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...
Showing posts with label parenting. Show all posts
Showing posts with label parenting. Show all posts
Saturday, September 12, 2015
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.
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.
Friday, March 16, 2012
Guilt Part 2
I've been sick for a week with a nasty chest infection that stole my voice a week ago and has yet to return it. I've finished the first round of antibiotics but I'm still nowhere near 100%. Last week, I went to bed Friday night and I got up on Tuesday when my husband went back to work. I missed choir practice, I missed singing at 3 funerals and I generally still feel crappy. I had to do interviews with a Kermit the Frog voice or by email. The Kid thinks it's hilarious. Me, not so much.
It's March Break (spring break) this week, so the Kid has been home. She's pretty good at keeping herself busy, but is still feeling a bit neglected because I've also had lots of deadlines.
The big problem, and therefore source of the most guilt, was the inability to go see my mom every day. I was there last Friday, and then I didn't go again until Tuesday. My husband and daughter did a Dairy Queen drive-by to mom on Saturday, but no one but home care went on Sunday and no one at all went on Monday because home care didn't show up.
Now I know how she spiralled so far so fast. She seemed to be managing fine the last time too. The difference is this time, I know what to look for. I had to go out last night, so my husband and daughter dropped over because her housekeeper is coming today and I forgot to leave the cheque when I was there on Wednesday. My husband checked when he got there, and mom hadn't remembered to eat yet, so he got her dinner. It takes a family to support an elderly parent and my husband has really stepped up this week when I fell to illness.
I know that I needed to stay home if I had any hope of getting better. I'm still beating myself up because I couldn't take care of mom and make sure she ate, was taking her pills etc. I haven't gotten there every day this week either because it's March Break and I have deadlines and a kid home from school.
I'm feeling really squeezed today. Time to step away from the keyboard and spend time with my kid...after we go check on my mom.
It's March Break (spring break) this week, so the Kid has been home. She's pretty good at keeping herself busy, but is still feeling a bit neglected because I've also had lots of deadlines.
The big problem, and therefore source of the most guilt, was the inability to go see my mom every day. I was there last Friday, and then I didn't go again until Tuesday. My husband and daughter did a Dairy Queen drive-by to mom on Saturday, but no one but home care went on Sunday and no one at all went on Monday because home care didn't show up.
- I know I needed to get better, and the only way to do that is to give up and be sick first.I haven't been this ill in years.
- I knew that this illness was the last thing my mom needed to deal with right now. she has chronic asthma and this thing goes straight for the bronchial tubes.
- I found out on Tuesday that mom forgot to take her pills on Monday because home care didn't come and hand them to her. I forgot to remind her to take her pills because I'm used to home care making sure she took them. Still beating myself up over THAT one.
- Mom didn't eat properly all weekend. She kept saying she was having beef and corn, which I know for a fact had been in her fridge since the prior week. It was also still there on Tuesday morning, so I'm not sure other than Ensure what she consumed all weekend.
Now I know how she spiralled so far so fast. She seemed to be managing fine the last time too. The difference is this time, I know what to look for. I had to go out last night, so my husband and daughter dropped over because her housekeeper is coming today and I forgot to leave the cheque when I was there on Wednesday. My husband checked when he got there, and mom hadn't remembered to eat yet, so he got her dinner. It takes a family to support an elderly parent and my husband has really stepped up this week when I fell to illness.
I know that I needed to stay home if I had any hope of getting better. I'm still beating myself up because I couldn't take care of mom and make sure she ate, was taking her pills etc. I haven't gotten there every day this week either because it's March Break and I have deadlines and a kid home from school.
I'm feeling really squeezed today. Time to step away from the keyboard and spend time with my kid...after we go check on my mom.
Monday, February 20, 2012
"When Grandma gets better..."
My mother and my daughter are the best of friends. From the time my mom first laid eyes on her granddaughter, it's been a closer than close relationship. The Kid loves going to grandma's house, where "grandma lets her do anything." From filling the bathtub to the rim to eating ice cream out of a crystal ashtray, eating ice cream right out of the container to drinking juice out of the crystal wine glasses, grandma's apartment is a magical place.
