After reading my post about profound autism, someone commented, “you don’t deserve children.”
To her, and others, I don’t deserve Charlie because I use the term he was diagnosed with — by a neurologist — to describe his lifelong disability: level 3, severe autism.
As I look at this photo of myself, taken this morning, I’m proud.
I promised Jude a cake for the first day of school, but as an autistic person, going to the grocery store is a daunting task — so much so that I order 99% of my groceries online. I initially ordered a cake through Instacart, but the shopper, unfortunately, drove away with the cake. Story for another day.
This morning, we dropped Jude off at school for his first day of second grade. I didn’t plan to get out of the car, so I wore my freshly-stained nightgown.
Leaving school, I remembered the cake. I had to work at 9, so I had no choice. I had to get the cake, now, in my pajamas.
I pushed through the fear, discomfort, and insecurity and went inside the store in my stained nightgown and full-on bedhead to get Jude the cake I had promised.
I may not be a perfect mom, but I can tell you one thing, I love my children and they’re well cared for.
So when I read comments like hers, it doesn’t affect me personally. But it makes me sad for the parents, new to their journey with autism, who come to social media looking for support and connection and leave with this.
If that’s you, know that what these people say to parents is a reflection of their personal issues, prejudices, and ignorance — not you or your parenting.
We’ve been through what you’re going through. We won’t judge you for using functioning labels, the color blue, the puzzle piece, or anything else like that.
We’re all doing the best we can. And on the days we fail, we’re our own worst critics. We don’t need judgment from strangers.
I promise you, there are many more of us who get it. We may not be as loud, but we’re here. We see you.
7 Comments
Louis Scarantino
2022-11-07 at 1:48 AMYou’re doing just fine.
MomInWA_State
2022-11-07 at 3:04 PMI, for one, totally understand how hard that must have been for you. I applaud you for being brave, pushing past the terrifying, and taking care of your beloved child. I am recently diagnosed Level 1 Autism with Level 1 ADHD comorbidity. I share your struggles! I am actually relieved with my diagnosis because it answers a lot of questions. Now I understand why I do things in my funny little way, and it’s ok! I get to be me, and my children do too. I am coming up to my 54th birthday. My kids are early 20s. Both my children told me they think they are probably on the spectrum as well. We don’t need judgy people. We need patience, understanding, love, and support from our fellow humans. Thank you for sharing this. You made my day!
Thara
2023-02-23 at 6:56 PMI fully agree. In the early days I was overwhelmed and that was when I was still pregnant with my piglet. My piglet was born with spina bifida, clubbed feet and very poor bladder function. The main issue back then was that I was experiencing information overload. Even after she was here I still felt like I was drowning in crap. Some days were pure hell while so many others were bliss.
The day when I gave birth was a mixed bag of feelings. I was still out of it as she went into the operating room early on day two. It was first thing in the morning and she was to have the first of many operations. My other half saw her come back out of there later on.
What followed was a two week stay that was planned in addition. The goal was to look out for any expected health issues and treat her accordingly. It was hard for both of us. And I took a short while to recover myself. So did my other half.
She was much luckier than other children with the same condition. Since she did not require surgery in order to place a shunt I felt happier. But only for a day or two. We were cleared and sent home one afternoon when she was a little over two weeks old. They kept her under close observation until then as a wise precaution.
I even maintained a diary of my own feelings. On the day of her actual discharge the hard work really commenced. We were on our own. For a few hours I floundered. Then I slowly and surely bounced back.
Despite all the medical appointments and therapy sessions I smiled at her at times. It was fairly easy to be her mother. Spina bifida, bladder issues and clubbed feet did not define her or destroy us. Far from it.
Nina
2023-03-01 at 10:25 AMYou deserve everything you want. Dot
Max the Know better
2023-03-31 at 8:50 PMI think mums aren’t perfectly informed about autism, what a load of shit, you want to abuse autistic people and the dad says, “don’t abuse my autistic son”, there are some bad people in the world who want to rape and abuse you because you’re autistic, autism makes you want to harass autistic people, autistic people’s intentions are simple: they’re not just being nice, but daring to do what people hate, deliberately, and deliberately daring to do what you’re afraid of, yes, autistic people obviate everyone’s opportunity to have an interaction other than grounds for autistics humiliating you in your face out of hate, they wanna laugh at you, do you think autistics are soft? If you do abusive or antisocial things you’re likely to be autistic, they’re not very good moralists, autistics are often arseholes, you feel like a victim of extremism from autistics? I feel that way too, they tend to overdo things, of partying with you, at you, not for you, autistics tend to overdo it. Isn’t it very very disabled the way autistics behave like arseholes?
Nikki
2023-04-07 at 5:22 PMNot sure what I read there as made little or no sense to me.
I’m AuADHD (with MS to boot). I know a lot of neurodivergent people of all ages, and I don’t recognise anything in my experiences in what you’re ‘sort of’ describing.
Maybe you can elaborate a little more clearly what you mean or what point you’re trying to say?
Debi Kellner
2023-04-23 at 3:35 PMEileen, you are simply a breath of fresh air! Love your stories, views and overall writing style.