Tuesday, January 19, 2016

Signs You are a Writer

Sometimes life intervenes. This has been one of those times and I haven't had time to breath, much less post on the blog.

I thought I'd share a cross-post from Lisa Mac's Musings. I'll be back soon, I promise.

Signs you are a writer

Saturday, September 12, 2015


Special needs parents speak in code. ARND, SPD, ASD, ODD, OCD, pFAS, FASD, RAD, DSM...our alphabet kids have complex, often overlapping, sometimes conflicting needs.

Often, the letters dictate what services are available and what understanding comes with it. And changing out a couple of letters can change things for better or worse. Here's a primer of a day in the life of an alphabet kid.

ARND- Alcohol Related Neuro-Developmental Disorder. This is a form of FASD (Fetal Alcohol Spectrum Disorder, the umbrella term for a host of problems caused by consuming alcohol during pregnancy). ARND has the cognitive and behavioural deficits, but typically doesn't have the facial clues. Since the facial signposts such as no ridge between nose and upper lip, smaller eyes, smaller upper lip etc only develop in a specific timeframe during pregnancy, many children have a form of FASD with no facial cues, yet professionals tend to dismiss FASD if the facial deficits are not present.

ARND comes with learning difficulties, behavioural issues, cognitive impairments and lack of impulse control. Kids with ARND have trouble with cause-effect, abstract thinking, action-consequence and a host of other things like remembering how to tie shoes, bath etc.

Because ARND and all the other FASD spectrum are not recognized on the DSM-the Diagnostic and Statistical Manual of Mental Disorders, the bible of psychological and psychiatric diagnoses, it is often mis-diagnosed as ADHD, or dismissed as bad parenting. Teachers without specialized training in FASD have a hard time working with special needs kids with ARND/FASD, and so do many health professionals, law enforcement and the criminal justice system. An adult with ARND cannot control impulses, and often can't associate cause and effect or action consequence. See it, want it, take it...think toddler brain...

SPD-Sensory Processing Disorder. Imagine Costco on the Saturday before Christmas-the lights, the smells, the people, the noise...and that is SPD. Kids with SPD have sensory overload/underload issues. They may not be able to tolerate labels in clothes, seams in clothing, the fan in a heating unit that is white noise sounds like a floor sweeper, the hand dryer in the washroom has them covering their ears. Kids with SPD have a hard time in crowded places and can shut down or melt down.

ASD-Autism Spectrum Disorder The catch-all category for a range of behavioural and developmental issues. Teachers understand that with ASD, it's a can't, not a won't.

ODD-Oppositional Defiance Disorder In a nutshell, I say black, you say white 100% of the time. Kids with ODD take strong-willed to 2.0 and often have problems with not only parents but authority figures in general. ODD on a kid's file is a one-way trip to detention, even when it isn't warranted.

RAD-Reactive Attachment Disorder In simple terms, kids don't bond with parents or caregivers and is often seen with kids whose basic needs weren't met. Kids adopted out of orphanages, or who were pinballed through the foster care system tend not to develop healthy attachments because they learned pretty early that they would just get ripped away anyway.

OCD-Obsessive-Compulsive Disorder Characterized by ritual or repetitive actions that the person feels they must complete to feel safe. Think Jack Nicholson in As Good As it Gets and his locks, plastic cutlery and avoiding cracks in the sidewalk.

There are subsets to many of these diagnoses. For instance, under FASD, there is FAS, pFAS, ARND, FASD, FAE, ARBD and a bunch of other letters that delineate the degree of impairment. In SPD, kids are typically a seeker or avoider.

When special needs parents get together, we shortcut with our diagnoses with the letters, and it's common to see things like "My 10 YO ARND, OCD, SPD-avoider" or my "8 YO pFAS, ASD, RAD" or my "neurotypical 12 year old" which is code for a child who doesn't have a bunch of letters.

