Posted in family life, musings

parental ableism

It is hard to be a child. It is hard to be a parent.

It is harder still to be a child with a disability – to be noticeably different from the world while still having to find a way to live in it, to be growing and developing on a different timeline and watching younger friends and siblings attaining higher skills, to be unable to participate in “normal” activities and events. And it can be harder to be the parent of a different child as well: there is the pain of seeing your child left behind, isolated, excluded; there is the sorrow of knowing certain paths are closed for them; there is the hurt of watching them hurt, physically or mentally, because of their condition.

Anyone who denies that parenthood can be difficult is delusional, but in the autism world there is a subset of parents who twist their children’s difference into a curse, who portray themselves as martyrs and who thus by implication make themselves out to be the victims of their children’s autism (and, since autism is an integral part of a person, victims of their children). I haven’t had much contact with these parents, and I am not sure how large of a group they are though I have read about them often on neurodiversity advocacy websites, so I didn’t have the inoculation of experience to protect me when I opened up Pinterest and saw this image at the top of my home page:

badparent
White words on a gray background: “I have a child with Autism. Everybody sees his struggles, but nobody sees mine. It’s hard to be screamed, yell at, every single day. It’s exhausting listening to him cry every single day.”

This parent is clearly feeling resentful of their child. They see their son struggling, and instead of responding with compassion they just resent the burden that those struggles impose upon them as the parent. (So while they “see” their son’s struggles it doesn’t seem like they are knowing and understanding their son in his struggles.)

Well guess what?

Your son didn’t ask to have a parent who doesn’t want to hear his tears with love, or to help make his environment safer and more accepting so that he’s not continually triggered to tears and screams, or to view him with compassion and understanding.

Your son didn’t ask to be born autistic in a world that values normalcy and conformity, especially in children, who are expected to walk in obedient lockstep through the typical developmental stages and the standard grades of school.

And I can guarantee you that your son doesn’t want to scream and yell at you all day long. Every child – yes, even autistic children – want to have a relationship of peace and love with the people that they are most closely tied to. His behavior is how he is communicating to you that something in his life is horribly, terribly, wrong. He could be non-verbal and in physical pain he doesn’t know how to communicate or address (like my friend’s son often is). He could be overwhelmed by an uncomfortable sound or smell or feeling, and be unable to handle that sensory input on its own or in conjunction with some other social trigger (like my son often is). He could be in ABA training for hours each day and have no other way to tell you that it is sucking the life out of him to be forced into a neurotypical box where he knows he will always fail and always be judged.

Maybe you, as the adult in this relationship, need to address the anger issues you have with your son’s autism before blaming him for the way you are reacting to his attempts to communicate with you. I understand that things can be hard, but it is never appropriate to shame your child for his struggles on the most public forum possible (the Internet), and it is incredibly immature to add to that by insinuating that your struggles are all due to his inability to be a normal child, that you are some sort of martyr for putting up with him. Get the support you need, and check your attitude, in a private community where your child’s dignity can be protected and respected.

goodparent
White words on an orange background: “AUTISM. When I have a hard day I know he’s had it harder.”

I love this second image so much because it acknowledges that both parents and children will struggle without victimizing either of them, without an attitude of resentment towards either of them, and with respect and tenderness towards both of them. (And it puts it so gently too!)

Like I said above, the hard and difficult behavior of a child, especially a child on the spectrum, and even more especially a non-verbal child, is a method of communication. Their needs and wants and struggles will show up in the way they act, and while their behaviors may be particularly challenging for a parent to deal with, they are a symptom of something deeper that is wrong.

And if you are that parent, faced with those challenging behaviors, feeling at the end of your rope, unsupported in your own struggles, please find help, and please do not blame your child or their autism for your struggles. Honestly, blaming anything only leads to more resentment. Try to see those behaviors as a clue to finding the best way to support and help your child. Try to see your child as fully human and fully deserving of respect and dignity despite their struggles and the struggles you have as their parent. And try to remember that no matter how hard your day is – as a neurotypical adult in a world set up for the way you operate – that your child’s day – as a neurodivergent child in a world foreign and alien to the way they operate – was almost certainly harder.

Posted in sqt

{sqt} – a very random list of things

I’m linking up with Kelly again today and I have no theme at all! Proceed for seven very random facts about myself and our week, some of which (say, 1 and 3 maybe) may explain my relatively low posting volume this week.

