Tumbling

Abby is just over halfway through her second tumbling class this year. She looks forward to it all week and is all smiles! Here are some photos from family night.

Sorry so many of them are blurry. I still haven't really figured out the right setting on my camera for action shots... because apparently it's not the "action" setting. Maybe I should read that book they send along with most technology purchases. I think they call it a manual.

Abby ADORES her teacher and often brings pictures that she's colored for her as gifts.

Getting some help from the helper.

Getting a little push from her Dad.

This is Abby's Grandpa. She adores her Grandpa.

On the balance beam.

This is Joey. He's in her class at school AND in her tumbling class.

They are buddies and were soooo excited to see each other that night.

Too cute!

Etsy Goodness!

I've mentioned her before, but my good friend, Jenifer Rank, has a lovely Etsy shop where not only does she sell the items she lovingly knits, but also donates a portion of her profits to various charities. For this very reason, she has been invited to participate as a vendor in Portland State University's (Oregon) Earth Day celebration. They select local artisans who's philosophies and business practices mirror the "Earth Day Spirit." It really is an honor. Congrats, Jen!

One problem.

She needs to sell some of her inventory on Etsy in order to raise money for the entry fee. So let's help a sister out and order something fun for yourself, your kids, your mom, maybe your neighbor. Go for it!

(love these coffee sleeves... especially the one with hiking boots... CUTE!)

Be sure to take a peek at her Abby Collection. It's inspired by my little Abby J and she will donate a portion of those proceeds to Autism Speaks.

That Jen is a keeper, I tell you. Love that woman!

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

Skateboarding is NOT a Crime!

I recently ran across an essay written by Steve Berra, who was famous amongst skateboarders before skateboarding was "cool" in places like Post Falls, Idaho and small-towns across the Midwest. It's a topic that is near and dear to my heart. My little brother has been skating for about 20 years now and I once fancied myself a bit of a skateboarder. I sucked, but I loved everything about it. I about killed myself just this past Fall as I pushed around on my Wonder Woman board (that I got for my 19th birthday and will have FOREVER if Bean doesn't break it first) in the driveway with Bean and Abby. I bailed hard and gave myself a seriously swollen knee and hobbled around for a week or so. It should be the last time I ever step foot on a board, because I seriously have no business pretending I can still be a poser skate. But I guarantee it won't be the last time. I love it too much to just let it go forever. Even if all I ever do is cruise around my driveway with the kids.

I really do still enjoy the sport. I don't watch it as often as I used to, but I still find myself getting lost in and being amazed by the videos my brother posts. He's pretty good, but I'm his sister, so I'm biased. Here he is with the Bean on his last visit here. I'm pretty sure Bean is hooked on skateboarding now, which is fine by me. Of course since I'm his mom, he'll be decked out head to toe in a helmet and pads when he gets his first board, but I'll defend the sport to anyone who dare talk trash about it. If you don't like them skating on your property, then donate funds to create places that they not only can skate, but want to skate. Too many cities combat the "problem" by building outdoor skateparks designed by some dude who's never stepped foot on a skateboard.

Ok... I really could go on and on about this topic, and maybe I will again someday, but for now I'll simply post both the video of Bean with his Uncle Jeremy and the essay by Steve Berra. Please Support your local Skatepark!!! Oh! And every city needs not only an outdoor park, but an indoor park. Skateboarders are here to stay and what are they supposed to do when it rains or snows?

(that's Abby screaming in the background,

because she wants to go back to the playground.)

A New York Times article said recently this business we're in, skateboarding, is a $5 billion a year industry. This astounding figure brings two questions to mind; how is there so much money being poured into something that's totally illegal everywhere you go? And where the hell is all the money going? Two things for sure; not in my pocket and certainly not into building adequate places where skateboarders can actually do the one thing that continues to keep skateboarding alive. And that's to skateboard.

So why has it continued to thrive? Well, by our very nature we're a creative group, a persistent group and a somewhat lawless one. If we've been told not to skate, we leave and come back only in the middle of the night with lights and generators. If a rail's been knobbed, we de-knob. If a ledge has been skate-proofed, we unskate-proof it. If there are cracks in the concrete, we bondo them. If there's a kink on the end of an otherwise perfect rail, we cut it off. It's what we have to do.

