Hey everyone! This week I moved my blog to www.thisautismlife.com. Hopefully it’s a little easier to navigate. This week’s post is on how hard it can be having a sibling with autism. Our W is such a trooper! You can read this week’s post here: http://thisautismlife.com/bittersweet-moments/
Two weeks ago J and W were in the middle of DSW, patiently waiting for me to decide between five different variations of the same white sneaker.
I walked down the aisle going back and forth between the shoes on display, while the kids dragged their feet behind me.
“It’s lunchtime mom, I’m hungry,” said J. It was actually way past lunch time. It was 2 in the afternoon. I knew he was anxious, but I knew I still had probably 15-20 minutes until we were in the pre-meltdown zone. The kids had a snack before we left, which was how we gotten to this point, but J has ideas about lunch and what it should look like—a steaming hot blue box of Kraft macaroni and cheese in a bowl with Parmesan cheese on top. I didn’t have this flexibility to push lunch until 2 pm two or three years ago. Two or three years ago, lunch time was at 11:40, no matter where you were. The world stopped at 11:40, and if you didn’t have that mac n cheese in front of J, you’d have an epic meltdown.
“Why don’t you just choose one?” W asked, clearly done with the whole ordeal. But I couldn’t, because I’m the type of person that takes forever to make a decision. Having five options doesn’t help the situation at all.
The store was packed. It was a holiday weekend. Holiday weekends in Fargo mean Canadians come down to shop too. Mix that up with all the moms who take their kids shopping because they have to entertain their kids on a day off, and shopping can be a nightmare. My kids weren’t the only ones having a miserable time.
J had resigned himself to sitting on one of those little stools—the ones with the slanted mirrors designed to let you look at your feet—and W had convinced me to let her have the phone (when I got home, I discovered that there was a photo booth’s worth of selfies on my phone).
Then, four or five aisles down—close to the men’s section, we hear this really loud, obnoxious, snappy, “Mom, Mo-om, MOM!”
I didn’t look over to see who was yelling for mom—but it sounded like a teenage girl. At first, it sounded like a rude teenage girl, trying to boss around her mom, but as she kept calling for “mom” it seemed her behavior could be because of other things. It was as if she didn’t realize she was being that loud. Maybe she had autism, Down’s syndrome, or some other developmental delay. Maybe she was just a rude teen. It didn’t matter. Both mom and daughter seemed to be having a hard moment. It happens to the best of us.
My kids didn’t flinch. J was kicking the stool absent mindedly, W was zombied-out with my phone. But there were two other ladies, in their forties, in the aisle with me, and it bothered them. But they didn’t go over to help the girl. They just started to giggle and then squawked, “Mom, Mo-om, MOM!” to each other.
I hate to admit this, but I didn’t do anything. I wanted to say something to those ladies but I didn’t. J laughs at things when he isn’t comfortable, so I get it. But these women were older. And I’m guessing more socially savvy than my autistic son. After a minute or two, we didn’t hear anything from the teenage girl a few aisles down. My kids were at their breaking point with the shopping trip, and I decided to leave before we had a loud outburst of our own. I still hadn’t made a decision on shoes.
On the car ride home I had a million questions (and lots of guilt) running through my head. What should I have done? Do you say something to women just a few years older than you when they’re being inappropriate? I know there are social rules about correcting someone older then you. Do you say something when it’s not your kid or your business? Maybe I was making the whole thing up, my reasons for the teen’s behavior, maybe it was just a really rude girl talking to her mother. But still, squawking and laughing is inappropriate. I’m guessing “MOM!” was having a hard time no matter what the circumstances were. I should have said something. When J was in the full fledge autism toddler stage, always in a tantrum puddle on the floor in some public place, and the rude older ladies would inform me of all the wrong things I was doing as a parent, all I wanted was someone to say something. I wished someone would have stuck up for me.
This first week of April ushers in Autism Awareness month, and with Autism Awareness month comes all sorts of things. The lists of autism symptoms, the statistics, and autism stories will be all over the internet. You may see buildings downtown “lighting it up blue” to show support and awareness. Yes, it’s important to be aware of autism, its symptoms, especially if your child or a child you know seems to be on the spectrum. Yes it’s important to know about autism so that you can interact with and help those on the spectrum. Those things do help. But as a mother of an autistic child, the thing I’d love the most would be an increase in kindness. You don’t have to know anything about autism in order to be kind.
