#WorldAutismAwarenessDay 2015

2nd Annual World Autism Awareness Day photo montage:

https://www.youtube.com/embed/I5_aw8XBdDI“>

Last year’s montage is available here: https://youtu.be/9V51KVuGAr4

My family’s journey: https://youtu.be/siP4DLOm-YU

Please leave any questions you have below. I will answer them as best I can. 🙂

Dear Mom Who Called My #Son With #Autism A Delinquent

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A mom (we’ll call “Mom 1”) came running into McDonald’s screaming something like “a big kid is on a little kid in the playplace”. Immediately, I got a pit in my stomach…that big kid was probably my 9 year old son, in the playplace with all the other little kids. All parents went running into the playroom to see what was happening. We all saw the little girl who was crying and her mom (we’ll call “Mom 2”) was understandably being protective of her, while all parents were trying to figure out what happened. I just *knew* that my son did something, completely innocently, that scared this little girl, probably trying to hug her but, because he’s big for his age and she was maybe 4 years old, I can totally understand her fear. They were both way up in the top of the playplace, where no one inside the McDonald’s could actually see what was happening. I do not deny that he probably scared her but the situation got out of control VERY quickly.

Both Mom #1 and Mom #2 started yelling at him so I told them to stop, that he has Autism and doesn’t understand the language they were using.

Mom #1 said “Autism? Well then you’re stupid for letting him be in here unattended, and you shouldn’t even let him out of the house. Why are you in public with him?”

I’m sorry…but what??!!

I told her that he’s a child and is allowed outside, plus we haven’t had problems in the almost 10 years we’ve been going to that McDonald’s location. I tried turning my attention to Mom #2 to see if her daughter was ok. Her daughter was scared but physically ok. Mom #2 was understandably angry and upset.

Mom #1 kept yelling obscenities at me and my son. She even started claiming the little girl had peed her pants…which she hadn’t.

I’ll admit that I yelled back at her to stop yelling because it wasn’t helping the situation.

My son was calmly standing beside me, waiting because he clearly didn’t understand what was happening. I took him out of the playplace, got his winter stuff on, had him sit down while I got my stuff on…and Mom #1 started telling other parents how he has Autism so he’s a delinquent; he’s pure violence; he needs to be locked up; etc. I said “Excuse me, but I’m right here, and you’re talking about my CHILD. Stop spreading lies about him and Autism”. She started yelling and telling me how horrible of a parent I am; how dare I bring him out in public; he needs to be thrown away. I’m not proud but I lost it and told her that it was time for her to leave because she wasn’t helping the situation. We left as soon as we collected our things. My daughter was upset for leaving so quickly. My son was oblivious to what had just happened. I was ticked off. The kids’ grandfather was confused and wanting to protect all of us, but also get us home as soon as possible.

On our way out, I was glad to see Mom #2 taking her daughter and the other kids they were with back into the Playplace. That helped me feel better that her daughter was ok.

A few hours later, I’ve had time to calm down and think about the situation, and I’ve decided I would like to thank her…So, kind Mom #1…thank you…

Thank you for making me realize that I still have a redheaded temper (it’s been YEARS since I’ve seen it).

Thank you for bringing out my mama bear.

Thank you for changing the focus from the little girl to you.

Thank you for not allowing me to talk to Mom #2 to ensure her child was ok (I could see the child was ok, but I still wanted to check in, and offer to pay for their meals, etc).

Thank you for escalating the situation to pure emotions so I couldn’t ask you what you actually saw, which would mean I can then teach my son not to do that, thereby stopping it from happening again…because let’s face it, that’s what needs to happen.

Thank you for insulting my son over and over again.

Thank you for bringing my parenting into question (which I just laugh off…my ex husband tried worse after we split)

Thank you for spreading lies about what Autism is and who children with Autism are.

