For us, and a lot of Autism parents, the trick is knowing the difference between a meltdown and a tantrum. What you see in the video is a tantrum for sure. Shortly after Shanell stopped the video Kate started into a meltdown. Tantrums we, deal with like most parents, but meltdowns.....well they take a gentler touch and bit of experience to get past.
We don't let Kate 'run the show' by any means, but when things get to be a little too much, it's our job to help her deal. This one was our fault, really. There was too much change happening all at once when we announced it was bedtime. After this video we gave her a few minutes longer and some hugs to get used to the idea that it was bedtime and calm down. After that she settled in OK. It was a rough bedtime, but we got it done. Kate was still mad that she had to go to bed, but not this mad, and she went to sleep.....eventually :) Lesson learned for Shanell and I.
Knowing how to read signals like these and knowing what to do about them is the real craft of the Autism Parent. It's also why we have a hard time letting people babysit our kids. Can you answer "yes" to these questions? If Kate had got extremely upset while you were watching her could you tell the difference between a meltdown and a tantrum? Would you know what to do? Could you stay patient with her while she screamed in your face, hit you, bit you?
What we've been taught by some experts, we know, is to read what the child is telling us. Are they 'losing it' because they're saying "I want something, give it to me now!!!" or are they trying to say "I can't handle this, please help me."
The difference is crucial.
Talking to Your Kids About My Kid
Well…it’s about time to start explaining some things to Kate’s big-sister Grace. She’s growing up fast and she’s pretty darn smart. Her friends are growing up too and they’re already starting to notice Kate’s a little different. I can tell that Grace understands her little sister, hell she’s exposed to her all the time, but for our friend’s kids autism can be a little confusing. I imagine autism must be a tough one for a child to figure out. "Kate looks like everyone else, so why does she act so different sometimes?" Tough question kid.
So as parents what do we do when there's a tough parenting problem? Ask our parents, or our friends? They’ve been there before right?…………not this time. So; if we can’t ask our family and friends, what can we do?? That’s right, we GOOGLE it!! So that’s what I did, and it didn’t take long to find some pretty good ideas. I’ve paraphrased the highlights and Shanell and I added a few of our own. The is hope that other parents can use this as a guide. I know I will use these ideas with Grace. We want everyone and their horse to know about Kate and some of the struggles she’ll face because we believe it will give her the best chance for success.
So here are a few talking points. Please use them when your kids start asking you some tough questions.
Here goes..............Our Uneducated guide for talking to your kids about autism;
You can’t tell someone has autism by looking at them. They look the same as you, me and all your other friends.
Kids with Autism have to work hard at some things you might find easy. Like talking, playing games, or making friends.
They might do something repetitive because it’s fun or because they want to block out something that is overwhelming. Sometimes they will do things like jumping, rocking, or flapping their hands. I know it looks funny but it’s OK. You can “join in” with them if you want. They would probably love that.
Everybody does something that’s weird. Nail biting, tapping feet or chewing pencils. It’s OK to be different.
Some kids with autism are “sensory seekers”. They seek out pressure and like to bang and crash and play rough. Other kids are “sensory defenders”. They see, hear and feel things very strongly and may need to shy away from noise, light and rough/busy play.
Sometimes kids with autism won’t know how you’re feeling and you might not be able to tell how they’re feeling. Tell them how you feel when you’re angry or sad or happy and ask them how they feel when you’re not sure.
Just like you, kids with autism can get really interested in a topic, or a game, or a toy. They may forget that you might want to talk about something else or play a different game. It’s OK to ask if you can do or talk about something else.
Some kids with Autism find it hard to join in a game or they might join in at the wrong time. Just like “normal” kids that are just a little shy, kids with autism might not know how to ask if they can play with you. They might need your help understanding how to play the game. Ask them to play with you and be patient, it’ll take a while but they’ll get it.
All kids with autism are a little different. They don’t all like the same stuff. Different things can make them feel bad too. It depends on the kid. Someone might really like music, another might think it’s too noisy and like quiet time.
Sometimes kids with autism can have really bad "meltdowns" when they aren’t happy or feeling overwhelmed. It’s not a tantrum. Don’t worry they’ll be fine. Don’t be afraid.
