Sunday, February 21, 2010

Whatever You Are, Be A Good One

I have a very dear friend, named Courtney. We became friends in high school and have remained friends ever since. It's been about 15 years, give or take a year. We lived together in our late teens/early twenties and during this time, and years after, Courtney worked in group homes for adults and children with Special Needs. She loved the people with whom she worked, with a passion that forever changed my view of people with Special Needs. Little did I know then, that living with Courtney and hearing her thoughts, opinions and emotions regarding the people she cared for, was helping to shape me into the mother I am to Abby today.

(Courtney and I at the North Idaho Fair, riding a stuffed bull, circa 1996)

When I first told Courtney about Abby's autism, she said something like, "What is the great irony that, Erin, one of the most verbal people I know, would have a child that doesn't know how to communicate?" It is both ironic and perhaps fitting, because who better to raise a child who struggles with communication than a person who thrives on it? This is not to suggest that my methods with Abby have always been perfect. On the contrary, I think there have been some things that I've shared with Courtney that I sense she, as both a mother and an educator, has disagreed with. At first that made self-concious, but in the long-run it has been a check to me that I appreciate. While I stand by the majority of my parenting decisions, there are some that I certainly wish I could go back and do differently.

Courtney is now a teacher in our home-town's school system where she works with Special Needs kids and, of course, kids with Autism. I've so appreciated her comments on my PDD-NOS post, that I've decided to post them here, to make sure that they aren't simply passed over. If you weren't able to read the initial post that sparked this series of comments, please take a moment to do so by clicking here.

I'm so thankful to have Courtney in my life. She has proved to be a great friend time and time again. I look forward to the time we will surely spend together when our children are grown and we are reflecting on our lifelong friendship that has long surpassed 15 years.

(This photo was taken last August at another dear friends' wedding in Washington state)

Courtney: "Ok here's my take, obviously from a different perspective than a parent of an autistic child but as someone that sees trends when comparing the abundance of children coming to me with all sorts of developmental delays.
As long as any child has pervasive developmental delays they will receive special education services, and that is the way it should be, I think we all agree on that. Children with PDD are also encouraged with communication and social interaction as ASD.

I get a lot of first grade students with a PDD criteria and it is a very vague descriptor of the child, but they have the same rights as a child diagnosed with autism. So even if the PDD wasn't under autism spectrum, you would still get the same rights to individual education and all that good stuff. I think that what they do with the PDD diagnosis is the best solution I know of for the child, teachers and the health community as well. Not that trying separating and diagnosing all these people is ever going to be perfect or anything.

I have seen some children diagnosed with autism completely change and turn themselves around in communication, interpersonal relationships and academics. I have see other children with the exact same diagnosis living in a full time staffed assisted living home never talking or being potty trained. Now these two people obviously should have different diagnosis'. If students are diagnosed with PDD instead of autism when they are high functioning on the spectrum, they, their families and the medical community won't be quite as surprised to find that this autistic child's family must have found a cure that the other more severe autistic child's family didn't have. This situation, to me, is scary because I would hate for a parent to treat their child medically because they heard of a treatment that was effective for a condition that is incorrect ya know?

Anyway, what do you think? I wrestle with figuring out these issues all the time because my job is to decide what to "call" kids and qualify them for services. Let me know!"

Me: "Thanks for your input, Court. I'm always interested in your take on the situation. I listened to a few radio shows about this yesterday as I caught up on my NPR podcasts and I feel a little better about it on one hand and that much more confused on the other.

The first story, advocated for taking away all of the various labels, because what's happening in some places (it happened to us here) is that the kids who fall under the PDD-NOS and Asperger's aren't qualifying for services, because they are so high-functioning that they are seen as high need. That is soooo not true. Otherwise, how do we get to the point of success that some kids reach? Those that no longer fall on the spectrum at all. So if we classify them all as simply "Autistic", they will have access to services just like any Autistic kid.