Thank you for motivating me to finally sign up for crisis intervention, basic breakaway and joint locks training, in case I have to protect myself and/or my children in the future, even if that’s to subdue my ever-growing 9yo, who is the size of a 12yo, during meltdown. I’ve been putting off signing up for it, not wanting to face the reality that he’s getting too big for me to physically intervene in a meltdown (which we experienced about a month ago, for the first time in over a year) and, dear Mom #1, if all that over-stimulus had caused a meltdown for him, you aren’t the one who would need to help him through it for hours or days. I am because I’m his mom.

Thank you for making my daughter get upset because she witnessed her mom yelling at another mom for the first time in her life.

Thank you for making me cry out of anger and frustration when I got home.

Thank you for showing me how much more awareness is needed out there because Autism is NOT pure violence, nor does it mean he’s a killer like you were claiming.

So, Mom #1, thank you for being the biggest motivation I’ve had in a few years to continue furthering my education to become a Social Worker to officially help other parents because, sadly, this type of situation happens all the time.

Thank you for making me even stronger.

Meghan

A Night With #DrDanSiegel

OptiMom and I were invited to attend a Parent Night with Dr Dan Siegle speaking about his newest book Brainstorm: The Power and Purpose of the Teenage Brain. We decided against driving into downtown Toronto in the middle of rush hour so we took the train into town. At Union Station, we came across Teenage Mutant Ninja Turtles – how cool is that?! So I asked some lovely young men to take a photo of us:

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We walked to the hotel where the event was being held: One King St West Hotel. Beautiful hotel space for the event! If you check out my heels in the photo above, you’ll realize I did not make the wisest choice of heels for a 5 city block walk. Ouchy! But I was away from children, and spending a few hours with grownups so of course that meant heels. 😉

We arrived early so we stopped at the bar for a quick drink first…both choosing pop. How responsible of OptiMom and I!

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The event was organized by the Hincks Dellcrest, prior to a 3-day conference where Dr Dan Siegel was the keynote for the first day of the conference. My tweets during the Parent Night pretty much tell the story of Dr Siegel’s talk. For those of you not on Twitter, please remember that “Tweets” are only 140 characters, so the messages can’t be “proper” English.

  • 70% of adult with #MentalHealthIssues can track issues back to prior to turning 17 years old.
  • Mary Gordon from #RootsofEmpathy is introducing @DrDanSiegel at @HincksDellcrest…my daughter LOVES RofE in her class!
  • @drdanseigel is a call to arms…arms to hug’. Awesome quote!
  • ‘Parenting from the inside out’ book by Dr Dan Siegel…going on the To Read list.
  • Empathy, compassion, resilience are all products of the mind…which includes head, heart and gut.
  • Cool that @drdanseigel tasked his interns to prove one of his books was wrong. Lol!
  • Audience participation to demonstrate ‘integration’…sang 1 note together; sing songs separately while closing ears.

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  • Dr Dan Siegel Overseeing the integration demo

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  • ‘All psychiatric disorders are due to missed integration, such as #Autism and #Schizophrenia. Mindfulness!’
  • ‘Medications are not enough. Mind training practices can now help retrain the mind.’
  • There is no such thing as perfect parenting but try mindful parenting. Don’t beat yourself up. Be kind to you.
  • I already wrote my exam on Biology of the brain two months ago. Brain hurts! It’s not on tomorrow’s exam. Lol!
  • 11 and 12yo children aren’t just ‘older children’.
  • Adolescent concept of ‘raging hormones’ is unempowering and is just wrong.
  • ‘Early intervention is not a luxury…it’s a necessity.’ AGREED!! #Autism
  • Schools need to learn how to embrace an adolescents passion/essence.
  • ‘If adolescent doesn’t belong to social circle, nature tells them they r dead.’  How support our #Autism kids?
  • Create schools where groups of adolescents gather to tackle world problems. Tap into their essence.

OptiMom and I had a great time. I felt like a “bobble-head doll” throughout his talk, and it was a good reminder to be more mindful in my parenting.