At home and school, teachers and families will probably have different rules for your friend with autism. I know it might seem unfair sometimes, but your friend isn’t being bad. Don’t get mad at them.
Your friend with Autism probably has a sister or a brother. I bet that sister or brother would love it if you made a special effort to play with them.
You can be the best helper to your friend with autism. All you have to do is play with them and be a little patient.
It’s OK to ask your friends Mom and Dad about autism.
Here’s a resources from the Autism Society. The first one is for talking to children and the second is for talking to teens.
Here’s a link to a few videos about a filmmaker who’s befriended a young man with Autism.
Chad and Jenks
I like these because Andrew is really genuine in his enjoyment of hanging out with Chad. Being Chad’s friend is very rewarding for Andrew and he gets just as much out of the friendship as Chad…probably more.
The Bottom Line:
We feel that Kate’s peers, can teach her more about life and being a friend than we can. I'm going to start explaining things to Grace soon and we hope you'll do the same with your kids.If we talk to our kids about autism early and often then they won’t be uncomfortable or scared around kids like Kate. If I was going to do a “Ted” Talk that would be “my idea worth spreading”.
I haven't done one of these in a while and it's probably because I've been fighting some battles. Meetings with our Provincial Finance Minster, Education Minister, and an Administrator at our Local School District have taken me away from the blog. So my apologies.
I've been doing my absolute best to talk to folks about what it's like to have a child with Autism and here's what I've learned. "People" are hard to teach, but teaching a person is much easier. I'll let Tommy Lee Jones help me illustrate the point.
OK. So that's a little harsh, but what a hidden gem of insight, buried within a Hollywood blockbuster! I can remember watching that movie and thinking "Wait a minute what did he just say?!?!" I just came to the movies to eat popcorn and watch some aliens get blown up. It was kind of a cathartic moment for me. "People" are happy and comfortable with the realities that they've created either for themselves or by what's presented to them on television. Here are two examples; 1) Global Warming is a big problem and is starting to make people scared? Just re-brand it as "Global Climate Change" and watch as the issue gets swept under the rug and forgotten about. 2) Rates of Autism Diagnoses increasing at an alarming rate? Don't worry watch this video about a 12 year child doing math at the level of a PhD. Astrophysicist and watch as the masses take a collective sigh of relief.
So here's what I've learned as I put myself out there and been open and honest about what ASD (autism spectrum disorder) is. I can educate a Person, but I need to do a better job at educating People. People come with some pretty out there pre-existing ideas. All I can do is help them find the reality. The struggle is person to person at this point.
At this stage, we feel Kate is pretty safe. She's at a daycare with people who love her. Her family and extended family support the hell out of us and Kate. But, I'm scared about when she leaves her loving little world. The situation at M Spa that we've all heard about doesn't happen everyday. But I guarantee that other people at that spa that day were thinking. "Those parents should do a better job of controlling that child!!" Autism isn't something that is easily recognizable but it is easily misunderstood. There are no physical signs that would show the layperson that the person or child in front of them has ASD and the child may appear to be acting bad or abnormal. When humans are in a group, like a public place we don't like abnormal things. There is an expectation of how a person should act. We can get scared and unpredictable and yes even a little dumb when confronted with someone acting different.
I believe that people with Autism can help us all be a little less scared, a little smarter, a little more accepting and ultimately a whole lot better.
Teach, Treat and Be Merry :)
Honestly, should we really be surprised that we can't get it together when it comes to treating Autism?
Here's a quick list of possible therapies and treatments (obviously I know not all of these therapies have 'scientifically acceptable' evidence behind them but the growing list speaks to a community looking for variation when treating their child): Defeat Autism Now (DAN!) protocol, socialization, Pamela Wolfburg and playgroups, Auditory Integration Therapy, Lovaas and Applied Behavior Analysis (ABA), early intervention, home-based, school-based, residential care, TEACCH, Boston’s Higashi School, special diets, promises of a cure, vitamin B-12, swimming with dolphins, acupuncture, play therapies, The Son-Rise Program, Relationship Development Intervention, Floortime, physical therapy, music therapy, equestrian therapy, and Intensive Multi-Treatment Intervention (IMTI). Source (http://www.autismfile.com/treatment-therapy/moving-toward-a-multi-treatment-approach-to-autism-the-whole-is-greater-than-the-sum-of-the-parts).
