You Might Be An #Autism Parent If…

Borrowed from Autism Spectrum Disorder, Through My EyesFacebook Page. Have experienced the majority of these with my son.

  • Your 8 yr old has mastered every level of Lego Star Wars but can’t put on his own shirt w/out help.
  • You’re not sure who needs the padded helmet w/ faceguard more…your kid, or you.
  • You know its a bad day when you find all the trains lined up
  • You have more people that understand you in other states and countries than in your own neighborhood.
  • You have to communicate in sequences….i.e. first brush teeth, then bedtime.
  • You get so excited when your child masters a skill that he/she is a year or more delayed in!
  • You know *just* how much silence is too much silence. And then you run to check on them.
  • You use the phrase “use your words” repeatedly throughout the day
  • Your son is 8 years old but still pees on his pants at least once a week.
  • Your child makes up un-funny jokes in an attempt to understand humor, irony, and metaphor – unsuccessfully.
  • The school staff hates to see you coming! Because they know you’re not taking any crap when it comes to your kids!
  • You make up songs for almost anything because your kid responds better to it.
  • You have a heart attack when you see the school phone number on the caller i.d. Shit! What did he do now?
  • You’ve ever carried a screaming, flailing child out of a store & you knew it was for the best.
  • There are days you feel and look like a battered wife because your child had a major meltdown
  • You’re accused of being overly protective of your child, and overly sensitive to popular culture!
  • Your kid has the hardest time telling you the simplest of things, but can turn Legos into amazing things with no plans
  • Your child tells a joke over and over until somebody laughs
  • Every activity you do comes with a series of warnings approaching the end of the activity.
  • You can’t vacuum without a 15 minute warning announcement
  • You’re sometimes amazed at the sounds and faces your child can make in a day!
  • You have had someone say “maybe if you were more consistent….” and you want to gut punch them
  • It doesn’t matter how cold it is, your child WILL NOT go to sleep without the fan on in his room.
  • Anything “_____tard” is likely to not only offend, but infuriate you!
  • You start to realize the apple doesn’t fall far from the…hey is that a squirrel?
  • You really relate to ‘ Gerald Mc Boing Boing’
  • Your twitter friends understand you and your child better than your local friends
  • You know exactly what a pooptastrophe is and are happy beyond words when your child outgrows this behavior.
  • Everytime ANYONE comes to your house your child tries to hijack them to come play legos with him.
  • You have to think through EVERYTHING you need to say first so that your child doesn’t take something literally.
  • You sigh when other people tell you how their parents handled that when THEY were kids.
  • You’ve given a complete stranger a tongue lashing for suggesting your kid has a discipline problem
  • You’re used to strangers looking to you for translation because they couldn’t understand a word your kid said
  • You sometimes have to remind yourself there are a lot worse things that could happen to your child than autism.
  • You avoid public bathrooms because they are too loud and cause sensory overload.
  • People always question your child’s behaviour and the way you raise your child.
  • You see no problem with your child scooting around on the floor with his head down for hours making weird sounds
  • You’ve apologized to restaurant staff because your child said the place smelled bad and you had to leave.
  • There are lines and lines and LINES of small toys all over the place
  • You know your child was given dairy milk at school because he’s acting crazier than normal.
  • Your child refers to a friend as “The Third Boy” rather than by name even after a year.
  • You forget how delayed your child’s speech is until you hear a 4 yr old talk better than your 8 yr old
  • You still get nervous before an IEP no matter how many times you’ve had one.
  • You dont even blink an eye when seeing a child twirling and flapping in public
  • You have to buy your child’s favorite food in bulk quantities because anything else you buy will go uneaten.
  • You have the child locks on your car doors because your child has tried to jump out driving down the road.
  • Your 7 year old has designed 40 different versions of the Dominator from Storm Chasers
  • It makes you sick when other normal kids your child’s age make comments or stare during an inclusive sport
  • You feel like a stuck record when asking a kid to do a simple as “put your jacket on”
  • You think a meltdown is something that happens to a child, not a nuclear reactor.
  • You get pissed at parents of neurotypical kids because they call you selfish for NEEDING A BREAK
  • Your child lectures you on the dangers of speeding as you drive them to kindergarten
  • You can tell the difference between a meltdown and a temper tantrum even when nobody else can
