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 family life

the rainy remnants of rosa

The Phoenix area was hit by the remnants of Hurricane Rosa, a category 4 hurricane, this week. My dad, who is from Miami, was going around humorously asking everyone if they were ready for the hurricane, but of course by the time it got to us it was just a big rainstorm. Still! A big rainstorm in October isn’t common, and this storm actually gave us the rainiest October day in Arizona recorded history (which goes back, in terms of weather records, to 1895). Even crazier, of the top ten wettest days in Arizona, this was number eight and was the only one that my kids have been alive for (except for Rondel, who was just over one year old when we had the wettest recorded day in Arizona history).

 

So what do you do when there is more rain coming down than you have ever seen in one day in your entire life?

You drop everything else and immerse yourself in it, of course!

My two adventurers were out in their pajamas by 7am (I mean, why get dressed only to get immediately soaked and need to change?), and must have stayed out for at least an hour before they decided they needed to eat breakfast. And after breakfast they were right back out in it, with Limerick this time (but in their underwear, so no publicly shareable pictures unfortunately). Limerick found the big hole in the yard that was completely submerged and hidden, pulled the toy car out of it, and measured how deep it was on his legs (almost to his knees); Rondel pushed Aubade around the yard in the rescued car until it got stuck in the mud.

I learned that one of my children likes to get extremely muddy, one likes to get extremely wet and can handle the mud along with it, and the third somehow manages to stay almost clean even in a mud puddle and prefers to remain at least somewhat dry.

Aubade is, obviously, my mudlover… she is completely in her element when she is outside getting dirty, and I hope she never loses that. Limerick gets cold so easily that he preferred to sit just inside the house or under the patio overhang, learning how to multiply two-digit numbers with my mom while I hung out with the mud babies 😛 But we all loved it – and there is rain in the forecast again next week so maybe we will get a repeat!

Is rain a normal occurrence or a special event where you live? Do you love it or tolerate it?

 

Posted in family life, sqt

{sqt} – solo parenting, friends, and broken AC in the summer

It’s been a different sort of week over here! For the Seven Quick Takes link-up with Kelly, here are some of the highlights:

  1. Limerick has been so tired, every day. We went to the zoo on Monday at his request, and he was so tired that he asked to go home every 30 minutes. He napped on Sunday and Monday (which he never does), and has been so tired in the evenings that he struggles to get through swim lessons despite loving and enjoying them. I don’t know if he just isn’t sleeping well at night, or if he has some sort of vitamin/mineral deficiency (thinking about iron specifically). He also hasn’t been eating much, but that isn’t a new thing; compared to the other two he has never been a big eater. His four-year well check is in just two months so for now my plan is to try to get him in bed earlier and facilitate naps when possible.
  2. Paul went up to Prescott for his first business-related trip this week! He even got to deliver a short presentation at the conference! Aubade is definitely missing him though, and while it sometimes seems like the boys don’t care whether he is here or not, Rondel has told me several times that he wishes Daddy were back. There’s something special about getting to share everything with him at the end of the day when he comes from work.
  3. Corollary to take 3, I’ve been doing bedtime for all three kids instead of splitting the responsibility with Paul; the first night Aubade got to fall asleep on her own while I put the boys down, and the second night the boys got to fall asleep on their own while I put Aubade down. I can’t recall any previous night where I have left their bedroom and they have fallen asleep without tears or trying to follow me out, but this time they were out in less than fifteen minutes without any complaints. It was amazing (and so needed, as Aubade was having a really hard time).
  4. We had a playdate with a new family I met online through an unschooling group! It was really neat to watch Rondel running around with a kid around his same age, both of them being monsters and hand-flapping and trying to climb crazy rope ladders and getting scared and not really talking to each other but definitely playing together. A couple weeks ago a younger girl we know from church made a comment about Rondel chewing on his shirt (it’s one of his stims, and a pretty innocuous one honestly) and that being kind of weird or gross; this new friend didn’t see a problem with it at all (and in fact I noticed her experiment with chewing on the collar of her shirt as well). So that was also really encouraging to me, as I’m trying to find friends among whom Rondel can fit in while being himself.
  5. Random thought of the week – why do so many people make such a big deal out of autistic kids lining up their toys? I mean, is it really so strange? I think some behaviorists see it as “abnormal” play, or play reflecting a lack of imagination, but I don’t know how accurate that is. I know when Rondel lines up his toys, it is usually because they are on some sort of migration. I also know that my mom used to line up toy cars and drive them on parade as a child, and that my daughter likes to line her toys to display them – and they are both neurotypical. There is just something so nice about a line, especially as opposed to a pile…
    IMG_0624
    image is of a blond toddler sitting on a curb against a wall, head turned towards a line of toy Triceratops also on the curb. She was very particular about only selecting the Triceratops from the dinosaur box…

     