Yeah that makes sense to me.

Then I listened to a very articulate man who has Asperger's. He said that while he could understand the point made earlier, that he had a real problem with being placed in the same category as an Autistic person who has the severe delays such never speaking and never being potty trained. He was concerned over the stigma that people with Autism already face, being applied to him. A person who certainly has social issues, but is so high functioning that he is able to have a successful career and life in general... well the typical idea of a "successful life". Because my idea of what makes for a "successful life" for my kid has become quite different.

So all in all, I don't feel quite as weirded out by the proposed changes, because I think their goals are just and could lead to better services. As for the view from members in the Asperger's syndrome, it's an understandable concern. It just helps solidify my goal in helping to further the average person's education on Autism in general. We'll all find ourselves confronted with it at some point in our lives, whether it's our kid, the neighbor kid, our niece/nephew, or the kid greeting you and giving you a grocery cart at Walmart.

So in the mean time, I'll continue my quest to write about it and share my idea of what it means to Think Differently about Autism.

Thanks for weighing in, Court! XO"

Courtney: "Oh my goodness, Friday I went to work and we had representatives from the region autism society. Talk about confusing! First they started out saying that autism was defined as a lifelong neurological disorder. So in the question and hopefully answer segment, I asked "so if researchers have determined that this is a lifelong neurological disorder, does that mean they know that people with autism are dealing with the same type of neurological dysfunction and what that dysfunction is?" She they both start just shaking their heads no.

So the "experts" go on and talk about how we as teachers go accommodate autistic children. They go on and on about what autistic children may or may not need. But it was awful because they started stating what autistic kids aren't going to be able to do and what autistic kids are going to hate. But they went on and on to the point where they were talking about how they can hate writing or other serious basic aspects of life. I could see on the other teacher's faces, it was like "so your saying I shouldn't push for kids to adhere to basic expectations or accommodate every tick these kids have?" It was just bad.

They shouldn't even put all autistic kids in the same category. It would be like telling a doctor to treat you for an illness, and not telling the doctor your symptoms. It doesn't really help.
Anyway, after that I was visiting with the Gifted and Talented teacher, and we share several "autistic" children. We decided that we are going to look back in 20 years and feel really silly about how we groups all these kids together that obviously have different syndromes and called them by one name.

What do you think?"

Me: "I think that I am sooo thankful that there are educators like you in the world, Courtney. I wish you could meet Abby's teacher. I think you both would have many things in common.

I think that the issue with putting people with so many varying factors under one Umbrella Diagnosis, is that you'll get some doctors and educators who will attempt to treat them all with the same treatments. And as any of us who work/live with those in the Autism community knows, they are all different. So this concerns me.

On the one hand, I appreciate the idea that if you're simply diagnosed as being Autistic, you'll be eligible for more services, where Abby was denied further services, because she "isn't severe enough". Awesome. (My "awesome" here is sarcasm for any people reading who might not know that sarcasm is my native language.)

But on the other hand, I've experienced first hand the pediatricians who have read one or two "Autism Symptoms" forms and have told me repeatedly that my child was "normal", so the general umbrella concerns me. How many children will not respond to the "standardized" treatments/therapies and then go untreated or worse yet, will it give insurance agencies the right to deny coverage for the parents/teachers/therapists who seek other treatments/therapies outside of the standardized set of approved treatments/therapies regardless of their proven successes?

I do however agree with calling it a "lifelong neurological disorder." Because I think it is. I've gotten some flack for this theory, but it's what makes sense in my mind. I liken living with Autism to being an Alcoholic. I don't believe that a kid with Autism can be "cured", but I do believe, whole heartedly, that a child can learn to manage their Autism. An alcoholic can stop drinking entirely and learn to curb, or manage, their addictive cravings, but they are indeed still alcoholics. My sincere hope and goal is to help Abby manage her Autism. I foresee a day when she is in a social setting and will feel an Autistic tick coming on. She can either explain it with confidence and eloquence to her company, or she can simply excuse herself to a private space to allow her some time to let the tick pass. When I speak of "Thinking differently about Autism", I hope that we as a society will learn to view the Autistic ticks that these people live with and excuse them as normal for those people. That's my sincere hope.

