Monthly Archives: April 2014

The Shit We Don’t Put On Facebook

Sometimes Facebook makes you feel crappy, right?  I’m sure you know what I’m talking about.  You see pictures and status updates of all the cool stuff your friends are doing, or all the fabulous things that their kids are doing, and everyone you know just seems so perfectly happy and awesome.

awesome

Except for you.  Maybe you are still wearing your pajamas at 2 pm, and have spent the day either cleaning up the bodily fluids of your children, or sitting in ridiculous traffic that made you unforgivably late, or learning bad news about the health of a loved one.  Or maybe all of the above.  And you are wondering why the hell your life isn’t anything like the perfect life all of your friends are obviously having and sharing with the world on Facebook.  You probably already know the answer, and it’s simple:  Your friends’ lives are just as difficult and stressful as yours.  It’s just that they only share the good stuff on Facebook, and keep most of the crappy stuff to themselves.

I’ll admit that I was on Facebook a lot this week.  That’s mostly because there was a ton of shit going on here!  And a lot of it was good.  For example, SB participated in a 5-day class for special needs children that teaches them how to ride a bike without training wheels.  By Friday he was actually riding a 2-wheeled bike by himself, which was so great!  (The program was fabulous – more on that in a future post.)  Also, AB turned 7 on Friday, and birthdays are always good news!  Even more exciting was that both guys tested for their Gold Belts in Tae Kwon Do, and they both passed.  They will be receiving their new belts in a graduation ceremony next week.  And even though SB had to make a trip to the doctor on Friday (more on that later as well), it was the most calm and cool he has ever been during a doctor visit, even staying calm and still enough to allow the nurse to actually get a blood pressure reading from him.  (I swear to you, that has NEVER happened before!  Doctor visits in the past have always been pure, anxiety-filled torture.) 

4stripes
Four stripes! That means we earned the next belt!
sbbike
Proof that he really was doing it on Friday.

All of this good news I shared on Facebook, and I always appreciated the “likes” and comments from friends.  But here’s the thing – this past week was awfully crazy, and full of all kinds of bad crap mixed in with all the good.  So here is my confession to you.  This is the shit I DIDN’T put on Facebook:

Let’s start with the fact that my husband was sick all week with a nasty flu.  Really, really sick.  He missed 2 days of work, which is huge for him.  He pretty much laid in bed and slept for the better part of 3 days.  Even when he tried to get up and do something, like read email or just watch TV, he got nauseous and had to go back to bed.  When Charlie is so sick that he can’t even watch TV, you KNOW it is bad!  At one point I asked him to put away the groceries for me, and he is normally a pretty helpful guy, but he didn’t even think he could handle that.  The daily after school routine was already feeling crunched, with the 75-minute bike class every afternoon.  Now with Charlie completely down for the count, all household and parenting responsibilities fell to me, adding to the week’s nuttiness.  As soon as he started to feel a little better and was able to get out of bed, it was time for him to host the district-wide Solo and Ensemble contest at his school, leaving him at work for long hours and we hardly saw him at all for 2 days straight.  I also pretty quickly realized that there was absolutely no chance of me getting ahead on my final project due for my class on May 1.  That would just have to wait until next week.

Although SB wasn’t sick, we still had to make a trip to the doctor.  The spring pollen has been unusually bad this year, and it’s hit him pretty hard.  He has an old man smoker’s cough that just won’t quit.  On Thursday the school nurse called to tell me that he had to be removed from class because his cough was so bad, and that he couldn’t go back to class unless it improved.  Now, I have no doubt that the pollen is bothering his system, but the little guy can also be REALLY dramatic about his coughing fits.  So I had to miss work on Friday, which I really don’t like to do when there is a rehearsal, to take him to the doctor. Although we got him some meds, it is now 2 days later and I am still listening to his nasty, hacking cough in the next room.  I fear we may have to go back again.

Also on my list this week was to prepare the details for AB’s birthday party on Sunday at the Tae Kwon Do studio where the guys take lessons.  (I HIGHLY recommend hosting birthday parties for your children in locations other than your home.  Not having to clean the house makes it so much less stressful!)  Last Sunday, which was one week before the party, my husband and I panicked when we realized that we had only TWO responses from the invitations.  All parents probably experience a little bit of this anxiety, but parents of kids with autism worry about this kind of thing excessively: What if no one comes to my kid’s party?  What if nobody wants to come?  What if all the other kids hate my kid?  How will it make my kid feel if nobody comes to his party?  I know, I know, it seems ridiculous to worry about such things, but I can’t help it.  This is the kind of shit that runs through my head.  I admit that I lost some sleep this week over this.  I think the more realistic reason that we hadn’t heard back from very many party goers yet is that between spring break and Easter, most people had been out of town or busy with holiday obligations, and my child’s birthday party was not at the forefront of their minds.  It turns out that all my worrying was for nothing, because we had a nice turnout for the party and I think the kids had a great time.