These treatments have been developed over the years by psychologists, doctors, academics, parents etc. All well meaning folks, but the system from within they operate is antiquated and slow.
As a parent I find the developers and proponents of these treatments exhausting, and needlessly competitive. Time for a wake up call. YOUR SYSTEM IS TOO SLOW TO KEEP UP!!!!!!!
Just like the obsolescence that new computers seem to have within a week, "evidence-based" treatments seem to be light years behind current research. Why is it that the medical system is so slow to react to change and so quick to reject something new? Why does something have to turn up in a medical journal before it is taken seriously? If you want to find out if something works, ask the true experts in the autism game: the parents. I understand the scientific method and the process that should be followed before something gets the stamp of approval. Have they put protection of the process/bureaucracy over protection of the patient's rights? Probably...
The truth I see is that every one of the therapy and treatment options listed above probably has the ability to help our children to varying degrees of success. The job of education and medicine is to evaluate each child and determine what is best for them on an individual basis. Pick treatment and therapy from the menu and dive in with both feet. Don't "treat by legislation". There is no cookie cutter treatment that will work for every child with ASD. Stop focusing on protecting the sanctity of your "evidence based" approach, and the bureaucracy. The opportunities for success are staring you in the face. They are two, three and four year old faces, just itching to learn from you. Allow the professional educators and the therapists on the front lines to evaluate each child and TEACH, TREAT and be MERRY!!!
If I Could Do it All Over Again
Have you ever walked by someone in the mall or seen someone walking on the street and just known that they didn't quite fit in? Do you remember laughing at another kid in school because they didn't act the same as everyone else? Did you do it a lot? I did. I'm guilty of that....and I bet most of you reading this are guilty too. Makes you feel a little shitty doesn't it. Now that you're all grown up I bet you wish you could do it all over again. "I wish that I knew what I know now when I was younger," by Faces strike a cord with anyone?
Since Kate was diagnosed my patience for people who don't quite fit in, or struggle with social interactions has grown exponentially. Just last week I was waiting in line behind a gentleman ordering lunch. He was having a hard time deciding what to order. He had a question about every item on the menu. Every item!!! It was taking a really long time. The old me would have gotten really frustrated, but not the new me. The new me listened a little closer to the discussion between the man and the cashier. Turns out the man was on a gluten free diet. He had to be pretty careful what he was ordering. I get that it's difficult to get food when you're on a gluten free diet now. But, when I turned around to sneak a peak at the other customers in an ever growing line I didn't see a whole lot of tolerance on the faces. It's a shame really. To a lesser extent the man in front of me was being singled out for being a little different. Just like when I was back in high school teasing the kids who didn't fit in.
So what's with this oppressive societal pressure pushing us towards normality? What is normal? Who decides? Are you normal? I doubt it.
So do you wish that you could go back and do things a little different? Did you tease anyone? Were you even a little bit of a bully? It's OK, you can make up for it :) Maybe the next time someone is clicking their pen or tapping their foot on the floor in a meeting you'll give them a break. They might be doing it because the social interaction is stressing them out and they need to focus on the tapping subconsciously to relieve some stress. Maybe the next time someone needs to be alone for awhile you'll understand and not bug them about it. This is my favorite clip from The Big Bang Theory. Some people may not like that I've used Sheldon Cooper as an example here, (is he a tribute to autistic individuals or an offensive caricature of Aspergers?) but I think it fits. There are differing opinions on how the show wants us to think of Sheldon. I'm not trying to stir up any trouble here, just trying to make a point. At about 1:30 of the clip he explains why he goes and takes a break everyday. He's overwhelmed daily by social interactions. He's overstimulated. I'm not sure I would have understood before, but I do now. The clip brought a tear to my eye the first time I saw it.
So what's the takeaway? What can you do?