On nights when my husband had to work and I had other commitments, the Kid would go and hang out at Grandma's until daddy was finished work. She packed up her treasures, ransacked my mom's apartment, and although my mom was laid out the next day, she lived for those mother-granddaughter moments.
We did try a sleepover once, even though my kid didn't "sleep" in those days (we hadn't discovered melatonin yet). We were at a stag and doe for our friend's daughter when my cell phone rang at 2330 hrs. It was my mother, 'fessing up that she had fallen getting out of bed on the wrong side (because the Kid was lying beside her in the twin bed) and had "cut her hand." For my mother to be admitting that she cut her hand, I knew it was bad, so we headed over to my mom's immediately.
What my mother described as "cutting her hand" was in actuality a wound that needed 28 stitches. My mother took daily prednisone for years and her skin is like rice paper. She had hit her hand on the door knob when she fell and peeled all the skin off the back of her hand. She and my then 5 year old had managed to bandage it, and my amazing little girl tried to help grandma clean up the blood. Mom had a rubber glove on it to stop the blood from seeping through, and wasn't going to tell me until she started to feel light-headed and decided that maybe it wasn't a good idea...The Kid took it all in stride, but was pretty happy to see grandma the next morning.
All of our lives have changed since mom's medical crisis. The Kid is very empathic, intuitive and tuned into the vibrations of the house and of others. Her anxiety went off the charts when my mom went into crisis. The Kid who would call grandma five times a day if I let her refused to talk to grandma on the phone, and didn't want to visit grandma in the hospital.One visit to hospital to see grandma sent her OCD and Anxiety off the charts and gave the teacher a very difficult couple of days.
The Kid knows that sometimes grandmas don't come home from hospital because her paternal grandma didn't and is now an angel. Once my mom was home and settled into her apartment again, the Kid and my husband came over. It's different now-grandma is frail and weak and can't do the things she could do even a couple of months ago. The Kid is getting back into the habit of phoning grandma to tell her tales. The Kid loves repeating and grandma won't necessarily remember so it's a win-win.
The Kid is pretty smart, but she's still a child. She keeps making future plans that begin with "when Grandma is well enough to babysit me again..." A couple of days ago, she lay on the couch, her head on grandma's lap, my mother gently smoothing the Kid's hair. The Kid was talking a blue streak, making all kinds of plans that started with "when Grandma gets better and she can babysit again..." My mother looked up and caught my eye, and then looked away as my eyes welled with tears. We both know Grandma's babysitting days are over.
I have always been very cognizant of the fact that Grandma and Granddaughter have a finite amount of time together. I pray that it will be long enough for my daughter to remember her grandma. My mother, on her 80th birthday, announced to the whole family that "the Kid was her reward for 80 years of living" and that was true. It breaks my heart to see that relationship change, but it's not safe to leave my daughter alone with grandma any more, for either one of them.
My maternal grandmother was one of the most influential women in my life. She loved fiercely, told it as she saw it, and called us out when we were doing something she didn't approve of. She was all of 5 feet tall and weighed about 98 lbs in full clothes. She once took on a drug dealer with a cast iron frying pan because he turned up on the doorstep and threatened my cousin. We always knew that grandma loved us no matter what, even if she didn't particularly LIKE our choices at a given point in time. May my daughter know that her grandma loves her like that and may she remember it.
On nights when my husband had to work and I had other commitments, the Kid would go and hang out at Grandma's until daddy was finished work. She packed up her treasures, ransacked my mom's apartment, and although my mom was laid out the next day, she lived for those mother-granddaughter moments.
We did try a sleepover once, even though my kid didn't "sleep" in those days (we hadn't discovered melatonin yet). We were at a stag and doe for our friend's daughter when my cell phone rang at 2330 hrs. It was my mother, 'fessing up that she had fallen getting out of bed on the wrong side (because the Kid was lying beside her in the twin bed) and had "cut her hand." For my mother to be admitting that she cut her hand, I knew it was bad, so we headed over to my mom's immediately.
