Disclaimer: Nothing written in the following passage is about any one person in particular. This happens to be a subject that my friends and I talk freely about and these words have been mentioned to me in the last 2 weeks repeatedly to the point of frustration.
I have discussed this issue before of people telling me that my children “look” so normal. It is something that I try to revisit with the general public, because well it’s just plain rude. When a person states that to a mother it feels as if we must defend our children, but there should be no need for a defense. Why do you not believe my word? Is it because my child is not purple? If he was purple would that help you to understand that he’s a child with special needs? If he was in a wheelchair would that make it easier for your neurotypical brain to grasp? It is a travesty that so many humans have to see to believe. Why would I lie about my child having a diagnosis? Yet, this is how I feel whenever anyone says those dreaded hurtful words. I feel as if you are telling me that I am lying about my son and daughter.
What if you said to me, “my daughter got straight A’s this year.” And I replied, “really? because she doesn’t look very smart.” Could you imagine your outrage? You would then point out how inappropriate that was for me to say, yet you as a public as a person can tell me that my child does not have autism because they LOOK normal.
We as parents of children with autism are the MOST harshly judged of all parents. Why? Well, for many reasons. Mainly because it is a silent disorder. You cannot see it unless you are a parent or are trained too. You cannot smell it, touch it, feel it, or hear it. It is silent, as silent as the children themselves. This causes confusion with the public. Obviously my child must be fine because he is not in a wheelchair wearing 3 inch thick glasses with a disfigured face. How sad is that that the society has adopted such a harsh view? Do you know what the flip side of this coin means? The flip side is that when you see someone who is in a wheelchair, who does have a disfigured anatomy, and who does drool all you see is their disability and not them. While you belittle my child’s diagnosis you belittle the person who does LOOK like they have a disability. You can’t see them for the people for the HUMANS that they are. Perhaps that is even more sad then what you say to me and countless others. Perhaps that is what makes you typical…..so very typical.
It saddens me every time a child is diagnosed, not because of the autism, but because of the isolation that the family is about to endure. The isolation is much more severe than any other syndrome. You may not understand why, but it has to do with the fact that the average person rejects what they cannot understand, so our children and our families are rejected. Rejected for being themselves. Never fear neurotypicals do this to down syndrome and other disabilities as well; however, instead of rejecting them for what they cannot understand they reject them for what they cannot see. They cannot see the beautiful whole person inside of them. I don’t know which one I would rather be a part of, because at least my child is not judged because of facial features or having to use a specialized chair.
One of the most interesting conversations to watch is for me and my children to visit a new physician. This always starts with me telling the frontdesk that I would like to direct exactly what will happen to my child so there is no meltdown. The ladies always look at me oddly but relays the message to the nurse. However, as soon as I have gotten the kids weighed and their temperature taken it NEVER FREAKING FAILS the nurse turns to me and says “but they look so normal!”
I seriously NEVER want to hear that come out of a professional persons mouth. It is like starting WWIII with me. Just the other day I reminded said nurse how unprofessional that was, and that although I am very open about my children’s autism other parents aren’t. I then reminded said neurotypical that she has the ability to affect a child’s life and if she repeated that to parents then it is possible that the parents could stop seeking therapy for their children. It seems extreme right? WRONG…not in the autism world. So many parents are seeking acceptance and some really do not want to accept that their child has a disability.
Another issue that comes right along with telling me that my child is normal is when someone has known someone else with autism. Now THAT is annoying. They OBVIOUSLY know more than you do because they spent “QUALITY” time with said autistic. Sigh……I have to explain to them. No, you do not understand autism you got a glimpse into our world, you were exposed for a brief moment, but come on down to autismland where there’s few food items, NO touching, and LOTS left unspoken. I know that they truly do want to help and they have a great and wonderful heart…blah blah blah, but we hear it over and over and over and over and over. We hear about how so and so’s girlfriend had a child with autism and they did this or so and so’s boyfriend had a child with autism and they never did this. It is downright rude. Would you do that to a parent of a child with cerebral palsy? Would you do that to a parent of a child with schizophrenia? Would you do that to a parent of a child with down syndrome? THEN WHY DO IT TO A PARENT WITH A CHILD WITH AUTISM? Why are we so damn special? Why do we get to hear all of this from ALL ends?
It never stops for us just like any other parent of a child with a special need. It never stops. One thing I can say is that it’s a spectrum. If you don’t know the meaning of the word spectrum there’s this website made by Webster…check it out!
PS: If you MUST say something to a parent of a child with autism, compliment them on being so calm. Compliment the parent’s hardwork. Tell he/she that she is doing well and that you admire what he/she does. I understand that telling the parent that their child looks normal is sort of a way for you to give a compliment, but it comes off so rude. If all else fails remember the ONE rule: Think before you speak. Think about how it affects others, and how you would want to be treated!
My children are going away with their father for about a half of a week, from Thursday until Sunday. I have a goal of what to finish for my qualifying exam. If I can get all of that written plus all of my lab work done and ready so none of my pancreatic cancer cells will die then from friday till sunday I will be in Memphis! Woohoo….seeing my manfred! I dunno if he’s excited…..but I am….I have to have something take my mind off of my babies being gone. It worries the hell out of me them being with the absent parent….he loves them, but he doesn’t do what I do..nobody can do what I do with my kids. I’m so damn nervous……….
Oh well, then my next goal is if when I get back I can finish the qualifying exam in 3 days I will take the kids on a trip to Cincy. We will visit the Cincy Zoo (Already did this, but there’s just so much to see and hopefully this time we can see the baby white rhino), and go to King’s Island for a couple of days.
I have to set these goals or I will NEVER get done….nope NEVER…..NEVER EVER EVER. I call myself lazy….yes, me single mom of 2 kids with autism in her 3rd year of PhD in biochemistry lazy? oh yeah….you have NO idea…school is easy for me……..but doing what I’m suppose to? nope not easy…..I am the worse procrastinator…doesn’t help I have Asperger’s and ADD to go along with it…..
Sigh..anyhow….give me some tips on how to organize my time better…..post away about how you get your housework done so you can enjoy life, because I just haven’t figured that part out yet!