We’ve had a blue light on our porch since mid-February, not for autism, but because people around us in our community have been struggling for very different reasons. The whole city of Fargo has had a blue light porch vigil to show support for an officer shot and killed in the line of duty. The community wanted to show support for his family and his fellow officers. People wanted to help. It’s now April and the blue lights are still sprinkled everywhere around the city. It’s been absolutely amazing to see the ways people of have reached out with kindness in ways beyond the blue lights.
Blue lights. Blue lights for officers and blue lights for autism. Two very different reasons. Blue lights for me now are a reminder that we need to be kind, gentle, and supportive. People hurt at different times for different reasons. It reminds me how fragile we humans really are. We need to be there for each other.
We don’t need rude laughter, we don’t need squawking. No matter what the nature of the hard thing is we’re going through.
I’ll never know that mom and daughter’s story. It doesn’t matter. I don’t have to. It’s not my place to judge or make assumptions. Next time I have a DSW moment though, I think I know what I’ll say. Next time I’ll open my mouth and say, “let’s be kind.”
At least, that’s, what I hope, I’ll have the courage to say.
When J was little I treated his life and experiences as a recovery. I was going to make him better. I knew there was no cure for autism and that because of the complex nature of the neurological disorder there might not ever be one. But I was on a mission to make as many of his symptoms disappear as I could. I was going to make him as non-autistic as possible. I was going to fix him.
I cringe when I think about the perspective I had. I would like to think I’m independent and strong and noble, that I see the injustices of discrimination in the world and I stand up for “the underdog.” I’m not as brave as I’d like to think I am. I feel like I’m a little like Katharine Hepburn’s character in Guess Who’s Coming to Dinner. It’s one thing to say you believe in embracing differences and different perspectives but sometimes it’s a different story when that different person is your own child. There are times I don’t like the fact my kid is different. It’s a humble pill to swallow.
I’ve mentioned my feelings about milestones, the shame I feel sometimes when J’s behind in this post here, and I’m trying to be better at this. I’m trying to celebrate the little things more because J’s life isn’t a recovery. It’s his life. It’s the way he experiences the world and even though it’s not the way I see or do it, or the same way his friends are seeing and doing it, that’s okay. It’s his life. I need to be better at celebrating his life.
Here are three celebrations this week. They’re little and big at the same time. I feel like these middle school years can be so volatile, but this week has shown me they can be amazing too.
Self Restraint:
Once a week Steve and I have our dessert night–dessert just for us, not the kids. W will express her displeasure the next day. J will take his fingers and pinch a bite out of the leftovers if we’re not looking and so we always have to hide things in the kitchen from him. His impulsiveness is a huge struggle and I know he’d never pass the marshmallow test. At least that’s what I’ve always thought. This week I had forgotten to hide the last ramekin of molten lava. Later that day it remained untouched. By night it was still there. J had manged to conjure enough self restraint leave it alone.
He’s also shown self-restraint in other ways this week. Over the weekend we were watching Netflix and a “violent scene” (two people dueling with swords) came on screen. J really doesn’t know how to process violence–and I’ve realized it’s a hard thing to teach a child with autism how to process violence in a socially acceptable way. It’s not just J. We’ve been to movies before with special needs kids in the audience and they’re always laughing at the most “inappropriate times.” Time after time I’ve explained it to J this way: “When the bad guy falls or gets hurt, it’s okay to feel a little good about it. If a bad guy gets hurt in a silly way, it’s okay to laugh. If it’s the good guy who’s getting hurt then it’s not okay to laugh.People think you’re a bad person if you laugh when a good guy gets hurt.” Even as I type this I see how ridiculous it sounds. I guess we’re a little ridiculous as a society sometimes.
I’ve tried explaining this to him for years, but no matter the situation J always giggles when people are fighting or hurting each other because that’s the only way he can process it. This weekend, as the two men were fighting to the death onscreen, he announced, “This is violent, I have to leave now, I’ll be back later,” and he left the room. Steve and I were floored. We had never introduced the concept of “just leaving” to him before. We had always just tried to coach him through it, rattling the “rules of violence” to him again. It’s just a little thing in the whole scheme of this last week. But I feel like J’s hitting a new milestone too. He’s gaining more confidence in being in control of his thoughts and actions.