Trying to get a specialist to GIVE you the letter can be a challenge, because many of the behaviours overlap. So a kid with SPD may be mistaken for a kid with ADHD, because the chair is too hard and they can't sit still. A Kid with ARND may be mistaken for a child with ASD, because the cognitive, executive functioning issues are very similar, AND you can have a ARND child who also falls on the ASD spectrum. And don't get my started on misdiagnosis...

Some alphabet are helpful-for example ASD is now more easily understood as a "can't, not a won't" and teachers, medical professionals, and slowly, the general population are cluing in that the kid is doing as well as they are able to do. There are lots of supports in place now that didn't exist years ago, and movies like "Temple Grandin" are changing the stigma about kids with ASD.

Conversely, a diagnosis of ODD, while accurate, is not helpful. Teachers see ODD and assume the worst and hedge their bets with quick trips to the principal's office or detention at the first sign of trouble. These kids don't often get a chance to prove themselves.

None of these letters define our kids, but they can either help or hinder their school experience. FASD in all its incarnations is much less well understood, because it isn't an "actual" diagnosis, although there are many people working very hard to have it included in the DSM. Howie Mandel has done a great job clearing many misconceptions about OCD and helping educate people that it isn't something he can control any more than he could control his eye colour.

Our alphabet kids have a lot of challenges stacked against them and the parents of our alphabet kids have to do a lot of education, even among health care professionals. Meltdowns due to overload, cognitive inability or too much stimulation can appear like tantrums, and are often judged to be poor parenting. When our daughter's behaviour first started to manifest when she was around 5, the family doctor suggested I take parenting classes. Now I don't pretend to be a perfect parent, but I could take parenting classes infinitum and it isn't going to stop an SPD induced meltdown from happening, no matter how many sticker charts and removal of privileges and negotiated solutions I employ. If my child doesn't have the executive functioning to allow her to process cause-effect and action-consequence, no chart in the world is going to change that.

We just had a couple of letters change with our daughter, but it needs yet another assessment to confirm it. Same kid, same behaviours, same challenges, same strengths, same parents, same struggle...but if the letters change, more professionals-doctors, teachers etc will have "ah-ha" moments. And that's the most frustrating part-labels don't define our kids, but they sure can smooth the path for some resources, tolerance and general slack-cutting that lessens anxiety all around.

And that causes many of us to use other letters of the alphabet that start with WT...

Wednesday, August 26, 2015

A Guy in a Store

The meltdown was in full swing. A few months ago, my Kid dropped her tablet and cracked the glass. It still worked, but the crack had been feathering its way across the screen. My husband had been carrying the tablet in his pocket and forgot, and sat on it. Tablet still worked, but it was completely cracked, and Kid was freaking out. The fact that there was a new tablet at home did not alter the fact that daddy had wrecked the original one and the meltdown was occurring in the middle of a food store on a Saturday afternoon.

Any parent the world over has experienced a tantrum. The explosion, screaming, tears, throwing things, the brief pause to assess the audience and impact, and then repeat until parent caves or kid figures out it isn't working. It's all about the presentation.

A meltdown is very different, although to an outside observer, it has the same appearance. Tears, screaming, thrashing...but no pause for effect assessment. A meltdown is triggered by an inability to deal with something, either sensory, cognitive, emotional or mental. It's like the breaker on the fuse box trips. In the middle of a meltdown, the child is completely unaware of surroundings, behaviour or reaction-s/he has hit maximum capacity and blown. Until the meltdown winds itself down, reason, discussion or resolution are impossible. You can try hugging it out but you're probably going to end up with a nasty bruise or three. Quiet and space can limit the meltdown duration, but once it's on, waiting it out is the only option. On more than one occasion, my Kid has had no recollection of what has transpired in the previous minutes (or hours). She's lost in the overload, fighting to find her centre.

