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
Tuesday, January 19, 2016
Saturday, September 12, 2015
ABCs
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...
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.
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
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.
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.
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.
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.
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.Perseveration
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.
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.
Tuesday, June 24, 2014
Sunday, April 13, 2014
Wednesday, May 29, 2013
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.
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.
Thursday, May 16, 2013
Thursday, April 11, 2013
Friday, April 5, 2013
Earrings and Easter Eggs
When you are a member of a church choir, Easter is more busy than Christmas. From Palm Sunday to Easter Sunday, a church choir member has a lot of singing to do. Since I am both a church choir cantor and a member of the Grand Philharmonic Choir, with a tradition of singing a major Bach work on Good Friday evening, Easter means I am stupidly busy.
I abdicated hosting Easter Sunday dinner a few years ago, because I am usually (more of a) babbling idiot by Easter Sunday afternoon after the busy week I have just completed. Singing, especially singing at the level of the Grand Philharmonic Choir, is physically and mentally demanding and exhausting.
Since I was a child, one of my favorite things in the lead up to Easter was decorating Easter eggs. It ranked right up there with the first bite of Easter Bunny ears. I have passed my enthusiasm on to my daughter, and I had promised her we would decorate the eggs on Holy Saturday.
Having a child with OCD and Anxiety means dealing with a child with a laser-beam focus...and a need for constant reassurance. She went to bed Friday night knowing we were decorating Easter eggs on Saturday. She had been asking 30 times a day for 2 weeks when we were going to decorate the Easter eggs, and she checked the contents of the kit as many times a day...
At 3am Saturday morning, she was up and ready to decorate Easter eggs, because it was now Saturday. Yes, you read that right, 3 am. She STAYED up for the day and didn't crash until 10pm that night. We had gone to bed around midnight, and 3am is not a good time of night for me. I ended up going back to bed around 6am for a couple hours to try to beat the migraine into submission. The Kid came and woke me up at 7:30 am to inquire when we were going to do Easter eggs because the movie we had put on at 4am was over. She asked again at 9am. She asked again at 10am...We decorated the Easter eggs in the afternoon. They were lovely, at least I think they were, I was too tired to notice.
There are times when her challenges are exhausting, and when she is on a broken record about something, in absolute frustration I have said to her "don't ask again." And then I realize she can't help it. the combination of OCD and Anxiety creates a loop that she can't help. She will often answer "I can't help it." And she really can't. And then I realize it and feel like the world's worst mother. Maybe is a word we do not use in our house, because maybe means yes. It doesn't mean maybe.
Easter hasn't really been a big deal in our family tradition-wise (see Paragraph one). I was doing fine on Easter, until our music director handed me my mom's earrings, that my daughter had left at church on Good Friday. Minutes later, we started a hymn called "We Who Once Were Dead"... and I had to go and sob in the coatroom again. The combination of mom's favorite earrings and a hymn about death was my undoing.
I miss you, mom. I miss you in a million big and small ways every single day.
I abdicated hosting Easter Sunday dinner a few years ago, because I am usually (more of a) babbling idiot by Easter Sunday afternoon after the busy week I have just completed. Singing, especially singing at the level of the Grand Philharmonic Choir, is physically and mentally demanding and exhausting.
Since I was a child, one of my favorite things in the lead up to Easter was decorating Easter eggs. It ranked right up there with the first bite of Easter Bunny ears. I have passed my enthusiasm on to my daughter, and I had promised her we would decorate the eggs on Holy Saturday.
Having a child with OCD and Anxiety means dealing with a child with a laser-beam focus...and a need for constant reassurance. She went to bed Friday night knowing we were decorating Easter eggs on Saturday. She had been asking 30 times a day for 2 weeks when we were going to decorate the Easter eggs, and she checked the contents of the kit as many times a day...
At 3am Saturday morning, she was up and ready to decorate Easter eggs, because it was now Saturday. Yes, you read that right, 3 am. She STAYED up for the day and didn't crash until 10pm that night. We had gone to bed around midnight, and 3am is not a good time of night for me. I ended up going back to bed around 6am for a couple hours to try to beat the migraine into submission. The Kid came and woke me up at 7:30 am to inquire when we were going to do Easter eggs because the movie we had put on at 4am was over. She asked again at 9am. She asked again at 10am...We decorated the Easter eggs in the afternoon. They were lovely, at least I think they were, I was too tired to notice.