What my mother described as "cutting her hand" was in actuality a wound that needed 28 stitches. My mother took daily prednisone for years and her skin is like rice paper. She had hit her hand on the door knob when she fell and peeled all the skin off the back of her hand. She and my then 5 year old had managed to bandage it, and my amazing little girl tried to help grandma clean up the blood. Mom had a rubber glove on it to stop the blood from seeping through, and wasn't going to tell me until she started to feel light-headed and decided that maybe it wasn't a good idea...The Kid took it all in stride, but was pretty happy to see grandma the next morning.
All of our lives have changed since mom's medical crisis. The Kid is very empathic, intuitive and tuned into the vibrations of the house and of others. Her anxiety went off the charts when my mom went into crisis. The Kid who would call grandma five times a day if I let her refused to talk to grandma on the phone, and didn't want to visit grandma in the hospital.One visit to hospital to see grandma sent her OCD and Anxiety off the charts and gave the teacher a very difficult couple of days.
The Kid knows that sometimes grandmas don't come home from hospital because her paternal grandma didn't and is now an angel. Once my mom was home and settled into her apartment again, the Kid and my husband came over. It's different now-grandma is frail and weak and can't do the things she could do even a couple of months ago. The Kid is getting back into the habit of phoning grandma to tell her tales. The Kid loves repeating and grandma won't necessarily remember so it's a win-win.
The Kid is pretty smart, but she's still a child. She keeps making future plans that begin with "when Grandma is well enough to babysit me again..." A couple of days ago, she lay on the couch, her head on grandma's lap, my mother gently smoothing the Kid's hair. The Kid was talking a blue streak, making all kinds of plans that started with "when Grandma gets better and she can babysit again..." My mother looked up and caught my eye, and then looked away as my eyes welled with tears. We both know Grandma's babysitting days are over.
I have always been very cognizant of the fact that Grandma and Granddaughter have a finite amount of time together. I pray that it will be long enough for my daughter to remember her grandma. My mother, on her 80th birthday, announced to the whole family that "the Kid was her reward for 80 years of living" and that was true. It breaks my heart to see that relationship change, but it's not safe to leave my daughter alone with grandma any more, for either one of them.
My maternal grandmother was one of the most influential women in my life. She loved fiercely, told it as she saw it, and called us out when we were doing something she didn't approve of. She was all of 5 feet tall and weighed about 98 lbs in full clothes. She once took on a drug dealer with a cast iron frying pan because he turned up on the doorstep and threatened my cousin. We always knew that grandma loved us no matter what, even if she didn't particularly LIKE our choices at a given point in time. May my daughter know that her grandma loves her like that and may she remember it.
Tuesday, February 14, 2012
Parenting Fail
It's 8:20 am. My daughter and I are scurrying around, trying to make it out the door to school. She's in the hall getting her boots and coat on while I brush my teeth. It's Valentine's Day, and she wants to get there early. Valentine's Day is bigger than Christmas when you're in Grade 1.
And then the phone rings. Since all of my friends and family know my kid starts school at 8:30am it can only be bad news or something to do with my mom. Sure enough, it's the physiotherapist wanting to re-commence her physio sessions. He also wants to know what the hospital determined with my mother, because he saw her before and after what I still suspect was the second mini-stroke. I explain that I'm rushing out to school, but he has appointments he has to make, so we agree on a time for Friday morning.
I sprint downstairs because now it's 8:29 am and the bell will ring any second. My daughter is fuming in the front hall because she wanted to be early. We hurry to the car, which my husband has thoughtfully cleared of snow for me, head to school and pull into the drive-through. The school yard is empty. Parenting fail.
