Posted in musings

because it is good to belong somewhere

One of my favorite things about our church is the group of people I’ve gotten to know through the special needs branch of the kids ministry (called Equipped, for future more succinct reference). I’m not one who ever really feels that I belong in any particular group, but it comes close here – at the least, I feel like here are people who desire to understand and support our whole family, and who have a solid foundation and similar experiences on which to build that understanding and support.

To provide a concrete example of what I mean, I skipped our small group’s Christmas get-together (familiar people, familiar place, convenient time of day) because I was worried about the social expectations involved; but I jumped at the chance to go to the Equipped Christmas party (only some familiar people, unfamiliar place, inconvenient time of day) because I knew that whatever behavioral issues came up we would be unconditionally loved and accepted, and because I knew there would be other people there like us potentially dealing with the exact same behaviors and struggles. To be not alone, and for one’s difficulties to be understood and normalized, is an incredible gift.

I think it is for this reason that minorities and people with other differences often find themselves isolated from what could be called the mainstream culture (it may only be mainstream relative to a certain location or culture subset, of course). It is just so much more comfortable for any human being to be around people who are similar to them, with whom they can connect across some significant differentiating and identifying characteristic – and for people who are typically outnumbered or alone in those key characteristics in everyday life, a chance to not be the odd one out is like a breath of fresh air.

It is of course good and important to know how to live in mainstream culture, and it is at least as good and important to understand minority cultures of which one is not a part (I am always thankful for every person who tries to understand autism instead of judging or ignoring it, who isn’t offended by my refusal to participate in Sunday morning “greet your neighbor” moments for instance!), but it is also good to find a place where you can be yourself – and as a parent, to connect with a community where your child can be themselves around other children like them, so they too can have a place and time to no longer feel different and alone. And that is the gift that my church is striving to give to her children with differences and disabilities, all these neurotypical parents seeking to understand and support their children instead of forcing them to hide their true selves and appear “normal”, and it is (even incomplete and imperfect) a beautiful thing.

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:

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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.

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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 family life

park remodels and random thoughts about playgrounds

Our hometown recently updated one of the city parks in a more disability-friendly way (if you’re local, check out this article for more details!), and since it had been one of our favorite cool-weather parks last year we were excited to see how it had been transformed over the few months it was out of commission. Of course the ducks and the library were still there, so it’s hard to go very far wrong…

While none of my kids have physical disabilities right now, several of my friends have siblings or children who do, so accessibility is something I try to be aware of (although I obviously don’t have the personal experience to really evaluate whether or not something is truly accessible). It’s also something I want to encourage and seek out, so that my kids don’t grow up feeling uncomfortable and awkward around people who are physically different than them. If they grow up playing at the park with people with disabilities, it’s just going to be another permutation of normal in their minds, which is exactly how I think it should be.

(One of my favorite moments with Rondel at a park was about six months ago, at the big splash pad near our home, on a Friday morning when a group from a facility for severely disabled individuals came to enjoy the water as well. One older teenager was just sitting in the water, under the spray, splashing with his arms and laughing and laughing, a look of pure happiness on his face. Rondel watched him for a few minutes, then sat down in the water a few feet away and started doing the exact same thing. To him, there was nothing strange about seeing a “big person” acting like that – it was just another way to enjoy the park, and one he could enter into and enjoy also.)

Anyway, the new playground has a few attractions specifically geared toward children with physical issues – a zip-line that has a seat and harness instead of just a pole to hang onto, ramp accessibility on the play structure, a two-person swing, and rubber matting over a large part of the playground so wheels don’t get stuck – but it also has a lot of generally fun things for any kid to engage with: slides, ropes, ladders, a sand table/digging area, and so on. We’ve been there twice in the past couple weeks and had a great time on both occasions.

Rondel particularly appreciates the seated zip-line – he hasn’t mastered holding on to the more traditional seat, but he loves zooming back and forth:

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Seriously, the kid just can’t contain his laughter every time he soars backwards on that seat!

Limerick was a bit more apprehensive of the zip line (he liked it, but at a slower pace), but he loved the sand and the ladders:

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There is only one small sand area at the park (so it can easily be avoided if you don’t like the mess or if your child has sensory issues with the sand), and it only has one digging shovel – both times we went, we brought our buckets and shovels, and they were much appreciated by the other kids at the park. The other non-rubber areas have wood chips.

They also have a neat piece of equipment I hadn’t seen before: basically a series of rolling plastic tubes underneath a sort of tunnel of railings. The little kids were scooting and crawling over the rollers underneath the railings, and some of the bigger kids were holding onto the railings and “running” on the rollers with a sort of treadmill effect. Limerick went though that one over and over again:

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I like the random playground equipment that, unlike ladders and slides, doesn’t have an obvious “right way” to be used; I think it facilitates open-ended play and experimentation, and it cuts down on all the parental rules for play that I notice every time I go to the park (at least at parks with attentive, hovering/engaged, middle-class white parents… the parks by our home, in much poorer neighborhoods, are far less parentally supervised).

Anyway, I think the changes at this park were for the better, and we’ll be coming back to play, feed the ducks, and maybe even do story time at the library! If any of you are local, it’d be a great place to meet up and spend a morning getting to know each other.