Chris & I watched the first episode of Speechless last night, an ABC sitcom about a family whose teenage son has cerebral palsy, non-verbal, and uses an Augmentative and Alternative Communication (AAC) device. The disability community has been waiting with baited breath for this show: is it going to respect the disabled character and their family? The fact that the main character of the show, JJ, is an actor who actually has cerebral palsy (instead of a non-disabled actor played a disabled actor which is the norm) generated a lot of buzz and hope that this show would be a more accurate portrayal of disabled people's lives.
<spoilers>
The very first scene opens up with the family in a parking lot as JJ, who is in a wheelchair, is being lifted from their van. 2 teens are gawking and staring and JJ raises his hand and his mother, Maya, interprets for them saying that he's all there upstairs (meaning not cognitively disabled) and giving them the finger (since he doesn't have the fine motor skill to isolate one finger). Something about this scene struck me as a little off. It's pretty common for physically disabled people to make it very clear that they don't have an intellectual disability, which then places those who do have ID at the bottom of the pecking order of humanity and that in and of itself is damaging.
Overall I loved Maya and was obviously able to relate to her craziness :) The idea of buying the worst house in a wealthy neighborhood to obtain better services is something that I have thought about. I love that she's a fighter and is willing to fight for her kid. And I also loved the father's character -- this is definitely the dynamic Chris & I have where I'm constantly scouring to find the best services, schools, etc. and he is the calm force who listens but also pulls me back.
The sibling dynamic that was portrayed was very interesting. I loved that they're just a normal family and that the brother and sister have adapted to their brother's unique way of communicating. But I also loved the authenticity that one of the siblings showed in expressing his frustration at the fact that the thrust of the family was always for JJ and that his needs and desires were not taken into consideration. I think about this all of the time. At this point there has been almost zero disruption into the older kids's lives due to Elias's disability. I mean, of course they get annoyed with him sometimes, but if he was NT there would be different annoyances than what there are now due to autism (stimming, being loud, grabbing their hands to help him get something). All of his therapy is contained at school, so they aren't being dragged to his appointments, we aren't dealing with a wheelchair so our activities aren't limited, etc. But I have wondered what their response would/will be if we ever underwent a dramatic upheaval such as moving to get Elias into a better school district. But honestly, Elias endures way more than they do for our family -- this kid sat through baseball game after baseball game this summer (we counted it up and between Ben & Caroline there were about 50 games), which was after sitting through floor hockey and soccer games and swim meets. There have been so many hours sitting through his siblings sports that I actually don't feel at all bad if they have to sit through a therapy appointment now and then.
I also loved the dig at the "inspiration porn" culture when JJ goes into a classroom and his teacher makes all of the students stand up and clap for him, as if having a disability and making it into school is something to be celebrated. Disabled people are people and not simply objects of inspiration. Yes, there are many inspiring things to be gleaned from them as they work to exist in a body and society that is not always accommodating, but to reduce them down to a feel-good narrative and not people who have feelings, thoughts, and goals is wrong.
</spoilers>
I'm thrilled to have this story portrayed on TV -- the story of a family with a disabled child and their experience with the world. Though our family isn't dealing with cerebral palsy, it's good to see disability and alternate forms of communication gaining exposure and maybe taking one more step towards de-stigmatization and inclusivity.
Thursday, September 22, 2016
Thursday, September 8, 2016
clearing something up
I need to talk about something that has been bothering me for awhile. Yes, it's been a long time since I've written and lots has happened around these parts! But this can't wait any longer.
I want to state unequivocally and without ambiguity that IT IS NOT OKAY TO MURDER A DISABLED PERSON.
Full stop.
No qualifiers. No addendum such as "unless they can't take care of themselves." No "unless they're non-verbal." No "unless they need around-the-clock care." Nothing.
I want you to know that if my autistic child died that I would mourn him as deeply as I would my non-disabled children. There would be no "well, at least he was the disabled child and not one of the other two who don't have as many needs." In fact, I might grieve more deeply because I was not able to protect my most vulnerable child. This goes without saying that I could never murder my disabled child and even if I was sick enough to think that I could, that would still not make it even close to being justified.
I feel like I need to say this because before I had a disabled child and would hear about these so-called "mercy killings" (which is a hideously euphemistic term for filicide), I'd think "Oh, those poor parents. They must not have had any options, what a ghastly situation. Maybe the child didn't know what was happening." This is ableism at its absolute rock bottom and I repent of ever having had those thoughts. See how I was sympathizing with the parent and not the child (even when it was an adult child) and not conferring feelings or ability on them? Our society considers the disabled to be a drain on resources, people who are unable to contribute, people who are less than. Unless you ascribe to the principles of the Nazi party, this is horribly and dangerously wrong.
The bible says that as human beings, we are made in His image, the image of the divine, the imago dei. Because of that, we have inherent value because of Him who is of ultimate, incalculable value.
This article by the Autistic Self Advocacy Network is what spurred this post today and encapsulates my own thoughts well. Re-posted below.
I want to state unequivocally and without ambiguity that IT IS NOT OKAY TO MURDER A DISABLED PERSON.
Full stop.
No qualifiers. No addendum such as "unless they can't take care of themselves." No "unless they're non-verbal." No "unless they need around-the-clock care." Nothing.
I want you to know that if my autistic child died that I would mourn him as deeply as I would my non-disabled children. There would be no "well, at least he was the disabled child and not one of the other two who don't have as many needs." In fact, I might grieve more deeply because I was not able to protect my most vulnerable child. This goes without saying that I could never murder my disabled child and even if I was sick enough to think that I could, that would still not make it even close to being justified.
I feel like I need to say this because before I had a disabled child and would hear about these so-called "mercy killings" (which is a hideously euphemistic term for filicide), I'd think "Oh, those poor parents. They must not have had any options, what a ghastly situation. Maybe the child didn't know what was happening." This is ableism at its absolute rock bottom and I repent of ever having had those thoughts. See how I was sympathizing with the parent and not the child (even when it was an adult child) and not conferring feelings or ability on them? Our society considers the disabled to be a drain on resources, people who are unable to contribute, people who are less than. Unless you ascribe to the principles of the Nazi party, this is horribly and dangerously wrong.
The bible says that as human beings, we are made in His image, the image of the divine, the imago dei. Because of that, we have inherent value because of Him who is of ultimate, incalculable value.
The God said, "Let us make man in our image, after our likeness." - Genesis 1:26I'm sad that I even have to put these words to paper (or, computer screen). But because of the massacre of 19 disabled people in Japan, because far too many parents choose to kill their disabled children, because the media portrays these murders as understandable and even justifiable. Which then opens the door for a certain group of parents to think "well, maybe."