The PACER test:
This week I got a text from J’s para, letting me know how well J did in PE that day. They had run the PACER test (The Progressive Aerobic Cardiovascular Endurance Run (PACER) is a multistage shuttle run . . . designed to measure aerobic capacity, which is characterized by endurance, performance, and fitness. The objective of the PACER is to run as long as possible while keeping a specified pace. Students run back and forth across a 20-meter space at a pace that gets faster each minute. A point is scored for each 20-meter distance covered. The test is easier in the beginning but progressively gets more difficult.) (Nova.edu) and J had scored a 53 (the average range for his age is between 41-78) and was one of about 6 kids still going at that time. Just two years ago, J wouldn’t step in a gym. He wouldn’t run when asked. Now he loves it. He’s running with his peers. Major progress!
J and Fred:
Fred, our senior dog, has been struggling a little lately. His hips are bothering him and some days he struggles to walk. Sunday morning was one of those days. We gave him some medication and decided to make sure he took it easy. Even though he’s an anxious dog and ABSOLUTELY NEEDS exercise before we kennel him, we decided to hold off on the exercise because he was struggling so bad.
When we came back from church we came home to a messy dog and a messy kennel. It stresses J out if Fred messes his kennel, but Sunday he said, “I want to help,” so I carried the dog upstairs and J helped me bathe Fred. I held up his paws while J took a rag and very carefully cleaned each paw off. It was really sweet how gentle he was. It made me realize that J is capable of compassion and responsibility and I think I’m guilty of seeing J as always being the one who always needs to be taken care of. He can take care of others too.
This week J has been making connections on his own about who he is and how he wants to interact with the world around him. It’s not at the same rate and in the same ways as his peers most of the time. But it’s an amazing thing to watch him start to figure himself out.
Up until now, I feel like we’ve been negotiating this puberty thing okay. J’s obsessed with hygiene and cleanliness. He would take showers three times a day if we let him. Flossing has to be followed up by mouthwash. We even introduced deodorant before the start of the school year. I let him choose out the scent, and we lucked out on the first try on the application type (it’s a click kind that dispenses a cool wet deodorant—something I thought he’d never go for sensory wise). We practice using it a couple of times a week because he really isn’t a smelly kid yet, but with autism, the more practice and exposure the better the success. We’re doing pretty good right? I mean he’s okay with deodorant! I had even bought a great book with really simple social stories to help kids with autism muddle through puberty (They even have great social stories for autistic girls learning to negotiate their periods).
But we haven’t hit any of the real bumps yet and he’s already grown out of that book.
The other day as J was putting on his deodorant—the deodorant that I felt so proud of successfully transitioned to–I reminded him that one day he’ll have hair under his armpits.
“No,” he said shaking his head. “I just want hair on my head.”
“Well you’re getting older, and so you’re going to be growing hair in other places of your body.” (Which we had already talked about) before. But this time I think it clicked because J looked at me horrified, almost betrayed, almost teary eyed that his body would do something he absolutely wanted no part of.
“But it’s not going to be that way forever, right?”
“Well, honey, yeah, it kind of is.”
Puberty is a strange, strange thing. It has the inevitable way of making you feel like there’s something wrong with you. When I went through it, I felt the exact same way too. I was a late bloomer. By the end of grade seven I was the only girl in the change room still in a cami while the rest of the girls had graduated to wearing bras. I was desperate for a bra—not because I wanted one, but I felt there was something wrong with me because I didn’t have one. I finally convinced my mom to get me a training bra, even though that was probably pushing it too. My period went the same way. I was 14, at the end of grade 9 when that happened. I felt like I was the only girl on the planet who hadn’t had their period yet and that there was something totally wrong with my body because it didn’t seem to be doing the same things at the same time as my friends.
It’s hard trying to prepare your kids for this transition. It’s hard to know when things are going to kick into gear. You kind of have an idea on the order of how things will happen. But you don’t know when that will be. Months of steady successive changes? A sudden change and then we’re stalled for the next six-nine months waiting for the next thing to happen?