I drove to Walmart after choir last night, and joined a bunch of other last-minute shoppers pawing through Valentine presents. While I had remembered the card for my husband, mom and daughter, I forgot that for my daughter, the present had to be there before school. 2330 hrs is not the time to be indecisive, so I headed for the Barbie aisle and came home with another Barbie and some clothes. My daughter was thrilled this morning, but it was thanks to my husband that I made the trip after he asked if I had anything for our daughter for Valentines Day as I was heading out the door last night. I always take care of that kind of thing.
And therein lies the problem. I always take care of things. I take care of the schedules, the cards, the birthday presents, the dinners, and now, my mother, her appointments, her meds, her hygiene. I always take care of things...
How am I going to do this every day?
And then the phone rings. Since all of my friends and family know my kid starts school at 8:30am it can only be bad news or something to do with my mom. Sure enough, it's the physiotherapist wanting to re-commence her physio sessions. He also wants to know what the hospital determined with my mother, because he saw her before and after what I still suspect was the second mini-stroke. I explain that I'm rushing out to school, but he has appointments he has to make, so we agree on a time for Friday morning.
I sprint downstairs because now it's 8:29 am and the bell will ring any second. My daughter is fuming in the front hall because she wanted to be early. We hurry to the car, which my husband has thoughtfully cleared of snow for me, head to school and pull into the drive-through. The school yard is empty. Parenting fail.
I drove to Walmart after choir last night, and joined a bunch of other last-minute shoppers pawing through Valentine presents. While I had remembered the card for my husband, mom and daughter, I forgot that for my daughter, the present had to be there before school. 2330 hrs is not the time to be indecisive, so I headed for the Barbie aisle and came home with another Barbie and some clothes. My daughter was thrilled this morning, but it was thanks to my husband that I made the trip after he asked if I had anything for our daughter for Valentines Day as I was heading out the door last night. I always take care of that kind of thing.
And therein lies the problem. I always take care of things. I take care of the schedules, the cards, the birthday presents, the dinners, and now, my mother, her appointments, her meds, her hygiene. I always take care of things...
How am I going to do this every day?
Sunday, February 12, 2012
Call me Chicken Salad
The Sandwich Generation is such an odd term. While I am sandwiched between a child in grade 1 and an elderly mother who has just been diagnosed with dementia, "sandwich" isn't quite the word I'd use. Lately, I've felt more like a boob in the middle of a mammogram than a sandwich filling. A filling has room to spread to accommodate the bread on either side; the boob, not so much.
My mother and I are rapidly becoming frequent fliers in the Ontario health care system. In the last year, my mom has had several treatments, including 6 weeks of radiation for Squamous Cell Carcinoma, and is currently growing two new lumps in the same general vicinity. We spent 12 hours in ER a couple of years ago because mom fell getting out of bed and peeled the skin off the back of her hand like a banana. 28 stitches to fix that one. We spent another 4 hours because she had whacked her leg and developed a giant blood blister that had to be surgically drained. And in the last 3 weeks, we've spent 33 hours in ER because she fell and whacked her head, which caused a series of events that resulted in a 27 hour wait in hospital, and a 2 week hospitalization, most of which mom only has a hazy recollection of.
And on the other side of the coin, my daughter is in grade 1. Thanks to her birth mother, she has Obsessive-Compulsive Disorder and Anxiety Disorder that we know of. She has symptoms of ADHD, but isn't "bad" enough for a clinical diagnosis, and she may or may not have Fetal Alcohol Spectrum Disorder. Some of her OCD manifests in hoarding and repetition. She also fixates, usually on people. Her Anxiety manifests in maniacal laughter that tends to escalate. She also screams alot when she's stressed-I mean full on, multi-octave, rattle the ear screams which is often reserved for when she's in the back seat of the car. If it's at rush hour, or in the middle of a round-about so much the better.
My daughter and my mom are tight. My super-strict mother who still tries to tell her 49 year old daughter what to wear, and still feels she needs to remind me to get my work done folds like a deck chair when it comes to my daughter. I once came back from a meeting to find my daughter eating ice cream out of a crystal ashtray. My mother only recently gave up playing hide and seek with her granddaughter. On January 14, my mother collapsed as she was walking up to the door of her apartment building after church. She hit her head on the pavement, and she was conscious but not cognizant. And my daughter witnessed the whole thing. Mom and I spent 6 hours in ER that night, and that event triggered a chain reaction downward spiral that led to the 2 week hospitalization.
