Shannon Des Roches Rosa Profile picture
May 14 37 tweets 6 min read Twitter logo Read on Twitter
For Mother's Day here in the United States, I want all you other moms of autistic kids to know that I see you, and that you are not alone.

Thread from:

squidalicious.com/2019/05/dear-o… #autism #Neurodiversity #parenting 1/
I see your joys, and I see your sorrows.

I see you when you are having a tough day yet still manage to interact with your child with respect and kindness.

2/
I see you when you keep your voice calm during crises, because you know your autistic child is extra-sensitive to emotions and they need you to help them keep it together, or get it back together. 3/
I see you when you don't blame your autistic kid for things they can't help, like meltdowns and accidentally breaking things.

I see you when you can't afford to replace the broken things, and you still don't blame your child. 4/
I see you when you defend and protect your autistic child when other people try to blame them for things they can't help.

I see you when you stand up to people who think they can talk smack about your autistic child like they aren't present, and absorbing every word. 5/
I see you when you correct, side-eye, or edge away from people who don't know any better than to view your parenting life or your autistic child as something to pity. 6/
I see you when you are cool with your autistic kid's visceral need to sing, hum, flap, stomp, stim, or line things up, even in public—and you make sure your kid knows it. 7/
I see you when you negotiate with siblings who have a tough time with their autistic sibling singing, humming, flapping, stomping, stimming, and lining things up, because they have their own sensory and neurodivergence things going on. 8/
I see you when you teach your autistic child, and gently remind them, about respecting other people's spaces and sensory needs too. 9/
I see you when you teach your autistic child that their "no" matters, however they express it.

I see you when you just don't go to some places, because they're too stressful for your child. 10/
I see you when you make a hasty exit from places you really thought your autistic child would like, because they turn out to be too overwhelming for your child. 11/
I see you when you retry going to those places that overwhelmed your autistic child a few years later, because your child is growing and maturing and maybe they'll be OK with those places now. 12/
I see you when you visit places you might otherwise not have considered, repeatedly, because they make your autistic child so happy, and when your child is happy, so are you. 13/
I see you struggle after your child's autism diagnosis, because everything is so new and overwhelming, and useful, hopeful information is so frustratingly hard to find. 14/
I see you when family members just don't know what to say after your child’s autism diagnosis, and other parent friends drift away. 15/
I see you when you find parents who also have autistic kids, and who do get what your kind of parenting is like, and help you find the useful, hopeful information you need.

I see you embrace that solidarity. 16/
I see you when you find private spaces to openly talk about your autistic kids and your parenting, and with people who empathize and understand—without judging you or your kids, or violating your trust. 17/
I see you when people say awful things to you about your parenting or your autistic kids, and you shake it off because people who think insults are the same thing as arguments aren't worth your time. 18/
I see you when you cry because mean and thoughtless people talking smack about you or your autistic kid sucks, and sometimes you can't just shake off mean and thoughtless speech. 19/
I see you when you struggle but take the time to listen to other parents of autistic kids who are struggling, too. 20/
I see you when you listen to people who make you rethink your approaches to parenting and autism, even when it's hard to hear you may have made mistakes. 21/
I see you when you realize that your autistic child experiences the world very differently than you do, because you aren't autistic.

I see you when you seek out autistic perspectives to help you understand your child, so you can advocate for them effectively &empathetically. 22/
I see you when you realize that, hot damn, everything is so much easier for everyone in your family now that you have a better understanding of why your autistic child does what they do and wants what they want. 23/
I see you when you have a hard time not because your child is autistic, but because you share some of their autistic traits, and having those traits makes the demands of parenting extra-hard. 24/
I see you when you tell people that, actually, you're autistic too, just like your child—and they suddenly start treating you differently. 25/
I see you when you realize there are really OMG really a lot of other autistic and neurodivergent parents of other autistic kids out there—even if many of them don't realize it yet. 26/
I see you when you reach out to and mentor other parents who are new to parenting autistic kids. 27/
I see you when you're up in the middle of the night because your autistic kid is up, too—and it's hard, but you don't blame your kid.

I see you when you can't help falling asleep the moment you sit down. 28/
…I see you when your autistic kid’s school bus driver then knocks on your door with your kid because you really did not mean to fall asleep and you spend at least five minutes apologizing while horrified. 29/
I see you when you triage matters like laundry and ideally balanced meals because there are only so many hours in the day and at least some of those need to involve you sleeping.

I see you when you decide that a life spent triaging is still a full life. 30/
I see you when you go to the mat for your autistic child's education and accommodations and communication and medical needs, even when those are uphill and seemingly fruitless battles—and even when you are sleep-deprived. 31/
I see you when you never have a day off of parenting, and still find space for laughter and fun.

I see you when you never have a day off of parenting, and wonder how you're going to get through the next few hours. 32/
I see you when you don't have the supports and respite you and your autistic child need and deserve.

I see you when you never give up on advocating for your child. 33/
I see your joy when your autistic child does something "they" said your child might never do.