J’s not the only one who’s feeling horrifyingly betrayed. W has no desire to enter this territory whatsoever. She’s a staunch rebel to all things, “girly” (in her mind giggling over boys, celebrities, caring about hair and clothes–although she has started to take a little more interest in clothes). We watched Pirates of the Caribbean with the kids on Friday and at the end of the movie she announces: “Ugh! Close your eyes everyone. There’s going to be a kiss pretty soon. You can just tell by the music.”
This girl isn’t interested in kissing any boys soon.
It’s hard enough negotiating the onset of puberty with W. But I can talk to her about the emotional things. She understands what’s going on with the changes in her body—even if she doesn’t like it.
It’s hard figuring out puberty and autism. I’ll be really honest. I’m glad that we’re dealing with boy+autism+puberty. My hats off to you are who are raising girls+autism+puberty. So much harder to negotiate in so many ways. In some ways I think it’s really cruel that these kids who aren’t emotionally ready (let’s be honest, who is anyway?) have to deal with a changing body that they don’t even understand fully in the first place because of their sensory processing issues.
A few weeks ago, the school sent home a packet of literature and worksheets that J’s health class would be discussing and what we’d like them to go over with him. After thinking about it for a while, I eventually decided that he should know about everything that pertains to his own body. We’ll hold off on the girls and sex for now.
The strange thing is I’m not so much worried about the sex and girls with him as I am with him learning about those things in a classroom where he can read the awkward embarrassment from the boys and the girls. The mini eruptions of snickers and giggles. With a 5 second giggle from anyone in the class, J will interpret that sex and development is truly funny—not awkward—and therefore we run the risk of J saying something “human developmentally inappropriate to someone” later down the road.
The other problem is, that we also run the risk of him being socially inappropriate because he doesn’t know how to talk about the things he’s trying to figure out—like trying to make a comment on a girl’s development like he would their freckles or haircut. Or just saying something because he’s curious. Boys his age can sneak around these urges to “say something” because they know how or when to say it and get away with it—when teachers aren’t listening, or in some coded sexual euphemisms. I’m not saying this is right at all—I hated when boys would make sexually ambiguous comments at me or my friends.
Ugh. I know I have said this many times in our autism experience, but sometimes raising a child with autism is so much more complicated. Poor J. Social rules are hard enough to figure out. Sexuality is even harder. Half the time our society can’t even get it right.
It’s a conversation we’ll be having many times over in the next few years. As things change with him or when changes happen to W. He’ll learn it all eventually, and probably not in perfect timing (because when exactly is that anyways?). I guess the one thing we have going for us as parents is that these life changing events don’t happen all in one night. I guess the universe has granted us some mercy there.
But right now, if my kids could negotiate with the universe and have it their way, I’m sure they’d stay in Neverland forever.
I’m holding my breath–ready to pass out–because we’re so close to the finish line but I can’t quite declare that we’re in the clear yet. At noon today, I announced to Steve that we had just passed the twilight zone hour (if J’s going to have a catastrophic meltdown at school it’s almost guaranteed to happen during the 11:00am-12:00 pm) and that we have one more day to go. We just need J to hold it together for one more day and then we can officially declare victory for the semester.
I don’t know why, but Christmas time has always been hard for J. Someone at church told me once that she had severe anxiety and that Christmas always triggered a flare up in her anxiety too. Maybe it’s the expectations we have at this time of year, the “countdown” to the “big day,” the crazy scheduling, the added responsibilities. I think for J it probably is a lot or all of these things.
I’m learning more and more that when you love (and live) with someone with anxiety, it’s hard not to let their anxiety become yours. Typically I really like this time of year, but over the years it’s become a season of helping J cope and manage. It’s become a season of holding your breath, crossing your fingers, doing a little dance, knocking wood, praying, and all other sorts of ritualistic and superstitious behaviour to ensure you both make it.
This year has been a little different (knock on wood). J has been able to do a great job of managing his anxiety up until the holiday (we still have tomorrow–I hope I don’t jinx it) however, this year’s been hard in the sense that because J’s getting older, the crazy scheduling and other daily responsibilities are bigger now. Choir concerts are on school nights instead of during the day, huge homework projects and end of unit exams are booked up right until the last two days of school. For the first time (for as long as I can remember) I’m really, REALLY, ready for the kids to be out of school just so we don’t have to keep up with the school stuff or worry that J is going to have an explosive meltdown because of the stress of the season.
