Peace Through Understanding?

Tough mornings are nothing new in our house. To say that I'm not a morning person is an understatement of epic proportions. As one parent I recently spoke with at my son's daycare said, "Oh, you're a two-cupper." Meaning, I need two cups of coffee before I can function at a somewhat "normal" level. But when is enough, enough?

Abby has been really angry lately. It seems like it's just come about in these last couple of months, but when we're really honest with ourselves, she's always been angry. It's tough to see sometimes, because when she's happy, she's really, really happy. But man oh man... if she's not in the mood to cooperate or she's just plain pissed off... watch out!

She probably needs to get to sleep earlier. Her bedtime is 8 o'clock, but it's always closer to 9 by the time she actually falls asleep. She's like her mama. She likes to read in bed and I can't say I blame her. It's hard for me to enforce rules against something I've done my whole life. Even when I know it's the best thing for her.

My Facebook status today in honor of Dr. Martin Luther King, Jr. is,

"Peace is not merely a distant goal that we seek,

but a means by which we arrive at that goal."

I chose that quote, because I believe in it. It's the method by which I try to live my life. And the method that I attempt to parent my children. But I find that most days I fail miserably. (I hope I'm just not giving myself enough credit.) I try so hard to keep my cool and to be peaceful while I'm helping Abby with tasks. From homework to dinnertime to getting dressed. And yet I seem to have a threshold that I just can't extend. There are only so many times that I can calmly say,

"You have to pull from the bottom too, Honey, like this. You have to use your hands, Abby. Your pants won't pull themselves up. Abby you have to use your hands. Now pull from the bottom, too. Honey, like this. See pull from the bottom over your feet, then you can pull the rest up from the top. No, don't lose your temper... you just have to use your hands to pull from the bottom."

After another minute of so of dialogue similar to above, she's pissed off, because she hates using her fingers/hands to do anything, and oddly enough, pants don't magically pull onto your body without those magic appendages. And now I'm pissed off, because my job is to teach my 5 year old to dress herself, because her teachers aren't going to dress her and I don't want to have a 13 year old that I'm still freaking dressing! So now the dialogue turns into something like this,

"Well if you would use your freaking hands like I've said ten times and actually reach down and pull your damn pants over your flippin' feet, it would be easier to put on your damn pants! Now pull them up! Quit freaking out! For the love of God! We're just putting on pants!"

Not very peaceful.

I imagine that trying to change the hearts and minds of ignorant racists might be as difficult as teaching an Autistic 5 year old to get dressed. Both are irrational, over emotional, angry human beings. And it really breaks my heart that I'm drawing a direct line of comparison between my daughter and racists. But it seems impossible some days and yet I continuously push forward for change. I cling to the memories of the progress we've made and it does give me hope. And yet, I can't help but let my mind wander to thoughts of a darker nature.

At Christmas dinner, when I was pleading with her to watch her temper and just eat her food without screaming and throwing a tantrum, (which really would have a Christmas miracle), she turned to me with fury in her eyes, and hissed,

"I'm going to peel you!"

When I asked her in my stern mommy voice,

"What did you just say to me?!" she tried turning it into something cute and said with a giggly smile,

"I'm going to peel you like a banana."

At the time I laughed it off, but I can't shake that moment. I was disturbed by her threat and then her ability to turn right around and make it into something it wasn't... cute little kid banter. The fact is she says things like that quite often. I'm concerned for my little girls emotional well-being. How much of this anger is related to her Autism and how do we help her deal with it?

We are not an angry household. My husband and I rarely raise our voices to each other. That is not to say we don't get angry with each other, but we don't scream and call each other names or make empty threats. We don't scream at our kids, though we certainly get angry and let them know it. But there have been times when we've both lost our cool... a person can only take being screamed at by a child for so many hours in a day, before they push back. And this... THIS is what I fear... that I'm not successfully achieving Peace through Peace. That I'm exacerbating the problem, by giving into the stress, even when I was successful for the greater part of the day. It's those moment of anger that are staying with her, burrowing into her psyche.

And when do peaceful words and actions become complacence? Because sometimes I just give up. I merely move through situations quiet and numb, all in the name of "keeping the peace." I feel in some ways like we're back to the beginning. When she was 2 years old and spent much of her days in time-out, because if the doctor's are right and she's "just fine", then I need to discipline this behavior away. When and how do I discipline "bad" behavior, when I'm not sure she fully grasps how damaging her behavior is? Since the day we finally heard the words "Autism" come of the mouth of a professional, we've changed the ways we discipline Abby. She hardly ever takes a time out and generally the mere mention of it is enough to TEMPORARILY get her to change course, but are we doing enough? I have so many questions and not enough answers. Everyday it seems we make great strides, only to find ourselves back to square one in other areas. It's exhausting.