Two years ago I came across some pretty heavy criticism for making skatespots. My position was always this: I'd rather make spots skateable than not skate at all. Nowadays, there isn't a single issue of a magazine or a video where I don't see a spot that's been tinkered with to make better or completely manufactured altogether. Why? Because skateboarding is illegal everywhere you go and to those who would like to see it stay alive do what they have to do to keep it alive. It's the natural order of survival, it's the evolution of things. When swimming pools were becoming harder and harder to skate, the first vert ramp was born. When vert ramps weren't readily available for every kid on a skateboard, those kids took it to the streets and they did this because they'd rather have places to skate than not skate at all.
It's called change.

(Essay and photo from here)

Things change. Boards change, shoes change, tricks change, skaters change. Change is the manifestation of time and time has shown us that skateboarding is here for as long as we, as individuals and as a community, create it into existence. Although not nearly enough of the $5 billion a year being made in this industry is being appropriated to building places where we can do it, there are enough rogue individuals out there continuing to make it happen. Whether it be by building ledges at a remote spot just east of downtown like Jason Hernandez, constructing mini-ramps in our backyards like Mikey Taylor, concreting pole jams into the ground like Emmanuel Guzman, or buying buildings and constructing skateparks inside them like Eric Koston and myself, we continue to grow because our will to skate and our will to survive is just that strong and because the only alternative is to quit and die. But we at the Berrics believe that life was made to live out of, not die out of. There's nothing special about death. Anyone can do that. -- steve berra

Holiday Card Project

In case you haven't noticed, I've added a section in the sidebar titled "My Holiday Card Project" where I am keeping you updated (and me organized) about how many cards I have done for the project.

(This card is so cute in person. Each tree is separate, so there is some real depth to the card.

2 different cards used to create this one.)

It's still so early in the year, that who knows what will change in the months to come. But my tentative plan is to keep making them for as long as my supplies last me (email me at erinkj05@gmail.com to donate your used holiday cards) and then sell them online, probably at Etsy, and maybe also do some of the local church bazaars or a local card shop.

(2 holiday cards & misprinted wedding invitations, from a print shop,

were used to create this card)

I'm pretty proud of myself for having 71 done and it's only mid-February. If my supplies last and I keep this pace up, I should be able to make a fairly decent donation. I'm excited!

(3 holiday cards used to create this card)

Abby has PDD-NOS... I think.

Physicians involved with developing the new Diagnostic and Statistical Manual of Mental Disorders (DSM-5) are attempting to change the Diagnostic Criteria for Autism Spectrum Disorder (ASD). They are making efforts to more accurately diagnose individuals with Autism and avoid over diagnosis, which many people, most of whom I'd be willing to wager are people without kids on the Spectrum, are very concerned about. Don't get me wrong, it's certainly a concern, but I'd rather there be kids out there getting some one on one help with their issues, than simply being told they're "just fine" when in actuality, they aren't. This attitude of "over-diagnosis" is certainly contributing to the stigma surrounding Autism. And I want us all to start Thinking Differently About Autism.

The DSM-5's new criteria would do away with the diagnosis of PDD-NOS (Pervasive Developmental Disorder- Not Otherwise Specified)... Abby's diagnosis. This could be good, but it kind of freaks me out. Why? It is a vague and confusing label. "So does my kid have Autism then, because her label doesn't say she does?" Losing that diagnosis freaks me out, because Abby went to three pediatricians who looked at only a few of the typically "Autistic" symptoms, disregarding everything I'd just told them, which were typical symptoms of people with PDD-NOS, and then repeatedly told me she was "fine". Well she wasn't.

Getting the PDD-NOS diagnosis enabled us to not only get her help from an outside source, but for me and my husband to find the information we needed to focus on parenting her in the ways she needed us to. We started reading books about Autism, instead of Milestone books for typical kids that just confused us. When I think of all the times we put Abby in time-out for trying to "communicate" with us in her limited, autistic way... it breaks my heart. How many times I disciplined her for displaying typically "autistic" behavior? Behavior that was "normal" for her and that she didn't know was "wrong". I should have just followed my instincts, but I was hoping my instincts were wrong.

Here is About.com's definition for PDD-NOS:

In essence, it's a diagnosis that means

"on the Autism spectrum, but not falling within any of the

existing specific categories of Autism."