  6. Both boys mastered the “l” sound and the “tw” sound this week! When they are counting, eleven and twelve come out far clearer than before. I am so proud of the effort they’ve put into it, and they are so pleased with their newfound ability 🙂 Rondel still has moments where he doesn’t want to try to say sounds the correct way, because it’s hard and he thinks he can’t do it, but he tries often enough that he’s improving. Limerick tries no matter what, and he’s improving in leaps and bounds. Hopefully soon they’ll have their pronouns completely straightened out as well – it really confuses strangers and other children when they use “you” to refer to themselves.
  7. We had one random day of rainy cool weather this week – the high was in the mid-80s instead of around 100 where it has been hovering – and very conveniently our AC decided to break that evening after everything was cooled down already. It was rather dramatic: I was out back playing with the boys after sunset, when we heard a loud pop and saw sparks on the roof. I tried to turn on the AC to test it (and to bring the temperature down from 83 to 80 for bed), and nothing happened. It turns out a poor-quality wire had been rubbing on a piece of metal long enough that the insulation wore away and the humidity in the air enabled an arc to form between the two, shorting the wire and blowing a fuse. Fortunately, since the highs are going back up to 100, it was a quick and easy fix and we had AC by the time the external temperatures reached 90. But, as the AC repairman warned us, it is an old unit that has had some shoddy repair work done in the past, so we’ll most likely need to replace it in the next 2-3 years. Ah home ownership 🙂

I hope you all had a great week, whether it fell into the swing of your normal routines or stretched them a bit out of shape! And I hope that you are finding friends – or keeping friends – who love you and accept you just the way you are. Those types of friends can be hard to find, and they really are as precious as silver and gold.

Posted in family life

settling in

Sometimes your neighbors courteously allow you to feel like you might be out of the city and away from the desert, at least when you look just at their house:

IMG_0567
picture is of a pop up camper in an overgrown yard behind a chain link fence, with a large tree off to the side and the sun setting behind the camper

Sometimes it is just too hot for sidewalk chalk even through the sun is already setting behind the aforementioned camper, and the hose needs to make an appearance instead:

IMG_0565
picture is of a blond baby in a diaper smiling at the camera, next to a blond boy in a dark T-shirt drinking out of the hose

Sometimes the best way to play with a hose is to try to blow or spit the water as far as you can (and maybe drink some along the way since it’s just so hot and dry):

IMG_0562
picture is of a blond baby holding the hose up to her mouth and blowing the water out in front of her; following picture is of a toddler in a dark shirt spitting water from the hose far into the air (three images in sequence)

Sometimes when you notice Mom is taking pictures, the best response is to be goofy for the camera:

IMG_0570
the picture is of a toddler boy playing with the hose; behind him and slightly to one side a blond baby is sticking her tongue out sideways and lifting one foot high into the air to stomp back down

Sometimes, once you’ve cooled off, a wandering urge takes over and you just have to walk, and walk, and walk, all around the block, despite your bare feet and lack of clothing, and examine all the weeds growing in the sidewalk (we can call that “urban nature study”, I think 🙂 ) :

IMG_0585
picture is of a blond baby in a diaper sitting on the sidewalk examining a large weed

Sometimes, it is just good to be outside, together, finally starting to feel at home in a place again.

Posted in family life, sqt

{sqt} – finding community and playing board games

I’m linking up with This Ain’t the Lyceum again today for seven quick takes! I’ve had a bit of writer’s block this week and having a format laid out for me helps get the words flowing again 🙂

