My Family's Experience with Autism: Our Life and Making Decisions -- Dealing with Self Pity

Monday, June 15, 2009

Our Life and Making Decisions -- Dealing with Self Pity

.....well, it's time to get off my preaching posts and talk a bit as to what's going on in OUR lives.....mainly because I'm getting frustrated and need to get some stuff off my chest....in other words.....SELF PITY POST!

As I mentioned earlier, both Rachel and Simon are in this 3 day/week preschool run by our county's Infant and Toddler Program. They are both responding, but Rachel isn't doing quite as well as Simon, mainly because she's very "behavioral" and has to do things on HER terms. Therefore, it's the recommendation of her teachers that we also arrange for one-on-one ABA with her (applied behavior analysis). Their preschool does some ABA, but it's only a small portion of what they do whereas ABA in the home is far more intense. She was initially evaluated (well, observed) a couple of weeks ago by CSAAC.

Well, CSAAC called me this afternoon and we now have an evaluation scheduled for her to be seen by their psychologist next week. Of course, they will also be evaluating ME and I'll be showing up with her twin and her 4-year old brother in tow, so it will be an interesting experience. And, truth be told, I'm still not convinced this is the right thing for her. Her problem in the classroom is attending to the structure and doing what she is told. ABA is ALL ABOUT STRUCTURE!!!!!!! If she can't take it in small doses, how will she respond having no choices for upwards of 10 hours a week???????

I love my children. I think that's obvious. As the "mommy", I need to make decisions that will benefit all of them. So, I'm focusing on making the right choice for EACH Rachel and Simon. Then I have to make sure that whatever those decisions are won't interfere with Daniel's routine or life any more than necessary. Finally, I have to be able to live with it all. Right now, I'm not sure if ANY of these criteria are met.

Finally, we are STILL waiting to find out if Kennedy Krieger Institute will EVER want to evaluate the twins. I'm still not 100% sure I want to know, but having a cause would be helpful -- it would be nice to potentially eliminate any lingering thoughts of "What have I done to my babies?". I called them today and left a message asking for a time-table of when they will contact me to schedule an appointment.

OK -- here's my first self-pity post. I'm sure there will be others, but I can't believe I'm putting one in before my lectures are over.

1 comment:

Mamma CJune 19, 2009 at 4:43 PM
What day is it? Why don't you bring Daniel over to me. I think I can handle it. I'll lay on the couch in the basement and let the boys play.
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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)