It's been a long time since I've sat down to write here and I'm afraid this is mostly rambling nonsense, but I think I need to do this more often. It helps to get it all out of my head where it just rolls around and morphs into thoughts like,

"Well, if you had more patience, maybe she would, too."

"If only you said the right words, she might understand."

"If you would focus more on her and less on school and work, maybe she would make more progress."

"If you were a better mom, a better wife, a better student, a better employee, a better sister, a better daughter, a better friend..."

"If you were more..."

I know in my heart that I'm a good person and a good mom, but this hand I've been dealt sucks and I don't know what move to make next. I don't have the tools or the knowledge I need and there aren't enough hours in the day to learn them all. When I focus on my family, I start to slip in school and at work. And while my family is my first focus, always and forever, it's important that I do well at school so I can keep my job, and it's important that I do well in my job, so I can keep my health care and my husband can have the freedom to pursue his career goals. And mostly so I can feel good at something again. Because even though I have great kids and we're really doing "ok", I never felt successful when I was a stay-at-home mom. The laundry was never done, the dishes were always dirty, and the kids still threw temper tantrums. At least at work, I can see things crossed off the to-do list. I can teach someone something and they thank me. I can make life easier for someone... and that's what I want to do at home, too. It just doesn't feel like I'm doing a very good job of it.

All I want is for my daughter's mind to peaceful and for her heart to be full of love. And I can't force it. I can only lead by example. And while my heart is full of love, my mind is not peaceful.

I'm trying, I really am. Maybe she is, too.

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

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!

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.

Art is the Creakiest Stair

I think I stopped paying attention to those "milestone" things when Abby was about a year old. You know the lists in books, magazines, websites, etc. I do get one that is sent monthly to my email inbox. It's kind of a good one. Not too specific and with good ideas for discipline, food, and whatnot. I always read the 2-year-old ones that come in regarding Bean, but generally just delete the ones related to "Your 4-Year-Old". It's just been too heartbreaking to read about what other typical 4 year olds might be doing, because Abby's not.

(2 years old, she wouldn't stop to let me comb her hair or even to feed her.

She was on a coloring mission that day!)

Well for the first time... it fit. Here's what it said.

Artist at Work

People, houses, and rainbows are favorite subjects for preschooler artists. Now, not only is it easier to recognize what's in your child's pictures, she actually planned to draw that specific thing. Younger children start with random scribbling and progress to make-it-up-as-they-go pictures. These days, though, when your child grabs a crayon, she often has a plan. Provide lots of opportunities to exercise this blend of creativity, dexterity, and intellect.

(Every artist needs a nose ring, right? She was 3 in this photo, trying on my nose ring... don't worry, her nose is not actually pierced.)

Abby does usually have a plan. She draws suns, people and towers. (she loves cellphone reception towers, smoke stacks, etc, and always points them out as we drive. We have a steam tower in our hometown and "he" and Abby are special friends. She worries about Tower-Do, as she calls "him", during rain, thunderstorms and fireworks in July.) It's been really fun watching her artistic side come out. She comes from a long line of artists and if you ask her what she wants to be when she grows up she answers, "An ARTIST!!" before you can even finish asking the question. Her Great-Grandma Nina would be as proud of her as I am.

This is our dear friend, Kari, with Abby a couple of years ago when we were still living in Vermont.

She is not only one of our closest friends,

but she is one of our favorite artists.

Check her out at karimeyer.com and remember... buy art!

Footprints on the Carpet

I'm changing things up just a bit here at The Gentle Giant. I hope you all don't mind. I'm planning to do more postings about myself, craft ideas, projects I'm working on and of course stories about Abby, The Gentle Giant. The thing is that I am just as much a Gentle Giant as Abby is. Like mother, like daughter, I suppose. But the description applies as much to me as it does to my little, Ab. Also, I've mentioned before that I'm cautious about becoming one of those parents... not that I'm even remotely close. I just want this blog to focus more on myself and my adventures as a parent of two kids, one of whom happens to have Autism. So this is one of those posts, which I'm hoping to do more of.

For those of you who play the Santa game, I found this great idea on a blog that I'm new to and wonder where it's been all my life... Not So Idle Hands.