There are times when her challenges are exhausting, and when she is on a broken record about something, in absolute frustration I have said to her "don't ask again." And then I realize she can't help it. the combination of OCD and Anxiety creates a loop that she can't help. She will often answer "I can't help it." And she really can't. And then I realize it and feel like the world's worst mother. Maybe is a word we do not use in our house, because maybe means yes. It doesn't mean maybe.
Easter hasn't really been a big deal in our family tradition-wise (see Paragraph one). I was doing fine on Easter, until our music director handed me my mom's earrings, that my daughter had left at church on Good Friday. Minutes later, we started a hymn called "We Who Once Were Dead"... and I had to go and sob in the coatroom again. The combination of mom's favorite earrings and a hymn about death was my undoing.
I miss you, mom. I miss you in a million big and small ways every single day.
Saturday, February 16, 2013
The Little Things
Cross post from Lisa Mac's Musings.
http://lisamaccoll.blogspot.ca/2013/02/the-little-things.html
http://lisamaccoll.blogspot.ca/2013/02/the-little-things.html
The Firsts
When someone you love dies, the "first" events are agony-the first Christmas, the first birthday, the first Mother's Day, Father's Day...the "firsts" reopen the wounds and shine a spotlight on the hole in your life.
My mom died in November, and Christmas and my 50th birthday followed in rapid succession. I knew they would be hard. The "firsts" always are. I braced myself for it, and gave myself permission to feel whatever I was going to feel.
What has caught me off-guard, however, is not the firsts in my life, but the firsts in my daughter's life. I was prepared to miss mom for my firsts-my daughter's firsts are knocking me on my butt.
I had already bought my mom's presents for my daughter at Christmas, so my daughter's birthday was the first "first" for her without my mom. My mom would buy her beloved granddaughter everything under the sun. We all knew that time was finite, and I tried to pick the mountains I died on, within reason.
At the end of January last year, mom and I were out shopping for my birthday and my daughter's birthday. Mom was not herself that day- she was confused, she kept asking why we were at the mall...she had had what I know now was a TIA, but it was the first one, and I didn't know what it was then. We bought my birthday present, and then headed to my daughter's favorite store "Build a Bear." We bought a purple stuffed animal and my mom recorded a special message for my daughter "Grandma loves you..." When we got home, mom phoned 30 minutes later, in a panic because she didn't have a birthday present for me. It was sitting in a prominent place on the kitchen table and she had forgotten why we had gone out that day. She called and asked me 2 more times in the next hour. I went back to mom's apartment and discovered that she hadn't taken her pills for days, and had forgotten to eat. It was the day when everything started going wrong and marked the beginning of the spiral downwards to her eventual move to the nursing home, and her death 10 months later. On that day, I almost didn't take mom to Build a Bear because she always spent too much money in there. I'm glad I did.
My daughter makes her first Communion this year, and my mom was looking forward to it. Faith was a foundation of my mom's life and she was very pleased I was giving my daughter the foundation of faith as well. My dad was a man of faith, and he would have been over the moon watching his granddaughter make her first Communion, even more so than my mom.
As the lead up to first Communion, my daughter had her first Reconciliation this week. The church that is associated with her school is not the church we normally attend, but I have a family connection with it. It is the church that my parents attended until my dad died, and it is the church where we held dad's funeral. There are large wooden screens at the back of the altar that surround the sacristy. My dad led the fundraising campaign at that church to build them. They remind me of my dad.
As I sat in the church waiting for my daughter to make her first Reconciliation, grief overwhelmed me. What surprised me, however, was the grief I felt for my mom AND my dad. They would have been so proud of their granddaughter. Missing dad is usually reserved for Remembrance Day...this grief caught me by surprise, to the point where after my daughter returned to the pew, I had to excuse myself for a private cry in the bathroom.