This article by the Autistic Self Advocacy Network is what spurred this post today and encapsulates my own thoughts well. Re-posted below.
Killing Words
by Zoe GrossLet me present to you a sequence of events.On March 6th, a 22-year-old autistic man named George Hodgins was murdered in Sunnyvale, California. His mother, Elizabeth, pulled out a gun, shot him point-blank, and then killed herself.In the following days and weeks, journalists wrote about George Hodgins’ murder. In their articles they called him “low functioning and high maintenance,” and called Elizabeth Hodgins “a devoted and loving mother.” They sought out quotes from other parents of autistic children, who normalized the crime by saying things like “every mother I know who has a child with special needs has a moment just like that.”People came to comment on these articles. They said that they felt sympathy for the mother. They called her George’s “guardian angel.” They said no one should judge her unless they had walked in her shoes. They said that it wasn’t wrong because he was autistic, and autistic children are hell to raise. They said that it wasn’t wrong because she was obviously responding to a lack of services. (In fact, she had refused services.) They said that it wasn’t wrong because he was disabled, so and his life couldn’t have been very good anyway.On March 8th, Robert Latimer went on television to talk about how loving and compassionate it was when he gassed his disabled daughter Tracy. He called for “euthanasia” – the murder of disabled children by their parents – to be legalized in Canada. A woman who appeared with him agreed. She has two disabled children who she would like to kill, but she can’t because it is against the law. No opposing viewpoints were presented.On March 17th, the Autism Society released a statement about “the tragic story of Elizabeth Hodgins,” which “shows that high stress on parents is very common in the autism community.” The statement, signed by both Autism Society presidents, blamed her actions on a lack of services. They also noted that “the divorce rate among parents with a child with autism is as high as 70 percent due to the pressure,” (this is actually a myth that was debunked in 2010). They never even mentioned George’s name.On March 31st, Patricia Corby drowned her 4 year old autistic son Daniel in the bathtub, in San Diego, California.***We need to start looking at these murders as copycat crimes, which are encouraged when murders of disabled people receive positive press coverage. Just as Katie McCarron’s murder followed “Autism Every Day,” Daniel Corby’s murder follows George Hodgins’ murder, and subsequent media coverage which excused, explained away, or even promoted the murder of disabled people by our parents.When journalists call murderers “loving and devoted parents,” when television shows give Robert Latimer airtime, when parents normalize murder by saying that all special-needs parents have murderous thoughts, the result is an environment in which these murders are seen as acceptable. Media coverage like this sends a message that homicide is a normal, understandable response to any discomfort one might experience while parenting a disabled child, and we can’t pretend that other parents of disabled kids aren’t hearing that message.***Let me present to you a sequence of events.If you wrote an article about George Hodgins’ murder, or if you gave a quote for one, or if you covered it on television, or if you blogged about it, or if you commented on it,andif you said that no one should “judge” the murder as wrong,if you said that Elizabeth Hodgins was “driven to murder” by George’s autism or by “lack of services,”if you called the murder “understandable,”if you said “it wasn’t a murder, it was a mercy killing,”if you said “all parents of special-needs children have felt this way,”please take a minute to wonder if Patricia Corby heard you.
Monday, June 13, 2016
new therapy
So have just started a new therapy for Elias. It's called Sensory Enrichment Therapy and though it has undergone some clinical trials, it's pretty new. I've read the studies and some children report remarkable "improvement" such that they move from being severely autistic to moderately autistic or moderately to minimally autistic. This therapy reportedly helps the brain open up new pathways and has been reported to help with sleep, eating, attention, speech, and a variety of other behaviors that place a person on the autism spectrum.
How does it work? The idea is to stimulate two or more senses at a time (focusing specifically on smell and touch). For example, the child smells some essential oil while rubbing their back. Or they listen to classical music while touching a variety of textures like sandpaper, silk, etc. Or they put each hand in two bucket of water, one cold and one warm, and switch after a time, while smelling an essential oil. That sort of thing. Stimulating a variety of senses can increase some hormone that will open neural pathways or something neurosciency like that.
Elias's school is offering this service free for three months through a program called Mendability. Since there is a low barrier to entry, my thought is that we might as well try it out. I do have a few unwritten guidelines when it comes to therapy for Elias:
- It must be non-invasive. No ingestion / injection / inhalation of anything chemical.
- It must respect his autistic identity. No forcing eye contact or forcible elimination of stimming.
- It must not drain a significant portion of our resources, either time or money or both.
This therapy meets these criteria. We do have to buy things like essential oils, a few textured welcome mats, a few miscellaneous items like wooden boards and fabric squares, but nothing too onerous or expensive. We administer most of it at home, it only takes a few minutes, and it gives us ideas of things to do with him, because frankly, that's not always very easy. If we hate it after three months, then we can stop but we might as well give it a try.
However, this also makes me pause and reflect on whether I'm going to be THAT mother who is searching for something, anything, to "cure" my child or if this signifies the beginning of the slippery slope of wanting to do anything to make my child act "normal." There's such a fine balance in my mind between loving him exactly how he is and not wanting him to change (which is where I live most days) and understanding the reality that he is going to need to improve his ability to pay attention, his verbal communication skills, as well as his social skills to navigate and find his place in this world. Currently, he gets developmental, speech, and occupational therapy at school, as well as an academic readiness session (working on sitting at a table, doing tasks, using the Handwriting Without Tears curriculum) once per week. We have seen fantastic progress in so many areas. However, we are having difficulties with picky eating and other sensory issues like clipping his toenails -- when I tell him that I want to clip his toenails, he says "No. Fingers?"
So far he's not loved the various scents that we've tried. The only one he's been receptive to is the orange scent. The others, sage, cinnamon, tea tree, spearmint, he's tolerated it on the collar of his t-shirt but not interested in smelling it on a cotton ball or straight out of the bottle. One of the exercises is to listen to classical music and view classic art pieces, which we do through a YouTube video. I don't know how it is for him, but it's relaxing and therapeutic for me at least :) Some of the exercises seem kind of silly, I find myself wondering "Can brushing his face with this paintbrush really help him?" But we'll press on and be as faithful as we can to the program and hopefully we'll notice some positive results in terms of speech and trying new foods.
So far he's not loved the various scents that we've tried. The only one he's been receptive to is the orange scent. The others, sage, cinnamon, tea tree, spearmint, he's tolerated it on the collar of his t-shirt but not interested in smelling it on a cotton ball or straight out of the bottle. One of the exercises is to listen to classical music and view classic art pieces, which we do through a YouTube video. I don't know how it is for him, but it's relaxing and therapeutic for me at least :) Some of the exercises seem kind of silly, I find myself wondering "Can brushing his face with this paintbrush really help him?" But we'll press on and be as faithful as we can to the program and hopefully we'll notice some positive results in terms of speech and trying new foods.