And now…

Drum-Roll-Please

I saved the best one for last, my friends.  It turns out that despite all my pictures and updates on Facebook, bike riding was not all smiles and rainbows and puppies this week.  SB had such a great week at “I Can Bike,” the class to teach special needs children how to ride a bike without training wheels.  On Friday, he was riding around the gym with tons of confidence.  And most importantly, he was having a fabulous time!  The Program Director talked to the parents at the graduation ceremony on Friday, stressing the importance of continuing to practice riding the bike every day, even if just for 15 minutes.  This made perfect sense to me.  So on Saturday morning, I put SB’s new bike in the van along with SB’s old bike with training wheels, which I was going to give to AB because AB’s old bike was really too small for him now.  We drove over to their elementary school and took the bikes to the basketball courts, which are mostly (but not 100%) flat.  I started pushing SB just like I had the day before, but he didn’t go.  Why?  He refused to take his hand off the brake.  He refused to pedal.  He yelled and screamed at me.  “This bike is really bad!  It’s too hard!  I can’t turn!  I can’t do it!  I can’t I can’t I can’t I can’t I can’t I can’t……”

I couldn’t believe it!  Who was this kid?  He was certainly not the same person who was confidently riding his bike around the gym all by himself less than 24 hours before!  I was SO frustrated.  It had seemed so easy in the class.  He had happily participated every single day with no complaining.  And now – I couldn’t get him to try ANYTHING.  I tried reminding him how good he had been doing the day before.  I tried walking with him slowly while holding the bike.  I kept countering his “I can’ts” with “You cans!”  But he had already decided that it was too hard, and that he absolutely could not do it.  My blood started to boil, and I got madder and madder and madder until…

I completely lost my temper.

The boiling blood in my veins exploded into a voice that I didn’t even recognize coming out of my mouth.  “WHAT IS WRONG???  WHY WON’T YOU EVEN TRY????  YOU WERE DOING IT YESTERDAY!!!!!!”  And then the lip curled up, and the face turned red, and the sobbing started, and then I had utterly lost him.

Why do I yell at him?  It never, ever helps.  But I’m human, and sometimes I lose my cool.

At this point, the dad who had brought his daughter to ride her bike on the basketball courts as well packed up his kid and left.  They had only been there about 3 minutes.  All my fault, I know.  I tried to salvage what I could out of the session by insisting that SB finish his 15 minutes.  But he basically coasted on the bike without pedaling while I pushed it, me continually telling him to pedal, wasting my breath.  After 15 minutes, I told him he had done the designated amount of time, and could stop.

All of this time, AB had been sitting on his bike, doing nothing.  Absolutely nothing.  Getting this kid to ride a bike even WITH training wheels has been a huge chore.  For 2 years, we have been trying to encourage him to ride, but it always takes much enthusiasm and praise.  So on Saturday, I turned to him and told him that now it was HIS turn to ride for 15 minutes.  Then HE started with the complaining.  “I hate this bike!  I want my old bike back!  This bike doesn’t work!  I hate bike riding!  It’s too hard!”  Already on my last nerve, I decided not to give up, decided not to let him get by with not even trying, and so I looked at him and growled, “PEDAL!”  I gave him a small push and walked alongside him while he biked and complained and barely pedaled at all.  But I had said we were going to ride for 15 minutes, so dammit, we did!

I don’t know if I did the right thing, pushing them both to stay on their bikes for the designated amount of time, even though we were all miserable.  I know from past experience with these guys that it’s usually the right thing to push through things that are hard.  I definitely know that losing my temper wasn’t the right thing to do.  I know for sure that when we were done, I felt like shit.  I felt like crying.  I definitely felt like strangling them both.  I also felt like breaking open the bottle of chardonnay chilling in my fridge.  But I don’t want to go to prison, and it was only 10 am, so I skipped the strangling and the wine and let them play games on their iPods when we got home so that I could collect myself and get through the rest of the day, which included a Tae Kwon Do class and then the Tae Kwon Do belt testing.