Attendance fee and transportation were covered in exchange for our participation in this event.

 

 

Overnight Outdoor Education Trip (#Autism) – Guest Post from Kim

A few weeks ago, I was having a tough day so I asked people who Like my Facebook Page to share some good news. Kim shared that her son had gone on his first overnight trip with his class. Fantastic! I asked if she would be willing to share how she and her son’s Developmental Learning team prepared everything so he could participate and enjoy the 3 day, 2 night trip. Below is her story. Thanks for sharing Kim!

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The day I found out about Liam’s Outdoor Ed trip I did not panic. I went into Autism mommy mode instead.   I started running scenarios through my head. With questions right alongside. Should he go? Would he enjoy it? Can they accommodate his needs? Would he panic? Would I end up driving to get him in the middle of the night?

 

Liam wanted to go. His friend Craig* (name changed) had made it sound like fun. He wanted to be with his friends. Liam wanted to do what his friends were doing. Liam had no idea what he was in for. Without having a prior experience with mental pictures to draw from…he simply had no idea.

 

Thankfully I have a great communication system with his Developmental Learning (DL) teacher. I sent her a note the next morning letting her know I wanted to get together to discuss the trip. She of course was all for it. We set up a time for about a week later due to March Break starting. In the meantime, she began asking the staff involved for information which included a basic breakdown of the typical day at the centre. It also included a diagram of the dorm rooms. She spoke with the school principal about accommodations for Liam’s needs.

 

Sitting down to talk with Liam’s DL teacher we went through and listed what his regular morning and evening routines generally were. We discussed what foods he likes and doesn’t like; and how his food can’t touch on his plate. We discussed some of the chores he is able to be responsible for at home (taking out the recyclables after school, putting out napkins for dinner, making his bed). We made lists of special items he would be allowed to bring, and what different things he should bring. We came up with a contact plan in case of homesickness.

 

The Outdoor Ed centre did their part too. They were able to give his teacher a basic run down of what meals were generally served. They sent tons of outdoor and indoor pictures from the centre to give Liam visuals to see before the trip. They explained what sort of helping chores the kids would be expected to participate in.

 

The biggest accommodation to Liam’s needs was in his sleeping quarters. Usually all the boys share one large bunk bed room; and the girls another large bunk bed room. There are also separate rooms where the teachers and parent volunteers would sleep. Liam and one friend were given a room in this area to reduce the noise and commotion triggers for him. With just the two of them it was a quiet place to go.

 

Prior to the trip story booklets were made up. One for each day that included a schedule with picture references to keep Liam on track and to help him see “what’s coming next”. Not being to know what is coming up later creates a lot of anxiety for him. He also a story booklet about homesickness.

 

We packed according to the list the centre provided (clothing, bedding). We also packed a digital clock (knowing what time it is at all times is important for him), his ear muffs (to block noise), his mealtime vitamins (can’t break dinner routine!), a rest toy (a stuffy of choice to sleep with), his chapstick and hand cream that he can’t seem to live without. He had a separate backpack with books, toys, and such for keeping busy during quiet time. He was allowed to bring his DS, but that was in the control of the E.A. that was along. Electronics are not allowed (except cameras) but as his iPad wasn’t allowed, this was as a reward system if needed. He never used it!

 

The other E.A. on the trip also was given my cell phone number to use as a message system before bed each night (3 day/2 night trip). In the case of mid-day homesickness Liam would have the option of texting me if needed.   Only heard from him at night! This E.A. sent texts to his teacher on how he was doing during the day, which she then passed on to me.

 

All in all, he did fantastic! He loved it, he enjoyed it, he PARTICIPATED! One of the teachers on the trip took pictures and Liam was in quite a number of them doing fun things. Reports from the teachers, the E.A.’s and some of the other students (I work with some of his classmates parents) was that he had a great time, it showed, and he was just a regular kid.