I am sooo doing this next year.

Here are her instructions to create Santa's footprints. For my Wonder-Woman-Single-Mama friends who might not have a man's boot laying around the house, maybe pick up a cheap pair at Goodwill and keep one of them tucked away for this little project and throw the other out.

• Find your man's boot and trace it onto a large piece of paper and cut out.
• Then, use the "hole" for a stencil and use a fine mesh sieve to sprinkle flour onto the carpet.
• Next, tap excess flour off of your stencil and turn it over next to the 1st one to make the other foot (turning it over makes it the opposite shoe, so you only have to cut one stencil.)

(all photos from NotSoIdleHands.blogspot.com)

For those of you who were at Bean's birthday party on Halloween, this is where I got the idea for the Jack-o-Lantern jars. Check out the pics and links on the lefthand sidebar of Not So Idle Hands. Emily has some great ideas and I'm excited to keep following her.

Abby Met Santa This Christmas

I really meant to write this like the day after my last Santa inspired post, but life has been oddly busy. I say odd, because I actually have barely left the house. We've all been sick. This weird cold that seems to get better one day only to feel worse than before the next. Abby has surprisingly been surrounded by sick people, but has only sniffled twice. I'm very thankful. Apparently those gummy vitamins really work.

This Christmas was a lot fun. This year, Abby REALLY got it. She has been in love with the movie The Polar Express since last year. I can't even begin to tell you how many times we've seen it over the past year. Since I never believed in Santa as a kid, it's been a challenge for me to play the Santa game, but as soon as I caught on to the "Naughty vs. Nice" brilliance, it's all starting to come together for me. In the days leading up to Christmas, I was able to bring to mind for Abby the scene in The Polar Express where the alarm goes off signaling to the elves that a boy in New Jersey was in danger of getting on the naughty list at the last minute for putting gum in his sister's hair and then... lying about it! *gasp* It's a very serious matter.

(Abby & Bean listening to their Dad read Olivia Helps with Christmas... they make him read this book over and over all year long)

And apparently Abby does not take "Naughty vs. Nice" lightly when it comes to Santa Clause. She was being particularly whiney just before the holiday. I'm guessing it was partially missing school, partially that she is four years old and partially because there were new family members around who weren't privy to her game.

(Abby's Uncle)

So I said to her,

"Do you know what is happening in the North Pole right NOW?!"

She shook her head, "No."

"An alarm is going off and the elves are saying, "Abby in Michigan is not speaking very nicely to her family. Should we put her on the naughty list?"

Her eyes got big and I asked her, "Do you want to be on the Naughty List or the Nice List?"

She answered, "I want to be a nice girl."

"Ok, then. Please stop whining and use your nice words."

And it worked. It's genius! (Mom, you really should have considered Santa if only for that reason. Though I do seem to have a faint memory of you trying to use it a couple of times. Nice try, Mom. Nice try.)

("Daddy! Do you want to cook Santa?!!!")

Abby attended a breakfast hosted at the Muskegon Art Museum the weekend after Thanksgiving where she got to meet Santa. She sat on his lap, which is a miracle. Up until this year she regarded Santa with the same affection as one would reserve for the clown from Stephen Kings 'It'. (He's just a clown, I shouldn't be afraid... but he's so terrifying.) She'd watch from a distance, but when asked if she wanted to sit on his lap, she'd scream with the same intensity that she used, well, for everything else really. But this year, at that breakfast, she sat on Santa's lap and when he asked what she wanted for Christmas, she whispered,

"Super Why!"

Of course, Santa didn't hear her, because not only did she whisper it in her patented barely audible whisper, but she also said it about 10 seconds after Santa asked the question. By then he'd moved on to saying something else. But Abby's Dad was there and he was paying attention. He saw her whisper "Super Why." I imagine she must have been discouraged that Santa didn't hear her.

That's the way it is with kids with Autism. For the ones who do talk, they need a bit more time. I usually tell people to wait longer than they think they need to and then wait a few more seconds. Abby usually answers all questions posed to her, she just needs more time to process the question. Sadly, many people miss her answers.

We waited to put any gifts under the tree until the kids were in bed, telling them that Santa doesn't come until they are asleep. Abby took this very seriously and was asleep within minutes of going to bed. She apparently wasn't taking any chances, what with how close she'd come to the naughty list and all. My brother joked that she'd probably lectured her little brother on not "screwing this up!"

