they are hit by a car, they too will use Special Ed services), some people will be kind and open their hearts to us. If we know who we are and how wonderful we are we will not be ashamed of who we are (we are wonderfully made).
Use movies as an opportunity to discuss social attitudes about people with disabilities and our own attitudes towards ourselves. Not just the obvious ones like Forrest Gump. There is a part in the movie Babe the Pig, where the daddy dog doesnít want the farm animals to know that he lost his hearing while rescuing sheep in a storm (and can no longer hear his master and win competitions). I pointed that out to my son while watching and said, "Heís ashamed of being deaf," my son said, "Mama, Iím not ashamed of my disability." "I know, son, always be proud of who you are!"
I can only share with you my experience, take from it what can work for you, It is how I approached the situation and it worked to establish a good sense of self esteem.
For parents of children with FAS the issues go deeper and dealing with our own feelings of guilt or anger is important to resolve before we can move on to a sense of acceptance. I did not tell my son he had "mental retardation" until he was 15 and I felt he was ready to discuss what that meant. We talked matter-of-factly about it and even figured out what "modifications" he would need in a workplace. I've told him about the ADA law and what it means to him. When he got his first summer job he asked the orientation trainer to be tested orally since he could not write out extensive answers. He knew the answers orally and got the job!