My name is Amy and I am a wife and mother of three beautiful children. I live in Toronto, Ontario, Canada. Most of the resource articles are Canadian or Ontario, and some are even Toronto based articles such as planning for the future and how to stay organize with tips may be helpful to you if you are not Canadian. I also document our autism journey through my blog and I invite you to take a look.
My oldest son is 5 and a half years old, my middle child is 3 and he was diagnosed with autism at 2 and half, and my baby girl is 9 months old the time I wrote this. I started this website because I found all the information overwhelming and no one seem to have answers to the questions I had. More importantly the resources out there are so scattered that if you don't know where and how to look, you might miss out on an opportunity that you can't afford to miss out on. I'm still learning and find it fascinating that the resources I've come across never mentioned a new program or activity or fund I found through digging myself. I am now my child's advocate and he needs me to find every resource out there that is available to ensure, he will be the best of what he can be.
How can one apply for something they never knew existed? Or how sad is it to stumble across a fund you need today not the next round which is often a year later. I hope you will find my articles useful and hope it will help you and your family.
My blog consist of the following categories, the happy, the events, the struggles, the others (rest of the family) and the famous sleeping issue. I want to share with you our daily life, the ups and downs to maybe make you laugh a little, or cry and possibly nod your head as you read saying oh my child does the exact same thing. I like reading other people's stories that are similar to my situation and see how that child grew and how they are doing now. Of course every child and family is different but I want to document my journey for me to reflect on and perhaps allow someone like myself to read how JB is doing as he grows.
I’m a regular human and by no means not anywhere near perfect but if something worked for us, it might work for you and make your life a tad easier. My blogs are honest and gives you a taste of the journey we walk, our cuts and bruises from our stumbles and falls we face, our successes and happinesses. I hope to make you feel better or just know that there is someone out there you can relate to.
Let's start off from the beginning. I had a regular pregnancy with JB. Lots of puking to a point where my esophagus was sore and eating or just swallowing was painful. He was born at 38 weeks 4 days and unlike the first birth he came out super fast. I didn't even have time to get the damn epidural and out popped my beautiful baby. He met almost all milestones but was delayed in speech like his brother. I didn't think of anything until he turned 2. His second birthday came and passed and he was still not speaking. I started being concerned and at the pediatrician we asked to explore developmental testing.
A month after my third child was born, in September, things went downhill really fast to a point it was very concerning. He was no longer napping, eating at daycare and was the most miserable grumpy toddler ever. His frustration was to the roof and it was such a crazy time. We thought maybe the change in a new family addition and also the fact that he moved from toddler to preschool class contributed to this drastic change in behaviour but whatever the case was, we need to change something as it was a dark miserable time. I now had a newborn to take care of, extremely sleep deprived with not just a new baby but also because JB was screaming his eyes out for 3-4 hours per night, 2-4 times a week. We are not talking about bawling in the middle of the day but between the hours of 2am-7am. He was physically exhausted almost everyday and it just spiral with all the combination of not eating, not napping and downright just miserable. On the good weeks we get a few bad nights with a bit of a break before next round, but on the bad weeks, where he is up from 2am-5am or 3am-6 or 7am back to back days, we get a few hours of sleep a night.
We pushed for developmental testing and was lucky to get into a trial where we skipped the line due to a study research. Long story short, during the miserable period I did a lot of reading and researching. I was very confident that he has autism before even seeing the specialist. As I began reading about autism, it was like a checklist, he fitted the criteria of so many items it became so obvious. It was kind of like the ah ha moments where I thought to myself how did I not see this? I spent many nights crying over the uncertainty of what his future will look like. It was also so hard hearing him bawl his eyes out for so long that he is so physically exhausted he finally falls back asleep. The husband did most of the comforting, bouncing and rocking to try to get JB back to sleep.
It got so bad, we pulled him out of daycare and started to looked for alternative care even before the assessment results came out. I even tried to put him on the Autism Program waitlist without the paperwork which turned out to be a blessing because that gave him a month head start for this waitlist game.
A month before Christmas we got the official diagnosis which confirmed my conclusion. What was shocking for us was his severity, he was diagnosed as moderate to severe autism. I expected Asperger so back to researching I went. I have to say the internet is a wealth of information and what on earth would I do without this tool? Although I knew he had autism, the diagnosis was still hard for me. I was literally on the brink of sleep deprivation, and the uncertainty ate me alive. The nights JB was up for 3-4 hours crying, I was up worrying and praying he will fall back asleep sooner.
Pulling him out of daycare was truly a good decision. I got to spent a month with him at home before starting the new preschool for kids with special needs. It was nice having all that time with him. His frustration and crying decreased quickly and his sleeping improved. He started the special preschool and behaviour therapy January of 2018. We were hesitant to put him into special needs preschool but it was one of the best decisions as within a few months he improved a lot. He is now able to assist with wearing his own clothes and shoes. His eye contact is much better and able to give us high fives.
Since the diagnosis, I've been trying to finding programs and resources we can access to help with anything whether it is something he can go to to learn a skill or funding we can apply for. It was so challenging and heartbreaking to find programs a few weeks past their deadline and have to remind myself to apply for the next round. Read my staying organized and tips section to see if you can find anything beneficial for you to use.
One of the reasons why I created this site is because I want to list all the resources out there so the next family who just got the diagnosis can get on the waitlist quicker and avoid missing the deadline for any applications.