I am just steamed this morning. Nothing like waking up to see 250k special needs moms being ableists and wallowing in ableism.
Have you seen it?
First, it started with a viral post about “The Last Time.” About how when you have a kid, you’re just cruising through life, raising your kids, and then you don’t realize that you’ve done something for the last time.
I get it. My 8-year-old is turning 9 in a few weeks, and Timehop is not my friend lately. It pulls on your heart to see those Facebook photos you posted 7 years ago.
So an autism mom felt the need to post a response video.
And it’s about “the last time you think it’s going to be ok.”
I could barely finish watching it.
Ableism and Ableist Autism Moms
It’s ableism at its finest. I hate when parents are ableist–my heart hurts for the kids in that household.
What is ableism?
Ableism /ˈeɪblɪzəm/ is discrimination and social prejudice against people with disabilities. Ableism characterizes persons as defined by their disabilities and as inferior to the non-disabled. On this basis, people are assigned or denied certain perceived abilities, skills, or character orientations. Discrimination faced by those who have or are perceived to have a mental disorder is sometimes called mentalism rather than ableism.wikipedia
She talks about how she thought he was going to have a career. How she struggles to take him out into public. It makes me sad for her son.
Imagine crying over your child’s very existence.
That’s what she’s doing. Crying over who he is.
Look, I get it, I’ve seen it, been invited to the party.
When I was discussing prenatal testing with the OB nurse, she said to me (as far as an advantage to having the testing done): “It gives you the chance to mourn your typical child and prepare for life with a special needs child.”
Imagine that! The medical community! That I should mourn my child, simply for who he is.
I have had lots of looks, whispers, and all kinds of unwanted advice out in public. Who cares? I don’t give a sh!t what strangers think of my family. They haven’t spent a day in my shoes.
Oh, woe is me, crying over my kid because he can’t talk.
Seriously moms, if we want to change the world for our kids, it starts with us.
Guess what? It IS going to be ok. It’s just going to be different. Think about this. You are telling your kid “this is the last time I thought it was ok.”
What do you think a child hears? What do his siblings hear? That he’s not OK?!
“Your autism is not OK.”
That is the message that they are going to hear. That’s what relatives, neighbors, siblings, everyone….that’s what they are going to hear.
…… I am not saying that anyone is necessarily good or bad for feeling something. What I am saying though, is that grieving for your living child is a product of ableism and a product of hatred of the disabled. It is not innate and I also don’t believe it is a healthy thing for families and the disabled people within those families. Feelings about disabled children don’t exist from within a vacuum, but from within an ableist society that devalues them from birth and that teaches others to do the same.
We already receive the message that society considers us defective, doesn’t want us, and that we are an inconvenience to everyone. Why would it be good for disabled people to hear how disappointed our parents are with us? Why would it feel good or be helpful, to have our lives held up next to a dead person’s and contrasted for similarities? Messages that their lives are inherently less worthy than those of their non disabled peers, are something that disabled children are likely to hear for the rest of their lives (and unfortunately probably have already heard, realised, seen, or learned). Why would we begin that at home, in the place where most children get to be loved and comfortable and accepted?Grief isn’t “natural” – it’s a product of ableism
Cry over medical conditions. My son has a life-threatening seizure activity that makes me quite sad and stressed. But I refuse to cry over his autism, his intellectual disability, his inability to speak or whatever else.
He is who he is, and I will celebrate every moment that I have with him. Even if our celebrations look different for yours. I don’t care what society thinks. Hell, right now I have an entire community searching for him comfort item that I lost over the weekend. It’s a doll. Yep, an 11-year-old boy carries a doll everywhere we go, and I lost it.
I don’t care what people think. I just want to find the damn doll. If you have a problem with a boy carrying a doll, that’s your problem, not his.
Ok, rant over.
Addendum, February 27: I want to address a few things.
- I still stand by my assertion that this video is ableist. You can disagree, I’m ok with that. I’m confident in my opinion on this.
- I’m not telling her how to feel. Re-read the quote in green, the second paragraph of it. I’m not telling anyone how to feel. I’m telling her that what she is saying is ableist because it perpetuates negative stereotypes about autism.
- My support for other IEP moms is not unconditional. When I see ableism and negative stereotypes being spread about kids like mine, I will continue to call it out as I see it.
- No, I’m not a hypocrite. I said quite plainly, “I’ve been there.” Until someone gave me this kick-in-the-pants reality check about ableism. You will find ableist language on this blog, much of it crossed out and edited. Not erased, because it’s about personal growth. I am trying to learn and get better, for my child. Unlike the thousands of others who have their hands over their ears while they cry crocodile tears with this mom.
- I do not accept comments on my blog, that is true. However, it is not because I am afraid of other opinions, it’s because I am flooded with personal IEP questions daily. When I ignore the questions people left in the comments, I am called rude. However, there simply are not enough hours in the day for me to answer them. So I funnel people to the forums where they can get assistance.
- I love my readers and I love helping moms, my followers know that. If you are going to base your opinion of me based on 900 words, that’s your choice.