I’m pretty sure we all have “Shit We Don’t Put on Facebook.”  Some weeks have more shit than others.  But life is like that – good with bad, ups with downs.  I’m thankful that I did have a lot of good things to share this week.  I’m thankful that the upcoming week looks slightly less intimidating.  I try to be thankful that these little guys continue to challenge me as a parent in ways I never could have imagined.  (But sometimes that’s a hard one.)  I have a lot of goals and dreams for these guys – like our family going on bike rides together, and like both boys continuing to be successful in Tae Kwon Do and eventually earning their black belts.  Although bumpy, we made a little bit of progress on those goals this week.  THAT is worth celebrating.  With wine.

wine2

 

Stuff You Should Read

I haven’t written a new post for quite a while, and I guess that’s not a bad thing.  We are trudging along here at the Burts house, keeping plenty busy, and trying to recover from the winter of 2013-2014 that seemed to be fueled by the Energizer bunny.  The snow just kept going and going and going…  I desperately hope we are finished with snow and ice and sleet and are finally on the verge of warmer spring temperatures.

Speaking of busy, I have mentioned before that I started a Master of Library Science program in the fall of 2012.  With a full time job and two somewhat challenging children, I can only handle one class at a time.  It’s going to be the slowest graduate degree in history, but I’ll get there eventually.  Anyway, this semester I’m taking “Library Materials for Young Adults,” which I am loving!  I’ve had a lot of reading to do, but it’s been FUN reading, so I haven’t minded.  It is not at all like the theoretical, tedious academic stuff I had to read for some of my earlier classes.  One of my assignments this semester is called a “Publicity Project,” where I am required to create a display, brochure, or some other medium to help advertise and promote a set of books specifically for young adults based on a theme.  The syllabus encourages us to be creative.  When I decided to use “Books About Autism” as my theme, (go with what you know, right?)  I realized that this blog would be a good medium to use for my project.  So yes, I am killing two birds with one stone here, posting in my blog AND completing a project for class.  I hope you don’t mind!

I must admit that I haven’t read all of these titles, but I’ve read most of them, and the ones I haven’t read are definitely on my list of things to read in the near future.  I have also seen both of the movies.  All of the titles I’ve selected have positive reviews from professional journals and positive reader reviews as well.  I know it’s not a comprehensive list of books about autism.  I had a difficult time limiting myself to the 7-10 items required by the syllabus.  (There are 12 items here.  I just couldn’t get it down to 10!)  What follows is my Publicity Project for my class.  I hope you enjoy the titles on this list.

 

Do you know someone with autism?  I bet that you do.  Maybe someone in your homeroom, someone who rides your bus, or someone in your neighborhood has autism.  People with autism can be smart or funny or good at a lot of different things, but they have a very hard time interacting with other people and making friends.  You may feel like they don’t want to talk to you because they seem awkward or shy.  But here is a little secret – PEOPLE WITH AUTISM WANT TO BE YOUR FRIEND!  It’s just really difficult for them to make friends.  Do you want to learn more about autism?  Here are some books and movies you should check out.  They will help you learn a little bit more about what it feels like to have autism, and will show you how important it is for you to try to make friends with someone with autism – or anyone who might be a little bit different from you.

 

FICTION BOOKS ABOUT PEOPLE WITH AUTISM

1. The Curious Incident of the Dog in the Night-Time by Mark Haddon

curious incident

This story is a murder mystery of sorts, told through the eyes of 15-year-old autistic Christopher Boone as he investigates the strange death of a neighborhood dog.  The first person style is a very realistic portrayal of autistic traits such as Christopher’s intense stress when his routine is altered, his difficulty in making conversation with others, his giftedness in math, and his inability to understand jokes and humor.

2. Wild Orchid by Beverley Brenna 

wild orchid

Also told in first person by a character with autism, this is the diary of 18-year-old Taylor Jane Simon.  Taylor lives with her mother, who decides to move for the summer to be closer to her boyfriend.  Taylor, who does not like loud noises and cannot bring herself to look at people’s faces, is terrified by the thought of moving to a new town and disrupting everything in her established routine.

3. The Very Ordered Existence of Merilee Marvelous by Suzanne Crowley

very ordered existence

In another novel narrated by a person with autism, we meet 13-year-old Merilee Monroe, who craves order in her every aspect of her life.  Her life gets turned upside-down, however, when she meets Biswick, a new kid in town who has his own difficulties because of fetal alcohol syndrome.  The two find themselves on an adventure that causes them to grow into unlikely friends.

