From the newsletter:
“Sir Top – Sir Topham Hatt, he’s the head of the railway!
There is no doubt about that, controller of the line!”
– Song from Thomas the Tank Engine
He’s Rolie Polie Olie
He’s small and spurt and round
And in the land of curves and curls
He’s the swellest kid around
– Theme song from Rolie Polie Olie
Those songs are a very small sample of the hundreds of children’s jingles and theme songs from PBS and Nickeleon that played constantly in our home in the early aughts. I still know those ditties by heart, and, for me at least, they remind me of cozy, snuggly times with my little guys.
However, if those tunes should inadvertently be played anywhere near Ian, he shrieks. A Wiggles song can make a nearly six-foot tall young man, who looks like he should be pledging a frat, cower and cover his hands over his ears. He shouts “NO!” to anyone who hums those tunes anywhere near him. I can’t even say the names of Pixar’s early films — Finding Nemo, Wall-E — without an outburst from him.
When this first started happening a few years back, we chalked up his behavior as one of those unexplainable quirks of autism. Many autistic people have unusual fears. But when we talked about it more, he explained that those songs take him back to his youth. His youth must have been a very, very bad place indeed, because he said these songs trigger graphic memories – flashbacks. It sounds a whole lot like Ian is experiencing PTSD.
Ian’s young years were indeed rough. He couldn’t talk much until he was five, so he screamed a lot. He had all sorts of sensitivities to food textures, scratchy clothing, sunlight, loud noises, and temperature. Without guidance from a doctor or the school, I didn’t understand his issues and probably pushed him too far. He must have been miserable.
And other times, he was exposed to “bad stuff” at school or in therapy. At 2-½, the state gave him a few hours of speech therapy per week. That therapist tried to get Ian to talk by strapping into a high chair and shouting words in his face. Later, he was in classrooms at times with kids with severe behavior issues, who punched him. While most of his teachers were kind, there were one or two bad apples, including one asshole in seventh grade who threatened to break off his fingers.
Researchers are starting to see more connections between autism and PTSD. It may be so common an experience among people with autism that special education teachers should use trauma-informed curriculum and practices in their classrooms. (Here’s an article that I did for The Atlantic about trauma-informed education.)
Things are a lot better for Ian now. His sensitivities are now extremely mild to non-existent. On the rare occasion that we are in loud places, he manages the situation himself with a pair of ear plugs that he keeps in his backpack. His frustrations from lack of speech are long gone, too. He’s working with a therapist to conquer these fears, so hopefully, he’ll be able to react appropriately when faced with a Pixar theme song.
Yesterday, I ran a couple of miles with a buddy in town. Like many of my local friends, we met because her boy is on the spectrum, too. As we struggled through our “couch to 5K” workout, I told her that I was thinking about writing a short book for grandparents about autism, so they can better understand their grandkids with autism.
My buddy said that she could never write such a book, because it would take her back to a miserable time. She said that when her kids were little, she was overwhelmed with managing 40 hours per week of ABA therapy from the state, an unhappy autistic son, a new business, and a slightly older brother. Things are much better now, she said, so there’s no point in reliving all that trauma.
For me, those years were a mixed bag. They must have been good days, because Steve and I smile when we hear those old songs. But there’s no doubt that things sucked, too.
At that time, Steve had just reinvented himself as a Wall Street guy, after the PhD in history turned into an albatross, so was super busy. I was still teaching college classes, while managing Ian’s complicated therapy and meltdowns, parenting an older brother, and coping with a huge lack of daycare and support. I frequently drove to the college and gave five hours of lectures with only one or two hours of sleep.
There’s a picture of us on the porch of our house after Jonah’s First Communion, and I look so tired. Ian was three at the time and at the height of his unhappiness. I found time to cook dinner for 20 that day, too. Three years later, I was still struggling, because I had to strong arm the local church to let Ian get his First Communion. Yes, there were definitely bad times.
My family, and families like mine, have experienced deep trauma, similar to traumas from job loss, death of a loved one, or prolonged illness. It’s a club that no one wants to join, but once here, we take care of each other. Maybe trauma is a bullshit cleanser. It helps a person get their priorities in check and put aside crap that other people think is so important, like college names and varsity jerseys.
I guess the real challenge for Ian and for myself is what we are going to do with our traumas. Can we overcome them? Can we use those experiences to build better selves? Can trauma become our super power that helps us understand people better and helps us focus on priorities? I hope so.
Apt. 11d 
Laura wrote, “As we struggled through our “couch to 5K” workout, I told her that I was thinking about writing a short book for grandparents about autism, so they can better understand their grandkids with autism.”
That’s an interesting idea. There are some really short books (mostly meant to be given to teachers) that you might want to look at. Those books kind of cover the space, but aren’t specifically for grandparents.