There are a number of other firsts ahead of me, and I have to accept that some will be worse than others. Tears showed I loved. I can own that.
(Sometimes I sneak into my daughter's room and play the bear. "Grandma loves you." and I answer "she sure did.")
Friday, February 1, 2013
This Business of Grieving
It's a funny thing, this business of grieving. Or more specifically, it's a funny thing, this perceived business of grieving. Why is it that people judge you by the way you seem to be grieving, or not grieving, as the case may be.
I just celebrated a milestone birthday. Many people were expecting me to be an emotional wreck as I approached the day, both because it was a birthday ending in zero, and it was the first birthday without my mom. I was not. The age part didn't bother me in the least. And I miss my mom every minute of every day. I never understood why my birthday was such a big deal to her, far more so than to me, until I became an adoptive parent myself. Then the penny dropped and it all made sense.
One year ago on my birthday, I arrived at my mom's apartment to find a note on the table saying "Happy birthday, you were the best thing in my life. I love you." Mom was lying on the couch, weak, disoriented and waiting for it to no longer be my birthday so that she could die. You see, she promised me she wouldn't die on my birthday, but the next day all bets were off. When I arrived at her apartment the next morning, she had left me another note that said "I hope all this is over. I love you." That day, I took her to the hospital for a 27 hour wait, a two week hospitalization and the beginning of the year of hell that this blog has captured which ended with her death in November.
.In the last month before her death, mom often told me that she wanted to "move on" so that I could "get on with my life." I kept telling her that she was a big part of that life, and I was just fine with that. In the week she was dying, I changed my opinion. I told her that I loved her and would miss her, but it was time for her to go. Her favorite scripture passage was John:14-there are many rooms in my Father's mansion. She took comfort that there would be a place for her. Mom started dying on Tuesday and by then, sepsis had been confirmed. She was still lucid, and I told her that her room was ready. "Have you booked the movers?" she quipped, and I replied I was waiting for her to give me the date. And then I told her that it was time for her to go, and I would be fine. I told her that a few times over the next few days. I knew mom would fight to stay if I tried to hold onto her, and in the face of the extreme pain she was in, I couldn't do that. The hardest thing I've done was tell my mom it was okay to die. It was also one of the most loving things I've ever done.
In a weird way, I did too good a job of being "okay." I couldn't grieve and I couldn't cry. I think my subconscious decided that if I broke down, I wasn't keeping my promise to mom about being okay with her dying. After 2 weeks of insomnia, debilitating back spasms and complete numbness, I told mom that I needed to be able to grieve for her. I've cried a bit since then, but it's still a loss deeper than tears. Let me be clear. I miss my mom every minute of every day. My whole life needed to be restructured and reshaped and I'm still working on that.
My mom knew about my plans for a birthday celebration. My last birthday celebration was probably my 15th birthday. I was snowed in on my sweet 16 and nothing much has happened since. Mom thought it was grand that I was going to have a party. She also thought I was nuts, but anyway...
I think some people were surprised that I went ahead with my birthday celebration. People expected it to be a sad day, whereas I welcomed the new age and was thrilled so many of my friends came to help me celebrate. Confession time...I had a party in high school, my only one, and it was an unmitigated disaster. No one came, and the couple who did come left. It scarred me for life and entertaining has not been something I've enjoyed since. The fact that people came surprised and thrilled me, although I had been posting tempting things on Facebook all week...I baked myself into a stupor but I wanted it to be a thank you to all my friends, as well as a celebration of the new decade of my life. So many times in the last year, my friends were the ones who got me through, let me vent, let me cry, and supported and held me up through the worst year of my life.
Mom may not have been there in body, but she was certainly there in spirit. One of the last conversations we had before she slipped into a coma, I told her I knew she would never be able to let me dress myself and would always be whispering in my ear. She left and said that was probably true. She was certainly not going to let a little thing like death slow her down. The morning of my party, I chose an outfit that I really liked until I looked in the mirror. Clear as a bell, mom's voice in my ear said "that's not going to look very nice in pictures, dear." And mom was right, so I went and changed. Later, in one of the group pictures of friends I have known since high school there is a very distinct orb in the photo, right beside my head. It's not in the next picture of the same group. For angel workers and intuitives, orbs are clear signs that angels and spirits are present and I am a firm believer in the presence of both angels and our loved ones. I felt mom there all day, so she popped in to show me. She was still a part of things.