So there we were, on a Saturday afternoon with a 10 year old child in the cart in full blown meltdown. We already ignore the dirty looks of the 10 year old, almost 5 foot tall child in the cart. If we get the errand completed faster with her riding in the cart playing Minecraft, then ride she does. A man was standing trying to get around the firestorm to buy salad dressing. I moved the cart and apologized.

"No worries, I have a 3 year old. I guess I have that to look forward to." He walked away before I could explain.

I've started explaining. I'm facing the judgey people head on and explaining what they are seeing. Sometimes, I say "She has special needs and it's been a long day." When others make rude comments in front of my child, I fix them with my best mom glare and say "You know that was out loud, right?" One cashier patted my hand and said that she was also the mom of a special needs child and we shared a look of profound sympathy and understanding. People judge. That isn't going to change, but if I can make one person re-think their assumption, then I'm furthering understanding.

Since the meltdown was showing no signs of abatement, I headed to the other end of the store to grab items to expedite the trip. The same man who had been buying salad dressing was now in the dairy aisle and he caught my eye and nodded his head in the direction of the continued meltdown berating of my husband and the broken tablet.

"I'm being the responsible parent, I walked away," I quipped as I grabbed the cream cheese and yogurt.

"What's the big deal. It's a tablet, not a crisis," he answered, looking again in the direction of my family.

"She was born with fetal alcohol disorder because of her birth mother's alcohol use. It causes challenges and little things are big things. This was a big thing," I answered. Was it any of his business, no. But he hasn't asking to be rude, he genuinely seemed to want to understand.

He listened carefully, and then thanked me for clarifying. And then apologized because he had been thinking it was indulgence rather than overload that was causing the meltdown. "Parenting is tough," he said.

"Yeah, but worth it," I answered. He nodded and went on his way.

My daughter's life feels like Costco on the Saturday before Christmas every minute of every day. She has to fight so hard just to do basic tasks. She manages to keep it together at school and then meltdown when she's home and safe. When stores are too bright, or too hot or too loud or too busy, she can't process and she overloads. To the outside world it looks like she's pitching a fit. I've learned it's actually a cry for help. We ride it out together.

And so, I will continue to advocate, educate and enlighten. Judge me if you will, but you need all the information first. Education breeds understanding and acceptance and that's good for everyone.

Tuesday, August 4, 2015


One day last week when it was about 30C here in Canada (That's 86F) and humid enough to make my hair look like I was  Chewbacca's cousin, my daughter came downstairs in a sweatshirt, a pair of jeans and socks. SOCKS. My kid HATES socks. Similarly, in winter, when it's -30C (or -22F) she was heading out to school in crop pants and a short sleeve t-shirt. Temperature regulation is wonky with her ARND.

The first time I met my daughter, she was about 15 hours old. She was in the neo-natal unit, and at 8lbs, 2 oz and 24 inches long, she towered over all the preemies in the unit. She was also having a significant hissy fit. She had a full head of hair, and was in a hoodie sleeper with the hood pulled up. I think it also might have been a bit short for her, but in any event, she was unimpressed with the hoodie. She was pitching her head back and forth and crying.  I looked at her for a minute, and she stared right back at me. I reached over and gently pulled the hood down. She settled immediately with a sigh and an impression that clearly communicated "Finally, someone gets it." She was too hot.

Keeping a hat on her as an infant was a challenge. I finally knit a hat that looked like a Dutch cap that fit into the bunting bag hood. It wasn't technically ON her head, so she tolerated it. As she's grown older, kitting her out for winter is a challenge. Many of the winter gloves and mitts bother her hands, or are too hot. She likes my handknit socks because they are knit from the toe up and have no seams. Many of the winter hats have seams that bother her. I've picked her up from school a few times in the middle of winter, and she has neither hat nor mitts on, and her hands and ears are red. Socks are the first thing to go when she gets home, and our house isn't that warm. And don't get me started on winter boots...

