Some Days Autism Kicks Me In The Ass!
Yes, today of all days was one of those days. I endured intense hyperactivity ALL DAY. Whining and crying. Nonstop fighting with his sister. Intense obsessing over every little thing. “I want this” and “I want that”, and not being able to let it go. Whining and crying. Sneaking outside, into the front yard, and up into snake filled forest and refusing to come back. More whining and crying. Pulling on the dog’s collar. Then, when we had to make a quick trip to the grocery store, refusing to put his seat belt on, pulling at my hair from the back seat while I’m driving, throwing objects through the car. Refusing to get out of the car, leaving me standing at the side without many options but to wait it out, lest I be kicked if I go near him. Causing an embarrassing scene in the grocery store, and then in the restaurant. And on and on and on. Nonstop. All day.
The last month or so, we’ve had a lot of these bad behaviors. It’s been tough without structure and routine. That’s our summertime. Daddy is not here. Liam takes his worst behaviors out on Lilah and me.
And I feel bad, for him and for us. On days like this, I just hate this monstrous affliction that is autism. I wish I could make it go away. It sucks. It’s hard. It’s exhausting. And most importantly, it’s not Liam’s fault. He is still my sweet and precious little boy who I love to no end. I know my sweet and loving boy is in there. Yes, that boy who says he’s sorry and tells me he loves me and that I’m his best friend. That boy, Liam. Please come back Liam.
When I finally got him to bed, he fell asleep quickly, and I just started to sob. Crying is not something I succumb to very often. We warrior mom’s have to hang tough through it all. And tonight I thought, how do we do it? Autism is so hard and relentless. We do it because we have no choice, and because of the immense love we have for our children. But it still sucks, especially on days like this.
And of all days, today, the day we are launching our project on PledgeMusic. There was a lot of work I had planned to do. I got some of it done. Some of it, I didn’t. That’s alright. Tomorrow is another day, and it happens to be the first day back to school. We have to be out the door very early, but I’m about to win a little bit of my sanity back.
I feel kind of sad because I wish I had spent more time today happily anticipating my girl Lilah’s first day of middle school. I know she’s nervous. It’s a big deal. Lilah handled our intense day with so much maturity and grace. I hope she knows how proud I am of her. I try and tell her a lot.
If you have a dear friend or family member who is parenting a child with autism, just know this. What they go through on a daily basis, you will probably never be able to understand. Just know that their everyday is filled with emotional chaos, and it’s totally exhausting. And for that matter, all kinds of chaos. We are constantly trying to keep our kids out of trouble and danger. We warrior moms just have to keep calm and carry on, as the Brits say. And some days, we’ve just had enough and we have to cry. A lot of us get our own therapy from writing our blogs. We vent to ourselves, sometimes the world, and we’re ok after that.
And now that this intense day is coming to an end, I finally get the chance to sit down and read all about how our first day on PledgeMusic went. Looks like it’s gotten off to a good start. It warms my heart to read all of the encouraging comments and well wishes. It means so much to us to be a part of this community of people who care about people with autism spectrum disorder.
We have a lot of great stuff we’re working on that we are very proud of. We’ll be sharing a lot of it with our pledgers in the coming weeks. Thank you, thank you, thank you so much for your support!
10 Responses
Matt O'Neil
Thank you for the well stated journal entry. As a father of a 15 year old boy who has Asperger’s and depression and anxiety I can completely relate. My wife and I have had many days like yours. Everyday is a challenge and some days are just hell. My son was the one who told me about your project. The one saving grace for my son has been music. Our son plays guitar, bass, drums and writes songs and attends School of Rock. As I write this we are watching Cheap Trick at the hall of fame. Music has saved our boy and we attend many concerts. Continue being a great mother and find time and friends for your own support. Thank you.
Rebecca Holguin
Allison, as the grandmother of a sweet boy battling the effects of autism my heart goes out to you. You are using your gifts to help others, I love your music and will plan to use it. I have noticed that our grandson responds well to video, he loves “Signing Time.” Are you considering a video component for your music?
Yoko
Ms. Peterson,
I have 15yrs old boy and 12yrs old girl.
They are healthy, but I had very hard time to communicate with them, and am still having sometimes.
With your post, I am noticed that it is like the case with older people. My parents are 80yrs old, very healthy, but they’re getting weaker slowly, naturally. I need to talk with them patiently. Feels like the case with kids. I’m taking very long time to be a mother mentally, I’m still learning to be an older daughter for my parents.
