My Family's Experience with Autism: parent

Friday, October 26, 2012

The Never Ending Career Search

I know there's a lot about the kids that I need to post about, but for right now, I want to write a "ME" post.....

You see, for the last couple of days, whenever I have some time alone (usually in the car), I have decided what I want to do with my self-proclaimed title of "Parent Advocate". I believe I've known this for a while....I just needed to tailor it down to what I believe are my strengths.

I want to work with parents. Specifically, parents who are going through the process of a child being diagnosed with an Autism Spectrum Disorder (ASD) or parents with children recently diagnosed with an ASD. I love the kids.....don't get me wrong......but I don't know how much I personally can do to help them compared with the great teachers and specialists that are out there. But I can offer something to the parents. I can listen, and I can understand. I can explain it, and not as a doctor trying to explain these things to a parent feeling lost, but as a parent who has been through this all. I am very good at researching information and I can find details for people to help them understand what their lives are about to become and help them figure out ways that they can help their children.

I kind of do this now. I run the Facebook page We Care About Someone With Autism and I regularly get questions like this. Sometime they stay on the public forum, other times, we exchange emails or Private Messages and I think I have really helped quite a few people.

About a year ago, I thought of starting up a support group for local parents that would meet during the school day. But I thought about it and realized that I have no clue not only how to start up such a thing but that I really don't know if people would want to come to something like that. I think that it would benefit many, but it's hard to sit around a table and discuss things like this with strangers. And it's even harder when the person sitting at the head of the table has no appropriate credentials to her name other than a parent. And I would hate to ask people to pay for such a service, even though I would have to in order to pay for premises and make a little money on the side, which to be honest, wouldn't hurt my family. So, this isn't really the right direction for me to look.

I have now laid out (in my head) a perfect job for me. I even think I know the organization that would want to hire me.

Now I just need to figure out how to make myself qualified for such a position.

A Little Bit About Me and My Family

Every once in a while, something happens to a family that seems to change everything, whether that change is positive, negative, or in an uncertain direction. One such thing happened to us in March 2009, when we were informed our 26 month old twins (girl/boy) were BOTH on the autism spectrum. Their older brother (nearly 4 at the time) had always been ahead of the curve for most developmental milestones, so we had never really considered that some of the delays the twins were having had anything to do with autism. Well, we were wrong. Since then we have been learning about learning techniques and doing everything we can to make sure they get any and all help they need so that they can live normal lives. This blog chronicles that journey.

The Autism Pizza

I don't know where this came from originally, but I found it on a post on Circle of Moms. It's a good explanation of how things line up on the spectrum.

1. The Crust: Lack of Social Interaction (poor eye contact, not sharing interests with you, no pointing/gesturing)

2. The Sauce: Impaired Communication (possibly no speech, poor conversation skills, repetitive language, echolalia, no make-believe play)

3. The Cheese: Stereotypical Activities & Interests (extreme routine, strong interest in certain things, stimming [flapping, atypical play, etc.] -- like spinning wheels, lining toys up, stacking, etc.)

If you have all of those things: crust, sauce, cheese, you made an Autism pizza. It might have different toppings, but you can look at it and know it's still a pizza. If your pizza doesn't have sauce, that's Aspergers's. If your pizza is missing more than that but still kind of looks like a pizza, that's PDD-NOS (Pervasive Developmental Disorder, Not Otherwise Specified)