So far we’re making it. We had a really big victory last week. J had his grade 7 choir concert and he NAILED IT. For Steve and I, choir concerts have historically been a really stressful experience. In the beginning (k-grade 2 or 3), J wouldn’t let us in the same room as him during the concert. Even if he saw us try to sneak in, he’d begin a full on meltdown on the risers and scream. Once J decided it was okay for us to watch him, it was painful to see how he couldn’t stay still on stage–how he’d fidget–not in endearingly quirky ways, but in socially inappropriate, ways. If he’d get excited during a song, he’d rub his legs while he was singing and jump up and down or smell his fingers, or flap his hands.
But this year–this year–was a breakthrough. J’s para (who is AMAZING–we’ve always seemed to luck out with amazing support staff ) came that evening to help out in the backstage in the wings. J had two girls placed beside him to help him out too. This was the same set up as last year, but his para worked really, really, hard with him to prepare him for onstage behavior. As in: no flipping ties, no flapping hands, no flipping band aids on fingers (he compulsively picks his fingers until they bleed), no chewing or picking fingers, no rocking, no hands on legs, no rubbing legs, no smelling fingers, and stay as still as you can. And this year the stars aligned and it happened. We had the best choir concert on record.
Here’s a short little bit of video evidence. J sings with the girls because 1) he still has a soprano voice and 2) grade 7 girls are much more mature than grade 7 boys and are therefore much better peer helpers.
(I cut down the clips so you can see how K and L, the girls beside him help him out at the 0:08 and the 2:17 mark. Bless his heart–he’s trying so hard to keep his body parts all in control.)
As I sat in the audience, it took everything in me not to erupt into a blubbering,crying mess. That’s one of the amazing things about the autism experience. Your heart just spills over with love for the people who help your kid out along the way. I just sat there, that gratitude you know you can never really repay for someone, for C his para, K and L standing next to him, E and M and all the other girls on stage who have helped him all through elementary school.
Yeah. There’s some pretty awesome people in the world. And I’m really glad they’re sharing the same space on this planet as me.
Have a very Merry Christmas or a very happy holiday in whatever way you celebrate!
–The Becks
While reorganizing our home office over the last week or two, I found dozens of J’s IEPs and progress reports starting from preschool. I’ve been hoarding them like tax returns, not sure if I’m supposed to hold onto them, not sure if I’ll ever need to pull out an IEP from, say, 2008 or if any of that information is still useful. I’ve decided to keep those files for now, and maybe read through all of those reports again in preparation for J’s annual IEP in the next few weeks. J has made significant progress thanks to early intervention, but who knows—maybe there are some underlying trends that are still there in J, hidden away and morphed into something that looks different but still hasn’t been addressed or even resolved.
Among these stacks of papers, I did find something that belonged to W. On October 16, 2007, 37-month-old W was screened using the Denver II at J’s preschool where she was attending as a peer model. That’s right, back in 2007 I had a few concerns about W’s development and I had her screened right away, just like I did with J.
I didn’t want to take that chance. I didn’t want to “wait and see.” “Wait and see” is what friends and doctors told me when J was 18 months and couldn’t put two word sentences together and I’m sure glad I didn’t listen then. I don’t want to think of all the years of growth J would have missed without early intervention—if we had entered kindergarten from scratch, if it had taken a few years after that to realize that he had autism. I had a gut feeling at 18 months that something was up—even if I couldn’t explain or articulate to people what that was.
I didn’t have that gut feeling with W. Not in any way whatsoever, but with the hours and hours I spent researching autism one thing did pop up again and again—that siblings of autistic children are more likely to be autistic than those who do not have an autistic sibling. That was back in the early 2000s. Research now suggests that trend is even stronger (see here and here)
I’d get that question a lot. Once people found out J had autism, the questions started about W. One time we were at the wading pool in Lawrence—at an autism playgroup—and almost every parent came up to me asking, “Does your daughter have autism too?” When I answered, “No,” they’d continue with either, “Wow! That’s amazing” or “Wow, you’re so lucky. Look at her—she’s such a good playmate for your son with autism.” That’s when I realized that almost everyone at that little playgroup had more than one son/daughter on the spectrum.