  1. I’ve been feeling a lot more isolated lately. Rondel (and even Limerick) are older than the kids who show up to the weekly church playgroup, all of their friends from church are in school or therapy most of the time, and I’m having trouble finding a homeschool group that is relaxed enough to accommodate our family’s needs. I mean, field trips and classes aren’t going to help the boys make friends, and park days where the kids are expected to play away from the adults is going to be hard with the little kids (and Rondel’s tendency to zone out and lose track of where he is and how to find his way back to me). And honestly, I don’t need a whole group, just one or two families who can walk through life with us right now.
  2. Sometimes I think our family falls into so many different/radical/tiny niche categories that I will never find anyone who really gets it on all levels. There’s the large “autism family” blanket – but oh wait, they don’t know how to handle an autistic parent, and they tend to support ABA therapies that are described as abusive by a lot of autistic adults who have experienced them (perks of an adult diagnosis here…). There’s the homeschool blanket – but we are using ESA funds from the state to help pay for speech therapy and curriculum, which puts us in a special legal category, and is apparently reason enough for several of the larger state groups to exclude us. And we’re Christian of course, but I’m uncomfortable in a lot of the Christian homeschooling circles (they can swing fundamentalist and Calvinist), and I want my kids to be exposed to the diversity of ideas and backgrounds that a secular group might offer – but I still want them to know (and hopefully believe) what I believe to be true about God. I could try to get all the pieces in different places but that is so much socializing and I don’t think I can handle that many people/groups/acquaintances!
  3. Mostly I just want Rondel to find a best friend. He told me he would like to play more with other kids but he ends up just watching them and doing his own thing a lot of the time because he isn’t sure how to join in. And I don’t know how to help him 😦 I just sort of clung to my best friend through most of childhood and depended on her to navigate social events. So I keep hoping he will meet someone to be that kind of friend… if you are ever wanting to pray for our family, that would be at the top of my list right now.
  4. In other news, we have been making more and more board games until they seem to be everywhere. We have number boards up to 100, 195, 223, and 550 (Limerick keeps requesting more and more numbers with smaller and smaller squares, but I think 550 is the limit even using our smallest game pieces). We have a traditional path-format board game with colored squares, a spiral snake with colored squares, a loop board game with the letters of the alphabet, and most recently a sting ray-shaped board with a colored path twisting along his body. My favorite game is called “LEGO Monsters” and we play it on path or spiral snake boards: each square gets one or two LEGO pieces of the same color as the square, and if a player’s piece lands on a square they get to collect the pieces and use them to build a monster. We all start with a head and eyes to make sure we aren’t missing those crucial elements, and we end up with some crazy creations! This game also has the advantage of removing the winning/losing element 🙂
  5. While I may get tired of playing the board games all day long, I have to admit they were the cause of the least stressful visit we have ever had to the pediatrician. Usually the boys have a lot of trouble keeping their hands off of things, leaving the light on, staying quiet when the doctor is talking, and so on – but this time they each brought a board game and were able to play contentedly even though we had to wait quite a while (not due to any fault of the doctor; Aubade has a UTI and we had to wait for her to pee so they could test it). Even the doctor complimented them on how well they behaved, which is definitely a first at this office!
  6. Another side effect of the board games is that Limerick is beginning to internalize a lot of the numbers and their relationships. He can do quite a bit of addition now without having to count to make sure, especially with numbers 1-6 (thank you dice) but also with larger numbers because of his number boards. It’s neat to see his understanding of the numbers deepen – when I watch him think about the sum of his three dice, for instance, or about what number he’ll be moving to after adding his roll to his current position, I can almost see him manipulating the numbers in his head, breaking them up and recombining them, becoming friends with them.
  7. And finally, we have been counting. Counting and counting and counting. We drove to church and Rondel counted the whole time drive and all the way to Sunday School (he made it to 1025). We drove to speech therapy and Rondel almost cried when we asked him to take a break from counting for his appointment and pick up again afterwards (poor guy – it is hard to stop when you’re in the middle of something and going strong!). I’m not sure what he likes about it, since he isn’t nearly as in love with numbers as Limerick, but hey, he’s never going to forget those numbers now!

How has your week been? Do you have tips for making connections and building community? How about any favorite board games (non-competitive games in particular)?

Posted in family life

little autistic moments

Sitting together at the library, in two separate armchairs, Rondel and I examine the book in my hands. It is hardcover, with no plastic library jacket – smooth and pleasing to touch. The colors are soft and cool. It is thick; Rondel is full of anticipation and I am a bit apprehensive about how long it might be. When I open it, he looks up at me excitedly and says, “I can smell the pages!” More and more often he is noticing the smells of his environment, drawing out for himself an extra level of enjoyment (or disgust, sometimes, unfortunately) by way of his extra-sensitive senses.


Making toast for my three kids and a visiting friend, I fill up our small toaster oven with four slices. Rondel has asked for two pieces of toast at once, since he is hungry and we normally make two at once for him. I explain that the toaster is full so he will have to start with one and have a second piece later, and he seems unable to accept the change: wailing, threatening, screaming, sobbing. He even says that he wishes our friend (a toddler Aubade’s age who I occasionally babysit, and who Rondel loves) were not present if it means that he cannot have two pieces of toast at once. Limerick, 16 months younger, turns to him and says, “Dude, Rondel, the toaster is full! You can have another one later!” But it is always two pieces, and it is not alright that now this time it is only one.


After swimming at my parents’ house, I tell the kids that we will need to go home soon because Grandma isn’t feeling great and we don’t want to wear her out by staying too long. Rondel instantly begins telling me how he doesn’t want to leave, how he wants to stay at Grandma’s house forever, and so on. But when I ask him what he wants to do at Grandma’s house, he doesn’t know. He ends up suggesting, halfheartedly, that he could watch a movie, his go-to answer when faced with a transition he isn’t sure how to handle (it comes up in angry meltdown-inducing transitions as well as the more frequent “stuck” moments in between activities).