“There’s a picture of us on the porch of our house after Jonah’s First Communion, and I look so tired. Ian was three at the time and at the height of his unhappiness. I found time to cook dinner for 20 that day, too. Three years later, I was still struggling, because I had to strong arm the local church to let Ian get his First Communion.”
Technically, our youngest should have done First Communion last year, but it was the pandemic and she didn’t really seem ready. We did a home CCE program for 2nd grade and it was OK. Last week, she and I went to the first CCE class (at an inner city Catholic elementary school/parish and this year they want parents to attend the classes with the kids) and it was kind of a mess. The First Communion prep class was in the school library, it was pretty academic, and our 3rd grader was walking around touching stuff and talking. (She gets through the school day more or less OK, but by the evening, her ADHD meds have worn off.) All the other kids were basically perfect. I removed us in probably under 10 minutes, talked to a teacher out in the hall, and then called the Director of Religious Education the next day, asking for our options.
As it happened, the parish DRE was putting together a hands-on, special needs First Communion class. We went this week, and it’s three kids (including my youngest), their parents, and some assorted siblings. One of the three kids seems to be non-verbal and in a wheelchair and medically complicated–it’s a bit of a cliche, but his dad seems really saintly, and the whole family seems very nice, including a very affectionate small sister. The catechist is a speech therapist at her day job (*harps*) and she was using a communication sheet with the non-verbal kid and talked to the kids about all her different pets. We did our creation collages. The DRE had told me that it’s self-paced, so we can just leave once we’ve had enough CCE for the night.
It’s early days, but I’m really happy with everybody.
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I had a really bad experience in church a few weeks ago. Ian was distracted when going up to get communion and when he got in front the priest, he kinda had a brain fart. Instead of putting out “plate hands,” he first did the sign of the cross – badly – and then bowed and then did “plate hands.” He was in his own world until the very last minute and improvised. Whatever. The priest – a substitute weekend priest and the former president of Seton Hall University — frowned at him and after communion asked that the entire congregation take a minute of silence to contemplate the rituals around holy communion. We took a month off from church.
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I still remember the nightmare of CCE prep class for first communion, reconciliation and confirmation.
I’d delayed it for a year – since, at 7, there was no way he was ready to sit and pay attention for an hour on a Sunday morning.
In the ‘old days’ (i.e. when I did my 1st communion) – this was taught in RE class during school – and parents weren’t involved (except for organizing the party at the end).
Sadly, these days, the Bishop has decided that he wants parents involved – so the classes are on Sunday mornings…
And, even more sadly, the course involved a *lot* of writing stuff down (this for a kid who was struggling to write a 3 word sentence). Needless to say, we did *none* of the homework.
Mr 8 was not alone in this – the majority of the boys struggled to write down the required answers – and the structure was very oriented towards the ‘good girls’ sitting quietly and doing as they were asked – and with no consideration of neurodiverse kids and their needs.
Unfortunately the class also included several toddler younger siblings – who spent the time playing with the classroom toys – so, of course, Mr 8 wanted to do the same.
After 2 weeks of behaviour management – I asked if the younger children could be dis-invited (they were all from 2 parent families – so there is no reason they couldn’t have gone to the playground with Mum or Dad.
This was not well received – despite there being a whole lot of hoopla at the beginning, about this being a ‘special’ class for the communicant kids *only*.
But, we were able to transfer to a different group which didn’t include any younger siblings, for the balance of the sessions. [And, I confirmed my identity as the ‘problem parent’]
We got there in the end – but it was not a happy experience.
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That Atlantic article is still so great. Makes me want to hear what is happening now, a year later. So much what I want from school, fora teacher to respond to the child as an individual.
And Amy’s description of the first communion class sounds like the right way, too.
I need to turn off most of those jingles right away, too. Just thought of the cailou one and now a little piece of my brain is melting. (I don’t think it is trauma).But, I still like the Sesame Street theme.
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Thanks!
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bj said, “And Amy’s description of the first communion class sounds like the right way, too.”
Sometimes, the “low expectations room” is an awesome place to be.
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That Sir Topham Hatt wasn’t either murdered in an uprising or sent to prison by a newly established just government is proof of how awful the whole think was.
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MH, I always find your comments intriguing.
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Just come across this report – from NZ – covering the impact (at the worst end) of lockdowns on teenagers.
Suicide attempts more than doubled – and this is in NZ – where we’ve had (comparatively) short lockdowns compared to the rest of the world.
