A Difference of Parties

In the last month, the Little Man and I attended two parties - which is a pretty big deal since I don't usually go out much. While both were family-friendly and had children in attendance, they were very different.
I have nothing against these hosts or guests, they were just very different atmospheres for different reasons.

One party, with the exception of one other child, was all NTs (as far as I know). The children's ages ranged from 10 months or so to about 6 years. At first other kids interacted with him. They would ask him questions, but he did not respond quickly enough. By the time he answered the first one, they were already asking something else. He just couldn't keep up. They reacted by simply walking away. By the time he would go up to them to try to interact, he was ignored. Even I, just observing, was pretty shocked by how quickly it all happened. He had, quite literally, only one chance to get it right and didn't manage. He shrugged his shoulders and went to play on his own. Other kids took toys out of his hands or told him he wasn't allowed to touch certain things.

The other party was more autistic friendly. The host's son is autistic, so he understands and made it inviting. There was a chill out/quiet space. The son was in attendance, as was his (also autistic) friend. There were other younger children who may or may not have also been autistic.

The big difference here is that when my son went to talk to people, they waited patiently for him to express himself. If they didn't understand (which happens often because of his apraxia), they asked him to repeat and waited. They made sure they understood what he was trying to say and answered. He too, waited for them to respond. All the kids shared toys and took turns. My son did not end up shrugging his shoulders and walking off. He did try to bolt at one point, but that's when I knew it was time to get going!

The difference was like night and day.

So while both were just short trips to parties, it makes me wonder about inclusion and the bigger world out there. I know kids are kids, but I'm surprised at how few chances one gets to "get it right" socially. And it scares me for the Little Man. I don't want to see him shrugging and walking off, because that doesn't help anyone or teach anyone anything. He'll just not understand why he doesn't fit in and kids will just ostracize him because he doesn't act socially perfect. I know at some point he will find his tribe of understanding people, but it's tough in the meantime.

At the moment, he's protected by the bubble that is his autism school, but I can't keep him in a bubble forever. Anyway, he is still young and has much to learn. It will be ok for now and I have to hope for the best for the future. 

An Open Letter To My Son's School

For privacy reasons, I am not publishing the name of my son's school. However, this is a copy of the letter I sent to his school in response to their "Light It Up Blue" celebration.

The "Light It Up Blue" campaign was started by Autism Speaks - an organization that I unfortunately cannot support as an Autistic adult and self-advocate, as well as mother to an Autistic child. Autism Speaks says they are spreading "awareness" but uses fear-mongering and likens autism to a deadly illness that is "stealing children" and requiring a cure. They consider autism to be a disease and a "public health concern." (Ref: http://www.autismspeaks.ca/events/light-it-up-blue-and-world-autism-awareness-day/)

They do not listen to the voices of autistic people and do not have one autistic representative on their board or openly in their organization. 

As such, I cannot support their work and I cannot sit back quietly while they continue their reign of fear.

I will continue to fight for acceptance - acceptance for all people, regardless of ability, sex, creed or colour. I will continue to fight for acceptance of neurodiversity and the understanding that different is not wrong or less. In fact, if your autism celebrations are done with the intent to promote pride and acceptance of autism, I can only support that. But if they are based on the need for a "cure" for the "devastating curse of autism," as promoted by Autism Speaks, then I am distinctly against it.

I am writing because I want you to be aware of where this campaign stems from and how it can hurt autistic people. After all, we are not disappearing. Autistic children grow into autistic adults.

Because my son is too young to be involved in such politics, I will send him to school in blue so he can look like his friends and enjoy his day, but understand this puts me in an awkward position and is not an ideal situation.

SCHOOL has done an amazing job supporting my son in the short time he has attended. Please do not let the loudest voices, and in this case, the one with the most money, sway you down the wrong path. There are many great associations where autistics are coming together to speak, and hopefully one day we will be truly heard.

Thank you for your consideration.

School Update

We're more than halfway through the school year and I've been so busy blabbing on about myself, I never gave a school update about the Little Man!

Well, he's doing great in his first year of school. He is learning so much and working so hard. He has come a long way from hardly speaking to talking and talking (mostly about trains, but other stuff, too!). He still has his quiet moments, but he is really learning tons and trying.