She can overheat quickly in the summer, and I have to watch her. Not a fan of water, she dehydrates and then she gets dizzy and flushed. She's also not a fan of sunscreen because of the feel on her skin. Since my mother died of inoperable skin cancer, sun protection is non-negotiable, so finding one she'll tolerate is a challenge.

Right now, we're in a flat-cap hat phase, so at least she's wearing a hat in the summer. Now, granted, she's wearing it sideways, but at least it's there!

Body temperature dis-regulation is just one of the daily challenges we face with ARND, and is easily misunderstood. The health teacher once sent me home a snippy note to remind me to provide adequate winter clothing for my daughter. I responded by telling her to check her backpack...Sure enough, hat, scarf and two different sets of mitts were sitting in the backpack. They were on her when she got to school but I can only do so much!

It was much easier when she was small and I could just put the clothes on her body. She's now a tween with very set ideas about fashion. I'm not looking forward to winter and trying to get her to dress for the weather, rather than what she thinks the temperature feels like. (and no, dear, shorts over leggings are not enough layers when it's -30C and you aren't also wearing snow pants)


Tuesday, July 21, 2015

Perseveration and ARND

Alcohol Related Neurodevelopmental Disorder (ARND) is a form of Fetal Alcohol Spectrum Disorder (FASD) that has the cognitive and behavioural impairments without the facial characteristics. 90% of children born with FASD have no physical signs. Let me repeat that. 90% of children with some form of FASD have no physical signs. (Source: http://come-over.to/FAS/brochures/characteristics.pdf) 100% of these kids have permanent brain damage because of exposure to alcohol in utero. And yet, many people assume that if the child does not have the facial characteristics, they do not have FASD. Instead, they assume that it's bad parenting, or the kids are spoiled, lazy or willful.

We live with ARND in our house. Through trial and error, mainly error, I've learned a few things. I've connected with some great supports and I've learned some other things. And now I'm going to share because information leads to empathy and understanding.

Swiss Cheese Brain 
ARND, like other forms of FASD, is often likened to swiss cheese. Some parts of the brain developed completely, some developed partially, and some didn't develop at all. What this means is there are holes that cause gaps. The gaps can vary from child to child, and has a real effect on their little lives. For example, our daughter isn't good with action-consequence. Every instance is a new occurrence. Our house rule is electronics need to be in the living room at bedtime or the electronics go away. She just got her tablet back last night after a hiatus. Tablet didn't go to the living room, and she's lost it again. She didn't remember from the last time, because she doesn't have the cognitive ability to process that. Every time is a first time, which is exhausting for me and frustrating for her. It's especially tough in a classroom setting where the teacher has 20+ other students to deal with and hates having to remind my kid to sit properly every single day.

Remember when you played vinyl records so often they would get scratches and then skip and get stuck in a groove and play the same phrase over and over until you moved the needle? That's what perseveration is. Our kids' brains get stuck in a continuous loop. We have an added bonus of OCD, which means she can fixate on certain things and it has to run its course before the next big thing happens. While she's perseverating, if you interrupt, it resets the loop and starts all over from the beginning.

For example, right now she's on a tattoos and piercing fixation. I have no tattoos, my husband has no tattoos, I had one set of holes in my ears until June of this year, when I got a second set done to try to be cool with my kid and share the experience when she got her second set done. Dumb, I know, but desperate times...I blame YouTube. Anyway, she has a tally of all the tattoos she is going to get (when she's 18 and paying for it herself because it so isn't going to happen before that) and a list of piercings she wants. She's checked the 2nd set of lobe holes off, now she's focused on ear cartilage piercing and nose. As soon as she wakes up she starts to ask when I'm going to allow her to get her ear cartilage pierced because EVERYONE IN THE WORLD but her has their ear cartilage pierced and I'm the mean mom. If you start her on the tally, you have to wait for her to go through the whole list of 22 tattoos and I forget how many piercings, and if you interrupt, she starts over. She tried to refuse to go to bed last night until I promised she could have her ear cartilage pierced the next day. She fell asleep...and started again this morning. Perseveration is exhausting.