(After Santa had visited)

They were thrilled when they woke up on Christmas morning to find the tree surrounded by gifts. And one in particular said on the tag, "I heard you tell me what you wanted. To: Abby J, From: Santa" She started to open the package with little regard for who it was from, but then when she saw the familiar eyes of Whyatt from Super Why, she stopped dead in her tracks. Her face went white. Her eyes were huge! She dropped the gift and ran out of the living room into the dining room and looked from afar. Trying to process what she'd just experienced.

Santa was real!

He had to be! I could see the wheels turning in her head.

There was Super Why.

From Santa.

He said he had heard her!

(Christmas Morning)

We finally coaxed her back in to finish opening the gift. She finished opening it only to drop it again. She was shocked!

It took her quite a while to wrap her mind around the fact that Santa had heard her request and brought her Super Why. She was so excited! For the first hour that Whyatt was out of his package, Abby had to cover his eyes. She needed more time to process the miracle of actually receiving what she'd asked for.

(holding her brother's Alpha Pig and her Super Why)

The note that Santa left for her and Bean said,

"Dear Abby & Bean,

Thank you for the milk & cookies.

I was so hungry after flying all around the world.

I saw the Great Wall of China and the pyramids in Egypt.

You have both been very good kids this year.

Abby, I enjoyed meeting you at the breakfast with your cousin, ______.

I hope you enjoy your gifts.

Be good listeners and try your best to be big helpers.

Love, Santa."

She was once again amazed and for me, it brought back all the magic of Christmas.

It was truly a morning to remember.

A belated Merry Christmas and Happy New Year to you and yours!!!

(Our first Christmas in our new home)

Fall 2009 Progress Report

We recently received Abby's Progress Report for the Fall school season. They have 8 different categories and are graded for each age range (2-5) and are given grades as follows:

I - IEP (Individual Education Plan) Goal Area

P - Progressing

M- Mastered This Skill

Abby has Mastered everything in the 2 year old category, but is still being graded on a few things in the 3 year and 4 year category. Here are her "grades".

Social/Emotional

3 Years

• Stays with an activity for 5+ minutes = M (mastered)
• Begins to accept some correction/frustration = M (she still has a hard time with this at home)
• Actively seeks parallel play = M
• Begins to share and take turns = M

4 years

• Stays with an activity 10+ min. = M
• Follows class rules/routines = M
• Completes tasks in small groups (with 2-3 peers) = M
• Plays and interacts appropriately with 1-2 other children = P+ (though she ignores her brother a lot of the time... that's probably pretty typical)

Fine Motor

3 years

• Copies shapes (horizontal & vertical lines, circle) = M
• Builds a tower of 8+ blocks = M
• Strings 4 or more 1/2 inch beads = P+
• Undresses, attempts to dress = M

4 years

• Demonstrates hand dominance = M
• Cuts a straight line 4-5" = M (this is one of her favorite past-times)
• Copies shapes (circle & cross) = M-
• Draws a face with 3 clear features = M (her drawings are so cute)
• Puts on coast, shoes/boots = M (we'll have to start doing this at home more, she fights us at every turn and suggests, "How about mom does it?")
• Demonstrates mature pencil grasp = P+

Cognitive

3 years

• Matches colors and shapes = M
• Understands size (big/little) = M
• Counts 3+ objects = M
• Shows beginning knowledge of categories (food, toys, clothes, etc.) = M

4 years

• Names 9 colors (r,y,o,g,b,p,bl,br,w) = M
• Names 7 shapes = M- (I was surprised to see a minus on this one, because she can tell you all the basics at home, plus octagon, pentagon, & crescent)
• Recognizes name in print = M
• Counts at least 5 objects = M
• Sequences 3 pictures = M

Language

3 years

• Follows 2-Step, related directions = I (this is a big one to master for kindergarten success)
• Uses 3-5 words in sentences = M
• Names at least 25 common objects = M
• Answers simple "what" questions = M

4 years

• Answers questions about familiar stories = P+
• Tells use of common objects = M-
• Identifies actions in a picture = P+
• Understands spatial concepts (in, on, under, etc.) = I (we're working on this at home, too)

Gross Motor

(I'm going to skip this section, because thankfully she has mastered everything in both the 3 & 4 year areas)

School Readiness (all ages)

• Attends in a whole-group activity = P+
• Transitions from one activity to another smoothly = M
• Can do age-appropriate work/play independently = M-
• Entering/Exiting routines (ie. backpack, folder, coat, etc) = M
• Waits turn in a group activity = M
• Participates in all required activities = M