Getting up in the morning, sleepy-eyed and hungry, trying to figure out the day’s schedule, I am immediately bombarded with requests from Rondel to play board games. They continue for the whole day: after Aubade nurses, while she naps, as soon as one board game is finished, as a response when I ask if he is hungry for breakfast or lunch, and so on. If I say no, he keeps asking; he doesn’t usually get angry or demand that I play, but he tries to persuade me by making it more convenient and breaking the process down into smaller steps, persistently wearing me down. For example, he’ll bring the board into the kitchen if I’m making dinner, or he’ll offer to roll the die for me if my hands are occupied. It is his passion, his obsession right now, and he cannot let it go.


It is easy to see the ways that being autistic affects how he perceives and behaves in the world, in all these little moments. Some ways are positive; some are neutral; some are challenging for him and potentially also for the people around him. But they are undeniably there, pervasively present in his being in the world, making him distinctly different from most of his peers. And so we work together to make the world he lives in more supportive, so he can develop and mature and learn without the pressure of trying to continually mask. We establish routines and give him advance notice of upcoming changes; we give him extra space to process the unexpected; we coach him through transitions by helping him visualize what is coming next; we help him find creative ways to pursue his current passion when other people aren’t available to engage in it with him at the moment. With each day, he learns and grows and finds ways to be himself and cope with the expectations and realities of the world around him; with each day, we learn and grow and find ways to love, accept, and encourage him in his journey. The larger world adheres to a neurotypical standard, and we’re not going to be able to change that – but in our home we can give him a haven to be himself, to recharge and calm down, to be unconditionally loved.

Posted in book lists, family life, information, wwlw

what we’re learning wednesday: episode 6

Due to his love of rain and his constant desire to know exactly when things are going to happen, Rondel has begun to ask me questions about the weather constantly. And because I never properly learned about the weather to begin with, there wasn’t much I could tell him.

So we did what we always do when faced with a topic of ignorance and armed with a thirst for knowledge: we went to the library and came home with books!

There are surprisingly few books about clouds, and no books that I could find at our library specifically about Arizona or desert weather, at least not at my kids’ comprehension level. But these three are not bad, and we’ve learned a lot from them.

Look at the Weather, by Britta Teckentrup, is a beautiful, artistic book, filled with gorgeous atmospheric drawings, leading questions and statements about the personal impact of weather, and interesting scientific facts about weather. Each page tends to have only a few sentences, so although the book is very thick it doesn’t take nearly as long to read as one might expect. It will walk you through the build-up to a storm, for instance, painting the gradual accumulation of clouds slowly, until you almost feel the tension of it around it. But it will also give you tidbits of very fascinating information – I never knew how hail was formed until Teckentrup explained it here, for example!

The Man Who Named The Clouds, by Julie Hannah and Joan Holub, is really more of a biography of Luke Howard, the man who invented the precursor to our current scientific classification system for clouds, than a book actually about clouds – but there is a serious amount of scientific information included. I particularly appreciated the diagram towards the end of the book illustrating the current cloud classification system, and we’ve been attempting to classify the clouds we see when we are out and about each day (we saw mostly cirrus clouds today; Rondel is holding out hope for some cumulonimbus clouds since they are the type of rain clouds we typically get with the monsoons!). Overall this book was a bit above the boys’ heads, and not completely aligned with their area of interest, but by skimming and omitting while I was reading it aloud we managed to get a lot out of it anyways. On a second read through I will probably include more, depending on how it seems to be holding their attention.

Clouds, by Anne Rockwellis probably the book best-suited for answering Rondel’s questions about clouds at his level. But I haven’t read it with him yet! We’ve been distracted with the other books, and he’s caught the virus the rest of us have been passing around so we’ve been a bit preoccupied with that. This book also has instructions at the end for creating a small cloud in a jar, and I’m looking forward to doing that with the boys. From reading the book on my own, this should reinforce the information we gleaned from The Man Who Named The Clouds, and be a short, easy way to soak up more weather-related knowledge. The Let’s-Read-And-Find-Out series, of which this is a part, has been in my experience a good source of basic knowledge on any science topic we happen to have questions about.

While we continue enjoy these books, I’m going to continue searching for books about our local weather; we live in a fairly unique ecosystem, and I’d love to learn more about the weather patterns and seasonal changes specific to the Sonoran Desert. Please let me know if you have a good resource on this!

(And if you were curious about how hail is formed, here is what Britta Teckentrup has to say:

“Hail is caused when the wind sweeps raindrops up into higher, cooler parts of a cloud before they get a chance to fall. They freeze in the cold air. When the ice droplets begin to fall, sometimes the wind catches them and sweeps them to the top of the cloud again. They can cycle up and down inside the cloud several times, adding layers of water and ice as they go.

“Eventually, the ice balls become too heavy for the wind to carry upward, and they fall as hail.”

So the stronger the wind, the bigger the hail can get! Now I understand why we typically only see hail in our craziest, most intense storms – only they have strong enough winds to lead to the formation of hail.)