  • You have to explain EVERY step in the process. i.e. 1.raise hand 2.WAIT to be called on 3.answer.
  • Your child has 3 time frames – Today, Tomorrow, and Later.
  • You’re afraid to put your child in sports because it could cause a sensory meltdown in public
  • You’ve ever cleaned poop off the walls of your apartment at 5am.
  • You plead with your child to be allowed to throw away the packaging
  • You’ve ever cried because a teacher “gets it”
  • You remarry and are super grateful that your spouse chose you and loves your child like his own.
  • You’ve ever wanted to strangle a neighbor kid for bullying your child but were too busy crying instead.
  • You’ve ever put special locks on your doors to keep your child from eloping.
  • The words, “he doesn’t look like he has Autism” make you roll your eyes.
  • You don’t even react to all the strange screeches, grunts, snorts, etc coming from your child.
  • You’ve got Meltdown Early Warning Radar
  • You want to cry when someone says, “He must be mild…”
  • You use the Nintendo or ipod as a muffling device when you know you’re going somewhere overstimulating
  • You consider friends you’ve only talked to on-line as some of your most trusted confidants
  • You know the name of every Thomas engine.
  • You’ve wanted to strangle a parent of a neurotypical child who says your child just needs some discipline.
  • Some days you don’t have much to say to “normal” parents.
  • There are three sets of rules on your fridge, including one your child made for the dog. (Rules are important!!)
  • You celebrate with a friend when her child eats two bites of pancakes!
  • You brace yourself for a tantrum when you inform your kid there’s an errand you forgot, and wasn’t on the list
  • You’ve left a full cart in the store and left because of a meltdown.
  • You consider twitter peeps you’ve never met, who have autistic children, some of your best friends.
  • Your child has beaten Lego Star Wars 3 times in the last year and he’s only 7.
  • You watch a movie via your child mimicking it back at you instead of watching it on TV.
  • You get excited when your child eats something more than chicken nuggets and pizza.
  • You still bear scars from your child’s last 3 meltdowns.
  • You carry earmuffs and sunglasses in your purse for your child at all times.
  • You get excited when your child swears because at least they said something.
  • You have to change the movie your child is watching 10 times in 5 minutes because he wants to watch something else.
  • You watch the same movie over and over again with your child and don’t complain.
  • You get both hit and hugged within 5 seconds of each other.
  • You can’t wait for your child to go to school after a hectic weekend but miss ‘em minutes after school starts.
  • You would trade everything you have to spend just half an hour in your child’s mind to know how and what they’re thinking.
  • You find yourself using your child’s therapeutic coping strategies for yourself.
  • Your blood boils every time you see a status update about an autistic child being bullied.
  • The definition of a clean house is now one that doesn’t have an overflowing trash can, dishes in the sink are rinsed, and laundry is at least in the hamper or in the basket.
  • Your friends fade as your life is consumed with many therapists, teachers, doctors, case managers, intervention specialists and these people have no clue you almost feel like they are your new best friends because you spend so much time around them and the subject of conversation is your children…
  • A ‘good day’ means no one’s in the hospital, no one from the school called, no one from the police department is standing on your lawn and everyone’s sitting in one room without a problem.
  • You might be an autism parent if someone walks into your house and asks if you live in a dangerous neighborhood and you say no… the window locks, gate locks and three types of door locks are to keep my kid in… not bad guys out.
  • Your blood boils and it touches a nerve whenever you hear a child with autism being called the ‘R’ word.
  • Sleep has become more of a luxury than routine.
  • You never dare touch or move any of the perfectly lined toys/items on the floor, not even by a millimeter because you know he/she will immediately recognize the difference.
  • If your child accomplishes something that may seem minor and trivial to others, but for you it’s a great milestone that calls for a huge celebration and victory dance.
  • You’re able to spot another child on the spectrum from a mile away.
  • You’ve come to the realization that no one else will ever truly get what being an Autism parent is like than another autism parent. ♥

#MomsMeTimeTO Reminded Us of the Importance of #MeTime

MomMeTimeTO

I had the honour of speaking at #MomsMeTimeTO last Friday, sharing my story of parenting 7yo boy/girl twins with special needs, and being part of my stepdaughter’s support network as well. The message for the conference was to remind moms that we need to take time for ourselves as well.