Barbie Shore
It is very challenging and you are doing great work.
I wanted to share my friend’s work with you, the Autism Acceptance Project, which promotes acceptance of neuro diversity. http://www.taaproject.com
Her son is non verbal but sings and types; is very articulate and like you, she is doing all she can to bring out his gifts while challenging the idea that he needs to be fixed.
Blessings to you & your family.
Lori
Thank you for sharing your tough day. We love our kids so much. We get so much joy from knowing them. But dang it’s hard when there is no school. Every time there is a natural disaster or other reason school is closed I think, " what are those families doing?" How do you explain power outage, or you can’t drink the water?
Teri
I know my nephew Andrew whose mom is my cousin put her through alot as he was growing up. He’s found an interest in online video games and outbursts are controlled by this.
Caryn Valeu
I work with children that have autism and other disorders, many times I see them have trouble with change of weather or stress in the classroom/home.. They feel the change of things much quicker than we do. If one morning the enviroment is differnet in the house-( stress,cold or hot outside not enough sleep, but mostly to much noise really bugs them). When I’m working with them I usually take them to a quiet place until they calm them selfs down or we just walk outside. Some of the children are not able to talk so we use cards with symbols on them so they can point and tell us what is bother them. When to much noise is going on in the classroom we give them headphones to block out most of the noise from the other childrens play or talking..
Each child is diffrent and special in so many ways.So we work inpendantly with each child goals and cheer them on when they have suceeded. I wonder if he can tell when you are not feeling well? I do not know you so or your child, But wish you only the best it will get better as he gets older and he is able be his true self. I agree your daughter is your rock when things go a rye and god bless her for that gift.
Lauren
My son is 11 now but when he was younger, boy do I remember myself crying. And sometimes I feel like his sister gets lost because she doesn’t understand why he obsesses. Luckily SHE’S a patient kid. I’m getting there and I hope you will too. They need us and yes, we have to be there for them. Let’s all try to be here for each other.
Stephanie Stewart-Morgan
“There’s never a dull moment in your house!” I pray for dull moments.
“She’s such a cutie!” That’s why she’s still alive ? (You’ve gotta have a laugh sometimes, right?)
“He’s so thoughtful and smart!” At home he is the most difficult person to live with that you could ever meet.
“Don’t worry, when he becomes a teenager, he’ll be eating you out of house and home!” No he won’t. He’ll still have Aspergers and he’ll still have difficulty swallowing everything that doesn’t fit his narrow parameters of taste and texture.
“You’d never realise they had autism if you didn’t say.” Try telling that to the people who stare at us when one, or both, of them while they scream and fight above all the noise in a shopping centre. Or spend just one whole day living with us.
Then there are the days we wonder if we even speak the same language as the kids. We too go through days where we think “What is their problem today??” “Is it a full moon?”
And while I’m reading this I hear them both yelling and being so uncooperative for there dad first thing in the morning that he’s wondering if he should even go and play football this morning, leaving them here with me alone. But he needs an escape too.
Only other people who deal with special needs kids really understand what it is like to live this – Every. Single. Day.
I am so grateful for your blog, and that you have a comments section for me to vent just a little on the lives we lead. I have my Facebook as an outlet, but some days that just brings comments of people not in our situation trying to tell us the solutions to all our problems. Sometimes all you need is the written equivalent of a hug. So I’ll send some hugs to you too.
I’m so thrilled for you that your Pledge Music campaign has started at last, because what you are doing is so important. I sincerely hope you reach your target and can achieve all you want to do with it.
And now I must go rescue my husband from certain insanity…
Eleanor Valestin
I could barely finish reading this entry. I just got home from work and my eyes are watering. What a trying day the 3 of you had. I loved how you wrote that you’re little boy is in there somewhere. He is. And your daughter is such a help to you. Thank goodness. I don’t have children and don’t pretend to even begin to comprehend what you go through every day. I just pray you have moments of peace if that’s all you’re allowed right now. I like that you wrote it’s not his fault and you have no choice. It’s not his fault and you do have a choice, you choose to be a loving, protector and safe haven for your children an awesome mother who is fighting the good fight. You’re raising beautiful children and I pray that one day your son will know what you have done for him, what all of you have done for him. I hope both your kids have a successful first day at school tomorrow and you can take a breather for a bit. God bless you … I’m praying for you tonight. Sincerely, Elle
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Alison Peterson
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