On a personal note

My daughter is 12 in April. When I started this website, she was only five (here's a video of her, just a year after launch explaining my logo and masthead at the time). Many of you have stuck around to watch her grow up either through our Facebook friendship or through the occasional post here. For those who don't know, my daughter has Austism Spectrum Disorder and is very high functioning. So high functioning that when people meet her for the first time, many comment how "normal" she seems. No doubt, she's pretty well adjusted, but she has demons she fights. And now that she's older, she's getting better at expressing to her dad and I how these demons affect her.

She has difficulty explaining the sensory experience to us. On Friday night, she dropped a bomb on us by blurting out at dinner that music class makes her want to scream because it's too much. All of it - the drums, the clarinets, the horns, the piano. With tears threatening, she told us she can't take much more and asked if we could call the school and tell them she wanted out. I was surprised. She's always gotten As in music. She plays a mean recorder (the Friendly Giant would be proud). Music class has been part of her schooling since grade one. This means that for the past five years, she's been dealing with how it affects her but couldn't tell us, or her teachers. How awful, right?

Not wanting to lose momentum since she was willing to share, her dad and I asked her to tell us what else she finds difficult, whether it's auditory or physical. In no particular order she listed:

construction paper
corrugated cardboard
white glue
braided rope
tissue paper
the sound shoes make when the floor is wet
warning chimes (like on a car)
fire alarms (I think this is 99% of the planet, really)
crowds
babies crying (probably not unique to her autism)
people screaming (like at a waterpark)

She said sometimes it's so bad, she feels like she's going to vomit, if the sound or texture is too much.

I'm not one of those bloggers who uses my readership to openly bare my soul and solicit opinions about my personal life. Over the years, I've written about my health struggles (still ongoing, but improving) and my immediate family. Despite some serious and epic trolling, generally the readership is very supportive, which is why I am reaching out today. You don't have to comment, if you think you can help, you can shoot me an email (cj@thiscrazytrain.com) if you know anything about autism sensory issues, either because you have them yourself, or you've supported others with sensory issues and have some knowledge you can share.

We've reached out to her developmental pediatrician (I left a voicemail this morning), who officially diagnosed her at six years old, and are hoping for an appointment, but her waiting list is extensive, sometimes up to a year out for a booking.

I don't rely on Google for diagnosis since there's so much misinformation. I will also be engaging the school.

One thing she has asked us for is an autism swing claiming she feels this will help her decompress after school (which tells me she's been researching her autism). Even that is difficult to Google since there are many products proclaiming to be a sensory aid. It's all so overwhelming.

My goal is to teach her to cope since the real world isn't always going to be accommodating and easy. But I need someone to tell me how to do this. I don't have autism. I don't know where to start.