So the fact that it's a "lifelong neurological disorder" doesn't mean we give up hope, or place them all in the same diagnostic category, or the same treatments/therapies, it simply means, to me, that we learn to live with it, in spite of it, and thrive with it.

I know that Abby will find her path in this world and whatever it is, she will be successful, however she chooses to define success.

"Whatever you are, be a good one." -Abraham Lincoln"

Thanks for being such a great friend and teacher, Courtney! XOXO


courtney said...

It is REALLY terrible that in order to get early intervention you have to scrap, beg and plead in order to get the right help at the right time. "Sorry, we're going to have to wait for your daughter to far farther behind before we can help you." just doesn't sound quite right uh? Oh it's just a mess. I hope researchers put as much effort into finding more accurate medical information and diagnosis', as teachers and parents do pining over what's best to do for our students and children.

P.S. - Idaho is now drafting legislation that will disallow schools to isolate children that are physically violent. The vast majority of my students with violent tendencies are diagnosed with some sort of autism, not to say that autism is the predominant cause of their outbursts. So I get that and all, but when I talked to my many bosses, it sounds like the effect of these new rules would mean that if a student is violent, all the people in the given classroom would have to be evacuated until the parent could pick up the student from school. The parents would also have to pay for damages. Could you imagine how happy your boss would be if you had to leave work often to deal with your child at school, then spend your paycheck on the stuff they broke? I just don't know. What do you think?

courtney said...

Oh my other p.s. was that I appreciate all the parenting thoughts you have shared with me and can't say I disagree with anything I've heard. As a parent that had to introduce spanking last week, I'm taking all parenting suggestions possible.

p.s. don't worry izzy doesn't have to go pick a stick or grab her ankles or anything.

My name is Erin. said...

1. I think it's ridiculous that a classroom would have to be evacuated because one child is disrupting the class. What sense doest that make?! Because not only would I be pissed to get a bill to cover the damage my kid made during the one part of the day that I get a break from trying to keep them from destroying stuff, but I'd be pissed if I were the parent of one of the kids NOT disrupting the class that was "evacuated". Does the kid have a gun?! No. He's just freaking out and potentially causing bodily harm... so remove HIM! Or HER. That's the same type of reasoning that keeps kids on the mild end of the spectrum from not getting help. It's not like you lock the kid in a broom closet.

2. Thanks for reassuring me that you haven't disagreed with any of my parenting methods. I really respect your opinion and maybe I was uneasy about some of my methods myself and thus projected your feelings where there perhaps were none.

3. As for spanking, I know a lot of people who disagree with it and for all the right reasons. With that said, I was a child who was spanked in the right way. It worked for me. It was done in a loving, methodical and respectful way... not in a rage. And for some kids, when you've tried everything else, it works. My niece can be reasoned with on 98% of things, but after running into a busy road for the 2nd time in a week, it was the smack on the ass that got it through her head how crucial it is to listen and pay attention. Our house is virtually spank free these days and that's the way I prefer to keep it. However, Bean and Abby were playing in their room the other night and he slammed the door repeatedly, almost taking out her fingers in the process a number of times. It had been discussed, a timeout from the room had been enforced and yet once again (at least the 10th time), I heard the door slam like a wooden guillotine and Abby squeal as she narrowly made her escape like Indiana Jones diving through the closing doors. So I whipped open that door grabbed him and swatted his little diaper and jeans padded butt, sternly said "ALL DONE WITH THE DOOR!" and walked away. It shocked the heck out of him and lo and behold... no more door slamming. So yes... sometimes a butt swat is in order.