I think you have two choices when presented with an individual who you may perceive as 'different' or 'not normal'. You can make the lazy choice and decide that the person is different and all they deserve is to be ridiculed, or be made to feel below you. Will this make you feel better about yourself? Will it make you feel like you're normal? Or, are you just perpetuating the societal convention of striving for normalcy. The second option is to really think about what that person might be experiencing. Maybe they are under-stimulated and need to move around a lot. Maybe they are over-stimulated at times and need a break. Here's what our journey with autism has taught me. There a people in this world who are different and perceive the world in a different way. Be patient, tolerant and understanding. Teach your kids that others may struggle where they thrive. Teach them to celebrate the differences in others and focus on their strengths. Maybe then they won't tease the different kids. Maybe then we can make up for the teasing or bullying we might have committed when we were young and didn't know what we know now.
Oh the things we've learned since July. And the things we'll accomplish in the future.
"Here's to the crazy ones, the misfits, the rebels, the troublemakers, the round pegs in the square holes... the ones who see things differently -- they're not fond of rules... You can quote them, disagree with them, glorify or vilify them, but the only thing you can't do is ignore them because they change things... they push the human race forward, and while some may see them as the crazy ones, we see genius, because the ones who are crazy enough to think that they can change the world, are the ones who do." - Steve Jobs
A message for Mr. Jon Stewart
First on behalf of the World, thank you for The Daily Show. I watch it every day at work on my lunch break. Thanks for keeping us all in check and cutting through the bullshit. Thanks for coming back from your Christmas Break with a bang. Lots of crazy stuff went down while you were on vacation. As always you and your writers didn't disappoint. You went after the tough issues and put things in perspective after the talking heads muddled through the issues. Love the show.
Your show and your intelligence have made you a personal hero of mine since your appearance/confrontation on CNN's Crossfire. It was truly a legendary performance.
I also wanted to thank you for Night of Too Many Stars. As a father of a child with autism, it really means a lot to me that you would put yourself out there for such a good cause. My daughter was diagnosed with ASD in July. When we got the news my wife and I were gutted. It took some time to get our heads around it. What does it mean? Where do we start? The doctor gave us some paperwork and things to sign and sent us back out into the world changed forever. After The Diagnosis I feel like we actually grieved the loss of a ‘neurotypical’ child. We really felt like we’d lost something.
We made the decision early after her diagnosis to be open about it. We weren't shouting from the rooftops or anything, but we told people what was going on. After watching Night of Too Many Stars we kind of took it to the next level. We started a website www.goteamkate.com. We've done an interview with our local newspaper here in New Brunswick. We're making t-shirts for her therapists and family. I guess you could say we're shouting from the rooftops now :) It would really mean a lot to me if you would check out our website. If you liked us on Facebook I think I would shit a brick.
We've learned a lot since the diagnosis. We've researched therapy options. We challenge the government and the medical professionals to do their best. Just like you take on the newsmakers, we cut through the bullshit and push for what's best for our little girl.
We have discovered one unsettling fact however. Parents tend to be marginalized by autism policymakers. People in government are so hung up on titles, educational background and their own egos that they forget how much of an asset parents like us can be. We spend more time with our children than anyone and we are more motivated to find suitable therapies and interventions; we search for a cause and a cure etc. It’s emotional for us. It’s not our job it’s our life. The bottom line is that parents have more to offer than they are given credit for. They should be given a voice in the process of treating their child and searching for answers.
So, here’s where I believe you come in. You’re a smart guy. Why don’t you show everyone how educated parents of autistic children can be on the subject? Talk to the always funny and brilliant Big Daddy Autism or Homestyle Mama just to name a few. I’d love to see you challenge someone from the CDC or discuss some myths about autism with Sanjay Gupta or Mark Blaxill. What about asking Alex Plank what everyday life is like living with autism or check in with another father. As you know it’s not easy being the parent of a child with ASD. We worry a little more about them and what the future holds for them. We could use a boost from time to time. If you’re willing then I bet you could provide that boost. Just like your appearance on Crossfire, a conversation about autism on your show or some other medium would be truly legendary.
I wish you and your family all the best on your journey,
Alex Mouland, fellow father, big fan.
Finding Inspiration Wherever I Can
So lately I've been drawn to music that doesn't really reflect my usual taste. I'm a Green Day, Pearl Jam, Nirvana kind of guy. I know…..it's not hard to tell that I was a teenager in the 90's. I can remember listening to Smells Like Teen Spirit for a month on repeat.
