'If you love him so much, why did you let him get fat?'
Why social media can be so awful sometimes.
Hi, my name is Kate.
I am married, have four children, and live in the Midwest. My kids are 12, 10, 4, and 1. Three boys and a girl.
My oldest has a diagnosis of severe, nonverbal autism. Although, if you ask me, he’s pretty chatty these days.
(He just got off the bus and asked me to go on the boat.)
I started blogging 10 years ago. I can still remember the feel of the green couch on the back of my legs as I said to my husband…’I started a blog.’
‘What did you name it?’
‘I’m not telling you because I don’t want you to read it.’
Seriously, that’s what I said to him. I wanted one place I could be completely honestly and vulnerable.
I named it Finding Cooper’s Voice. A name that I thought was so witty. Because before I knew it was autism, I thought my son ‘just’ had a speech delay. I thought we just needed to ‘find’ his voice.
Flash forward. I turned 40 years old this past month.
Finding Cooper’s Voice has become my passion and world outside of being a mom. I want to help families like mine, specifically mothers. I don’t want any mom to ever feel as alone as I did in those beginning years.
I just hosted a retreat for 285 women in Minnesota.
I wrote a national bestselling book called Forever Boy, A Mother’s Memoir of Autism and Finding Joy.
I started a nonprofit called The More Than Project.
And I reached a million followers on Facebook.
I share all that not to brag. Not at all. But to show that it can be done. To remind you that the things that almost break us can turn out to be absolutely amazing.
That we as people can do hard things. We can help others. We can inspire others too.
And to remind you that I am human. A simple old plain human. A mother. A wife. A daughter. A sister.
And that I too can be broken.
I don’t like to give space to negativity. And if you know me in real life, or are part of my subscriber group, then you know I work very hard to cultivate a positive space.
But lately, gah, the world seems to be closing in on me.
My son Cooper, he is 12 years old. He is on medication for anxiety and ADHD. The meds that he is on have significantly changed his life. (This whole story is in my book so for real, if you haven’t read it…you need too!) After being on medication to curb his anxiety, he sat for the first time…ever. Like, ever, ever. My husband and I both cried as we sat with him. He was wearing a red fleece shirt.
The light came back to his eyes as his anxiety lessened. He began speaking and communicating. He started joining our family for dinner and pool parties. He started seeing the world in a new light.
And throughout it all I have shared our family’s story on our Facebook page.
'If you love him so much, why did you let him get fat?' That’s what the comment said last week. It wasn’t the first. And it wasn’t the last.
There is a saying that goes…never complain, never explain. But I am going too. For once, I am going to explain. Because I am just so tired.
With the medication that my son is on, came weight gain. Which, I guess, can happen. It happened fast and all at once.
With the light in his eyes, the return of laughter, the joy, the light, he gained weight.
We, as his parents, are very aware. And we are doing what parents do. We are keeping him as active as we can. We are encouraging healthier food choices. And so on. His health is very important to us.
But the weird thing is…with the weight gain came this online bullying. From adults. People stopped seeing him as a boy and started only seeing his weight.
As if his value as an autism self-advocate only matters if he is thin.
Which is absolutely ridiculous. I don’t know why his appearance should matter but I guess that is the world we live in.
I want to scream, fire back, angry fingers hitting a keyboard, that he can’t help it.
I sometimes contemplate quitting. I think about shutting it all down and living a simple life without social media.
But every single time, I think…this kid, my kid…he is changing the world just by being himself.
He is shattering stigmas. He is spreading awareness. He is encouraging acceptance. Hiding him would be wrong.
I am sharing all this, right here, because I just hope that we can all do better. That kindness can be at the center of our lives.
Thank you all for being here. Hopefully, this page, my son, the yellow-haired boy from Minnesota with Autism, inspires you to be a better person. Because he does that for me.
Kate
I can relate so strongly to this. Not because of weight--my son couldn’t gain weight if he tried-- but because he has the Pathological Demand Avoidance type of autism. He’s 20 now, and while it still pops its ugly head up now and then, he mostly keeps his oppositionality under control. Because he has a job. And those two things don’t go together. (Although I did have to teach him certain things that I knew he wouldn’t intuitively understand, like “If your boss asks, ‘Do you want to come learn how to do X?’, he’s not really asking.”
Back to the point...all the years of mouths hanging open at the way I “let” him talk to me, or the way I “let” him act. All the judgy eyes thinking, “Give him to me for two weeks, and I’ll fix him!” And me thinking, “Do you really think I’d live like this if I had a choice? Do you think this is fun for me?”
NOBODY understood that my son’s sole purpose in life when he was young was to prove to the universe that, “You’re not the boss of me!” And not one person understood that there are few things more terrifying than having a child who doesn’t give a flip about rewards or consequences.
We’re in a good place now. Don’t get me wrong; he’s still autistic. But he has enough self control to “pass” enough to hold down a job.
So I feel you. When people don’t understand that you love your child to pieces and are doing the best you can. And the ignorance of believing that your choices don’t come with some degree of give-and-take.
If it makes you feel any better, once our son was too big to brush his teeth by force, there was nothing on earth that could make him. So last time we went to the dentist, he needed a crown and 15 fillings. We told him he had to pay half. And now he’s become quite diligent about oral hygiene. 😊
Cooper is absolutely perfect just the way he is! I love his twinkly smile and his blankets and his blond hair!! You are an amazing mom and please, please don’t let anyone shame you. You’re doing great Kate! Thanks for your inspiration!