Thursday, May 26, 2016
baseball
If you know me, you probably know that I like baseball. A lot. Specifically, I love the Detroit Tigers: we've been in a relationship since 1984 (which is the last time they won the World Series). SOMEHOW I've managed to pass the love of baseball onto my eldest son -- not sure how that happened.... Maybe it's because I have an MLB.tv subscription and have the Tigers on almost every night? And maybe it's because we go to at least one Tigers v. White Sox games at U.S. Cellular Field and I wear my Tigers shirt and cheer really loud? It's hard to tell. </sarcasm> It certainly doesn't hurt that the Tigers have been good (save last year) for pretty much the entire time he's been alive. Caroline also plays on a Park District team and if Elias knows what's good for him he'll play too :)
I've already posted on my feelings about youth sports and now we find our calendar filled to the brim with practices and games. I might as well just stop writing in my kids's practices and games and just write BASEBALL over the weeks in June and July. I'd be lying if I didn't say I loved it though. I love watching my kids play. Ben has a natural talent for it, but he puts an inordinate amount of pressure on himself to perform and I'm not sure how to get him to ratchet it down. This year he is playing on an official Little League team as well as a Chicago Park District team (don't ask). He's part of the Garfield Park Little League 12U team and they're currently tied for first place. He's batting second and playing 2nd base and the outfield and he's almost always the youngest and smallest kid on the field on either team.
We really like this league: the competition is superior to the Park District, as is the instruction. Garfield Park is located on the west side of the city in a mostly African-American area and so the majority of kids that it draws are of course African-American. Ben is the only non African-American kid on the team and it is one of the things I love best about this league. The precipitous drop in the number of African-Americans in baseball is well-documented which is a dreadful loss of talent from the game.
I am very happy to support baseball in the inner city with black coaches who teach and set a good example, demand discipline and the best effort from the young men in their charge. The winning is just the icing on the cake!
I've already posted on my feelings about youth sports and now we find our calendar filled to the brim with practices and games. I might as well just stop writing in my kids's practices and games and just write BASEBALL over the weeks in June and July. I'd be lying if I didn't say I loved it though. I love watching my kids play. Ben has a natural talent for it, but he puts an inordinate amount of pressure on himself to perform and I'm not sure how to get him to ratchet it down. This year he is playing on an official Little League team as well as a Chicago Park District team (don't ask). He's part of the Garfield Park Little League 12U team and they're currently tied for first place. He's batting second and playing 2nd base and the outfield and he's almost always the youngest and smallest kid on the field on either team.
We really like this league: the competition is superior to the Park District, as is the instruction. Garfield Park is located on the west side of the city in a mostly African-American area and so the majority of kids that it draws are of course African-American. Ben is the only non African-American kid on the team and it is one of the things I love best about this league. The precipitous drop in the number of African-Americans in baseball is well-documented which is a dreadful loss of talent from the game.
I am very happy to support baseball in the inner city with black coaches who teach and set a good example, demand discipline and the best effort from the young men in their charge. The winning is just the icing on the cake!
Tuesday, April 26, 2016
We Came, We Saw, We Conquered
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| Here we are right outside of Diagon Alley |
Fast forward to now: our plan was to go to Florida and mainly do Universal Studios, no Disney this time. Elias has not shown any interest in Disney, Mickey Mouse or any of the Disney movies to this point so we weren't going to spend the hundreds of dollars to do Disney in addition to hundreds of dollars for Universal. So really, this particular vacation in large part was for my oldest two as well as me and Chris since we both are HP fans. Because of this fact, I was very anxious about it, mostly because I didn't know how Elias would react to any of it. The opportunities for things to go badly were endless in my mind especially because my brain automatically defaults to WORST CASE SCENARIO:
- He would have a meltdown in the TSA Security line and/or try to run to the front of the line
- Wouldn't want to get on the airplane
- Once on the airplane he'd scream the whole flight
- After the layover in Atlanta he wouldn't get on the second flight
- He wouldn't get in the car that we were renting for the week (he has shown a reluctance to get into other people's cars from time to time)
- He wouldn't go in the bathrooms at any of the places we were going to be
- He wouldn't sleep well in a new environment
- He'd hate Universal Studios: crowds, heat, lines, rides, you name it
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| Silly mama, why were you so worried? |
Do you want to know how many of these WORST CASE SCENARIOS happened? None. Zero. I credit Elias and also his therapists who have been helping him. We did some prep work with him and took advantage of the built-in accommodations available to us. Here's what I think helped:
- About a month before vacation, Caroline & I went to Denver to visit some very dear friends. Because of that trip, I realized what a sensory nightmare air travel is: lots of people, unfamiliar building, waiting in line, new smells, lots of noise. So I talked to his speech and OT who did some flight-related things with him during school and we watched several YouTube videos about the airport and flying. I found this one helpful, as well as this one. Then one of my friends clued me into the Daniel Tiger episode where they show a video of a girl going through airport security! Score. (Can I just give a shout out to YouTube too? I love that I can find a video of just about anything)
- We also adapted a social story from this site and customized it for our trip. He didn't seem too interested in it but we read it a few times to him.
- TSA Cares: So, this seems like a bit of an oxymoron, right? I mean, they don't seem to care one whit when you've been standing in line for 45 minutes and about to miss your flight and they pull you over to wand you. But, they do have a special program for people with disabilities. I called them the day before we left and they assigned us a Passenger Support Specialist who met us at the Delta check-in counter and escorted us past the crazy long security at Midway airport (at 5:00 AM on Saturday morning!!!) and right to the front of the line!!
- We got an Attraction Assistance Pass at Universal Studios which basically functioned as their Express Pass where if the posted wait time is more than 30 minutes they wrote on our pass and we could come back at the time they listed so we didn't have to wait in line. We could use this even if Elias didn't want to ride on the ride. We also took advantage of their child swap program so that Chris could go on with the older two kids, I waited in the Child Swap room and when they got off I could get right on. The combination of both of these things eliminated a ton of waiting around and made things significantly easier for all of us.
- We rented a stroller at Universal. Chris at first thought that Elias could just walk or that he could carry him. This unfortunately wasn't the case. It became apparent pretty quickly that Elias was going to want me to carry him through the park for much of the time. He's almost 50 pounds and that was not going to be an option. So we got him a mini kiddie car each day we were at the park and we were all much happier as a result. He had his own little space that kept him isolated from all of the crowds and I was significantly happier not having to carry him or hear him crying in Chris's arms.