I got the sense that some people feel I'm not grieving enough because I had the party anyway. My mom would haunt me for all eternity if I had called off the party because of her death, just like she would have haunted me for all eternity if I'd cancelled my daughter's Christmas party because it fell the morning after mom died. Mom was very stoic and matter of fact about things, and living and dying was something we talked a great deal about. She was emphatic and firm about me moving on with my life after she died. One of the last conversations we had revolved around that topic. I also know she's in heaven using her influence to throw new opportunities my way. And I know she's around me always.
Grief is personal. There is no right or wrong way, no time frame and the only way to get through it is to go through it. I can manage the big things, but the little things will trip me up, like watching the Queen's Christmas message alone for the first time in my life, or finding something in mom's handwriting while sorting through a box. I promised mom that I would be okay, and I mean to keep that promise. She also made me promise that I would get on with my life, and I'm trying to keep that promise too. She had little tolerance for "moping" when she was alive, and I doubt that has changed. My mom would never let a little thing like death stop her from communicating with me, and I'd like those interactions to be positive. So I straighten my shoulders, raise my head and keep moving through this, some days better than others. It's how my mom expected me to cope.
I just celebrated a milestone birthday. Many people were expecting me to be an emotional wreck as I approached the day, both because it was a birthday ending in zero, and it was the first birthday without my mom. I was not. The age part didn't bother me in the least. And I miss my mom every minute of every day. I never understood why my birthday was such a big deal to her, far more so than to me, until I became an adoptive parent myself. Then the penny dropped and it all made sense.
One year ago on my birthday, I arrived at my mom's apartment to find a note on the table saying "Happy birthday, you were the best thing in my life. I love you." Mom was lying on the couch, weak, disoriented and waiting for it to no longer be my birthday so that she could die. You see, she promised me she wouldn't die on my birthday, but the next day all bets were off. When I arrived at her apartment the next morning, she had left me another note that said "I hope all this is over. I love you." That day, I took her to the hospital for a 27 hour wait, a two week hospitalization and the beginning of the year of hell that this blog has captured which ended with her death in November.
.In the last month before her death, mom often told me that she wanted to "move on" so that I could "get on with my life." I kept telling her that she was a big part of that life, and I was just fine with that. In the week she was dying, I changed my opinion. I told her that I loved her and would miss her, but it was time for her to go. Her favorite scripture passage was John:14-there are many rooms in my Father's mansion. She took comfort that there would be a place for her. Mom started dying on Tuesday and by then, sepsis had been confirmed. She was still lucid, and I told her that her room was ready. "Have you booked the movers?" she quipped, and I replied I was waiting for her to give me the date. And then I told her that it was time for her to go, and I would be fine. I told her that a few times over the next few days. I knew mom would fight to stay if I tried to hold onto her, and in the face of the extreme pain she was in, I couldn't do that. The hardest thing I've done was tell my mom it was okay to die. It was also one of the most loving things I've ever done.
In a weird way, I did too good a job of being "okay." I couldn't grieve and I couldn't cry. I think my subconscious decided that if I broke down, I wasn't keeping my promise to mom about being okay with her dying. After 2 weeks of insomnia, debilitating back spasms and complete numbness, I told mom that I needed to be able to grieve for her. I've cried a bit since then, but it's still a loss deeper than tears. Let me be clear. I miss my mom every minute of every day. My whole life needed to be restructured and reshaped and I'm still working on that.
My mom knew about my plans for a birthday celebration. My last birthday celebration was probably my 15th birthday. I was snowed in on my sweet 16 and nothing much has happened since. Mom thought it was grand that I was going to have a party. She also thought I was nuts, but anyway...