He recently started sliding down slides on his bum! I got a note from the school from the proud OT. Previously, he went down on his belly, feet first. His dyspraxia makes him very unsure of his body and he gets scared to experiment. The plus side to this is I don't have a crazy dare-devil child trying to climb my roof or jump over cars, but it does mean he doesn't experience a wide variety of activities. He is working on that and learning to trust his body and predict what it can do. It's really nice to see him developing new skills.

He knows how to spell his name and can type it. Handwriting is not his favorite, but he is still really young. There is plenty of time for him to learn all this stuff.

The fact is, he has come a really long way since I first put him on the bus back in September. He happily took to the routine and the people there. They seem to understand him and support him very well. I have no complaints or fears. It's a great school and he will be attending next year. I feel very lucky that he got in.

In every day life, he sings a lot. When he doesn't know the words, he makes up his own. It's so cute! He sings about trains mostly and he can actually sing in tune, so it's really nice to hear him. It is the soundtrack of my home - him playing and singing - and I really couldn't be happier.

He likes to dance also, and he'll be old enough for classes next year, so we might try that.

Otherwise, we just need to figure out what we're doing for March Break, but the transition to school life has gone really well. 

First Day of School!

My Little Man went to his first day of preschool today! He didn't cry and he ate his lunch without complaints. Or at least that's what his teacher wrote in his communication book.

He was happy, even though the bus was very delayed on the way home. Apparently another child had a melt down, so the bus did not leave on time. The Little Man got home a whole hour late. I guess that sort of thing is to be expected. It just makes for a long day for him.

He got off the bus and told Hubby the other kids should not be screaming on the bus. The bus driver said he was the only one who listened and was a very polite little boy.

Regardless, we're getting the afternoon bus changed - he is too small to be in those big seats without a seat belt. Imagine if there were an accident! In the morning he goes in a van with a booster, so we're trying to get him switched for the afternoon transport. It will be quieter for him that way also.

Otherwise, he's been a trooper (as always!) and is excited to go back. He even has homework to complete already! Geez! 

School: Give Me A Clue

I really don't want to complain, but this is not good and I can't be the only one having issues. I am really happy the Little Man got into the school he did this year. It's a school specifically for Autistics, with a group of specialists who will "get him," I hope. He will get his speech and OT all under one roof and get to play with new friends.

This is great, for sure.

But it's hell for me.

School starts right after Labour Day, but I still don't know what time the bus is going to pick him up or drop him off. I work full time. My husband works full time. We sort of need to plan our schedules because someone needs to see him off and someone needs to be there when he gets home! I would really appreciate a bit more notice. This is the first time I'm sending a kid to school. It's not like a have a clue. I need to know the bus will pick him up, giving me enough time to get myself to work. Even Hubby will have to change his work hours to be home on time for him. I can't imagine what single parents go through!

This also isn't the first time I'm complaining about planning issues with the school and we haven't even had a first day yet!

Today, (yes, just today!) the school emails to tell me there is a possibility of before and after school care, but again, no details. What are the hours? What is the cost? How am I supposed to plan?

We have a parent-teacher meeting tomorrow (thank goodness for that if it actually provides information!) and the hour of that was also changed just this week.

Shouldn't they have enough experience working with Autistics to know that we need/crave schedules/routine? Did they forget that most parents work and can't just change things at the drop of a hat?

It's just an extra level of stress.

To add to it, Hubby is pretty sick today. He was up most of the night throwing up and we don't know why. Maybe it's the stress of the unknown. It doesn't help!

Off to School Already?

We get a call from the school board this morning, asking if we can bring the Little Man in for his assessment on Monday morning. Oh, thanks for the notice!

Basically the school board has to assess his file and write a referral in order for us to send him to a special private school specifically for autistic kids. So if they decide his needs can be met with a regular school, we can't send him there. Then the school itself will assess him and decide if they'll take him. If they don't, I have no clue what they do at that point. The referral has to be done by March 1st. Again, no one gave us any notice.

Anyway, we managed to schedule another day and Hubby will take him, because it's impossible for me to get time off with such short notice. Actually, it could be done, but I don't want to do things that way.

It's interesting how life goes. Had he been neurotypical, my intention was to keep him out of school until at least 5 since his birthdate makes him the youngest in the class. However, this autism school takes kids at age 4 and really, $5000 a year for daycare, speech therapy, OT and psych is a freakin' steal. I figure work with him til age 6, get him reassessed and we'll take it from there.

And then there's the thought of holy crap, my baby will be going to school in the fall if this works out! How did that happen? Wild.