To explain more fully, there are five disorders that fall under the category of PDDs. These include Autism, Asperger syndrome, Rett syndrome, Fragile X syndrome, and PDD-NOS. Austism, Asperger syndrome, Rett syndrome and Fragile X are all specifically described in the DSM-IV... the manual that practitioners use (barely) to diagnose neurological disorders.

Many children have some symptoms of on PDD and some symptoms of another, but not enough of any one of the four specific disorders to receive a diagnosis. Thus, they DO have a PDD-- but they DO NOT have Rett syndrome, Fragile X, Asperger syndrome, or autism. As a result, they receive the catch-all diagnosis of PDD-NOS.

So does that clear it up for you? Because it barely clears it up for me.

"So my kid doesn't have Autism?"

The hope-filled question that I've asked her teachers, therapists and social workers before.

"Oh, no. She has Autism." they assure me.

So maybe getting rid of this vague label is good. But then my question is... what's her new label and does she need one at all? Why are we so anxious to put a label on our kids? Why her? Why me? Why us? WTF am I supposed to do with this "new" information?

We need the label to tell insurance providers, pediatricians, Abby's typical friends who are learning how to communicate with her, ourselves to remind us that we have to "Think differently" about the way we raise her, anyone who will listen and learn about this disease that affects 1 in 100 kids, and for the people who stare and wonder "What is wrong with that kid?" ("She has Autism. What's wrong with YOUR kid?")

Other than that, I could give a shit less about labels. She is Abby J and she is practically perfect just as she is.

*NOTE* Please take a moment to read the comments associated with this posting. There is some interesting conversation there that adds to this post. Thanks!

Let's Count

A great reminder not only for those of us with loved ones on the Spectrum, but for us all in general.

via here

She's a Lover AND a Fighter

Abby loves Valentine's Day. She's been looking forward to it since the day after Christmas. I woke up a couple of weeks ago, walked into the living room where Bean said, "Good morning!" and Abby said, "Happy Valentine's Day, Mom!"

I'm not one of those people who decorate's for every holiday. I don't have anything against the holidays, they just usually sneak up on me and are here before I know it. I have heart window clingys that I guess I should have put up at least, but I'm just not motivated for it this year. December and January have been a whirlwind for me and I feel like I'm playing catch-up... and losing.

But I'm taking some inspiration from Abby. I bought her a new dress covered in hearts and her Grandma D sent her a new Angelina Ballerina movie that had a heart shaped locket with it. It's the first necklace Abby will wear.

Abby doesn't like chocolate which was very fortunate for Bean and I, because she took great joy in feeding us all of her chocolates she got from school. He wore almost as much as he ate.

This is one of the Valentine's that Abby brought home from one of her favorite friends at school. I thought it was so cute!

We bought our Valentine's this year, because that's what Abby wanted to do. But I think we'll make them next year. I found this idea on Design Dazzle and I think it would be a really fun project for Ab and I.

Toni found this idea here

We are enjoying a quiet day at home today and then my honey and I are going to a movie tonight. I hope your Valentine's Day is exactly what you want it to be.

Happy Valentine's Day!

30 Packages of Pull-Ups or...

... or these adorable flats by Chloe.

If you have an extra $310 laying around, you can find these here

How adorable would these be with Spring dresses or a pair of Boyfriend jeans? I love them. But my baby boy needs his pull-ups... $310 buys you 1,240 of them. This is how I shop these days. Which means we have plenty of pull-ups and I buy my shoes at Target for $12.99

I'm Not Sobbing. At Least Not Today.

I wasn't planning to post about this quite yet, but I'm so bothered by someone's insensitivity that I just have to share. I've been brainstorming for a while now for a way to raise money to make a more sizable donation for Autism research and awareness than I could do on my own. This year, I believe I've found it. Sure I stole the idea from here, but it's a good idea, so why be original? I have asked my friends and family for their old, used Christmas & Holiday cards to repurpose into New cards that I will be selling this coming Fall for the 2010 Holiday Season. All profits will be donated to further Autism research and awareness.

Key word of the day... AWARENESS.

I subscribe to our local Freecycle.org group. If you don't belong or are unaware of what FreeCycle is, please check it out and consider adding it to your routine. It's really a great service. With that said, our local group has a moderator that could use a lesson in tact.

Tact

Pronunciation: \ˈtakt\

Function: noun

Etymology: French, sense of touch, from Latin tactus, from tangere to touch

Date: 1797

1 : sensitive mental or aesthetic perception <converted the novel into a play with remarkable skill and tact> 2 : a keen sense of what to do or say in order to maintain good relations with others or avoid offense

While I utilized FreeCycle quite a few times in Vermont, I had yet to give or receive anything from the group here in Michigan. So this was my first time posting since signing up a couple of months ago. They have some rules and regulations, just to keep things simple and organized. After all, their main goal is keeping things out of the landfills, which I appreciate. I forgot a few of the formatting rules, so my post was denied. Here's an idea of what I typed in my request...

"I might be late getting out this request, but I am wanting used Christmas cards to repurpose into New Christmas cards to sell next Fall to raise money for Autism Awareness. Blah, blah, blah... (some more info about making the cards, nothing about me or Abby or Autism)... blah, blah, blah. I have a daughter with Autism and have been looking for a way to raise money. This is it!"

This is the email I got from the moderator denying my request.

"Per posting format, you need to indicate area where YOU live, in subject line; resubmit....and when you do, only the first sentence of your text body is sufficient. One does not need to detail their "reason" for asking, to keep something out of the landfills..and sob storys aren't allowed. T/y."

And "sob stories" aren't allowed!?!!! OMG!

Where did I sob in that request?! As a matter of fact, I think I might have been smiling and typing with a bounce in my fingers as I typed up my request. Sure there have been days when I've asked "Why Me?!" in my adventure parenting a kid with Autism, but I wouldn't trade her for the world. If my option was to have no Abby or Abby just as she is, you better believe I'd choose her just as she is a thousand times over!

This was my response to the moderator... my fingers were shaking with anger as I typed this up. I could see the point the moderator was trying to make and yet I was feeling like I had to say something to point out their lack of tact.

"Sorry. This is my first posting and it's been a while since I reviewed the format specifications. Have to admit I'm a little offended by the reference to "sob story". I don't feel I have a "sob story". Just a kid with Autism who I think is pretty close to perfect just as she is. No need to sob. With that said, I understand the point you so "eloquently" make and will keep my resubmission short and sweet. Thanks."

I thought about telling them off and unsubscribing, but that would just hurt me, other users of the site and landfills. So I just kept it brief and calm, considering I was so pissed! OH! And by the way, I've read other requests for items that detailed a families dire economic situation, so I hardly see why sharing the reason I'm asking for used Christmas cards as being a sob story.

Abby's Autism is mild. I could pretend it wasn't there and people might just think she's a bit weird, if they even noticed anything at all. The reason I don't do that is because I think we need to "Think differently about Autism." With so many kids diagnosed, people are going to find themselves in contact with someone who has it at some time or another. I LOVE when people ask me about it. I LOVE to educate them with the little bit I know about Autism and give suggestions for how to interact with people who have it. Our story is not a Sob Story. It's simply our story. Some days the stories are light and funny, sweet and touching, sad and frustrated. Just like anyone else's. We have good days and we have bad days. We have days that are full of original thought and conversation and then days that are filled with frustrated, non-communicative screams and days that it seems Abby is stuck reading the same script over and over again.

Sure I've sobbed at times.

Who hasn't?!

But our story is NOT a sob story!

It's a story of love, acceptance, perseverance and victory!

Being Abby's mom is a joy that I thank God for daily.

If any of you would like to donate your Holiday cards, please contact me at erinkj05@gmail.com. Thanks.

(All images are holiday cards that I've made out of repurposed cards, paint sample cards, old brochures from spas and apartment buildings, print shop clippings, etc.)

I've made 41 cards so far and I've only just begun!

UPDATE: I received a kind and TACTFUL reply from the moderator and I'm much less pissed now : )

It was the way it should have been worded initially. She basically reiterated her initial point and pointed out that "sob story" is the term they use in the rules laid out for the postings and she meant no disrespect in quoting it to me. It was all said in a manner that was not at all rude and finished it all up with "Good luck with your request! It certainly merits a good cause. ;o) " I stand by my original annoyance, but I'm less pissed and I'm glad she took the time to respond in a professional manner.