When Felix was a few days old we had a visitor come to our hospital room. It was a lady who had come to give Felix a hearing test. Naturally, the first thing she did when she came into the room was to have a peek at the new baby. She introduced herself and then said, "Do you mind if I ask if your baby has Down Syndrome?" (I was a little bit surprised as all the other staff at the hospital didn't pick that up just by looking at him). We told her that yes, he did have Down Syndrome. She then responded by telling us that the only reason she had asked was because her son also had Down Syndrome and Felix reminded her of him as a baby. There was an instant bond with us and this stranger we had only met minutes before. It was like we were old friends as she sat and proudly told us all about her 43 year old son and everything he had achieved in his life so far. It was the best thing in the world to be able to speak to someone who was so positive and encouraging; who had years of experience and who had made it her goal in life to raise awareness and campaign for acceptance for people with Down Syndrome (including speaking appointments all over the world!).
One thing she said to us that has stuck in my mind since that day is this. She said, "The hardest thing about raising a child with Down Syndrome is not the child or their disability; it is dealing with people!" After only 17 months of having Felix in our lives, I would have to agree with her.
Having a child with Down Syndrome generally involves interaction with a wide variety of people. These people include, Speech Pathologists, Paediatricians, Surgeons, Occupational Therapists, Physiotherapists, Opthamologists, Teachers, Doctors, Health Nurses, other parents, relatives and the general public. Dealing with so many people can sometimes make you feel like your child is being constantly scrutinized and studied. People will offer their opinions even if you don't ask for them and, if you're having a bad day, it can be difficult to cope with.
One thing I remind myself every day, is that I am Felix's Mum. I (along with my family), know Felix better than anybody. By anybody, I even mean the trained professionals! You have every right, as a parent of a child with Down Syndrome, to correct even a Doctor if he is treating your child differently or is using derogatory terminology. You are your child's number one supporter. It is your job to stand up for your child if something is said or done that is not appropriate. I am still learning this one. I sometimes struggle to speak up and then kick myself later for not doing so. I'm hoping that over time I will become more assertive. Felix deserves that!
Words Can Hurt
The following is a list of a few comments people have made over the past 17 months which I know have not been said to be hurtful, but said out of a lack of understanding. I've been guilty of the first 3, and it's only through having Felix that I am learning to correct my terminology.
"People with Down Syndrome are always so happy" - You know what? People with Down Syndrome are exactly like you and I. Sometimes they are in a really lousy mood and are anything BUT happy! Felix was tired and grumpy this morning and just wanted to go to bed, just like every other baby!
"Children with Down Syndrome are only given to 'special' parents!" - Last time I checked, there was nothing 'special' about our family. We're a run of the mill, typical family. Sometimes I think we do a great job with our kids, other times I think we could use some lessons.
Don't ever say, "Do you go to a normal Playgroup?" Try saying, "Do you go to a regular playgroup" Using the word 'normal' when comparing a child with Down Syndrome infers that there is something 'abnormal' about that child. Felix is different in some ways to other children, but he is not 'abnormal'.
Don't look disappointed when someone says they have given birth to a child with Down Syndrome. Say "Congratulations!" like you would to anyone else. If it looks like they are not coping well with the diagnosis, be there to listen and offer support.
Don't say "At least he's a cute one" A cute 'one'?? This tells me that you are saying that you find the unique physical features of someone with Down Syndrome 'ugly' By using the word 'one' you are making it sound like people with Down Syndrome are a different species.
|Playing with Mummy|
We were staying away from home recently and I had encountered a couple of negative responses to Felix as I had pushed him around in the pram. On two separate occasions I had seen a person's smiles when they saw the pram approaching turn to horror when they noticed that Felix had Down Syndrome. One lady even thumped her friend's arm and then pointed at Felix as they both stared disapprovingly at him. I was gutted! Here was my beautiful little boy and they were staring at him like he was part of a freak show! Stupidly, I really let their responses affect me and felt a heaviness in my heart as I went out shopping the next day.
I was stopped outside of a shop, looking in the window. Felix was in his pram, staring and laughing at his reflection in the glass. I felt a tap on my shoulder. I turned around to see an elderly lady smiling at me. She said, "I just want to tell you what a handsome little boy you have there. I'm really enjoying listening to him laugh!" I could have hugged her then and there. The weight I had been feeling since the day before lifted straight off me. I bumped into the same lady twice more before leaving that day, and each time she smiled and touched Felix and told me how lovely he was. The last time I saw her I told her she had made my day. She looked a little puzzled by that and so I explained that Felix had Down Syndrome and that the day before some people had responded rudely to him. She responded by saying, "Whatever were they thinking? He is a perfect little boy. What difference does it make if he has Down Syndrome or not?" Then she said, "Thank you. In fact, it's you who has made my day!"
My encouragement to you is to be that stranger! Be the stranger who smiles at the man with Down Syndrome you see at the bus stop every day. Be the stranger who sees the toddler with Down Syndrome in the shopping trolley and tells her Dad how beautiful she is. Raising a child with Down Syndrome is wonderful, and I wouldn't change Felix for the world, but sometimes as parents we need some encouragement. Sometimes adults with Down Syndrome need that smile or that wave to show them they are accepted. I guarantee when you see the response you get, it will encourage you too!