  1. Slightly embarrassing confession: I really like reading Harry Potter fan fiction (especially about the Marauders)… some if it is quite well done, and it’s basically like reading short stories about characters I kind of know in a world I’m already familiar with and it’s so good to be back in that world exploring it more.
  2. Another confession: I love reading books that make me cry. And nothing makes me cry more than the fumbling attempts of imperfect human love and compassion to console and heal people broken by the world. Like, a story where someone is finally finding a place where they belong and are accepted after years of feeling alone and inadequate and unlovable? I’ll be sobbing all over the place and I’ll reread it at least three times.
  3. We have been doing so many fall things that we almost burned out this month – multiple hikes up north, two different local pumpkin farms, picture books, pumpkin faces, pumpkin painting, fall-themed finger-painting, fall-themed play dough… it’s getting a bit excessive. I suppose we are simultaneously relishing the colder weather that makes it feel like fall and making up for the lack of traditional autumnal colors 🙂
  4. I’ve been avoiding Facebook because it’s been making me angry, and I’ve been hanging out on Pinterest instead. But then today Pinterest made me angry too 😦 I’m going to try to write about it this week (update – here’s the link) because I think it is an important point and not an irrational emotional response. Short version? Don’t act like you are victimized by your kids. There’s a difference between having a hard time as a parent and throwing your kids to the Internet wolves like it’s their fault for existing and having struggles.
  5. Rondel found a kangaroo Halloween costume he loved back in August… and he’s already outgrown it! He requested butterfly wings instead (because he glanced at my Pinterest and saw them) and chose a species called the Royal Assyrian from our Eyewitness book on butterflies. Neither of us felt comfortable just making up a butterfly; we both felt much happier looking up a real one. It wasn’t his first choice but it was his first choice that didn’t have black on it, since I have yards of felt in about 10 different colors but for some reason have no black felt. It is brown and purple, so it isn’t especially vibrant or bold – but he does want to add purple glitter so that should brighten it up. And it just makes me really happy that he can have all the fun of bright sparkly colors without someone telling him that purple glitter is for girls.
  6. For anyone else wanting to make butterfly wings or similar crafts with felt, I strongly recommend using a glue gun and I strongly recommend not using ModgePodge. I mean, unless you want your felt to become stiff and hard and not reliably stick together…
  7. And finally: it is not safe to let me into a craft store without a defined list and a spending limit. I went to buy a glue gun and pom-poms today and came out with pipecleaners, googly eyes, and a coloring book as well. (And the 300 pack of pom-poms instead of the 6 pack which is really all I needed, because they’re just so cute and fluffy and the kids will love them and pom-poms will be everywhere!!! My husband is horrified.)

I hope you all had a great week! Are you excited for Halloween? Are your costumes ready or are you in the midst of last-minute creations like we are?

 

Posted in musings

on giving advice

The longer I parent, the more radical my parenting style and ideals seem to become. I’ve been heavily influenced by the concepts of respectful and trustful parenting, to the point where I’m leaning towards unschooling and trying to lead as a guide and experienced companion instead of attempting to direct and control my children. My emphasis is on connection and understanding, and I’ve put down some hard lines for myself on the topic of punishment. And I’m far from perfect in my implementation of these ideals, but I really do think they are best for children.

The awkward moments come when a friend will post a general plea for advice on Facebook. How do I advocate for respectful parenting and try to point out the child’s needs and perspective without sounding judgmental of a person who I know loves and sacrifices incredibly for her children? Worse still, what do I say when other friends are framing developmental struggles as sin and normalizing spanking? Diplomacy is hard when it comes to things I believe strongly…

One thought that’s been helpful for me lately comes from the Catholic side of the aisle: the concept of an age of reason, below which children (though still imperfect and marred by the human condition of original sin) are not culpable of sin because they lack the capacity to understand or control themselves for simple developmental reasons. It helps to see one’s child as a learning, growing, incomplete being instead of a defiant, rebellious sinner. Unfortunately I’m not sure how to translate that idea for my Protestant friends!

How do you all handle situations where it’s appropriate to give advice (like a generic request for suggestions) and you know your parenting principles differ significantly from the person asking? I generally just try to gently plant alternative ideas without getting too radical but I wonder if I should say more…