The message I hoped to get across was to remind moms to “put your oxygen mask on first”. We all get overwhelmed and stressed but it’s how you deal with that stress that is key to how well you can parent your children. I don’t pretend to have it all figured out…far from it, I am constantly working on balancing my stress levels. Keys to managing my stress levels include my weekly yoga class, journaling, meditating, knitting, meeting with my counsellor once a month, spending time with my man and friends, and gasp, disconnecting from social media. I don’t do each of these things daily, but I do know that when I’m feeling overwhelmed and don’t want to go out and interact with others, that’s the most important time for me to get out, and spend time with people. I’m an extrovert…I get my energy by spending time with people…I refill my emotional tank, so to speak.

Most of the attendees were fellow bloggers so it was kind of fun seeing everyone looking at their smart phones, or typing away on their laptops. Later that evening, I checked Twitter to find that people had been tweeting during my talk…and I was honoured by what they were saying!

Of course, with a room with lots of bloggers, the blogs are starting to be shared now so here are some of them:

Little Miss Kat & Co: “Fun weekend with #MomsMeTimeTO

SoberJulie: “A Weekend For Me – #MomsMeTimeTO

A Vision For Our Kids: “Defining Your Own Serenity

1 Heart, 1 Family: “Ten Things I Learned From #MomsMeTimeTO” <added April 9, 2013>

Ideally Speaking: “A Wonderful Weekend with #MomsMeTimeTO” <added April 12, 2013>

Best of all, I met some amazing ladies on the one day I was there…can’t wait to tweet, facebook and chat with each of them! :)

30 Days of Pictures of Autism – Days 5 and 6

I missed yesterday’s Day 5 because I was speaking at a conference, so I’m including two pictures today to make up for it.

My son playing while we’re waiting at my daughter’s bus stop. He was filthy by the time we got home, but a “dirty kid is a happy kid”!

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My son reading with my daughter, him doing “hand over hand” with her hand pointing to the letters while they are singing the alphabet together. Precious moment!

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30 Days of Pictures of #Autism – Day 4

My man and my best friend decided to team up and send me to buy a new outfit to wear tomorrow at the presentation I’m making at a conference. My man provided the “means” and childcare, while my best friend provided the guidance, and frankly kept me from running out of the store screaming. I HATE shopping, especially clothing shopping for myself, and even worse, clothing shopping for myself at full retail price…no sales in sight. Ugh!

 

I was even given specific instructions from my man to go out and focus on getting something for ME for a couple of hours, not on my kids, and “take a break” from Autism. Alas, look what my best friend and I found at Build-A-Bear:

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So honey, looks like I couldn’t “take a break” from Autism, but I did get a lovely outfit. ;)

World #Autism Awareness Day FAQs – Day 2

Autism 21

Question from one of my friends when I invited them to ask questions on my personal Facebook:

I want to know just how wide is the diagnosed spectrum?”.

Well, the saying “When you’ve met one person with Autism, you’ve only met one person with Autism” is true. Some children are considered to be low-functioning, some high-functioning, and some in between, all in comparison to other kids without Autism of the same age. So the width of the Spectrum is frankly, huge…but always presents characteristics and behavioural traits that lead specialists to diagnose that child with Autism. The definition of Autism according to Wikipedia is:

“as a disorder of neural development characterized by impaired

social interaction and communication,

and by restricted and repetitive behaviour”

 

Common characteristics that parents initially present to their family doctor include some and/or all of the following:

  • no eye contact
  • don’t point using their index finger
  • using someone else to point
  • start talking and stop
  • line up items such as toys, etc
  • toe-walking
  • stimming (repeated body movements such as hand flapping, rocking, head butting)
  • unusual responses to people or attachments to objects
  • resistance to changes in routines
  • sensitivities (hyper- or under-) to things like sounds, tastes, etc

More information is available on the Autism Ontario website.