My daughter already knows that sometimes when grandmas go into hospital, they don't come out again. We lost my husband's mother to cancer a year ago, and my daughter went to the hospice every night to hang with grandma. So when my mother went into hospital, her anxiety kicked into overdrive. We took her up to see my mom one night, and she was right off the charts at school for the next two days. My mom needed a granddaughter fix; my daughter couldn't handle another grandma in hospital. Parenting fail.
So I juggle. I juggle the needs of a young special needs child with an elderly parent trying to cope and come to terms with her worst nightmare. I juggle the roles of writer, editor, wife, mother, friend and try not to lose myself in the process. Sometimes the balls slip, and sometimes I choose to put one down. I make the best decision I can with the information I have at the time. Sometimes I make the wrong one. My husband helps as he can and my friends keep me sane. But then, as we're finding out with mom, sanity is a relative concept.
My mother and I are rapidly becoming frequent fliers in the Ontario health care system. In the last year, my mom has had several treatments, including 6 weeks of radiation for Squamous Cell Carcinoma, and is currently growing two new lumps in the same general vicinity. We spent 12 hours in ER a couple of years ago because mom fell getting out of bed and peeled the skin off the back of her hand like a banana. 28 stitches to fix that one. We spent another 4 hours because she had whacked her leg and developed a giant blood blister that had to be surgically drained. And in the last 3 weeks, we've spent 33 hours in ER because she fell and whacked her head, which caused a series of events that resulted in a 27 hour wait in hospital, and a 2 week hospitalization, most of which mom only has a hazy recollection of.
And on the other side of the coin, my daughter is in grade 1. Thanks to her birth mother, she has Obsessive-Compulsive Disorder and Anxiety Disorder that we know of. She has symptoms of ADHD, but isn't "bad" enough for a clinical diagnosis, and she may or may not have Fetal Alcohol Spectrum Disorder. Some of her OCD manifests in hoarding and repetition. She also fixates, usually on people. Her Anxiety manifests in maniacal laughter that tends to escalate. She also screams alot when she's stressed-I mean full on, multi-octave, rattle the ear screams which is often reserved for when she's in the back seat of the car. If it's at rush hour, or in the middle of a round-about so much the better.
My daughter and my mom are tight. My super-strict mother who still tries to tell her 49 year old daughter what to wear, and still feels she needs to remind me to get my work done folds like a deck chair when it comes to my daughter. I once came back from a meeting to find my daughter eating ice cream out of a crystal ashtray. My mother only recently gave up playing hide and seek with her granddaughter. On January 14, my mother collapsed as she was walking up to the door of her apartment building after church. She hit her head on the pavement, and she was conscious but not cognizant. And my daughter witnessed the whole thing. Mom and I spent 6 hours in ER that night, and that event triggered a chain reaction downward spiral that led to the 2 week hospitalization.
My daughter already knows that sometimes when grandmas go into hospital, they don't come out again. We lost my husband's mother to cancer a year ago, and my daughter went to the hospice every night to hang with grandma. So when my mother went into hospital, her anxiety kicked into overdrive. We took her up to see my mom one night, and she was right off the charts at school for the next two days. My mom needed a granddaughter fix; my daughter couldn't handle another grandma in hospital. Parenting fail.
So I juggle. I juggle the needs of a young special needs child with an elderly parent trying to cope and come to terms with her worst nightmare. I juggle the roles of writer, editor, wife, mother, friend and try not to lose myself in the process. Sometimes the balls slip, and sometimes I choose to put one down. I make the best decision I can with the information I have at the time. Sometimes I make the wrong one. My husband helps as he can and my friends keep me sane. But then, as we're finding out with mom, sanity is a relative concept.
Subscribe to:
Posts (Atom)