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!

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)

Blogging at 1 a.m.

I should be sleeping and my new laptop (yayyy!!!) is begging to be plugged in, but... I'm going to blog anyway.

We had an interesting afternoon today. Abby went out with her dad to run errands. They arrived home and I heard Abby screaming all the way in from the car to the house.

Whine, whine, whine, scream, whine, scream, scream, whine, whine.

That's pretty much how it went. I asked him if everything was ok on their errands. He said that she she had been fine. She wanted to stay outside, but he said she could go back out after lunch. I asked him if it was ok with him if she had a picnic outside on the deck. It was a brisk, but beautiful day. He agreed. Meanwhile, Abby laid on the floor and screamed through this whole conversation.

Scream, scream, whine, scream.

We tried over and over to assure her that she was indeed going to go back outside. We told her she needed to wash her hands before lunch, like usual.

Whine, scream, scream, whine, whine, scream.

"Abby. As soon as you wash your hands..."

Whine, scream, whine, scream, scream, scream.

you can go outside!"

Scream, whine, scream.

Hands washed, screaming the entire time, Abby was "escorted" outside, where she screamed some more about wanting to be outside.

Ummm... she IS outside.

She screamed until I sat in front of her, face in my hands saying, "Abby you ARE outside. Shh, shh. This is what you wanted. You're outside. It's ok. Stop screaming. You are OUTSIDE." I asked if she needed a hug and she took me up on that offer. She felt a little limp from all that screaming she'd done.I've been noticing lately that Abby has a tendency to hear what she wants to hear and sometimes, apparently, what she doesn't want to hear. Maybe this is human nature, whatever that means, but with Ab, she really has a hard time letting go. Once it's in her mind, it's stuck there, until something jars her attention to reality. And unfortunately, that can take some time. And can be a pretty loud ordeal. Ugh. Exhausting... for everyone involved.

Now before you start praising me for being so patient and understanding and you "don't know how I do it"(which I really appreciate btw)... I was not all patient and poised. I raised my voice a couple of times. I tried muffling some screams in an attempt to keep Bean from being woken up. Abby's dad and I had to trade tasks a couple of times to let the other one take a breather to regroup. I was glad he was there. We make a pretty good team. Keeping each other in check. Giving each other an understanding and knowing glance. Sometimes making the situation worse, by giving in to our frustration and taking it out on each other. But in the end, we love each other more for it. No one knows our child better than we do. We're all in this together. Thank, God!

Spinning

Abby spinning round and round on the swing.

I so remember doing this as a young girl.

She even let her brother take a turn.

I've Been Thinking...

I do a lot of thinking. Maybe too much sometimes. It keeps me awake at night. But what I've been thinking about lately has got me reevaluating why I keep this blog. It all started with that poor little "balloon boy" and the supposed hoax orchestrated by his father. Then I started thinking about that show on TLC, Toddlers & Tiara's and that got me thinking about the whole OctoMom thing. Maybe not the most seamless stream of thought, but I'm not a professional.

What do I have in common with these people? Not much, really. Other than that we all have children and we all put our kids on display. I like to think that I'm not in the same category as these people. I'm not fake-crying on the news about my not-missing-so-much-as-hiding poor, exploited kid. I'm not making Abby get a spray tan and her teeth whitened so she can earn that big sparkly crown. I'm not giving birth to 8 kids (THANK GOD) and then talking about it all over tv with enormous, collagen injected lips. But I am writing a blog about and posting pictures of my daughter on the Web. Is it any better?

Sure I tell myself that it's my way of raising awareness about the Autism epidemic. I make efforts to keep our specific location a secret, but I know that it's not hard to figure out our general vicinity. I use caution when I choose the photos I post, not wanting to show anything too specific to our home or town. Am I exploiting my daughter? Writing this blog has been so therapeutic for me. Not only does it allow me to share our story, but I work through some of my least proud parenting moments and then am able to reflect and find the good in each experience we have.

And the most wonderful part of writing this blog is all the great feedback I get from all of you! I've made a wonderful blogger friend who I seem to have a lot in common with. And I'm increasingly blessed by the comments I get from parents of "typical" kids, because I'm reminded that parenting is the most challenging blessing we've ever been bestowed whether our kids are "special needs" or not. And all of these things are good and noble, but when I'm really honest with myself... I write this blog for me. I hope that it helps other people, but at it's root, it's all about me. So why isn't it filled with photos of myself? Am I exploiting my child for my own personal gain no matter how noble my intentions? I don't know.


So today... I'm posting a photo of myself. This is me and while I write about my daughter, Abby the Gentle Giant, this blog is all about me, me, me and my quest to be the best mom I can be. Should I be writing a blog about it?

Maybe I should only post photos like this zoomy accident of both Abby and I.

The Symphony- Take One

We are music fans in this house. All types of music.

From Tchaikovsky to Tori Amos.
From Miles Davis to Metallica.
From Bocelli to Radiohead and so on.

We love it all.

Abby goes to sleep each night listening to They Might Be Giants' Here Come the 1-2-3's. God forbid something ever happen to that cd. The earth might implode. But that obsession is for another blog posting.

Once while playing with Play-doh and listening to the Opera music station that is part of our cable package, Abby suddenly stopped during a particularly melancholy part of the song to listen. Her breath caught and her eyes welled up with tears as the music crescendoed (is that a word?). She was overcome with the emotion of the song. (Does she speak Italian?) She took a deep breath and then proceded with her Play-doh sculpture. When I remembered to tell her Dad about it a couple of days later, he said she'd done almost the exact thing one day while playing with blocks and listening to Classical music. This shouldn't surprise me. Classical music makes me cry, too. It's just sooo beautiful! It makes my heart feels like it's going to explode.




We were recently gifted (thank you, D & M) season tickets to our local symphony and when Ab's dad was going to be out of town for the first concert of the season, we thought we'd try to take Abby to see the show, Beethoven's Ninth. Now we knew this was a risky venture. I prepared myself to leave early and prepared Abby by telling her,

"The music is going to be loud, but we have your ear plugs and you can hold your hands over your ears if you want to."

"It's going to be dark, but it's just like the movies and you will have your blankie snuggle and Mama will be sitting right beside you. You can sit on my lap if you'd like."

We bought her a new dress and new tights, which she adorably calls "pants socks". We got all dressed up and loaded into the car. As we were walking toward the Frauenthal Theater, I pointed out the lights on the building and Abby put a little more spring into her step. As we got into line, all the old ladies "ooohed" and "awwwwed" at my cute little girl. Men gave us skeptical looks, but smiled anyway and Abby exclaimed, "This is so exciting!" My heart melted.

We made our way to our seats and sat down. I tried preparing her by whispering everything that was about to happen into her ear. The lights dimmed and the concert master, