As a mother, I will never give up on my child. As a mother of a child who has autism, I will never give up hope.
I look into his eyes and I see all the potential that he has to offer to this beautiful world and I just know that one day the world can see what I see.

Follow my blog as I share my life and my experiences as a person who loves someone with autism.

Showing posts with label rant. Show all posts
Showing posts with label rant. Show all posts

Monday, April 20, 2015

I’m done with support groups: Me, Myself, and Bryce

I warn you that this is a pretty lengthy post. I applaud you if you read it from top to bottom.

An article entitled, “Special needs kids forced to leave public school system advocates say” was shared in a local autism spectrum disorder moms support group I was in. It addressed concerns for parents in the province I live in.

An advocacy group is calling on the British Columbia government to address gaps in the public school system after an online survey revealed more than half of polled parents have removed their special needs children from school because their needs aren’t being met.

...The group polled 236 of its members...

About 51 percent of those polled said they had removed their children. Thirty-one per cent of those that had removed their children said they were forced to do so, while 18 per cent said they did it by choice.

Like most online groups, especially ones where you have been a member of for over a year and should feel safe and everyone respects each others opinions, I thought I’d share my story. How I have had a great experience in the school system so far for my son. Here’s the comment I left to that article posted (a little of the wording is changed for a more clean read on a blog post, but I assure you, the point remains the same):

My son has been in three schools between two cities: Elementary school for grade Grade kindergarten to grade 5, another elementary school for grade 6 and 7, middle school for grade 8, and come next year another new school for high school for grade 9 to grade 12.

Every year we have had an amazing support staff, incredible teachers, great communication, and never have had a problem. We make staff cry at the end of the year as we say goodbye. They are like family to me and I love each and everyone of them.

It saddens me when I see parents posting on social media groups that they have to homeschool their kids because they left the school system, the teacher called and so-and-so needs to go home for reasons that imply the teacher or support staff can’t handle it, or bullying, etc. I don’t know if it’s the school districts, schools, area, lack of parent involvement or communication, or their child isn’t adjusting to a school setting, but it seems to be a combination of things and not just the school to blame.

Nobody is “forced” to leave the school system. You chose to leave the school system.

And honestly I don’t understand how a poll of 200ish people are the voice for every parent who has a child with special needs. It mentions in the article that parents removed their child from the school because their needs weren’t being met. Why weren’t your child's needs being met? Did your Individual Education Plan (IEP) have unrealistic goals? Does your Education Assistant (EA) or supportive staff not communicate with you or you to them? It breaks my heart if someone felt compelled to leave a school for whatever reason but regardless of the circumstances I would fight for my sons education and rights to an education until I was blue in the face, and even then, I’d keep fighting.

I realize that everyone has different circumstances, situations, reasons, whatever you would like to call it, for leaving the public school system but I don’t understand how one is “forced” to.

If you’re not on the same page with your child’s support staff, fight until you were not only on the same page but they memorized it word for word and then recited it back to you.

This is no disrespect to anyone who leaves the school system or feels “forced” out but it’s almost like giving up on your child’s rights to an education. You have to fight because nobody else will. Change schools if you have to but never give up. It’s your choice to do what you feel is best for your child but never, ever give up.

I apologize if I have offended anyone. I’m biased because I have had a great experience with the school system.

Boy was leaving that comment a big mistake! Forget feeling safe and respecting each others opinions. It was their opinion or no opinion at all. Monopolizing how you are to think and no room for disagreements.

I was removed from the group being told in a private message from one of the admins that “we have been notified about some of your posts that don’t really fit with what the etiquette in the ASD group and just wanted to give you a heads up as I will be removing you from the group”.

“Etiquette”?? I had an opinion that was different than yours, and I’m being punished for it? Because you can’t handle someone else’s opinion?

I simply replied, “Whatever.”

And then I got angry, which, I’m sure most people in these types of situations do:

...It is very sad to be removed from a group because an opinion differs. If we all had the same opinion, we wouldn’t need a support group. Good luck.

I was disappointed.

I don’t have any close family or support outside of the school, and to be in a group with other local moms who are all on the same boat as me, who ‘get’ me, meant a lot to me. It meant a lot to me for my son. I was even looking forward to a meetup that was being planned at a local park, but that’s clearly off the table.

Being in a group that is supposed to be about supporting each other, listening to each other, respecting each other, and I’m removed from the group because you don’t want to support me, you don’t want to listen, and you don’t want to respect me? “Whatever!!”

It does suck. I’m not going to lie. But to know that those were the type of women in the group, attacking me over my opinion differing their own, well, I don’t want to be a part of a group like that anyways.

Shortly after I was removed I received several private messages from members who either were agreeing with me or sharing that the school system hasn’t failed them.

Sadktm something I have noticed over the year that I’ve been in groups. You stand alone when you post something online until you have people agreeing with you. If you have people agreeing with you you will get all kinds of support. If anyone disagrees with you nobody who agrees with you will say anything in fear that they too will be attacked.

I ended up saving the entire conversation that took place. Me defending my opinion, then being attacked for it, people disagreeing with me, words being put into my mouth when they are clearly typed for all to see, you know, the whole typical crap you would expect whenever opinions differ.

I was debating if I should add some of the things people said, some of my responses to this post, but I honestly just don’t care anymore.

I’m done with support groups.

From now on it’s just me, myself, and Bryce.

Thanks for reading,
Tanaya

Tuesday, April 7, 2015

Starbucks, Make This Right. (UPDATED)

April 2nd is World Autism Awareness Day.

It is a day recognized worldwide with the ‘Light It Up Blue’ campaign by Autism Speaks, where thousands of iconic landmarks, businesses, communities, schools, and homes unite by shining bright blue lights in honor of the millions of individuals and families across the globe that are affected by autism.

So on April 2nd, 2015, a Starbucks partner (employee) in Squamish, British Columbia, Canada, whose child was recently diagnosed with autism, wanted to show her support and celebrate World Autism Awareness Day at her workplace. She decorated the store with blue balloons and blue pompoms to help bring autism awareness to their customers and their community.

Starbucks

Later that day, their location had visitors from Starbucks Canada head office. After the visit, she received a phone call from the District Manager informing her that the Regional Director Operations told her to take down the decorations:

It looks tacky. It wasn’t done properly. Take it down.

Her response:

The blue was for World Autism Awareness Day’s Autism Speaks ‘Light It Up Blue’ campaign and our store wanted to show support for myself and my son who was recently diagnosed with autism, as well as show our support for our community.

District Managers response:

You’re not listening.

Her response:

No. I heard you. I’ll take it down.

How could someone, let alone someone from a company that is “all about community” and “being good neighbors” have the nerve to say that autism awareness is tacky!?

The definition of tacky is ‘showing poor taste and quality.’

Here’s a picture of the decorations she put up. Does this look like ‘showing poor taste and quality’ to you?

I am sorry that the blue balloons and blue pompoms didn’t match your d├ęcor, Starbucks, but this was about bringing awareness to autism in your community, in your neighbourhood. Isn’t that what you’re company claims to be all about?

Every store is part of a community, and we take our responsibility to be good neighbors seriously. We want to be invited in wherever we do business. We can be a force for positive action – bringing together our partners, customers, and the community to contribute every day. Now we see that our responsibility – and our potential for good – is even larger. The world is looking to Starbucks to set the new standard, yet again. We will lead.
- excerpt from Starbucks Canada’s Mission Statement

And to say that “it wasn’t done properly”? The reason we ‘Light It Up Blue’ is because it starts the discussion about autism.

The customers have been asking questions [about the blue decorations] and we have been getting great feedback!
- a Starbucks partner (employee)

Well guess what, Starbucks? I guess it was done properly and successfully because the blue decorations did get your customers talking about autism.

Are the blue balloons for autism? This is great! I’ve been teaching children with autism for 12 years.
- Starbucks customer

Why the blue balloons? World Autism Awareness Day? This is wonderful! More people need to know about this!
- Starbucks customer

As a mother who loves someone with autism and as an autism advocate, I was completely disgusted and furious when I heard this from my sister who lives in Squamish.