You’ve got to accentuate the positive:
From Heartsong of a Hummingbird
I’m going to put this out there for everyone because I’ve had a couple of people send me a link to a story they thought I would be interested in from an autism Mom that is circulating Facebook right now. Her page has about 100,000 followers and she’s been in the public eye a lot recently.
First of all, this video makes my blood boil. This is a page that appears to be an advocate page, but it’s not. That maybe this mom’s intentions, but what she is doing is taking all the work that the autism community has done to break down stereotypes and stigmas about our kids and making them appear true.
I have seen several of this page’s videos and in large part, they all have the same underlying message.
That this Mom is the VICTIM of her child’s autism. Everything is about how sad life is and how much she is missing out on.
Mourning a Child who is still alive is ableist. Full Stop.
She whines and cries in EVERY video…
Don’t get me wrong, we all go through a very emotional process when our kids are diagnosed. We get angry, we cry, we try to figure out how, we research and we learn...but most of us don’t stay in that place of darkness. We can’t. We have kids that need us more than ever.
MOST OF US grow thick skins and stand up and advocate for our kids. We learn what every single speck of emotion looks like on our kids. We learn to read them and anticipate their moods and ability to be in society.
The example she uses many times in her videos are how her “severely autistic nonverbal” son acts in crowded public places. She complains about how hard it is to control her 65 lb child while waiting in line or being at a big event.
Honey, your child is quite literally screaming and flailing and giving you every single NONVERBAL cue he is capable of giving you that this is not an environment he can handle.
STOP TAKING HIM!
It doesn’t make your family a victim of his autism. There are neurotypical kids that can’t do those things. Listen to your kid! Communication goes way beyond words. You’re setting him up for a huge sensory overload and several hours, of not days, of recovering and you’re giving yourself a new video to cry through. It’s pretty obvious to me who the victim really is.
I will be the first to say that autism parenting is exhausting. It’s hard EVERY.SINGLE.DAY. But by no means does it EVER make me a victim.
One thing every autism family faces is the periods of regression. We work and work and work and then BAM! Suddenly our kid is refusing to talk, or doing behaviors we haven’t seen for ages, or refusing to eat, or completely losing their mind in the middle of the store.
It’s a part of our life. It sometimes ruins plans or prevents us from doing things we planned to do. It doesn’t matter if they are 4, 17, 34 or 65. Regression happens-A LOT.
But I, as Tadum and Lily Ruth’s Mom, am not a victim of it. I don’t want people to feel sorry for me or them. I don’t want them to pity the life we have. We have bad days. We have bad weeks. Sometimes we even have bad months or seasons! But never will I ever claim to be the victim of my child’s autism.
The second thing in this video that just burns me up is the message this Mom is promoting.
To just give up.
In the video that I saw today that is being promoted by a HUGE media outlet, she admits she’s given up. Her words were “I cried the whole way to work today because I have shifted focus with my son. I’ve given up praying that he would become a doctor or lawyer and I’ve now began to focus on quality of life.” Are you serious?
You just told your kid on national television that you’ve given up on him? That instead of continuing to fight for him, you’re just going to do what you can to make him comfortable in life. You are his mom! His number 1 fan. The driving force behind every dream he will ever have. If you don’t believe he can, why should he?
Parenting is tough. Autism parenting is downright brutal, but don’t ever ever ever give up. And don’t group me into your message! Don’t start your videos with “I think this is something that all autism parents understand and can agree with” because I don’t.
I tell my girls EVERY SINGLE DAY that the sky is the limit for them! They can achieve whatever they put the work into do! I don’t go out of my way to make life comfortable for them.
I don’t give up on their abilities because they have deficits. God didn’t give me my children to give up on them or gain 15 minutes of fame playing victim to their autism!! I face the realization every day that 2 of my children may never be able to leave home.
They may need assistance for the rest of their lives. That we may need to create jobs for them to be able to be productive members of society. And I will do all that an more for my kids. I do it because they need me to do it for them. Tadum is where she is today because even when I have been told to give up or give in, I haven’t. It’s my job as their mom!
So please, please please do me one favor. Don’t think this woman speaks for anyone other than herself. Most of us think and feel that complete opposite of what she posts.
She is not representing us as a whole. Most of us are advocating for our children, not being victimized by a condition. If you would like a list of pages that are truly advocating for kids on the spectrum and to really see what life with an autistic child is about, I’ll tag some pages in the comments.
Edited to add: I am a single parent with 4 children, 2 of which have special needs. I fully understand that sometimes you have to take your children places and meltdowns happen. I know that no matter how much preparation you do, sometimes it’s just not enough. What I am talking about above is purposely subjecting your kid to places that are optional, like going to see Elmo or similar places, that you know will have triggers and cause unwanted behaviors.
My oldest daughter and I run an autism page, Heartsong of a Hummingbird. We are real with our friends, Tadum affectionately calls them her “nest watchers.” We show all aspects of her autism and other co-morbid conditions. As she is getting older and learning to advocate and communicate for herself, I am turning her page over to her with strong supervision.