As Autism Awareness Month Comes to a Close
As we come to the end of Autism Awareness Month, I feel inclined to write this. I have read opinions from both sides of the fence on this topic that are in abundance lately (probably something to do with Autism Awareness Month, ya think?), so I feel the need to offer up my two cents. I know you can hardly contain yourself!
I, like many other autism parents, follow a lot of Facebook support pages and other social media pages for parents who have children on the spectrum, as well as various other bloggers. I have seen several posts where people are asking others to look at autism itself as a positive thing, or posing the question, would you change or take away your child’s autism if you could? I have also seen comments on support groups shaming parents for feeling negative or venting.
I cannot for the life of me wrap my mind around this! And I don’t completely disagree with everything I’ve read about being more positive. But autism is a spectrum. There’s no comparing apples to apples! (Really this is true of all children, but anyway) We cannot compare one of our ASD children to the other. We cannot compare any of our situations to another. We cannot judge what we don’t know.
We can only support each other, try and help each other problem solve and share our successes from small to big. And by golly we can vent! But shame and ridicule? I see no use in that.
My opinion with which you can agree or agree to disagree, is that autism in itself is absolutely NOT positive. I 100% try to find the bright side of parts of our daughter’s disability, but that is what autism is, her disability! I would be first in line to take it away from her! She is nonverbal, severe, trapped in her thoughts, has extreme battles to overcome in every aspect of her life. Autism does not make my beautiful daughter who she is! It causes her struggle! She lives in the grey area…a world of the of unknown.
Her future is too hard to think about without many major medical miracles, so we have to live in her now. Bottom line…autism makes her life more difficult! And I will fight until the day I die to erase autism from her life! I will hold hope for a cure for this complex neurological disorder that has taken her independence away from her. I will try to help others understand autism and raise awareness. But I will absolutely not tell anyone that autism is a blessing in any way!
My daughter is the blessing! And even if she wasn’t as severe as she is, I would never want my child to continue to have any diagnosis that made her life a little more difficult. Even if it was just a little!
We absolutely do try to stay positive. Positive that she will sleep all night. Positive that a new medication in her ongoing medication and supplement roulette is going to help her. Positive that a new intervention will help lift some of the autism fog, and that she will just be able to have a happy and pain free day!
But autism is not sunshine and rainbows. I refuse to minimize it. Even those who have “high functioning” kiddos, should not have their child’s struggle minimized or dismissed. You have not walked a day in their shoes.
So again, we can just agree to disagree if you feel differently!
I know one thing we can all agree on, though. We can continue to raise awareness, call attention to the special needs of our children and bring together hope that one day this topic will be a moot point.
Written by, Shelley Tinnon
I am 37, married and have two beautiful children. My daughter, Sloane, is 9 and has severe, nonverbal autism. She teaches me something new about her and myself almost every day. Jude is my 2 year old. I cannot remember life before Jude. He is the sweetest, brightest little light. My husband and I have known each other since we were kids. He knows EVERYTHING there is to know about me and still loves me. I feel like I should get him a trophy or something!
This piece originally appeared on Shelley’s blog, JUST FINE.
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I don’t usually leave comments, but your words just made so much sense to me. Thank you for that. All the best to your family.
I am all about being positive too, and at the same time we ALL know that parenting is a VERY hard endevour. This is the consensus right? I was pushed to my absolute MAX of patience this morning with nuerotypical kids who are going through their own pubescent struggles . Add in an autistic child who has bouts of screaming fits and I don’t know how anyone can say it’s “Just another way of thinking”.
My super kind and patient family member couldn’t be in the same room with two of my kids for longer than 15 minutes at a time because it was so much to beat. Do I shame her or say she’s not seeing this whole thing correctly? No! I give her grace.
We love our children, AND we want them to have a happy fulfilled life. Caretakers and spectrum parents are the true heroes of our society and my wish is also that we can love and support them through hard and tough (yes hard and tough) times of care taking.
I don’t make as much sense as the above post but it really spoke to me. There room FOR BOTH love and grief over he struggle!!
My sister has autism and I am very happy to see someone else highlight that their futures are still bright and that they still love the same things that we love! There are many times that we need to remember to stay positive, but like you I refuse to minimize her autism, instead I embrace it. I agree that after it all raising awareness for autism is one of the best things we can do.