So we did three days of Universal, but we also had many opportunities to do the activity he loves most in the world: swimming. We visited my dear aunt and uncle who live on the gulf side one day and have a pool in their backyard, and they live right on the beach! We were also at a resort that had 7 separate pools, so there is no need to feel sorry for this child getting dragged around Universal Studios, he had fun on vacation too :)
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| No suffering going on here |
Friday, April 8, 2016
lessons learned
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| I am so thankful for this boy. |
1. God is faithful
Yes, I knew this before. But I knew it as an academic exercise. His faithfulness and provision for us has been kind of outrageous: at every turn I have seen evidence of Him opening doors and creating opportunities for us. We needed help and He provided it through Elias's school, through friends and family who have loved us and walked through this with us, through our church who accommodates and cares for Elias.
2. When I am weak, He is strong
So, this is a corollary to #1 and a verse (2 Corinthians 12:10) that I memorized shortly after becoming a Christian in college. Again, it was more or less something I knew in my head but hadn't really experienced. I have always had the resources to do what I needed: I have never had to depend on God for shelter, food, clothing, and other basic necessities. And now I find myself in a situation in which I am powerless. Yes, I can find therapists for him. Yes, we have resources to get him at least a minimal amount of support. But we cannot make him talk. We cannot make him learn. What he needs is significantly far beyond our means or ability. This has to be the work of the power of God in Elias's life.
3. Autism is a descriptive diagnosis, not a prescriptive one
In those difficult days after his diagnosis, I was so sad because I was remembering all of the things I had read and seen about autism up to that point. The only positive thing I could think of was that Einstein was supposedly autistic. The fear-mongering that the likes of Autism Speaks and Jenny McCarthy had spread was fully imbued in me to that point where autism was just a step up from your child being diagnosed with a terminal disease. I now see that autism DESCRIBES one part of who he is. Autism shades and nuances who he is but it also is not the only thing about him. Far from it. Similarly, autism is not a prescriptive diagnosis. It does not tell us what the future is going to be for him, it does not tell us what kind of abilities he will or will not have. It's not a condemnation. It helps us know how to better support and teach him. And very importantly it gets him the services that he needs through insurance.
4. Awareness of the disability communitiy
Similar to white privilege where white people never need to really think about or engage the needs of racial minorities, ableism is a form of hegemony where disabled people are pushed to the margins and are at best disregarded, ignored and only grudgingly accommodated. At worst they are bullied, scorned, and even killed, sometimes by their own parents. I fell into the ableist camp before his diagnosis. I didn't need to think about disability so I didn't. And now that we're knee-deep in disability, it's always on my mind and it's opened my eyes to how much has been done to disabled people in the past, how far we've come (thank you George H. W. Bush for signing into law the ADA / IDEA act!!). I am proud to be part of this community, even as a neophyte.
5. Recognizing differences in everyone
Since I was previously ignorant of disability and its various manifestations which, when non-disabling, are more commonly known as just differences, I began to see that my daughter has some sensory issues that I never understood before. Because of Elias's diagnosis, I am a lot more sympathetic to my other kids and have a better understanding of them. I do more assessing of the situation before I jump to conclusions about their behavior. I also see things in myself as well, like how I don't like large crowds or how cranky I get when things are too loud.
I feel optimistic one year post-diagnosis. We have a ways to go and we are obviously in the long-game but I absolutely know that Elias is in the best possible place for him at his preschool. He is making good gains in language, attention, and awareness. I am SO glad that we live in a time when autism and disability in general is starting to be more visible and less vilified. A time when I am not pressured to institutionalize my child or told that there wasn't anything that could be done to help him.
I am so proud to be Elias's mom. And I am so thankful that God has used him as a catalyst for change in me.
3. Autism is a descriptive diagnosis, not a prescriptive one
In those difficult days after his diagnosis, I was so sad because I was remembering all of the things I had read and seen about autism up to that point. The only positive thing I could think of was that Einstein was supposedly autistic. The fear-mongering that the likes of Autism Speaks and Jenny McCarthy had spread was fully imbued in me to that point where autism was just a step up from your child being diagnosed with a terminal disease. I now see that autism DESCRIBES one part of who he is. Autism shades and nuances who he is but it also is not the only thing about him. Far from it. Similarly, autism is not a prescriptive diagnosis. It does not tell us what the future is going to be for him, it does not tell us what kind of abilities he will or will not have. It's not a condemnation. It helps us know how to better support and teach him. And very importantly it gets him the services that he needs through insurance.
4. Awareness of the disability communitiy
Similar to white privilege where white people never need to really think about or engage the needs of racial minorities, ableism is a form of hegemony where disabled people are pushed to the margins and are at best disregarded, ignored and only grudgingly accommodated. At worst they are bullied, scorned, and even killed, sometimes by their own parents. I fell into the ableist camp before his diagnosis. I didn't need to think about disability so I didn't. And now that we're knee-deep in disability, it's always on my mind and it's opened my eyes to how much has been done to disabled people in the past, how far we've come (thank you George H. W. Bush for signing into law the ADA / IDEA act!!). I am proud to be part of this community, even as a neophyte.
5. Recognizing differences in everyone
Since I was previously ignorant of disability and its various manifestations which, when non-disabling, are more commonly known as just differences, I began to see that my daughter has some sensory issues that I never understood before. Because of Elias's diagnosis, I am a lot more sympathetic to my other kids and have a better understanding of them. I do more assessing of the situation before I jump to conclusions about their behavior. I also see things in myself as well, like how I don't like large crowds or how cranky I get when things are too loud.
I feel optimistic one year post-diagnosis. We have a ways to go and we are obviously in the long-game but I absolutely know that Elias is in the best possible place for him at his preschool. He is making good gains in language, attention, and awareness. I am SO glad that we live in a time when autism and disability in general is starting to be more visible and less vilified. A time when I am not pressured to institutionalize my child or told that there wasn't anything that could be done to help him.
I am so proud to be Elias's mom. And I am so thankful that God has used him as a catalyst for change in me.
Sunday, March 6, 2016
Knowing what he knows
Recently, we had a parent-teacher conference for Elias. It was a good meeting since Elias has been exhibiting some very encouraging progress as I've documented in snippets both here and on Facebook (as well as in person if I've seen you recently!). One thing that I said at the very end of the meeting was that it was difficult for me to know what he knows and what he doesn't know, which is a common difficulty among those parents who have children with communication deficits. With my other two it was easy because they never stop talking; with him it's clear to me that he knows exponentially more than he can communicate, which is seen through his receptive language but also every once in awhile it will come out when we least expect it. Case in point: on the way home from this very same conference, we were stopped at a stop sign and Elias said "O. Octagon. O. Octopus." Yes, indeed.