I wanted to meet this mom and show my support. So I contacted her and she agreed to meet and share her story. I wanted her to know that she wasn’t alone, that this was wrong, and something had to be done. This is exactly why autism awareness is needed.

I really believe that Starbucks owes an apology to all the families, in Squamish, their community, living with autism, to all of the families, in the World, their neighbourhood, living with autism, and especially to their partner (employee) and her child with autism, who spent the remainder of her day at work in silence and sadness because they took away the one day that we get to shine a bright light on autism.

Autism awareness is not “tacky.”

Starbucks, make this right.

Thanks for reading,
Tanaya

Edit: I’d like to add that this store often participates in local and world wide events, fundraisers, and awareness causes, and the partners (employees) have the flexibility to support and decorate the store to promote such campaigns so this wasn’t about permission.

UPDATE (April 23rd, 2015): The District Manager of this location left a comment at the bottom of this blog post denying everything:

Starbucks response to 'Starbucks, Make This Right.'

Wanting to hear his side of the story, and get some questions answered, I took him up on his offer. I sent him an email that same day and posted it as a reply in the comments below as well:

Bubbles Make Him Smile response to Starbucks, Make This Right

When I didn’t hear from him after a couple of days, I sent a follow up email from a different e-mail address incase my original e-mail went to his junk folder. I received an auto-reply response that he was out of the office until X day. So after that day, I followed up again, and got another auto-reply response that he was out of the office until X day again.

As of this update, I have not received a response from him.

UPDATE (April 23rd, 2015): The store is hosting an autism awareness event Friday, April 24th, 2015 from 2pm to 5pm in honour of Autism Awareness month. I’m not sure of all the particulars because they haven’t publicized it very well (no offense), but from my understanding there’s going to a representative from Autism Society of British Columbia to answer any questions people may have and provide information about autism to the community as well as some children’s activities and face painting.

I hope this is Starbucks making this right.

UPDATE (April 24th, 2015): Thank you, Starbucks, for hosting this event and bringing your community together in support of autism awareness!!!!!

I want you to know that it is absolutely beautiful that you were willing to TEACH your community about autism awareness, acceptance, and understanding. How much you LOVE and support your community enough to do this for them and hopefully INSPIRE many more autism awareness events throughout your community. And I personally HOPE this is something you will continue every year.

Tuesday, July 16, 2013

Pee is for Problem.

Bryce started peeing his pants.

We’re not talking ‘accidents’. We’re talking flat out, doesn’t want to do what he’s told, didn’t get his way, engaged in something and doesn’t want to stop to use the bathroom, going through a half a dozen pairs of underwear a day, full blown peeing his pants on demand incidences.

I have no idea why he is peeing his pants but it only happens at home when we tell him something that he doesn’t want to do.

We tell him it’s bed time and he’d pee his pants.

We tell him he has to stop doing something and he’d pee his pants.

We tell him it’s time to go somewhere and he’d pee his pants.

We have resorted to taking him to the bathroom before we tell him anything so he can’t pee his pants.

My first thought was that he was doing it for attention but we give him so much attention that it just couldn’t possibly be that. Then I thought about it more. Maybe it was for the attention. Like a game.

The first time it happened he was getting into bed and I noticed his underwear was wet and I said, “Bryce! Did you go pee-pee?” and he said, “No, pee-pee pants bad. Stay dry.” I said, “Take it off and get new underwear.” He’d take it off and go get another pair and repeat, “Take off, get new underwear.”

The next time it happened he was getting ready for bed and I noticed but before I could say anything he said something like, “Sorry. No pee pee. Stay dry. Take off, get new underwear.”

It was almost scripted.

I have no idea how to make it stop other than trying to prevent it. Any thoughts?

Thanks for reading,
Tanaya

Tuesday, June 18, 2013

Dictionary changes definition of autism

May I have your attention please... Because of YOU, WE have made a difference. (At least I hope it ends up making a difference.) Bare with me, this is going to be a long post, but I think it’s worth the read.

A little back story.

