Most parents who have a child on the spectrum have pretty thick skin. It comes from years and YEARS of evaluations, tests, RE-evaluations, IEP meetings, and on and on and on. Most of these instances are full of a specialist going over a list of skills/traits your child isn't doing fast enough, well enough, or even at all. Honestly, for lack of a better word, these pretty much suck! With this tough skin, most parents are able to take words from others and file them away in the folder labeled, "THEY ARE MOST LIKELY TRYING TO HELP, THEY JUST DON'T KNOW WHAT TO SAY."
I, personally, do not take offense to most things people say to me about my son or autism, in general. As long as I know they are coming from a place of love and trying to understand our journey, I take their words (albeit sometimes hurtful or down-right ignorant) as a chance for education on acceptance and inclusion.
I really want my friends, family, colleagues, and fellow parents to be able to tell me anything and express themselves without feeling like I am going to chastise them for HOW they say it. I have reached a place in my autism parenting journey that is fully accepting of my son and his diagnosis. I literally would not want to change him in one single way. I will be honest though-I didn't always have that viewpoint. I was uneducated and ignorant to what autism is, the spectrum it holds, and the amazing qualities that can accompany it. It took me years to get here. It took me YEARS to peel away at the anger, grief, and misunderstanding that came from those four little words, "Your son has autism." I was able to learn that all of the pre-conceived notions that I created in my head about his diagnosis were put there by a society that didn't understand him-one that didn't even take the time to understand him. So would I change anything about him? No What I would change, though, is: society! POINT BLANK!
Would I wish for my son to have autism? No. But do you want to know the only reason why I wouldn't? Other people's treament of people with autism. Society makes that word "a negative." It makes that word "different." It makes it "not normal." I do not want people to treat my son differently. I want them to treat him the same as the dyslexic kid, the ADHD kid, the neurotypical kid.... They are all just little humans living their journeys. We have a long, long way to go to throw these pre-conceived notions out the window but here are a few things that I believe can help in your interactions with an autism mama or dad.
I will preface this by saying two things 1. All five of these things have been said to me. Some of them were said by immediate family members, some by friends, some by teachers, some by people in the grocery store. 2. This is not a post that is meant to come across as hostile or defensive. I love those people that said these things to me just the same. This is an opportunity to help educate people on things that are often said to parents that really are not helpful, not appropriate, and sometimes quite damaging to our hearts or relationships with others.
Are you sure he's autistic? You'd never know it by just looking at him.
Trust me. As accepting as parents are of their child's diagnosis, no one goes fishing for it. Trust me AGAIN. When we were first told this diagnosis, we went through every checklist and asked every question that may help to clarify the mistake we thought that doctor was making. What others need to learn about autism is that it is a WIDE, WIDE spectrum. There is not a sudden increase in people becoming autistic. Through research, we are learning that the spectrum is so wide that many people have lived their entire lives without even knowing they were autistic. Autistic people can live a very "normal"(if you've been following along for any period of time you know I detest that word) life. There are so many people that you grew up with that would have been given an autism diagnosis if they were a child today. Those people are mothers, artists, doctors, teachers....they are just like you. So, YES, we are sure that our child lies somewhere on the autism spectrum, and to be honest, we are okay with that. We are okay with it because we are educated enough now to know that the diagnosis gives us the resources to help our child thrive. It gives us the opportunity to know our child even better. It gives us the knowledge to believe he is capable of all he dreams of and that many autistic people have come before him that have accomplished those dreams already.
What Do You Think Causes Autism? (or share your thoughts on the causes)
If one more ad pops up on my Facebook that suggests that the TYLENOL that I took during pregnancy caused my child's autism, I may just scream. There is not an autism mama in this world who has not LOST SLEEP OVER the list of things she could have done to cause her child's autism. Did I not drink enough water when I was pregnant? Was it that one deli sandwich I had that I wasn't supposed to eat? Was it all the TUMS I took? Did I not breastfeed my baby long enough? Was it the vaccines I agreed to? Was it the baby food I fed him? THESE QUESTIONS CAN HAUNT A PARENT! WE CAN'T ESCAPE THEM. THEY POP UP EVERYWHERE-ON OUR SOCIAL MEDIA, THE TV, CONVERSATIONS WITH PEERS....
Let's leave this one up to the professionals. There are so many baseless theories on the causes of autism. It does not help at all to offer your theories or ask ours. We do not want to find a cause. We want others to understand this is how our child's brain was designed. It's that simple AND WE ARE OKAY WITH THAT. What you can do is find credible resources to educate yourself on this diagnosis and the research being done today to combat the misinformation being spread and to learn more and more everyday about how to best understand and support those who live with this diagnosis.
Do You Think He'll Ever Grow Out Of It?
Autism is not a disease. It is not something that you can have one day and not have the next. It is simply the way someone's brain is designed. Brain chemistry does not change. So as much as I am not looking for the cause of autism, I am also not looking for a cure. I do not feel the need to fix my son. To be honest, I actively fight against therapies and organizations that seek to fix him and those like him. There are aspects of many autistic people's personalities that are not considered "normal." When I say normal, I mean society's view on what all people should look like and act like. I hope my child is never normal. I hope he is always exactly who he is. He is happier, more creative, more driven, and more confident than most "normal" people. Let's try and move away from encouraging any child to simply conform to what society thinks is "right" and to instead embrace their individuality.
I'm Sorry
If there is one thing I'm 100% sure of, it is that I have NEVER been sorry that Andrew is my child. NEVER, NOT ONCE, NOT EVEN AT MY LOWEST MOMENTS. One of the first people who told me they were sorry about my son's diagnosis was his first pediatrician. It was so inappropriate and hurtful-especially coming from her-someone who should be more educated than that. Saying you are "sorry" sounds like you are saying that there is something wrong or imperfect about my child. Instead of "I'm sorry," you could ask how you can support me in my journey or that you are here if I ever need someone to talk to along my journey because parenting is just hard.
"It Could Be Worse"
Yep. You read that right. Someone has actually said that to me. The comment actually ended with "....at least he doesn't have cancer." I honestly didn't even know what to say. What I will say is that the "It could be worse" argument is not a good one. First of all, I know it could be worse. My child could have a terminal illness. My child could have died in a tragic accident. But again, my issue with this argument is that you are saying my son's autism is wrong. You are saying the way he is, is WRONG. I do not see it that way. There is no worse, or better, when it comes to who my child is. Do we have worse or better days? UH, yes. Don't you?
Are there aspects of my son's personality that I prefer over others? Well, ya. Don't you with your child?
Again, please know that this post is not meant to make you feel like you should walk on eggshells around every parent with a child on the spectrum. My SINCEREST hope is that you will just treat us and our children like any other family. In all reality, we are just like everyone else. We may have struggles that you do not have that may require extra understanding and patience. I may need extra grace when I am on edge or overly tired. But, so do my friends who are going through a divorce or who have a child with severe food allergies. I almost guarantee that all of you "neurotypical" and special needs parents alike need extra understanding, patience, and grace in one way or another. I'm here to support you along your journey-it is no better or worse than mine. It may be different but as my sweet, wise Andrew always says, "How boring would the world be if we were all the same....."
All my love and support, Anna
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