However, it makes me question at what level I should be teaching him and at what level he's comprehending what I'm teaching him. One of the blogs I follow (and subsequently FB page), Rhemashope, posted a link to this story with video about this method called Rapid Prompting Method, or RPM. Here's a link to the article and the video, which is well worth the 9 minutes it takes to watch it.
This video profiles two 12-year old non-speaking autistic kids who have learned RPM and are now able to type their words onto an assistive technology device that will then speak for them. Around 5:15 in the video they talk about how Kaylie's special needs school that specialized in ABA was "teaching" them where their nose was on their face and wanting them to touch it over and over again. Kaylie's mom talks about how Kaylie was frustrated by that lesson and typed to them "Nose not hard to find." This segment is so eye-opening to me about how we treat and teach disabled children by making assumptions that they are not paying attention or able to learn when in reality many of them are soaking information in like a sponge.
The scenario that Kaylie was in is my nightmare for Elias, that his IEP and instructors will expect very little from him because according to their evaluation metrics, he is not complying with what they want him to do. I have seen this over and over again in the number of evaluations he's had to endure. The person evaluating him will ask him to do something and he won't do it, so they will check "No" or whatever the lowest metric is on their evaluation tool and he will score low for that particular criteria. For example, he has been diagnosed with an expressive-receptive speech delay. I disagree with the receptive speech delay diagnosis because I know that he understands almost everything I say that is directed towards him and probably much that isn't. I sit in on his speech therapy sessions every Thursday afternoon and last week his therapist wanted him to point to the heart shape out of three other shapes. He refused to do it and continued playing with the Play-Doh. I 100% know that he knows what a heart shape is. I believe that he just had no interest in pointing it out and therefore didn't, but from a diagnostic standpoint, since he didn't show comprehension they have to assume that he doesn't know what a heart shape is. I completely understand why they do that because that's the way the practice is structured. I do wonder if there should be a better tool that reflects the autistic experience.
I want to teach Elias. It's hard when he is wandering around or scribbling all over a paper that I am trying to use to help him write the alphabet. Another illustration of this is yesterday: Chris, Ben & I were playing a game and he was sitting on my lap throwing cards around (per usual). To keep him busy (and not messing up our game), I gave him a piece of paper to write on. He was scribbling, but then I wrote an E and told him to trace it. Well, he didn't trace it and he wrote this completely independently while saying each letter as he wrote it:
I tried to get him to do it again on another piece of paper and he needed hand-over-hand assistance from me and it still didn't look as good as this one.
At this point, I don't really have a game plan for teaching him. I am just going to continue to talk to him and read to him and point things out in the environment and just wait for his expressive language to catch up. But I'm also going to make sure as we move forward that we are able to get him the education that he deserves in a school with teachers and administrators who believe that he is capable of learning and that he has potential just like any other child.
However, it makes me question at what level I should be teaching him and at what level he's comprehending what I'm teaching him. One of the blogs I follow (and subsequently FB page), Rhemashope, posted a link to this story with video about this method called Rapid Prompting Method, or RPM. Here's a link to the article and the video, which is well worth the 9 minutes it takes to watch it.
This video profiles two 12-year old non-speaking autistic kids who have learned RPM and are now able to type their words onto an assistive technology device that will then speak for them. Around 5:15 in the video they talk about how Kaylie's special needs school that specialized in ABA was "teaching" them where their nose was on their face and wanting them to touch it over and over again. Kaylie's mom talks about how Kaylie was frustrated by that lesson and typed to them "Nose not hard to find." This segment is so eye-opening to me about how we treat and teach disabled children by making assumptions that they are not paying attention or able to learn when in reality many of them are soaking information in like a sponge.
The scenario that Kaylie was in is my nightmare for Elias, that his IEP and instructors will expect very little from him because according to their evaluation metrics, he is not complying with what they want him to do. I have seen this over and over again in the number of evaluations he's had to endure. The person evaluating him will ask him to do something and he won't do it, so they will check "No" or whatever the lowest metric is on their evaluation tool and he will score low for that particular criteria. For example, he has been diagnosed with an expressive-receptive speech delay. I disagree with the receptive speech delay diagnosis because I know that he understands almost everything I say that is directed towards him and probably much that isn't. I sit in on his speech therapy sessions every Thursday afternoon and last week his therapist wanted him to point to the heart shape out of three other shapes. He refused to do it and continued playing with the Play-Doh. I 100% know that he knows what a heart shape is. I believe that he just had no interest in pointing it out and therefore didn't, but from a diagnostic standpoint, since he didn't show comprehension they have to assume that he doesn't know what a heart shape is. I completely understand why they do that because that's the way the practice is structured. I do wonder if there should be a better tool that reflects the autistic experience.
I want to teach Elias. It's hard when he is wandering around or scribbling all over a paper that I am trying to use to help him write the alphabet. Another illustration of this is yesterday: Chris, Ben & I were playing a game and he was sitting on my lap throwing cards around (per usual). To keep him busy (and not messing up our game), I gave him a piece of paper to write on. He was scribbling, but then I wrote an E and told him to trace it. Well, he didn't trace it and he wrote this completely independently while saying each letter as he wrote it:
I tried to get him to do it again on another piece of paper and he needed hand-over-hand assistance from me and it still didn't look as good as this one.
At this point, I don't really have a game plan for teaching him. I am just going to continue to talk to him and read to him and point things out in the environment and just wait for his expressive language to catch up. But I'm also going to make sure as we move forward that we are able to get him the education that he deserves in a school with teachers and administrators who believe that he is capable of learning and that he has potential just like any other child.
Wednesday, February 24, 2016
the best kind of problem
 |
| Chicago playgrounds rule, especially at 5 pm in February |
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| Best slide in Chicago |
We picked up Ben and I decided, you know what? We can go to the playground for 15 minutes. Maybe he'll figure out that it's cold outside and want to leave anyway. If the older two don't want to play they can stay in the car (this playground in particular is a wide open space and I'd be able to see the car from wherever we were). I told them the plan as we were pulling up to the playground. The kids flew out of the car and ran straight for the equipment. And you know what? We all had a blast. Ben, in a rare display of selflessness towards his sister, let Caroline have the first turn on the zip line. Elias was like a person freed from a cage; his delight and joy was evident in every movement of his body. This child loves being outside. He headed straight for the climbing structure that led to the highest peak of the playground in order to go down the slide. We ended up staying for half an hour by which time it was getting dark and Elias was licking his hands to keep them warm (counter-productive? yes.) .
