Temperature

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)

Sigh.

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.

Perseveration 

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.

Re-Boot

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.

Onward.

Changing Expectations

Changing Expectations. Cross post from Lisa Mac's Musings...

Choices-cross post from Lisa Mac's Musings

Choices

Rituals

I try not to talk about my faith too much. I am Catholic, I go to church and I am both a cantor at mass and the funeral cantor of my church. At many times in my life, the predictable comfort of weekly mass was the only constant in a life that was rife with uncertainty and unpredictability. While I have serious philosophical issues with some of the man-made tenets of the Catholic Church organization, I can't imagine practicing my faith anywhere else. However, I also believe that God doesn't care what building you are sitting in, what language you use, what missal you follow or what prayers you pray as long as you talk to Him somehow, and try to follow His ways.

Both my parents were deeply faithful. My father was Jesuit educated, and he was a member of Cursillo. He raised hundreds of dollars for churches over the years, lending his fundraising expertise free of charge. The church where both my parents are buried still use the nativity figures he donated to the church in 1962 when he found out the church couldn't afford to buy them. The altar of the church where my daughter made her first communion recently is framed by wooden pillars that my father helped to raise the funds to create. The Community Living house across the street from the church we attend now came into being because my dad raised the funds to make it happen.

My mother's faith was both simple and profound. While she was anchored by the gospel passage about God's house having many rooms, she also lived in terror of angering God. Her father's family were Protestant (he became a Catholic to marry my grandma) and fire and brimstone was in her DNA. My mother attended daily mass until her health prevented her from doing so, and then we watched it on television. While she was dead set against things like an open casket ("I'll reach up and close it and then I'll haunt you"). visitation ("why would we waste all that money. No one is going to come anyway") and using the funeral home cars (we'll just drive ourselves) she was definite about wanting a full mass and a "proper Catholic burial". Ritual mattered to my mother almost as much as her sense of decorum and proper behaviour. (and what her daughter was wearing...)

So when I was planning my mom's burial for the May long weekend, the first thing I did was contact the English priest at the parish down home. My parents' grave is located behind the village church in St. Eugene, Ontario. My grandparents were married there, my mother and all her siblings were baptized and receive their sacraments there, a few of my aunts and uncles were married there, and many of my family members are buried behind the church. However, the church is now French, and only has a priest once a month. The English church is about 20 minutes up the road, so I contacted that church first before making any other arrangements. The priest agreed immediately, set the time that would work in his schedule and we made all the other arrangements accordingly based on the priest's availability.

And then he didn't show up. The time of the burial he had chosen necessitated various family and friends travelling several hours to be at the graveyard in time. My mom's two lifelong best friends, aged 86 and 88 respectively, stood in the sun with 50 other family members. At first we attributed the delay to a street festival in the adjacent town that had a detour. By 1110 hrs, I was asking the clerk of the church to call the English church. He spoke to someone who confirmed the priest should be enroute. By 1130 hrs, my uncle, my mom's baby brother, and his son had to leave because they had another funeral to attend. The clerk even tried to reach the Deacon of his church...and then he handed me the book with the Catholic Rite of Burial...and I presided over my own mother's burial. I guessed my way through the prayers, thanked everyone for coming, and ended with the committal song from a Catholic funeral because I didn't know what else to do.

Various family have told me that it was nicer and more personal than if the priest had done it. Many have said that my mother would have been proud of me. But here's the thing. First of all, my mother wouldn't have been proud at all...she would have been mortified. I am not a priest or a sister or a deacon...I have no business using the Rite of the church. She would have been happy that I had "gotten on with things" because people were standing in the sun and my daughter was up a tree  (literally) from anxiety, but she would not have been comforted by me doing the ritual of her burial, because it would not have met my mom's definition of a "proper Catholic burial."

The priest was apologetic and claimed to have the wrong date in his phone although the date was correct in the planning calendar at the church. (if he used the phone for scheduling, why could no one reach him ON the phone that day?) He says he has offered a mass for my mom, and also said that he went to the graveyard the next weekend and said the burial prayers over my mom's grave. I have only his word to go on about that.

But here's the thing-I don't have the solace of witnessing the burial ritual. I don't have the comfort of the ritual and the knowledge that mom's final wish was fulfilled. I did my best under extraordinary circumstances, but I still feel like I failed my mom in her last wish.

I know that my mom is in heaven and I know that the mass is the important part, but I still needed the solace of the burial ritual to complete mom's last journey. I needed the comfort of the ritual, and more specifically, I needed the comfort of someone else DOING the ritual. Presiding over my own mother's burial was just another thing that I never thought I would have to do for my mom...and it was the hardest of all.

Eternal Life grant unto her O Lord, and let Perpetual Light shine upon her.

I'm sorry mom. I tried.

Appropriate Cross Post from Lisa Mac's Musings

Can a plain dressing mom and her fashionista daughter find middle ground?