In another post I mentioned how I typed “autism” in my iPhone’s Notes App and hit the ‘define’ button (it’s one of the options that pops up when you highlight a word) and the definition was a little, distasteful, to say the least?

Oxford Dictionary definition of autism

“A mental condition, present from early childhood, characterized by great difficulty in communicating and forming relationships with other people and in using language and abstract concepts. A mental condition in which fantasy dominates over reality, as a symptom of schizophrenia and other disorders.”

So I called Apple who told me that their Notes App dictionary definition comes from Oxford Dictionary - ‘The worlds most trusted dictionary’. The Apple representative gave me the number for Oxford Dictionary and then I called them and explained my concerns. They gave me their email address to put my concern in writing. So I did.

Then the Oxford Dictionary representative replied:

“The way that the word autism is used has undergone changes through the years as medical understanding of the disease has increased. The definition you raised concerns about is not a comment on the main, modern sense of autism, but a less important, secondary meaning of the word. It represents an earlier understanding of the term, which regarded autism as a symptom of various psychological disorders, rather than as a distinct condition in itself.”

Isn’t saying it’s a ‘less important, secondary meaning of the word’, just another way of saying that it’s an outdated definition of the word?

Then I replied:

“It should be removed as it is NOT a definition of autism, even if it was at some point. Continuing to propagate ignorance and confusion on the condition doesn’t seem like what a dictionary should do when it should try to provide knowledge and understanding.”

This is a dictionary, not an encyclopedia or Wikipedia. Just give us the definition, not the history behind the word, or ‘less important, secondary meanings’. A definition in a dictionary should be the most up to date and spot on way to define a word.

Ok, end of back story.

So a couple days passed and I hadn’t heard back from anyone at Oxford Dictionary. I just assumed they brushed me under the table in hopes that I’d let it go. But I wouldn’t. This bothered me a lot. I kept sharing it on Facebook and Twitter and getting as many people as I could involved. I think it worked...

Oxford Dictionary replied:

Dear Tanaya Dutchyn,

Thank you for your continued feedback on the entry for autism in Oxford Dictionaries. We’ve investigated the entry and we agree that a change is needed to the entry to make it clearer.

We are working to revise it so that the historical use of the word is given the proper context, and is clearly distinguished from the usual contemporary definition. We are also taking specialist medical advice on how use of the word has evolved over time. The revised version of the entry will appear as soon as our editorial processes allow.

We are extremely grateful to you for bringing this matter to our attention. We welcome and appreciate feedback on our dictionaries, and our entry will be improved as a result of your comments.

Kind regards,
The Oxford Dictionaries Team

Oxford University Press (UK) Disclaimer

This message is confidential. You should not copy it or disclose its contents to anyone. You may use and apply the information for the intended purpose only. OUP does not accept legal responsibility for the contents of this message. Any views or opinions presented are those of the author only and not of OUP. If this email has come to you in error, please delete it, along with any attachments. Please note that OUP may intercept incoming and outgoing email communications.

Are you smiling? I’m smiling. Thank you Oxford Dictionaries Team!

In my opinion, they just need to remove the second part of the definition so I don’t know what this ‘change is needed to the entry to make it clearer’ is all about. But it’s a start and it’s thanks to you!

I’d like to thank everyone who helped me get Oxford Dictionary to change their definition of autism. You have no idea how thrilled I am right now! I just hope Oxford Dictionaries gets it right this time so we don’t have to send them anymore emails on this subject! But seriously, Oxford Dictionaries, thank you for listening.

Thank you again everyone! Really, sincerely, thank you!

I’ll keep you posted with any updates!

Thanks for reading,
Tanaya

Thursday, June 13, 2013

The Worst Definition of Autism

In my previous blog post I mentioned how I typed “autism” in my iPhone’s Notes App and hit the ‘define’ button (it’s one of the options that pops up when you highlight a word). This is what the app defines as autism. It turns out it comes from ‘Oxford Dictionary: The world’s most trusted dictionaries.’