So our "problem" that is not a problem these days is that Elias is talking more! We could not possibly be more thrilled about that. He's saying what he wants with increasing regularity and clarity. Remember cafwize? It was three short months ago when I was astounded that he was able to tell me what he wants without me having to say it first and him repeat it. Well, fast forward to now and these words are coming out daily and often out of nowhere. While this is fantastic, sometimes it leads to difficulties when he says "I want pizza" and we don't have any. Or when he wants to eat an entire bag of croutons. Or, like yesterday, when he wants to go to a playground when it's 38 degrees outside. We want to give him what he asks for to reinforce the concept that if you use words, you will be rewarded by getting what it is you are requesting and thus encourage him to continue using them. However, we are coming up on the time where we need to start saying "No" to some of these requests. Perhaps that time is now. It's hard to know. Sometimes the requests are impossible, like on Friday night at 7 pm when he told us he wanted to go swimming. And he's pretty good at not throwing a fit if he can't get what he wants. But we don't want him to shut down either.
It becomes particularly difficult when he wants something that one of his siblings has. We had been encouraging them to give it to him if he verbally requests it since it was so novel that he was using language. We're moving to the point where that is no longer the case. They already talk about how spoiled he is and that he gets everything he wants, though they do understand why we are doing what we do. Some of this is a function of being the youngest child but most of it is because we want to encourage his language. Thankfully, we are also at the point where he's starting to understand simple logic: do X and Y happens. This is a very very big and welcome development. I remember when Ben hit this point right around his third birthday and feeling like that was a major turning point at which parenting became exponentially easier, which is still to say the hardest thing I've ever done.
So while Elias is our easiest child, I'm hoping that the acquisition of language and logic is portending even more development and growth in the next few months, though we are light years ahead of where we were six months ago.
Tuesday, February 9, 2016
Youth Sports
Can we talk about youth sports for a minute? Benjamin in 10 years old and he just completed a season of swimming at the Chicago Park District. City-wide championships were last week and he finished fourth in both of the 25 yard and 50 yard backstroke, first in both the 25 and 50 yard butterfly and second in the 100 yard IM for his age group. He had a great meet, a great season, and we are very proud of how hard he works. It's nice to see that reflected in the results, of course, but I'm more proud of the character that he's forming in large part because of swimming. In swimming, there isn't that fun aspect of day-to-day training. I'd venture to say that a small percentage of the kids who swim competitively actually enjoy the endless laps they have to swim for practice because it's hard work. The joy of swimming comes in racing and winning / dropping time, which results in a good deal of daily pain. There are critical life lessons to be gleaned through swimming competitively for sure.
In our family, the oldest two (10 and 8) are at the age at which they are playing different sports and trying to figure out what they enjoy and what they're good at. Ben swims and plays baseball; Caroline likes to tell everyone that she plays four sports: soccer, baseball, swimming, and now floor hockey. I signed up Elias for track this year and he seems to enjoy it but is exhausted by the end of it.
With the notable exception of Caroline's soccer team, all of their sports have been organized through the Chicago Park District, which is accessible (there are several parks within 2 miles from our house), affordable, and not overly burdensome from a time commitment standpoint, that is, the games and meets are within the city and tend to be once or twice per week. Swimming is the most time intensive with practices three times per week (though they are open every weekday, so we could go five days) and then meets twice per month on a Saturday morning. However, with these benefits come drawbacks, specifically that the quality of the programs vary widely depending on your park district. You can sign up for programs and the instructors don't do much of anything except stand there. Or the facilities and equipment is shoddy. Or it's all volunteer-coached, which can also be a crapshoot in terms of the level of coaching and instruction. The skill level of the children who play is also extremely variable: you have some kids who have never played at all and some who are significantly more advanced. As children get older, sports become more self-selecting; typically kids who are not having at least a modicum of success at something tend to drop out of their own accord and pursue something that they are good at. We are happy with Ben's main swim coach. His club is small so he gets very personalized attention and has dropped significant amounts of time in every event in the two years he's been swimming. Chris said that his is the prime age for dropping time, so perhaps not surprising but nice he's on that trajectory.
So the question is this: how much time and money do you invest in your children's athletic endeavor? Especially when there is no indication that the investment is going to return a quantifiable dividend, such as a college scholarship, an Olympic placement, or a professional career? That umbrella comfortably encapsulates the vast majority of children playing organized sports; if your child has those precocious gifts that would land them in the elite category then it is completely reasonable to pursue every avenue available to them. As previously mentioned, there are many good and great things about children being involved in sports: physical health, a feeling of pride & accomplishment, understanding teamwork, building camaraderie / friendship, and a host of less enumerable benefits. When do you decide to take your child to the "next level" of competition and commitment? For both me and Chris, we both played sports as children through the high school level. Neither of us were on travel teams or a higher level of competition than a rec league or its equivalent.
What are my goals for my kids athletically? Ben wants to be a MLB player. Is his goal realistic? Not really, but anything is possible. Do I invest the time and resources into his dream, or Caroline's (though she has never expressed wanting to be a professional athlete)? To what extent do I sacrifice family downtime and togetherness with driving around Chicagoland to take my kids to sports? The fact that we only have one car is limiting and forces us to put boundaries around extracurricular activities which is a pain but actually helpful in the end. What is your family's calculus?
In our family, the oldest two (10 and 8) are at the age at which they are playing different sports and trying to figure out what they enjoy and what they're good at. Ben swims and plays baseball; Caroline likes to tell everyone that she plays four sports: soccer, baseball, swimming, and now floor hockey. I signed up Elias for track this year and he seems to enjoy it but is exhausted by the end of it.
With the notable exception of Caroline's soccer team, all of their sports have been organized through the Chicago Park District, which is accessible (there are several parks within 2 miles from our house), affordable, and not overly burdensome from a time commitment standpoint, that is, the games and meets are within the city and tend to be once or twice per week. Swimming is the most time intensive with practices three times per week (though they are open every weekday, so we could go five days) and then meets twice per month on a Saturday morning. However, with these benefits come drawbacks, specifically that the quality of the programs vary widely depending on your park district. You can sign up for programs and the instructors don't do much of anything except stand there. Or the facilities and equipment is shoddy. Or it's all volunteer-coached, which can also be a crapshoot in terms of the level of coaching and instruction. The skill level of the children who play is also extremely variable: you have some kids who have never played at all and some who are significantly more advanced. As children get older, sports become more self-selecting; typically kids who are not having at least a modicum of success at something tend to drop out of their own accord and pursue something that they are good at. We are happy with Ben's main swim coach. His club is small so he gets very personalized attention and has dropped significant amounts of time in every event in the two years he's been swimming. Chris said that his is the prime age for dropping time, so perhaps not surprising but nice he's on that trajectory.