Lately it's been a little different though. Green Day doesn't really sing about issues that I can relate to anymore and Nirvana can be a little much. Pearl Jam….yeah they're still good :) I think my new favourite band might be have to be Coldplay. I think the Coldplay thing started when I watched a Youtube video that our Facebook buddy Lou Melgarejo made. It's a great, simple video that's been seen by a quarter of a million people. Check it out.
So, why am I drawn to Coldplay? I find myself downloading a lot of their music, searching for videos of their concerts and googling the meaning of their lyrics. That's not normal 'me' behaviour. Maybe it's because they seem like actual musicians. Maybe it's because I'm tired of bubblegum pop music, where you're never sure if you're watching an artist or a product constructed and controlled by a corporation. Mostly, I think it's because I need some daily inspiration. It's not easy having a child with ASD. Its turned me into a big feeling guy. So I need a little inspiration almost every day to keep it together. I guess bands like Coldplay keep me going. There's a rare sincerity that you don't find from artists these days. I think Chris Martin is a big feeling guy too. I'm also into The Sheepdogs. I heard those guys on the radio talking about their song "I Don't Know" once and I immediately liked their attitude. The song is about watching the world and being totally lost in the bullshit of it all.
Shanell made up a list of music for Katie's dance party. It's great. She really nailed it. Here's my music list. Consider it a mixed-tape I've made for everyone who reads our blog. I call this playlist 'Charging" because I fully intend to listen to it while I'm charging down the slopes this winter.
Fitzpleasure by Alt-J
Radioactive - Imagine Dragons
Sail - Awolnation
Hard Sun - Eddie Vedder
Just Breathe - Pearl Jam
Little Black Submarines - The Black Keys
Too Close - Alex Clare
Paradise - Coldplay
The Scientist - Coldplay
Fix You - Coldplay
Paper Planes - M.I.A.
I Don't Know - The Sheepdogs
I Don't Get By - The Sheepdogs
The Way It Is - The Sheepdogs
While I'm making a list I might as well include my new favorite movie. Superheros of Stoke by Matchstick Productions. Movie's like that remind me that anything is possible and that we should all reach for the top. The sky is the limit for Kate, and it really is the same for all of us. Watching those kids ski lines in Alaska and push the limits has given me the courage to pursue my next move for Team Kate. An open letter to Jon Stewart. Watch for that letter in my next post.
I hope my list brings you inspiration, a distraction from the grind, happiness or whatever else you might need to get through your day.
Diary of a Dad
Every week is an eventful week on Team Kate. Every week we manage appointments and wait for word on important issues that are out of our control. Like, where will Kate’s treatment take place? When will it start? Who will be working with her? I’m a bit of a control freak. I’m an engineer and I love solving tough problems that make people’s lives better. I like making people happy when they are frustrated or hurt. So you can imagine my frustration with the process of getting Kate into treatment. Nothing is in our control. Nothing…Why can’t they see what I see? Do they realize the knife’s edge that Kate is on? Do they know that if she doesn’t get into treatment with a quality person her life could be affected forever? Do they see the potential I see? She’s two and a half. Her chances of having a good outcome are really good. The importance of early and intensive intervention is highlighted in every publication, every essay, and every paper produced on the subject of autism treatment. But here’s the part that’ll really bake your noodle and make you want to scream. They do know how important getting Kate into treatment is. They just can’t get it done for her. We are dealing with the egos and priorities of adults who don't know, and cannot know what it is like to feel helpless when your child needs help. I can’t tell you how many times in my life I’ve seen an adult’s ego or need to feel validated get in the way of a child’s success. I mean how dare you? I’ve coached sports and watched parents put their goals and ambitions onto their children. I’ve seen adults who don’t get along refuse put their shit aside to do what’s best for a child. They say keep an even keel. Don’t get too high with the highs or too low with the lows. “It’s a long season”. Could someone explain to me how I am supposed to keep an even keel when my child needs something and I can’t give it to her? I’m lost. There are days when we feel we are close to getting her what she needs and then just as quickly we are back to square one. I feel like bad parent. I know what she needs and I can’t get it for her. Never has “so close but so far” been so appropriate. Your treatment’s coming Baby Kate. We’ll get you what you need. The sky is the limit babe; no adult's ego will take that from you. I promise.
Grace and Kate's Dad