In practical terms, perseveration also means that she gets stuck. If she is working on a project and can't understand a step she needs to do, she can't move forward. Her brain just keeps spinning on the step she doesn't understand. She had to do a project that involved dividing a circle into six sections, and then providing six different types of information about a famous person. It landed home a few weeks after it was assigned for us to complete at home. She had drawn the circle, and had part of the title page. She had pages of information. I took a look at it after the teacher sent home the sample and figured out pretty quickly she didn't know how to divide the circle into six equal parts. She was stuck and her poor wee brain had been spinning on overdrive for weeks trying to figure out what to her was an unsolveable problem.  I didn't really know how to divide a circle into six either, math not being my strong suit, (although my father-in-law immediately said, "oh, it's 60 degrees with a protractor) so I traced the teacher's example. I then helped her see that there were six topics and six sections. Her face lit up, she organized her information and finished the project in a couple of hours because she was no longer stuck. She didn't know she was stuck, so she couldn't ask for help.

Perseveration plus OCD means she can form immediate. fierce attachments to random things. We were in a pet store once, and she spotted a rainbow beta fish. Now it was a very pretty fish, but we already HAVE a beta fish at home, and a cat. I didn't want another beta fish because it would mean another separate tank etc. She took one look at the fish and formed an instant attachment. When we refused to bring the fish home, she went into full-blown meltdown because the fish loved her and would miss her and she would never have the fish again...and all of this went on in the middle of the aisle of the store. It was that fast. She was crying hysterically, flat out on the floor. It was not a tantrum, it was an overload brought on by perseveration. I finally got her standing, wrapped her in a bear hug and slowly eased her out of the store by a side aisle, being judged for poor parenting all the while. One guy with a Stepford bleach blonde wife and cookie cutter children even commented that the situation called for a "good smack". My hands were busy holding my child, or I would have obliged him with one upside the head, but an assault charge wouldn't have helped the situation.

I spent all of one summer listening to Hannah Montana lyrics on continuous loop from the back seat. Last summer was the summer of the bugs and creepy crawlies, and I just about lost my mind over THAT one because of my aversion to creepy crawlies and having pill bugs shoved in my face to admire. This is the summer of the tattoos and who knows what will be next.

Perseveration has a plus side. Doing things over and over means she gets really good at things. She was making 3-D rainbow loom creations by watching YouTube, and was designing her own creations because she would spend hours working on them. She swims like a fish because she can focus to the exclusion of anything else. She got a high mark in recorder class because she played the pieces over and over and over and over and over...until I confiscated the recorder for the duration of Christmas break, because...recorder. Being able to channel her attention to detail can be a good thing.

When I am getting frustrated with the tattoo litany, I remind myself that it's a "can't, not a won't". It's how her brain is wired and if we find creative ways to maximize her incredible attention to detail, she will soar. I can't discipline it out of her any more than I could discipline her height, her blue eyes or her long legs out of her. It's part of who she is and she needs me to understand all of her. And I can take the tattoo litany over the jars of pillbugs.


I started the Sandwich Chronicles as a way to cope with what turned out to be the last year of my mom's life. But now it's time for a reboot.

Welcome to the new Sandwich Chronicles. I'm going to focus on education and enlightenment about life as a parent of a child with Fetal Alcohol Spectrum Disorder, caused by her birth mother's use of alcohol (and also crack cocaine) during her pregnancy. My daughter has Alcohol Related Neurodevelopmental Developmental Disorder, ARND, which has the developmental and behavioural challenges without the facial cues.

There are a lot of misconceptions about FASD. I'm no expert, there are some really great ones out there, and I'll point you in the direction as I go.

I'll keep the tone of the Sandwich Chronicles, but it's time to move forward.