4. Marcelo in the Real World by Francisco X. Stork

marcelo in the real world

Marcelo Sandoval has Asperger’s syndrome.  At 17, he has spent most of his life isolated from others by attending a school for children with special needs and working part time at the horse stables at his school.  During the summer before his senior year of high school, Marcelo’s father forces him to get a job at his law firm.  Marcelo is nervous and distraught about his new job, but slowly learns that he just might have the skills he needs to fit into the “real world.”

5. Anything But Typical by Nora Raleigh Baskin

anything but typical

This is the story of 12-year-old Jason Blake, who has autism and is desperate to make friends and maybe even find a girlfriend.  When he meets Rebecca online, he is excited to chat with her, and then mortified to realize that he will not be able to avoid meeting her in person.  Jason must overcome his difficulty with deciphering social situations and hopes that Rebeca will see his sense of humor and his talent for creative writing, and not just his autism.

6. The London Eye Mystery by Siobhan Dowd

london eye mystery

Twelve-year-old Ted and his older sister Kat are hosting their cousin Salim for a visit in London.  When Salim takes a ride on a Ferris wheel and isn’t there when the ride is over, Ted and Kat must solve the mystery of what happened to their cousin.  Ted has Asperger’s syndrome, and his differently-wired brain often annoys his older sister, but his unique way of thinking just might crack the mystery.

NON-FICTION BOOKS ABOUT PEOPLE WITH AUTISM

1. Carly’s Voice: Breaking Through Autism by Arthur Fleischmann and Carly Fleischmann

carlys voice

Carly Fleischmann was diagnosed with severe autism at age 2.  Her parents and doctors believed that she would never surpass the cognitive abilities of a toddler.  Then at age 10, Carly began to type.  It turns out that although her sensory problems are severe and she remains nonverbal, she is a highly intelligent, spunky teenage girl. With the help of an iPad and assistive communication software, she has become a very successful student.  Written mostly by her father, this memoir confirms that lack of speech does not necessarily mean lack of intelligence.

2. Look Me in the Eye: My Life With Asperger’s by John Elder Robison

look me in the eye

Growing up, John Elder Robison always had difficulty connecting with others and was sometimes called a “social deviant.”  Despite his quirkiness and his difficulty with eye contact, he has led a fascinating life with adventures that most of us could only imagine.  He is also a gifted storyteller, and this autobiography is both funny and sad, yet always uplifting.  Finally diagnosed at age 40, Robison finally understands why he is the way he is, and shows that Asperger’s syndrome is not a disease, but simply a way of being.

3. The Reason I Jump: The Inner Voice of a Thirteen-Year-Old Boy With Autism by Naoki Higashida

the reason i jump

Naoki is autistic and nonverbal, and speaks through an alphabet grid.  Although his method of communication is tedious, Naoki is intelligent and insightful, and provides a profoundly interesting look inside the mind of someone with autism.  He answers such questions as “Why don’t you make eye contact?” and “What’s the reason you jump?” with honesty and thoughtfulness.  This memoir will inspire understanding, patience, and compassion for those with autism.

4. The Mind Tree: A Miraculous Child Breaks the Silence of Autism by Tito Rajarshi Mukhopadhyay

the mind tree

Tito was diagnosed with severe autism at age 3 and is mostly nonverbal.  His persistent and dedicated mother taught him to read and write in both Bengali and English using a letter board.  The result is this book, written by Tito between the ages of 8 and 11, which provides explanations of his seemingly strange behaviors as well as poetry and short stories.  This is yet another memoir proving that spoken language and intelligence are not always related.

MOVIES ABOUT PEOPLE WITH AUTISM

1. Temple Grandin – HBO, 2010 (non-fiction)

Grandin.HBO.movie

Temple Grandin is one of the first people with autism to become successful in her field, and to become famous because of it.  This made-for-television movie starring Claire Danes was the winner of 7 Emmy Awards, including Outstanding Lead Actress for Danes as well as Outstanding Made for Television Movie.  It documents Grandin’s fascinating life from her difficult childhood to her love of animals and her graduate work as a designer of animal handling equipment.   Grandin has worked hard over the years to overcome her sensory and social difficulties, and her success story is inspiring.

2. Adam – 2009 (fiction)

adam

Starring Hugh Dancy and Rose Byrne, this film tells the story of Adam, a young man with Asperger’s syndrome.  Craving order in all aspects of his life, Adam’s world is turned upside-down when his father passes away and he loses his job at the same time.  In the middle of this chaos, he meets his new neighbor, Beth.  He is interested in developing a romantic relationship with Beth, but his social awkwardness often gets in the way.  Throughout the movie, Adam is forced to grow and learn about relationships and also about himself.