[FEAT BC Admin]

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[Stacey Parson]

Oops. I forgot my email address:

jsparson(at)telus(dot)net

Thank you!!

[Louise Taylor]

Call for Parent Representative Nominations
PAFC Steering Committee

The Pacific Autism Family Centre is seeking nominations for 2 or 3 parent representatives to sit on the Steering Committee for the PAFC project. The purpose of this committee is to ensure that the vision of the project is being maintained through the planning and design process. It will also address the long-term governance for the operations of the centre.

To submit a nomination, email Dana Hough at info@pacificautismfamily.com. (Nominations close on October 12, 2010).

Please visit the following site for information about the PAFC:

http://www.pacificautismfamily.com

[Barbara Rodrigues]

Hi Stacey:

Yes, what Claire said – how upsetting for you. Was/is there a tv on that room – maybe something flashed or scared him on that? My son has never had those 'terror' attacks but I know kids that have – it's very hard trying to figure out the trigger and with your little guy being just that so little it must be so hard for him and you. My son would cry hysterically over 'twinkle twinkle little star' and that was when he was 4 -to this day if he's upset – he will point to a star and cry. I hope you can figure out what happened or a least how to desensitize him from his fear. If you knew what his fear was then you could try that but he's soooo young…..I am not sure how they do that….I am not sure how old your other boys are – is there some way someone could ask them point by point what little J was doing -what they were doing – etc? I am sure you tried all that though. My thoughts are with you – hopefully you can get some help with this soon. Just another part of autism that brings so much pain for us as parents that our babies can't tell us what's wrong/what happened/what's scarey/what hurts…..

Barbara

[Claire Spencer]

How upsetting for you! It can be so difficult to figure out what has happened when the language isn't there. I had something similar (but at least it wasn't in our home) when my now 13-year-old son was about the same age. There was a song that for some reason terrified him (Do Your Ears Hang Low). It was on one of our children's music tapes in our vehicle and when the song came on he screamed so violently that I pulled over and turned off the car (and the music stopped). Once he was calm and I started the car, the song came back on and he got upset again. That was the ONLY way I was able to figure out what the trigger was. The song came on in diaper gym (in the local community centre)one day and caused a similar response. We had to leave right away. I was unable to even drive into the parking lot of the community centre without his getting upset for months (awkward considering that was where his swimming lessons were, too). I hope you are able to find out what has scared your son, and know that others like me are thinking of you and hoping that you find an answer quickly.

[Nancy Walton]

Hi Stacey. Give us your e-mail please. I'll be in touch soon.

Nancy Walton

[Stacey Parson]

Please help me! My 3 year old son (little J) has classic autism. He has some language but cannot always express himself clearly. When my husband and I were at work last Monday something happened and our son won't go into our living room or kitchen anymore. His ABA team was having their weekly meeting in his bedroom and he was playing in the living room with his brothers. My mother-in-law was in the kitchen and has no idea what may have happened. His brothers can't explain it either. Little J just started screaming and ran into his bedroom. He is now perfectly happy to be in his room with the door closed (sometimes open but I have to remind him to leave it that way) but when we ask him to come out he closes his eyes and tips the top of his head toward the rooms (to shield his face). I don't know what to do! It's been a week and he still closes his eyes and clings to us whenever we take him out. Little J is fine going into the bathrooms, the other bedrooms, the basement or leaving the house (in fact as soon as he hits the stairs he returns to normal) but if we enter the living room he screams, clings to us and his heart rate increases. What should we do???

[Barbara Rodrigues]

Well said Jean – both articles are very well written. Thank you Dione for taking the time! I also fear funding is on the outs – for us we are old timers and will be out of this system soon and the younger kids are going to be left as our kids were – with nothing and no protection for without laws made to make people/governments/schools accountable.

Barbara Rodrigues

I am only one; but still I am one. I cannot do everything, but still I can do something. I will not refuse to do the something I can do.
— Helen Keller

[Mike & Jean]

There are two excellent newspaper articles in today's, Vancouver Province and Victoria's Times Columnist that I recommend everyone read.

The Times Columnist, "Why care about therapy for kids with autism"? written by Chris MacIntosh. He very accurately lists some of the most important and obvious reasons for treatment funding.

The Province, "There's not enough funding for autism treatment" written by our very own Dione Costanzo. This well written and concise essay begins by identifying the biggest problem for people with autism and their families in Canada today…"autism treatment is not covered under Medicare". She goes on to outline how the government's limited funding, (which exists because of the Auton litigation) can be removed with "the stroke of a pen". Well said and how true, Dione! I encourage you to read both articles because they accurately define the most fundamental obstacle to our children's well-being and basic human right – access to healthcare.

Like every other Canadian, our children should have a right to access all the equality provisions including health care, as prescribed in our Charter. Litigation and focused, purposeful, political advocacy have been successful in securing limited funding in BC. However, as Dione accurately points out – it is not protected and is already being eroded by the "invoice payment plan" which many of us "old-timers" warned and railed against when it was devised one year ago. I, along with others predicted the outcome we see today…and…sadly folks, I fear there's more "erosion" on the way. So – Parents, what's the solution? Purposeful and focused political action or more plainly – get active! First and foremost, our children's treatment must be enshrined and protected from the whims of bureaucrats/politicians. It needs to be universally accessible and covered under Medicare. Secondly, we need law/legislation which protects our children's basic human rights, similar to the ADA (Americans with Disabilites Act) in the US. How do we achieve these things? By getting informed and getting active! "Medicare for Autism Now! exists for the sole purpose of securing what the name states. The Civil Rights Now! Society, formerly know as the Paladin Advocacy League was created very recently to advocate for ADA-type law in BC. If you want to take action, rather than wait for the bureaucrats to decide your child is no longer worthy of treatment, education etc., I encourage you to get involved. In BC, parents have won some strategic battles to end the discrimination against our children but, there are more battles for us to win before we are victorius in the war our own government is waging against our children.

[Nancy Walton]

Calling all Therapists or Behaviour Interventionists and SEA/Support Workers.

Parents, please pass this on:

The ABA Support Network would like to encourage therapists to become members of our organization, so they can receive specific e-mails about presentations, conferences and current issues in BC.

Membership is free. Go to http://www.abasupportnetwork.com. We will often have e-mails that will go to therapist members only. This is a great way to be involved in your community and in your future.

For example, Deb Antifaev recently asked for feedback from therapists on problems with the Invoice system through Autism Funding. In the future, we would like to e-mail therapists directly about getting such feedback.

Don't let your therapists miss out. Pass this message on to them today.

[Andrea Finch]

** Calling all parents of school-aged children ** – really – don't be shy….

Hi everyone – your silence has been deafening! Please take a minute to consider responding to this post if it applies to you.

As many of you know, the North Shore parent support group presents a yearly talk for parents about navigating the school system. Many of you have probably heard this information either through North Van. or another parent support group.

As one of the parents who has helped coordinate that presentation in the past, I'm wondering if anyone out there (a) has had direct experience with the s. 11 process and (b) is prepared to share those experiences. I think it would be helpful for parents in different districts to know what strategies work best where they live. If you have confidentiality concerns we would certainly respect that too, though obviously one goal is to tailor the presentation, while another is to be able to share stories as much as possible if parents are willing.

If you feel you have a story to share that would help other parents, please contact me privately at andreafinch@shaw.ca. Thanks in advance for paying it forward to all of us who are getting ready for "Back to School" season.

Cheers,
Andrea Finch

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