Sensory Registration

• Tolerates substances on hands/face (glue, cream, etc) = M- (she doesn't really like anything on her hands)
• Tolerates movement activity when feet are off the floor = M (this is an area we've really seen growth. She used to be so scared to be lifted off of the floor.)
• Tolerates being near others = M
• Moves through room safely = M
• Tolerates noise and light = P+ (she gets very nervous with loud sounds, despite the fact that she is often making more noise than anything else in a room)
• Eats variety of snacks, food & drink = M (I'd give her an M- at home)

Oral Motor

(has mastered all of these... appropriate tongue movement, lip movement, air control, etc.)

Her teachers comments: (anything in parentheses are my comments)

Abby has been doing so well this year so far! It is great to hear so much more language from her this year, and it is good to see her seeking more play with peers as well. (She asks things like, "Wanna play a game?" even if she doesn't follow through with the back and forth play so well) she has increased her counting skills as well as her knowledge of letter sounds- she is able to name all of the letters already and the sounds are coming along quickly! (she has been identifying her letters at home for a long time now) She continues to be a joy to have in class!

She continues to be a joy to have at home, too!

Almost Half-Way Through Chapter Four.

Have I mentioned how much I love my new laptop? I LOVE IT! I'm sitting on the couch next to my kids watching a second episode of Super Why (Abby's favorite!). We are all still in our pajamas and enjoying a lazy Sunday morning. I was inspired to write, because as I was zoned out reading the most recent issue of TIME magazine, Abby was trying to get my attention.

I've become very good at tuning out the world around me as I read, much to my husband's, and probably my children's, annoyance. But I'm pretty sure I've heard other mothers speak about this ability before. It's a survival tactic if any of us are expected to maintain our sanity amongst the squeals and screams of sibling rivalries, adolescent girls and/or the communication break-down that so often IS Autism. I was deeply engrossed in TIME's "Best of..." list for 2009, when I realized Abby was saying, "Mom, I want to talk with you!"

Whoa! No whine? No scream? A simple and straight-forward, "Mom, I want to talk with you." Amazing? Sure. But not what inspired this posting.

When she finally did get my attention, it was to tell me that she wanted to watch another Super Why as the first was ending. After I'd set up the initial episode to play from the DVR, she'd demanded, "Put the remote controls away!" I had joked, "Yes, Ma'am!" as I put the remote "away." When I reminded her of her sassy-pants instructions earlier, she smiled, wrinkled her nose and did a little sniff/half-laugh at herself.

She appeared so grown up to me as she enjoyed our little inside joke. I enjoyed it, too. Had the room been filled with other adults, it's likely that no one else would have understood our little joke. It wasn't really all that funny and deserved little more than the sniff/half-laugh that she bestowed it, but to me it spoke volumes.

It was the first time that she and I really connected on a more mature, inside-joke kind of level. My little girl is not a toddler anymore. For the most part she has shed the habits of a toddler and is now a small child. And I like it. I'm relieved.

I was reminded of something a friend said to me once a few years ago. Her daughter was just three and Abby was still a baby. I asked my friend, out of curiosity, if she planned to have any more kids. She answered, "No. I don't do so well with babies. I love them, but I'm better with kids." It struck a chord deep within me and I've thought of that often over the years.

I think it struck me, because at the time I was feeling guilty that while everyone around me was counseling me to "enjoy them while they are this little, because it goes by so fast," I was daydreaming about the day when I could have a conversation with Abby. I was longing for a little girl instead of a baby.

I was already keenly aware of how fast the time was flying, but I was grateful instead of sad. I knew what my friend meant. I adored my children as babies, but I'm happy to reminisce through pictures and memories, while making new ones. I might occasionally think warmly of Bean's tiny hand wrapped around my waist, tickling my skin as he nursed, but those memories are also accompanied by memories of sleep-deprived days when I was not at my parenting best. And while I might miss the feel of their tiny bodies in my arms, I do not miss those times when I felt downright "crazy". Not one bit.

I'm trying my best to enjoy these moments when my kids are small, because I know these moments are fleeting, but I'm so looking forward to inside jokes, hearing stories from my kids in addition to me telling stories to them and having real conversations with them.

It's the collective chapters that make a whole story. Like with every good book, I can hardly wait to get to the next chapter and in the end, as I finish the last chapter of our book, it will surely be bittersweet.

(All photos by Grandma Mary Johnson)