 

When we started on this journey, we approached the doctor when my son was 18months old, saying that he had been talking but stopped (whereas his sister started a bit later but kept on talking), didn’t make eye contact with anyone but me, used his father and I’s hands to point to items, and was lining up all his toys. It took another 2 years to get official diagnosis, where he was classified as “severe” but for those who know my son in person, they are amazed as this. He’s a happy little boy, with a smile that lights up the room, can work his way around Youtube like no one’s business, has made amazing developmental leaps in the last couple of years, is a funny dancer, and best of all…is talking! He doesn’t speak the way other 7, almost 8 year old little boys do, but his speech is one of the sweetest sounds I’ve ever heard…primarily because I’ve waited so long to hear it.

World #Autism Awareness Day FAQs – Day 1

Autism by the numbers

To honour World Autism Awareness Day today, I posted the following on my personal Facebook:

April 2nd is World Autism Awareness Day; April is World Autism Awareness Month. What do you want to know about Autism and how we live with it?

I received FANTASTIC questions from my personal friends and thought I would post each one with my response, one per day until they stop asking questions. So, the first question is a two-part question, which I will answer separately.

 

“I want to know why it’s on the rise.”

So do I!! Until we know the cause of Autism, we won’t know for sure why the diagnosis rate is rising. Personally, I believe that it’s a genetic predisposition with a potential environmental trigger that “releases” Autism in someone. It’s a fascinatingly complicated disorder, that is filled with tons of highs and lows.

 

Is it only in the “western world” that we are in with this or is it being noticed also in other places (EU, China, etc)?

Honestly, I had to research to answer this question. I’m ashamed to admit that I’ve been very North American-centric in watching diagnosis rates increase. When we started on this journey, the rate was 1 in 150 in the US (don’t remember what the stats were in Canada at the time). Now, almost 6 years later, the CDC just released stats of 1 in 50 in the US (whereas last year, it was 1 in 88 in the US). The latest numbers I’ve found in Canada are 1 in 100, from a few years ago.

 

So, after some research elsewhere in the world, here are stats I can find:

According to Autism Europe:

  • 1 in 150 children diagnosed in Europe
  • They estimate 5 million people live with Autism in Europe
  • Can’t find a date for these numbers but they are the same dates in the media information the organization is releasing for World Autism Awareness Day for 2013.

 

China has proved to be very difficult to find information and I’m not sure what information source is considered to be “valid” or reputable. But, I have found some:

  • According to china.org.cn, the rate is 14% of population born, which is an estimated 1.8million children in China. This number is from 2004.
  • According to EzineArticles:
    • Autism is called “zi bi zheng” in Chinese (doesn’t state which dialect).
    • No one was diagnosed with Autism until the 1980s in China
    • There are 100 doctors in China who are qualified to make an official diagnosis of Autism
  • According to Autism World:

- Rates could be anywhere from 1% to 4% of the population, which ranges from 1.3million to 7.8million children with Autism

 

According to the National Autistic Society in the UK, the rate is 1 in 150.

 

I haven’t been able to find an internationally recognized assessment tool to actually diagnose Autism. I know what the assessments are in Canada, having been through the process twice now. I’m not sure if the same assessments are used outside of Canada, let alone in non-English speaking countries.

 

A couple words about the most recent CDC findings, estimating the rate in the US to be 1 in 50…honestly, I question the legitimacy of these findings. From my research when it was released, 57,000 households were called in the US, asking them to participate in a survey about children’s health. 1 in 50 was determined from this survey. I wonder why stats weren’t compiled from actual diagnosis numbers throughout the country so, until those numbers are released, I personally will quote “1 in 88 in the US” as the rate.