Autism Awareness Month: An Interview with Julie Buick

During Autism Awareness Month I have invited some of my friends who know autism far better than I do to post on my blog. The following is an interview with my friend and fellow Partners in Policymaking graduate, Julie Buick. Julie graciously spent a couple of hours this week regaling me with stories about herself, her family, her thoughts on Autism and the importance of community.

Tell us about yourself and your family:

I'm a mom. A wife, a mom and an advocate. I have 3 children: a 13 year old daughter, and 2 sons who are 9 and nearly 6 years old.

And we can't forget my husband, Bill. He's my rock! We have been together for 19 years!

My 2 boys both have Fragile X and Autism. Though they have the same diagnosis, they are completely different. One of them has issues with OCD, stimming, sensory processing disorder and lots of allergies--the other has different symptoms and needs.

Autism is the fastest growing developmental disability with--as yet--no known cause or cure. It affects 1 in 150 children. A new case is diagnosed every 20 minutes. This year there will be more children diagnosed with autism than AIDS, diabetes and cancer combined.

What do you want folks to know about?

I think the most important thing is the community and belonging. We want a community that will accept and welcome our boys and treat them like we do. We aren't going to be around forever--the community needs to be ready.

We work toward inclusion for both of our boys. They go to different schools and they are progressing toward inclusion. Last year my older son was in a situation where his classroom was "in" a school, but not part of it at all. This year is different. This year his classroom "belongs" to the school--kids say "hi" and spend time with him. He is so much more excited to be there--he walks taller. His team and their faith in him make all the difference.

I do a lot to help get the community ready--for my kids, and for all kids with all disabilities. I give talks to teachers and schools and at local colleges about disability awareness and autism. I talk about individualizing, having a can-do attitude. If I can just educate people I can take the fear out of the unknown.

I tell them that for us autism is just a label for services. We don't deal with autism at home. We just accept our kids for who they are.

I think accepting them is key. People always ask me how I cope and I tell them I don't. It's not "coping" if you accept your children. We definitely do different things for our kids than we would if they didn't have autism but it's because 'Bobby needs this' or 'Billy likes that,' or ' Katherine wants something else.' Every parent and every child wants or needs different things in any family. That isn't "coping," it's parenting!

I don't have trouble with "coping." I do have trouble finding enough time to do all the things I want to, but everyone says that!

What is the role of advocacy?

Advocacy is crucial--and it isn't a coping skill either! Advocacy is not a choice--it is the way you get everything, change everything, and make things work.

All parents advocate for their kids at some point. It's just what you do,

I know you always have lots going on--what are you working on lately?

You have to understand that I do take on a lot because I CAN. Not everyone can or wants to do all this depending on their life and their child, what's going on at home, etc.

I have great support at home--my husband enjoys being at home with the kids and supports my efforts.

I worked overnights for years so I would be home during the days for meetings and such. I still work for the same agency, but now I work at the Pieters Family Life Center which is a community center (totally inclusive!) In my job I get to run SibShops, a Spectrum Family Support Group and more.

Outside of work, I am:
• a presenter with The Advocacy Center providing disAbility awareness presentations in our community through the speakers bureau,
• Vice President of Operations for UNYFEAT (Upstate New York for Effective Autism Treatment which is the largest not-for-profit-501(c)3 in the Rochester area) Right now we are working to bring the nationally known organization Lose the Training Wheels to Rochester for a clinic this summer.
• Autism Speaks Chapter Advocacy Chair for Upstate NY region is yet another hat that I wear and a very important one. My Autism Speaks hat is the one which helps get much needed money for research.
• Training for a 10k run!

Autism costs our nation 90 billion a year and that is expected to double within the next decade. Our communities and our nation cannot afford NOT to know about Autism.

We need to raise awareness, find answers through research and provide appropriate educational services to teach life skills so that our kids become productive, healthy, happy adults, working, playing and living in our communities.

Now is the time to make a difference!

Any closing words?

I love this quote:

Never doubt that a small, group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has. - Margaret Mead

F

I have to leave you in suspense about what the F might stand for… I am sure you’re wondering. At least I hope you are…

My youngest daughter is in the 7th grade this year. She has spent her entire school career in our district at the same schools that all of the kids in our neighborhood attend. Depending on a bunch of variables her services have looked different ways in different years, but she has always had some level of inclusive education (with supports!)

Last year there were several folks who had misgivings about her programming, but when the rubber met the road amazing things happened.

Like every other 6th grader, in Social Studies last year my daughter learned about Ancient Rome and Julius Caesar, Ancient Greece and the pyramids and the Age of Chivalry along with her peers. Her teachers and her paraprofessional were excellent about finding and crafting materials so that the information was accessible and the background knowledge has been great for her.

(A while ago my son was watching something on TV that showed the pyramids, Jenn pointed out the pyramids and told us, “That is in ancient Greece—there’s a dead guy in it, they miss him.” Without background knowledge that show and so much more would be just another discrete event that drops into her life without context… but I digress…)

When they studied The Age of Chivalry the kids were divided into teams of three to build their own society—one to make the castle, one to write the Code of Chivalry and one to make the coat of arms. My daughter was on a team with two boys from her class and she was assigned to making the coat of arms.

Just like all of the other kids who had to build coats of arms my daughter had to pick pictures out to use, use the computer to look up the symbolism of those pictures and get agreement from the team on the choices she made. Then the team had to choose a phrase from their Code of Chivalry to be their motto. Once this was done she needed to make it into a shield and write up the meanings of the symbols they’d chosen, and adhere it to the back of the shield so that she could present it to the class as part of the team.

Jenn picked out a bunch of pictures and discussed them with the guys. She had picked out a panther which was a feminine symbol. Apparently the guys agreed that since there was a girl on the team the panther would be ok, as long as they could also include a fire-breathing dragon. My daughter agreed including a dragon would be fine.

So she set to work making the shield—it was decided that it was fine for her to have help drawing the pictures, especially since many of the other kids were using computer images. Jenn colored the pictures and glued them to the cardboard shield (she also had help with the cutting.)

When she presented to the class she stood in the front of the room with her team. She read her presentation from the back of the shield and when she tripped over a word her paraprofessional, who was in the back of the room, whispered the word into her FM system so that only she could hear it. This way she could continue smoothly with her presentation (this was a coat of arms presentation, not a reading test!) The castle was great, the code of chivalry was chivalrous and the team got a good grade.

The day of her presentation she brought the shield home. My older daughter had an early dance class that day so they got off the bus and right into the car. While I drove and made a mental grocery list my daughters discussed school.

Suddenly my older daughter said, “Hey Mom, listen to this—listen to what’s on this coat of arms Jenn made.”

Here is what she read:

The cross is white. It stands for peace and protection.
The shield is blue. It stands for loyalty and truth.
The panther stands for a beautiful woman, fierce but gentle to her young.
The dragon stands for a most valiant defender of treasure.
The flaming heart stands for ardent affection. (“Just love, that’s all,” my daughter told me later.)
Its purple color stands for royal majesty and justice.

We joked that she had made us all a coat of arms. Then Amanda turned the shield over and said, “Oh my gosh, wait til you hear this!!!”

On the front of the shield (it came out backwards in the picture somehow) were the words the team had chosen from their code of chivalry:

Fight for All or Fight for No One!

No doubt about it, she had made our coat of arms!

There’s your F!