Of course that little playgroup is a poor sample group. The frequency isn’t THAT high for multiple children with autism in a family, but between experiences like that and the research I decided that I wasn’t going to chance it with W. Right around 3 ½ I noticed when I asked her a question like, “W, do you want milk or juice to drink?” W would answer something like, “The dolphins and unicorns like swimming together.” Answers that had had nothing to do with the questions I asked. I talked to her preschool teachers and the speech therapist in the classroom, and while they noticed random answers like that too, and while they didn’t think anything was wrong they told me, “We are totally up for a screening if that’s what you want.”
Deep down I was pretty sure that she didn’t have autism. But I wanted to rule it out—after all, there was some funky speech going on, so on October 16, 2007, W was screened by the early intervention preschool using the Denver II (the Denver II has fallen out of favor as a screening test for many early intervention programs—many use different testing now, but this is what was used on her in 2007).
Here’s the summary of the report:
Results: Suspect
Denver was Suspect due to one delay, brush teeth with help and one caution, put on a t-shirt without help. Keep working with W on “self-help” activities like getting dressed, brushing teeth, washing hands, etc. For fine motor development, you can start showing W how to draw faces and shapes. For large motor development, you can show her how to hop and continue working on balancing on one foot. W was advanced in this area! For language, ask W open-ended question frequently and try to engage her in short conversations. Ask her to define words and show her what the different prepositions mean (over, under, on top of, beside, etc). No concerns at this time! Keep up the good work!
Brushing teeth? Self-dressing? These things weren’t even on my radar. And for good reason—she was only slightly behind in these areas. W had no speech or cognitive delays, but W’s dressing delays came because I was always struggling with J, trying to get the door with an autistic toddler can be quite the challenge, and when the baby sister is only 22 months younger is lagging behind, you sometimes just do things for her. At that point in my life, it felt like I had twins and one especially needy twin at that.
The screening was a good reminder—that even though W had no significant delays, I did need to make sure she wasn’t neglected because of J. On top of being enrolled as a peer model in J’s early intervention preschool, we enrolled in the Parents as Teachers program (a program where a developmental specialist comes to your house and shows you really fun games, books, and activities to do with your child and helps you understand how to support development as a parent). I needed those things. I struggled a lot as a mom of little kids. I needed a village to help me raise not only J, but W too. Other people can see things you don’t. Other people come up with ideas you’ve never thought of before. And it’s really helpful.
Every few months, without fail, someone comes up to me with concerns they have about their child’s development. Most of the time they’ll tell me the quirky things they see their child doing and then comes the question: “Do you think I should get my child tested? The doctor says it’s nothing, but I’m not sure.” They’re always hesitant—I’m not sure if they’re scared to find out something is wrong with their child, that their child will be labelled, if they’ll have to put their child on meds, that the results will forever change the way they look at their child…Mama and Papa bear brains go to worst case scenario modes quickly.
But for me, I feel very, VERY strongly about developmental screenings. SCREEN. If there’s a delay, then great! You know what’s going on and what to do next. If there’s no delay? Great! You know you don’t have to worry anymore. No harm, no foul, right?
It still upsets me that as a society we feel that it’s a no-brainer to take your kid to the ER in the middle of the night because your child has a fever—even if you’re not sure it qualifies for the “high fever” category, but as a society we are willing to sit for months, even years to make decisions on a child’s social/mental/emotional development. I get it, the word “development” implies growth and change, but at the same time there are baselines in development that every child should be making at different points in their life. I feel like this hesitation is very similar to our hesitation to talk about mental illness—it’s something we can’t get lab results on, and if we can’t get the lab results on it, then maybe, maybe it’s not “really” real.
When people ask me about screenings, I tell them the stories of both J and W. One time I was right, the other time I was wrong, but I never for a minute regret screening them at the age I did. We test our kids umpteen times a semester for academic purposes once they hit public school age. We take our babies for well-child visits every year to measure their skull sizes and weight gains and growth spurts until they’re teens and then some.
Why are we so scared of assessing the social-emotional-mental development of our children?
The Messy Art of Parenting Autism 