I see you when you understand and accept that your autistic child may never do some things, and you adapt. 34/
I see you when you make sure your autistic child knows how much you love them, and that you don't expect them to show their love in exactly the same way.

I see you when you learn to see what makes your child happy, and share in their specific and intense joys. 35/
I see you when you stop caring about whatever "normal" means, and start cherishing "happy" or even "content" instead.

I see you when you are your autistic child's safe space, especially when the rest of the world makes being autistic so hard & so stressful. #neurodiversity 36/
..and, to all other mother of autistic kids today, I hope you have other people who see you too, and listen to you, and love you for everything you do for your family. xoxox. 37/37

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More from @shannonrosa

Aug 2, 2022
I think it should be OK to write about our autistic kids. I do. I think other parents, esp. those not autistic themselves or new to autism, need parent role models who do their best to understand & love their autistic kids, & be the parents those kids need them to be. Thread. 1/
(You won't need to unroll; this thread is drawn from a TPGA article titled The Toxicity of Autism Parent Memoirs:
thinkingautismguide.com/2018/03/the-to….)

#autism #parenting 2/
Parent role models are needed bc media messages/social attitudes about autism & autistic people are consistently fear-ridden & awful, so parents primed on autism negativity need guidance for accepting who their kids are—so they can avoid blaming their kids for who they aren’t. 3/
Read 42 tweets
Jun 10, 2022
Tomorrow! I’ll be speaking at @TheSTARInst’s virtual summit on sensory health in autism. Details:

sensoryhealth.org/basic/person-c…

What will we be talking about? Well, I’m mostly interested in creating sensory-friendly homes and environments. 1/
@TheSTARInst Specifically, it’s crucial to understand that we CAN create sensory-friendly environments that allow everyone therein to function best. It isn't always easy, and can mean compromise if there are competing access needs. 2/
@TheSTARInst By placing a focus on how autistic people (and others with sensory sensitivities) perceive and process their environment, and by reframing sensory modifications as caring adjustments rather than impositions, we can create spaces in which we all thrive. 3/ #neurodiversity
Read 6 tweets
Mar 12, 2022
It’s tricky to be a parent advocate in the autism community, especially if, like me, you are not autistic yourself. Autism is about autistic people, & that’s who should be leading autism advocacy efforts. Threading my recent @AutismOAR column:

researchautism.org/what-is-the-ro… #autism 1/
@AutismOAR …But in the nearly two decades since my son was diagnosed, I’ve learned that I do have a role as an advocate: To learn and share and fight for the policies and knowledge needed for my son to live a good life as an autistic person.

#autism #parenting 2/
Parents of autistic people simply can’t avoid being advocates. It is not reasonable to be passive when our loved ones need so much support, & when there are so many roadblocks to getting that support from educational, social, & medical networks that are supposed to provide it. 3/
Read 26 tweets
May 19, 2021
I can’t stress just how screwed most parents of autistic kids are when it comes to finding good info that will actually help those kids and their families live the best lives possible. PLEASE LET ME HELP YOU LIVE YOUR BEST LIVES, and you can start by listening to autistic adults.
And I don’t mean “listen to all autistic adults without any filter” because autistic adults can give mean, awful, horrible advice, just like any randos from a huge diverse group of humans. But let me guide you to the good sources! My son’s and my lives are so much happier now!
To start: here’s what I’ve learned about parenting & autism: After an Autism Diagnosis: 13 Necessary Next Steps For Parents: thinkingautismguide.com/2017/03/after-…

How listening to autistic adults helped me understand & support my son:
washingtonpost.com/lifestyle/2019…

cc: @MelissaFJackso1 @dinacepulo
Read 10 tweets
Apr 11, 2021
When your child get an autism diagnosis: Here are 13 next steps for parents that I WISH someone had told me at the time! A thread, drawn from the @thinkingautism archives, and in observation of #AutismAcceptanceMonth

thinkingautismguide.com/2017/03/after-…

#neurodiversity

1/
After my son’s autism diagnosis, I wished it hadn't taken me so damn long to figure out the best ways to support, help, advocate for, and express my love for my now-adult son—who has always deserved better than a reeling, terrified, depressed, confused, and regretful mom. 2/
I should have given myself more time to recognize my wonderful autistic boy for who he is, rather than what ignorant, misguided people insisted autism made him. I also wish I'd been able to recognize and dismiss all that debilitating ignorance, fear, and confusion. 3/
Read 29 tweets
Apr 3, 2021
Now reading Nobody’s Normal: How Culture Created the Stigma of Mental Illness. It’s a new book by @roygrinker, who also wrote the autism assumptions-challenging Unstrange Minds. Will try to thread my ongoing commentary.

#NobodysNormal
Although Grinker is not himself a psychiatrist, he comes from a line of such professionals, and also studies mental illness from an anthropologist’s perspective.
“Although 60 percent of people with a mental illness in the United States still receive no mental health treatment, mental illness is fast becoming a more accepted and visible part of the human condition.” @roygrinker, in #NobodysNormal
Read 11 tweets

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