I think some people were surprised that I went ahead with my birthday celebration. People expected it to be a sad day, whereas I welcomed the new age and was thrilled so many of my friends came to help me celebrate. Confession time...I had a party in high school, my only one, and it was an unmitigated disaster. No one came, and the couple who did come left. It scarred me for life and entertaining has not been something I've enjoyed since. The fact that people came surprised and thrilled me, although I had been posting tempting things on Facebook all week...I baked myself into a stupor but I wanted it to be a thank you to all my friends, as well as a celebration of the new decade of my life. So many times in the last year, my friends were the ones who got me through, let me vent, let me cry, and supported and held me up through the worst year of my life.
Mom may not have been there in body, but she was certainly there in spirit. One of the last conversations we had before she slipped into a coma, I told her I knew she would never be able to let me dress myself and would always be whispering in my ear. She left and said that was probably true. She was certainly not going to let a little thing like death slow her down. The morning of my party, I chose an outfit that I really liked until I looked in the mirror. Clear as a bell, mom's voice in my ear said "that's not going to look very nice in pictures, dear." And mom was right, so I went and changed. Later, in one of the group pictures of friends I have known since high school there is a very distinct orb in the photo, right beside my head. It's not in the next picture of the same group. For angel workers and intuitives, orbs are clear signs that angels and spirits are present and I am a firm believer in the presence of both angels and our loved ones. I felt mom there all day, so she popped in to show me. She was still a part of things.
I got the sense that some people feel I'm not grieving enough because I had the party anyway. My mom would haunt me for all eternity if I had called off the party because of her death, just like she would have haunted me for all eternity if I'd cancelled my daughter's Christmas party because it fell the morning after mom died. Mom was very stoic and matter of fact about things, and living and dying was something we talked a great deal about. She was emphatic and firm about me moving on with my life after she died. One of the last conversations we had revolved around that topic. I also know she's in heaven using her influence to throw new opportunities my way. And I know she's around me always.
Grief is personal. There is no right or wrong way, no time frame and the only way to get through it is to go through it. I can manage the big things, but the little things will trip me up, like watching the Queen's Christmas message alone for the first time in my life, or finding something in mom's handwriting while sorting through a box. I promised mom that I would be okay, and I mean to keep that promise. She also made me promise that I would get on with my life, and I'm trying to keep that promise too. She had little tolerance for "moping" when she was alive, and I doubt that has changed. My mom would never let a little thing like death stop her from communicating with me, and I'd like those interactions to be positive. So I straighten my shoulders, raise my head and keep moving through this, some days better than others. It's how my mom expected me to cope.
Monday, December 17, 2012
Wednesday, December 5, 2012
When it's all been said and done
This picture was taken a year ago when my mom's siblings came to celebrate her 85th birthday, before the radiation and spiral downward began. It's how I want to remember my mom.
My mom died almost 2 weeks ago, holding my hand. The inoperable squamous cell carcinoma (skin cancer) that we had been dealing with for years had spread across most of her head, through the bone into her brain, had probably gone into her right eye and had turned septic. Mom died of advanced sepsis and watching septic shock take her life is not an experience I would wish on anyone. Like most of our lives together, at the end it was just mom and I, sitting holding hands, except my other hand was on her wrist checking for a pulse and mom was in a deep coma, rasping breath followed by convulsion slowly fading.
When you are an only child it's all on you. There is no tagging off, there is no trading out. There is no one to play bad cop to your good cop; all the decisions, all the choices fell to me. Mom was never one to shy away from a tough subject, so we had had many conversations about what her wishes were at the end of her life. She had been firm in her instructions that no extraordinary measures were to be taken. When sepsis was confirmed, and before mom slipped into unconsciousness, I asked her one more time if that was what she wanted. She was lucid, and said "there's no point in prolonging this." A mother to the end, I knew she didn't want to leave me, so I told her that I would be fine, that I was okay and had lots of friends to take care of me. I told her it was time for her to go because love never dies. While she was still lucid, I asked her to send me a sign that she had made it safely to heaven. After my father died, mourning doves starting showing up regularly. I asked mom to send me a cardinal as a sign, and she agreed. A few hours after she died, I looked out my kitchen door and there was a female cardinal sitting on the railing of the deck looking in, the male nowhere to be found. Mom kept her final promise to me. A little while later, a single mourning dove showed up. Mom and dad are looking out for me.