 

With lots of preparation by everyone this trip was a success.   No meltdowns or tantrums, he interacted and participated with a group, he tried new things, he always found foods he liked to eat, he wasn’t lonely or left out, he was helpful to others doing meal cleanup, he actually slept – away from home, with no family member. We are all so proud of him.

 

They say a picture is worth a thousand words……pictures from this adventure could write a novel.

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Kim is a married mother of three boys, and works fulltime outside the home. Her middle son (Liam) has diagnosis of “Autism – Pervasive Disorder” and was diagnosed near the end of grade four at 10 years old. Initially, he had been incorrectly diagnosed with ADHD and medicated with Adderal XL until almost a year ago. Since the corrected Autism diagnosis, he is no longer on medication. He is now placed in a Developmental Learning class while integrated in three of eight classes with his mainstream grade 6 class. He is now catching up with social skills, his reading skills have improved, and his speech and language workers continue to work with him as well.

Melatonin = Bad Parenting…??!

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Earlier this week, I jokingly stated the following on my Facebook Page: “Umm, my son has fallen asleep on the floor, wrapped up in a blanket. Anyone willing to come help me pick up my 100lbs ‘baby’, carry him up the stairs, and put him to bed? He’s in melatonin state. Anyone? Nope. Oh well, thought I would try. 🙂

Surprisingly, it sparked quite a bit of conversation back and forth. One person shared with us that she’s been called a bad mom for giving her child with Autism melatonin to help him calm down enough to sleep.

Whenever I’ve encountered that type of “feedback”, I calmly ask them how much sleep they got last night, the night before, and each night for the last week. Usually, they will say anywhere from 6 – 9 hours. I then explain to them that without melatonin, my son’s natural sleep pattern is he’ll finally fall down (and I mean literally fall down) and go to sleep around midnight (after an 8pm bedtime routine), sleep until about 2am, and then he’ll be up for the next day. Most times, it’s enough to stop them from questioning my family’s need for melatonin.

Other times, they will make the comparison between his sleep pattern and being the parent of a newborn. I will ask them how they felt when they had a newborn. Exhausted. Yes, and when did your child start sleeping through the night? Usually I get an answer of anywhere from 1 – 3 years old. I then remind them that my son is 8 years old and if it wasn’t for melatonin, he probably wouldn’t have slept more than a couple of hours per night since he was born…and without naps either. I’ve never had anyone question beyond there.

I personally always look at these types of conversations as an opportunity to raise awareness about Autism and special needs in general. Don’t get me wrong, sometimes there are conversations where I’m tempted to lose my patience/temper and tell the person off, but I don’t…unless they are stopping me from ensuring my kids are safe, then all bets are off!

I just keep reminding myself that, when I was pregnant with my kids, EVERYONE had an opinion of what was best for me during my pregnancy, until I laughed and told them I was having twins. Rarely did anyone know what to tell me other than some distant person they heard of who had a horrible multiples pregnancy and birth. I would respectfully tell them that I didn’t want to hear about worse-case scenarios because if I wanted to focus on that, all I had to do was pick up ANY book about pregnancy. That’s the ONLY information out there – doomsday information about giving birth to twins.

Then EVERYONE had an opinion about everything baby-related: cloth diapers (nope), breastfeeding (yes…for a year!), immunizations (yes), baby carrying (nope), co-sleeping (sometimes), feeding routines (yes), strict bedtime routines (yes), etc.

Then EVERYONE has an opinion about preschool and school-ages: daycare (yes), work outside the home (yes…for a while anyway for me), homeschool (nope), after school activities (yes), have assessments done for potential diagnosis (yes!!!), etc.

I’m still confused by why people believe there is only one way to raise a family…their way.  The old saying “walk a mile in someone else’s shoes” is true. If your family is blessed with special needs, then you know what is best for your family; if your family is blessed without special needs, you still know what is best for your family. Why on earth would you be telling the other family how to best raise their family???

Everyone is an expert…in raising THEIR own family.