Oxford Dictionary definition of autism

“A mental condition, present from early childhood, characterized by great difficulty in communicating and forming relationships with other people and in using language and abstract concepts. A mental condition in which fantasy dominates over reality, as a symptom of schizophrenia and other disorders.”

I sent an email to Oxford Dictionary voicing my concerns with the second part of their definition and asking that it be removed. A representative from Oxford Dictionary wrote back:

Dear Tanaya Dutchyn,

Thank you for sharing your concerns about the definition of autism in Oxford Dictionaries. The way that the word autism is used has undergone changes through the years as medical understanding of the disease has increased. The definition you raised concerns about is not a comment on the main, modern sense of autism, but a less important, secondary meaning of the word. It represents an earlier understanding of the term, which regarded autism as a symptom of various psychological disorders, rather than as a distinct condition in itself.

We regret if this was unclear in the entry as presented. We always welcome feedback about material in Oxford Dictionaries, and will take your concerns into account as part of our ongoing revision process.

best wishes,
Simon Thomas
Oxford Dictionaries

Oxford University Press (UK) Disclaimer

This message is confidential. You should not copy it or disclose its contents to anyone. You may use and apply the information for the intended purpose only. OUP does not accept legal responsibility for the contents of this message. Any views or opinions presented are those of the author only and not of OUP. If this email has come to you in error, please delete it, along with any attachments. Please note that OUP may intercept incoming and outgoing email communications.

I responded:

Dear Simon,

It should be removed as it is NOT a definition of autism, even if it was at some point. Continuing to propagate ignorance and confusion on the condition doesn’t seem like what a dictionary should do when it should try to provide knowledge and understanding.

Best wishes,
Tanaya Dutchyn

I am not giving up on this. This is the worst definition of autism I have ever seen.

If their definition of autism bothers you too, please send an email to oxfordonline@oup.com voicing your concern and it’ll be sent to the editorial department for review. Please help me get the definition of autism changed!

Thanks for reading,
Tanaya

Update: Oxford Dictionary changes definition of autism!

Wednesday, June 12, 2013

Fantasy dominates over reality.

So I typed “autism” in my iPhone’s Notes App and hit the ‘define’ button (it’s one of the options that pops up when you highlight a word). This is what the app defines as autism.

Oxford Dictionary definition of autism

The beginning of the definition is spot on.

“A mental condition, present from early childhood, characterized by difficulty in communicating and forming relationships with other people and in using language and abstract concepts.”

Then it continues to read.

“A mental condition in which fantasy dominates over reality, as a symptom of schizophrenia and other disorders.”

I’m sorry, what?! ‘...fantasy dominates over reality...?!’ ‘Schizophrenia??!’ ... Really?

So I shared the picture with our Facebook friends, and I wasn’t the only one who thought it was a little, umm, distasteful, to say the least.

I then decided to find out which dictionary the Notes App used for defining words. I called up Apple and spoke with a man named Shawn who was very helpful and understanding. No one ever asked him which dictionary was used for the Notes App before, so he had to do some digging but soon discovered it was from Oxford Dictionary. ‘Oxford Dictionary: The world’s most trusted dictionaries.’ Mhmm. Shawn was kind enough to give me the phone number for Oxford Dictionary. Thanks, Shawn!

So then I called Oxford Dictionary and spoke with a woman named Tavie who was also very helpful and understanding. She agreed that it wasn’t right and gave me an email address to Oxford Dictionary and assured me that my message would be forwarded off to the editorial team.

I immediately sent them an email:

“No two children with autism are alike. There are many, many different definitions of autism, and every single one of them have their own personal reasons behind them, but it is very safe to say that autism is NOT ‘a mental condition in which fantasy dominates over reality, as a symptom of schizophrenia and other disorders.’ I am writing to you to please remove this portion from your dictionary definition of autism as it definitely is not the definition of autism.”

If their definition of autism bothers you too, please send an email to oxfordonline@oup.com voicing your concern and it’ll be sent to the editorial department for review. Please help me get the definition of autism changed!

Maybe they will listen to us. I hope that something gets done.

Thank you,
Tanaya

Update: An Oxford Dictionary representative replied: The Worst Definition of Autism