So the question is this: how much time and money do you invest in your children's athletic endeavor? Especially when there is no indication that the investment is going to return a quantifiable dividend, such as a college scholarship, an Olympic placement, or a professional career? That umbrella comfortably encapsulates the vast majority of children playing organized sports; if your child has those precocious gifts that would land them in the elite category then it is completely reasonable to pursue every avenue available to them. As previously mentioned, there are many good and great things about children being involved in sports: physical health, a feeling of pride & accomplishment, understanding teamwork, building camaraderie / friendship, and a host of less enumerable benefits. When do you decide to take your child to the "next level" of competition and commitment? For both me and Chris, we both played sports as children through the high school level. Neither of us were on travel teams or a higher level of competition than a rec league or its equivalent.
What are my goals for my kids athletically? Ben wants to be a MLB player. Is his goal realistic? Not really, but anything is possible. Do I invest the time and resources into his dream, or Caroline's (though she has never expressed wanting to be a professional athlete)? To what extent do I sacrifice family downtime and togetherness with driving around Chicagoland to take my kids to sports? The fact that we only have one car is limiting and forces us to put boundaries around extracurricular activities which is a pain but actually helpful in the end. What is your family's calculus?
Friday, February 5, 2016
it's time
Shortly after Elias was diagnosed, I made a brief comment in this post that there is more to do for those children who are diagnosed and cannot access services in a timely manner (or at all) due to a lack of private insurance. Well, the time has come for me to do more and hopefully you too.
Elias's school, LEEP Forward, has a non-profit arm called LEEP Beyond which provides services for children whose families are unable to pay for them. They are currently running a GoFundMe campaign to raise $250,000 and are about halfway there.
You may recall that when we first started researching options and services for Elias we were told by his Developmental Pediatrician and the autism clinic at Illinois Masonic that it was significant that we had private insurance and would be able to get services for him more quickly simply because of that fact. There was a long waiting list for children who are on Medicaid to see speech, occupational, or behavior therapists. It's true that research shows that outcomes are better for children who start services earlier and so these long waiting lists are often very detrimental to autistic children, particularly minority children who tend to be diagnosed later than their caucasian peers. For those minority children who were diagnosed late, who are not insured, AND have to be placed on long waiting lists for services the problem is compounded.
We love LEEP Forward. Elias has made great progress there, as I have documented in this blog and on Facebook. His therapists and the classroom aides truly care for him and want to see him reach his full potential. I love that his therapists can (and do) talk to and consult with each other because they're in the same building and they see him in a variety of different circumstances: one-on-one, in a classroom setting, in a small group setting, and with me since I sit in on one speech therapy session per week and occasionally on OT sessions. From Day 1 he has been so happy to go to school each day which is a huge relief and weight off of my shoulders.
He is there in the mornings and there are 6 children in his classroom and a minimum of five adults in the room. He has a personal speech and OT and will be getting a new behavior therapist at the end of this month. This level of care is expensive. Our insurance company pays them thousands of dollars PER MONTH. Insurance companies drive me bonkers but I am so grateful to have them. If we didn't have insurance I would have quit grad school (which has been a dream of mine for over a decade) and found a job in order to help pay for this school, which is indicative of how much I believe that this school can help and is helping Elias. I am also so very thankful that he has one more year there since they have a Transitional Kindergarten program and I'm starting to preemptively stress out about the IEP process.
Lastly, but most importantly, they protect his dignity and invest in his strengths. They are not trying to change him or make him less autistic; they are giving him the tools that he needs to make it through the world. I appreciate that so much.
All of this to say that we'd be honored, encouraged, and grateful if you would consider contributing to the LEEP Beyond fund to allow children who could not otherwise access these services. You can do so here. There may be homemade chocolate chip cookies involved for those in Chicagoland for your contribution :) Your investment will help fund the following:
Elias's school, LEEP Forward, has a non-profit arm called LEEP Beyond which provides services for children whose families are unable to pay for them. They are currently running a GoFundMe campaign to raise $250,000 and are about halfway there.
You may recall that when we first started researching options and services for Elias we were told by his Developmental Pediatrician and the autism clinic at Illinois Masonic that it was significant that we had private insurance and would be able to get services for him more quickly simply because of that fact. There was a long waiting list for children who are on Medicaid to see speech, occupational, or behavior therapists. It's true that research shows that outcomes are better for children who start services earlier and so these long waiting lists are often very detrimental to autistic children, particularly minority children who tend to be diagnosed later than their caucasian peers. For those minority children who were diagnosed late, who are not insured, AND have to be placed on long waiting lists for services the problem is compounded.
We love LEEP Forward. Elias has made great progress there, as I have documented in this blog and on Facebook. His therapists and the classroom aides truly care for him and want to see him reach his full potential. I love that his therapists can (and do) talk to and consult with each other because they're in the same building and they see him in a variety of different circumstances: one-on-one, in a classroom setting, in a small group setting, and with me since I sit in on one speech therapy session per week and occasionally on OT sessions. From Day 1 he has been so happy to go to school each day which is a huge relief and weight off of my shoulders.
He is there in the mornings and there are 6 children in his classroom and a minimum of five adults in the room. He has a personal speech and OT and will be getting a new behavior therapist at the end of this month. This level of care is expensive. Our insurance company pays them thousands of dollars PER MONTH. Insurance companies drive me bonkers but I am so grateful to have them. If we didn't have insurance I would have quit grad school (which has been a dream of mine for over a decade) and found a job in order to help pay for this school, which is indicative of how much I believe that this school can help and is helping Elias. I am also so very thankful that he has one more year there since they have a Transitional Kindergarten program and I'm starting to preemptively stress out about the IEP process.
Lastly, but most importantly, they protect his dignity and invest in his strengths. They are not trying to change him or make him less autistic; they are giving him the tools that he needs to make it through the world. I appreciate that so much.
All of this to say that we'd be honored, encouraged, and grateful if you would consider contributing to the LEEP Beyond fund to allow children who could not otherwise access these services. You can do so here. There may be homemade chocolate chip cookies involved for those in Chicagoland for your contribution :) Your investment will help fund the following:
- Financial assistance for families who would struggle to make copays or meet deductibles
- Additional but needed therapy sessions for children that are not covered by insurance
- Training sessions for parents to learn philosophies and techniques used in therapy in order to use the same methods at home
- In-home training sessions for families to help parents and caregivers learn about methods to maximize their interactions with their child
- Purchase of needed therapy items for children when needed such as sensory supports, swings, adaptive seating, Lycra bands, gym equipment, and visual supports
Thank you for considering!