I am still a mother, too, and my daughter had a Christmas party to go to the morning after my mom died. My husband and I decided not to tell her until after the party. Mom would have been really ticked if her beloved granddaughter had missed a Christmas party, and mom wasn't going to be any more dead if we waited a few hours to break my daughter's heart. Her grief is coming out in unusual ways. She was really angry with me the first few days after mom died, I think because I was supposed to fix things, and I couldn't fix this. While we were driving to drop her off so my husband, my cousin and I could clear the contents of mom's room, the Kid asked how grandma was going to buy her Christmas presents. I told her Grandma already did, which was true. "No, next year..." she said. It broke my already broken heart. She's become very clingy, and I just take the emotion as it comes. She has a right to grieve however she needs to.
My mother used to tell me that she grieved her father too much to cry, and I never understood that. I do now. I do not wish my mom back in the hellish existence of the last year but I miss my mom in a million little ways every moment. I have been grieving the loss of my mom for 11 months, as she slipped away bit by bit, pieces of our life together falling away as her health deteriorated and she moved to a nursing home. This is different. It's a sadness deeper than tears and a profound, stoic resolve to get up, move through and do what needs to be done. It's how I was raised, and nothing less than mom expected of me. I still have to make Christmas for my 7 year old.
Isn't it funny how personal crises show you who your true friends are? People I would have called a casual acquaintance turned up at my door with baking when I put out an SOS, while people I thought I could count on disappeared like smoke. A couple of my friends don't typically bake, but baked for me anyway. And people whose lives mom had no idea she touched came for her funeral and made a point of talking to me after.
My mom's best friend of 70 years is shattered, as my mom would have been if Mary had gone first. Mary's daughter and I were petrified that the other's mom would die first because we knew how it would devastate the one left behind. Just before mom's health plummeted, she had one last, wonderful conversation with her friend on the phone. Mary has had serious health issues lately as well, and the phone calls haven't been as chatty of late. Two hours after the last phone call, mom was on oxygen and four days later, she was gone. I am thankful they had that one last call although it makes things harder.
I prepared the funeral the way mom and I had discussed. I made it through without "making a scene" as mom would have said, although when my cousin read a letter to mom that he had sent her in September, I broke down for a moment. We'd had some significant family rifts in recent years, and up to the morning of the funeral, my husband was under instructions to keep one of my cousins away from me, because I would no longer hold my tongue about how he had treated my mom. And then mom died, and he came to the funeral, and what did it matter now anyway? I even invited him back to the house after, because really, what did it matter now? Mom was still gone and he would have to live with the regret.
For this past year, I have taken care of my mom to the best of my ability. I've fought for her, I've held her hand, I've advocated for her, and I've made a million big and little decisions so that the quality of her life were the best they could be under the horrendous circumstances we found ourselves mired in. I've been judged, I've been challenged and I've been criticized. My health, our family finances and my career have been compromised and my life was not my own. Mom said to me recently that she was sorry she had been a burden, and I told her it had never been a burden, not even once. She was slipping into a coma on the night before she died, but the nurse assured me we were nowhere near the end, so I went home to put my daughter to bed. The last thing I always said to my mom was "I love you, mama, I'll talk to you later". It was the last thing I ever said to my father, and I wanted to make sure that it was what mom heard too. She was more or less unresponsive, but roused enough to say "love you." back. When mom went into the coma, we had said all we had to say.
I lost my mom, my confidante, my sounding board, my friend and my protector. I do not regret or resent one second of the past year, because I was able to give back some of what mom gave me over the years. I can look mom's family, friends, caregivers and most importantly, myself squarely in the eye because I know I did everything I could do to the best of my ability to take care of my mom.
I love you mom. I miss you. Be at peace. I will be okay. I had a good example to follow.
Thursday, October 18, 2012
Monday, October 15, 2012
Cross Post from Lisa Mac's Musings
When mom moved to a nursing home, I was able to go out of town for a day without panic. We went to the CNE for the first time in a few years. Here's what happened when I found my brave and took the Kid on a ride.
Finding my brave at the CNE.
Finding my brave at the CNE.
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