HIGHER RATES OF HOSPITAL TREATMENT FOR PARASUICIDE ARE TEMPORALLY ASSOCIATED WITH COVID-19 LOCKDOWNS IN NEW ZEALAND CHILDREN
“shows that attempted suicides in NZ children aged 10-14 years increased from a baseline of 40 per month to a peak of 90 per month following the lockdowns in 2020.”
https://onlinelibrary.wiley.com/doi/10.1111/jpc.15736
Anecdotal clinical experience from paediatricians during the 2020–2021 COVID-19 period suggests not only increases in parasuicides, but also in children with somatic symptoms, which are likely related to anxiety. This has led to an increase in violent and aggressive behaviour on wards and consequent stress for health-care professionals involved in their care.
In a meta-analysis of studies, an adverse association between lockdowns and youth mental health was observed, manifesting as depression and anxiety. In a survey of Chinese primary school students in Hubei province during the lockdown, almost a quarter of respondents reported depressive and anxiety-related symptoms.
Several studies do not support the use of lockdowns to contain cases and fatalities related to COVID-19 overseas. Here, we have illustrated the clear detrimental effect of COVID-19 lockdown policies on child mental health, which is consistent with clinical and overseas experience. We suggest that this evidence is considered when contemplating the use of lockdowns in New Zealand and overseas.
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I really sympathsize with that picture. I have many like that too (though not with your extra difficulties) where I just look exhausted. My mother kept telling me and I just blew her off; I had too much to do, but now when I look back I see it.
My issues eventually went away. I finished my degree, I got a divorce, my kids grew up and moved out. I don’t have PTSD, but I’m still dealing with the damage I did to my sleep cycle, but it is getting better. I’m sorry that you are still dealing with it.
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We tried an evening church thing a couple years ago and it was a disaster for many of the same reasons mentioned here. My son did not need an extra classroom type environment in the evening when meds had worn off. I’m a little sad but ultimately it was clearly the best choice for the family not to persist and I’m ok about it.
Third grade is going really well and I’m enjoying being in a sweet spot and trying not to worry about the future!
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The description of a child after a long day at school and walking around the room touching things struck a chord with me and I’m going to try to be better. My kiddo isn’t diagnosed with ADHD and doesn’t take meds, but he’s been driving me nuts by walking into my office after school and walking around and touching things.
I don’t like it, but there are some things he can touch without damage. And I’ve realized that instead of putting the other things away, I’ve been marshmallow testing him on the grounds that he should learn to suppress the behavior. But, the mentions here made me realize that he might be trying really hard and that I don’t need to make life harder for him. So, moving the other stuff, and letting him have that decompression.
Kiddo is 17 and a senior in, and it’s probably time to not put temptations in his path to train him, like a guide dog.
My kiddo sometimes complained when he was in middle school that teachers have too high expectations of him, because they presume that if he blurts out, or wiggles or walks around the room, he’s doing it in defiance of them, because he *can* concentrate, perform, comply. So, they see his behavior as mocking when he doesn’t live up to this best behavior all the time
I wonder if that’s what happened with the priest, that since Ian’s challenges aren’t obvious, the priest imposed the burden that society often imposes on teenage boys, of presuming their every behavior is purposefully challenging authority, mocking, and defiant.
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Re: Yes, that’s exactly what happened. The priest looked at Ian, who has zero physical signs of differences, and saw an asshole teenage boy. This has happened to him before. I don’t think that Ian should have to walk around with a sign that says, “Be nice. I have neurological differences.” I wish that people would just be nice to everyone.
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I think your book for grandparents is a great idea. When my dad moved closer to us (he was over 80), a neighbor family had an autistic teenage son. Their 9 year old daughter come over, introduced herself and gave dad a paper she’d written for school about her brother and his behaviors. My dad was so sympathetic, but would never have understood if he’d only seen the young man’s actions without context. Just wasn’t in his skill set, life experience.
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PTSD is real and I can believe 100% that Ian’s and your family’s experience was traumatic. I don’t know how it overlaps with being on the autistic spectrum or if Ian’s already had a lot of learning in grounding exercises and post-flashback self-care, but for me getting that professional help was invaluable. One really weird one, might be psychosomatic but hey it helps, is that if I do have a night of triggers and nightmares (rare these days, but it can happen), to make sure I’m getting protein and not contributing to any blood sugar swings that might keep things unstable.
For me also, spending the adrenaline in exercise is a big part of how I ended up in the fitness industry.
I think losing my daughter (my second round of PTSD) has helped me focus my priorities. I still kind of have a love-hate relationship with the idea that the ways we’ve been wounded become our strengths to share with others. It’s been true for me on both the receiving and the giving end, that people who walked similar roads showed me the road and I think I’ve worked to create pathways for those after me. I do feel like some of the things I have taken out of my traumatic experiences have made me quote-unquote a better if still remarkably flawed person. And yet I wish no one would have to go through that at all.
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