#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. 🙂

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#Autism #School Calendar & #ReportCards

My Kids Alternate Special Needs Report Cards

A bit late because I was sick for a week with step throat (stay tuned for the blog post about that!), but here’s my son’s Autism class’ calendar for February:

Son’s School Calendar Feb 2015

His class is an Autism-specific class offered through our school board. They follow a Monday through Friday schedule rather than a Day 1 through Day 5 schedule like the rest of the school does.

Report cards were also sent home last Thursday so I decided to film how my kids’ report cards are different from other report cards that go home. My daughter’s report card is the same structure as mainstream school because she’s in mainstream schooling, but has a couple of accommodations for her IEP (Individualized Education Plan). My son’s report card however is very different from mainstream school, seeing as he’s in an Autism-specific class.

My #Son’s #Autism-Specific #Class Schedule

We are fortunate that my son qualifies for a “contained classroom” that is Autism-specific, which includes a teacher and two Educational Assistants for the six children. His teacher is new this school year. She hasn’t taught an Autism-specific class before (apparently her role last year was teaching 200 students English at a different school) but her background is actually doing one-on-one ABA therapy with kids with Autism. Needless to say, that made me feel better at the beginning of the school year of her ability to teach my son and his five classmates, in this Autism-specific class. She also clearly loves her job too!

Each month, the teacher sends home a calendar of the activities for the month. It states the “days” the rest of the school is following for their schedule (Days 1 through 5) but thankfully, his teacher understands the importance of a predictable schedule. This is his schedule for January:

2015 January Schedule

We have joked every month until now that he’ll help for the cooking instruction but won’t eat it…but next week, they are making “pigs in a blanket”. He’ll eat those, but I have to let the teacher know that we call them “croissants”. But how cool is it that they have a therapy dog come in every week?!!

They even have a huge daily schedule posted in their classroom:

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Love it!

First Day of Fulltime #School / End of #IBI (#Autism)

Last Friday was the end of an era…a 2.5 year era in my family’s life. My son finished IBI (Intensive Behavioural Intervention therapy). When we moved back to Big City, Ontario, the weekly schedule was that he went to school on Mondays, in an Autism-specific class, then IBI therapy Tuesdays through Friday, from 9am – 3pm. Last week, my kids were at their dad’s for March Break so I took a little baked goody for my son’s therapists on Friday, arriving at the pick up time (my ex was NOT happy, and thought I should have asked his “permission”…but I digress…). The therapists have been so amazing with my son that a home-made baked goody is definitely just a tiny token of thanks compared to the work they have done over the last 1.5 years (at this location). My daughter handed over the banana bread and my son said “thank you” to the therapist…and the therapist cried. Happy tears and sad ones as she said she’s going to miss my son. She was going to share the bread with my son’s team. They even sent home a HUGE inflated Sulley…one of my son’s favourite characters. He went to their dad’s because they were there until Sunday, and since returning home, Sulley’s been hanging out on the ceiling in the living room:

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Yesterday just felt like a regular day because he usually goes to school on the bus on Mondays. Today however, he was back on the bus, heading to school. Normally, he sits in a seat by himself but he’s tried getting out of the rear door of the bus so today, he sat beside one of his friends closer to the front of the bus. I’m not sure if the look on his face was confusion, sadness, or perhaps a bit of both…? I’m actually surprised that he didn’t say “IBI please” or something similar, so I’m guessing he may understand that IBI is finished…?

So, here it is 9am and I’m still in my pjs because I don’t have to drive my son to IBI. In fact, because I have the greatest neighbour in the world, and she takes my daughter and her own son to school since they are in the same class, I could stay in pjs for most of the day. I do need to get dressed though today because I will be picking my daughter up from her afterschool math program (she LOVES math! Woohoo!) then heading to class myself (if you Like me on Facebook, I got 90% on my Psych exam yesterday – yay!). Tomorrow however, all my appointments are via Skype so methinks I’ll be in pj bottoms all day. Shhh…our little secret. 😉

I even got to have my breakfast…at home! Strange feeling to actually eat breakfast during the week, instead of just grabbing my smoothie and leaving.

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I will admit that I have a pit in the bottom of my stomach from nerves. The last time my son was in fulltime school was in Senior Kindergarten. It was half-days at that time, three times per week. At least one of the three days per week, within an hour of me dropping him off, I would get a call to come pick him up. At that time, he was a runner, violent and completely non-verbal. Although I “know” his behaviour has improved dramatically and he’s able to verbally communicate. I “know” the teacher and EAs in his class are specifically trained to work with children with Autism. I “know” everything will be okay because he’s been with them for 1.5 years already on Mondays and he loves school. Alas, the pit is still in my stomach, waiting for that phone call from school. I’m nervous, anxious, scared and sssoooo happy for him to be back in fulltime school. A sense of “normalcy”…whatever that means. 😉

Now, off to my home office to work on my assignment that due tonight…gulp!

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.

Guess What? #Autism Parents are Stressed

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Every year for the last 5 years, I fill out a “stress test” so “they” can get quantitative data about how stressed parents of kids with Autism are. This type of quantitative data is how “they” know that we apparently have the same stress level as soldiers coming back from war.

Every year, I get the results and I’ve gone from being in the 82nd percentile the first year to this year being in the 97th percentile of stress…go me! Every year, the assessor presenting me with the results promises to refer me to “additional resources” and every year, very little happens. Two years ago, they connected me with the staff counsellor and she was helpful in letting me know of the Disability Tax Credit which should have been dealt with every year by the accountant doing my taxes (needless to say, I had that fixed!).

Last week, I had an appt today which pleasantly shocked me. The Social Worker I was referred to based on last year’s stress test (late in the year) actually listened to my current and future concerns, my thrills (yes, I told her of cutting my son’s hair!), the roadblocks I experience, and my reservations, she actually took actionable notes AND booked an appt with me to give me all the outcomes she’ll be working on.

She even listened to my To Do lists, for both my son’s Autism diagnosis, and also my daughter’s new Anxiety Disorder diagnosis, which I’ll admit is overwhelming me. I “get” my son’s Autism (as much as I can, not being on the Spectrum myself) because it’s logical. Anxiety Disorder on the other hand, is a whole other kettle of fish. It’s emotionally-based, and I’m not good with my own emotions let alone be able to figure out someone else’s. I don’t “see” triggers yet that bring her anxiety to the surface. I hope I will one day, but until I do, I just keep learning, and accessing local resources the Social Worker will be putting me in touch with, as well as the ones I’m just waiting for the intake meetings to occur.

I went home and freaked out my man after meeting with the Social Worker because I walked in the door and cried because I was so happy. I actually felt like someone in the system is finally LISTENING and even more important is HELPING me, instead of just saying “well, you should do…” without giving out organization names or contact information. It also felt good to know that the “system” sometimes confuses her too, so she can only imagine what it’s like for parents of kids with Autism as we’re tired, burnt out and just trying to get through the day. So thank you Social Worker! I am truly looking forward to working with you!