Tuesday, February 2, 2016
2016 Reading Challenge
Anyone who knows me at all knows that I love to read. And that I have entirely too many books on my to-read list which is endemic to anyone who loves books. I am going to challenge myself this year by jumping aboard the Modern Mrs. Darcy's 2016 Reading Challenge. Here's what it is:
This is what I am planning:
-A book published this year
When Breath Becomes Air by Paul Kalanithi
I finished this yesterday. I don't have the words to describe it, only that I am very thankful to have read it and that the message of living each day with purpose and courage is one that is not shared often enough. I am only peripherally acquainted with the family through my dear college friend Emily who married Paul's brother Jeevan, but I can only imagine how much they miss him. *I* missed him by the end of the book. His voice is so clear, witty, wise, and poignant through the pages and it was with delight and heartbreak that I read it. Word to the wise: make sure you have Kleenex handy when you read the Epilogue, written by posthumously by his wife Lucy.
- A book you can finish in a day
For the Love by Jen Hatmaker
- A book you've been meaning to read
Anne of Green Gables by L. M. Montgomery (I KNOW, I KNOW)
For years and years and years people have been gasping when I have told them I have never read these books. So I'm finally going to read the first one this year.
-A book recommended by your local librarian or bookseller
The Eyre Affair: A Thursday Next Novel by Jasper Fforde
I could cheat on this since I am in LIBRARY SCHOOL with many future librarians, but I think I'll run up to my local branch and see what he would recommend. [update] I talked to my librarian and he asked what genres I liked and I said that I'm partial to the classics: Austen, Dickens, Eliot. And he recommended this book, which is the first in a series. I'm excited to try it :)
- A book you should have read in school
1984 by George Orwell
In spite of being a goody-two-shoes in school, I was assigned this book and never read it. I guess this is the year to correct that wrong.
- A book chosen for you by your spouse, partner, sibling, child, or BFF
The Brothers Karamazov, by Fyodor Dostoevsky
Looking at this list of people, the chosen book would vary quite dramatically depending on which person I select. I have chosen my husband, who has been recommending for the past 13 years that I read it. I have started reading this before but couldn't get through it. I will consider this challenge to be a success if this is the only book I end up reading this year.
- A book published before you were born
Betsy, Tacy, and Tib by Maud Hart Lovelace
Caroline & I are reading these and finished this one last week :) Several of my Facebook friends recommended this series to Caroline and we are both enjoying them. We're currently in book #3.
- A book that was banned at some point
The Diary of a Young Girl, by Anne Frank
I am a terrible person. I have never read this book.
- A book you previously abandoned
The Cost of Discipleship by Dietrich Bonhoeffer
I typically don't abandon books. But I abandoned this one because I was too convicted by it. Time to try it again.
-A book you own by have never read
The House on Mango Street by Sandra Cisneros
There is an appalling lack of Latino authors in my literary diet.
- A book that intimidates you
Les Miserables by Victor Hugo
This is my all-time number one intimidating book. I have picked it up at the library and set it right back down a few times. I am not going to commit myself to it this year, but I'm putting it out there and maybe I'll get the courage to start it.
- A book you've read at least once
Persuasion, by Jane Austen
At least once? How about 100 times? In turn for reading The Brothers K, I am making Chris read a Jane Austen this year. While he's watched many of the movie adaptations with me, he's never read a book by her.
Anyone want to join me on the challenge? I would love the company and accountability!
This is what I am planning:
-
When Breath Becomes Air by Paul Kalanithi
I finished this yesterday. I don't have the words to describe it, only that I am very thankful to have read it and that the message of living each day with purpose and courage is one that is not shared often enough. I am only peripherally acquainted with the family through my dear college friend Emily who married Paul's brother Jeevan, but I can only imagine how much they miss him. *I* missed him by the end of the book. His voice is so clear, witty, wise, and poignant through the pages and it was with delight and heartbreak that I read it. Word to the wise: make sure you have Kleenex handy when you read the Epilogue, written by posthumously by his wife Lucy.
For the Love by Jen Hatmaker
Anne of Green Gables by L. M. Montgomery (I KNOW, I KNOW)
For years and years and years people have been gasping when I have told them I have never read these books. So I'm finally going to read the first one this year.
-
The Eyre Affair: A Thursday Next Novel by Jasper Fforde
I could cheat on this since I am in LIBRARY SCHOOL with many future librarians, but I think I'll run up to my local branch and see what he would recommend. [update] I talked to my librarian and he asked what genres I liked and I said that I'm partial to the classics: Austen, Dickens, Eliot. And he recommended this book, which is the first in a series. I'm excited to try it :)
- A book you should have read in school
1984 by George Orwell
In spite of being a goody-two-shoes in school, I was assigned this book and never read it. I guess this is the year to correct that wrong.
- A book chosen for you by your spouse, partner, sibling, child, or BFF
The Brothers Karamazov, by Fyodor Dostoevsky
Looking at this list of people, the chosen book would vary quite dramatically depending on which person I select. I have chosen my husband, who has been recommending for the past 13 years that I read it. I have started reading this before but couldn't get through it. I will consider this challenge to be a success if this is the only book I end up reading this year.
Betsy, Tacy, and Tib by Maud Hart Lovelace
Caroline & I are reading these and finished this one last week :) Several of my Facebook friends recommended this series to Caroline and we are both enjoying them. We're currently in book #3.
The Diary of a Young Girl, by Anne Frank
I am a terrible person. I have never read this book.
- A book you previously abandoned
The Cost of Discipleship by Dietrich Bonhoeffer
I typically don't abandon books. But I abandoned this one because I was too convicted by it. Time to try it again.
-
The House on Mango Street by Sandra Cisneros
There is an appalling lack of Latino authors in my literary diet.
- A book that intimidates you
Les Miserables by Victor Hugo
This is my all-time number one intimidating book. I have picked it up at the library and set it right back down a few times. I am not going to commit myself to it this year, but I'm putting it out there and maybe I'll get the courage to start it.
- A book you've read at least once
Persuasion, by Jane Austen
At least once? How about 100 times? In turn for reading The Brothers K, I am making Chris read a Jane Austen this year. While he's watched many of the movie adaptations with me, he's never read a book by her.
Anyone want to join me on the challenge? I would love the company and accountability!
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