Lately, I am reminded again and again of how autism is perceived. The handsome teenager with autism who takes the popular girl in school to prom or the cute girl with autism who is the best barista in town. These examples are nothing like my reality with autism.
So please, allow me to tell you how we experience autism, here in our home.
My son Timothy is 7 years old. He carries a diagnosis of autism spectrum disorder. His last IQ testing had him in the bottom 1% of his peers.
This is our autism.
Timothy is locked in his room at night for safety via child safety doorknobs due to wandering and lack of danger. Its certainly not how I want it but for now it keeps him safe. Several 911 calls and nervous breakdowns on my part have dictated it to be so.
This is our autism.
He is finally toilet trained as of this spring in the daytime, still wears a brief at night due to nighttime bed wetting....wait, he will not sleep in a bed....floor wetting? Do you know how hard it is to find diapers to fit a 7 year old who weighs 70 lbs? How expensive?
This is our autism.
Timothy has difficulties riding in my vehicle and often becomes aggressive to his sisters, pulling their hair and smacking them. He will kick at the windows. He will throw objects at his sisters and myself (the driver) if given the opportunity. He has grabbed my hair several times while driving. Talk about multi-tasking!
This is our autism.
Our household revolves around Timothy. His behaviour can make or break the day. If he is distressed or upset, we all feel it. When he smiles, it feels like the sun is shining down on our faces and in our hearts. We truly just want him to be happy.
This is our autism.
I don't recall the last time we went out to eat as a family. We can't. We have never bowled, been to a movie, gone to church, a ball game or the aquarium together. Timothy can't yet tolerate it. I'm not sure if he ever will but still cling to the hope that one day we will have these experiences, that he will.
This is our autism.
One day I will have to face the fact that Timothy won't be able to live with us anymore. Emotionally I'm still in denial but with every passing day it comes closer to becoming reality. My family won't be a family without him. My heart, broken. I pray that he won't feel abandoned and that perhaps he will find happiness.
This is our autism.
We eat, breathe and sleep our autism. We cry, we love, we celebrate our autism and we mourn it. I don't know how to be anything else BUT a special needs mama. I love my son. I do not love his autism. It takes, it twists, it distorts and it hurts.
This is our autism.
I hope that somebody out there reading this can find comfort in knowing they are not alone....that there are others out there living similar lives with their own version of Timothy. Their own autism.
Let's share some stories about our different experiences and shine the light on the other side of autism. The one that isn't always so pretty but is a reality for so many of us.
Love Trish
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You're right. Everyone's experience with autism is different. Some embrace it and wouldn't "cure" it for anything because it's part of who they are. Others hate it, and would cure yesterday because they can't stand the struggles they or their child face.
ReplyDeleteAs all good moms do, you will do the best you can until you can't. Whenever the times comes that it no longer works and you need to change things, remember that 7, or 8, 10 or 12 years is a LOT of years of love, patience and understanding that many parents can't or don't give to their kids on the spectrum that you have and will have given your son.
I here you we have an 11 year old who is on the severe end of the spectrum its a hard thing! ((Hugs))
ReplyDeleteReally feel you. Lots of similar things here. The car rides...ahhhhh, yes...
ReplyDeleteMinecraft on the iPad has saved my life I must admit. My son's behavior has even started to improve - less aggressive when he's not seeking things to keep him occupied. I know it sounds wild. We spend time together with him playing this too.
I've had so many exact experiences, we prefer to stay at home than go out, we developed this technique which we usually plan our trips, where to go and what to eat. Eventually, he became used to it. Now, my son is 9 and has lesser tantrums and meltdowns, we can now eat happily in a restaurant as long as he can eat his favorite food. We lessen the sweets and juice drinks, we now give him "kangen" water or just tap water. it's been an amazing journey for us, giving us tremendous patience. Everything will be alright at some point, we will all find that moment.
ReplyDeleteI want to thank you for sharing your story, and Timothy. My daughter Piper was diagnosed with autism this year, at 3. It's a real comfort to know that there are other mothers who understand that every moment of every day is truly the unexpected. Late at night, when everyone else is sleeping, I am thinking of her future. This is the exact reason why I blog about our journey, as well. I truly appreciate what you are kind enough to share so candidly. Drivingthestrugglebus.WordPress.com
ReplyDeleteI want to thank you for sharing your story, and Timothy. My daughter Piper was diagnosed with autism this year, at 3. It's a real comfort to know that there are other mothers who understand that every moment of every day is truly the unexpected. Late at night, when everyone else is sleeping, I am thinking of her future. This is the exact reason why I blog about our journey, as well. I truly appreciate what you are kind enough to share so candidly. Drivingthestrugglebus.WordPress.com
ReplyDeleteI just stumbled upon your blog and I wanted to know it really helped me this am. My son is 3 and has autism. I absolutely hate it but love my son with all my heart. He also has beautiful bright eyes that melt our heart. My husband deals with it much better than I, I raised two exceptional successful daughters and decided to have another child with my new husband. I didn't sign up for this and am very resentful, wondering why didn't we just leave it alone and why did we decide to have a child, on some days. Most days I am ok, until I have him in a situation with other typical kids and it is just so obvious to me how different he is and how locked inside himself he is. It is the absolute most difficult thing I have ever had to deal with, and I've had a lot in my life..
ReplyDeleteThank you for your blog.
Hi
ReplyDeleteI dont have a child with autism but I am a teacher and this blog really helps understand autism. Be strong
Love from the other side of the world x
Hi
ReplyDeleteI dont have a child with autism but I am a teacher and this blog really helps understand autism. Be strong
Love from the other side of the world x
"Walking that mile in our shoes.." is an interesting poem that is being shared with us.I appreciate the work of the author.
ReplyDeleteGood job..!!
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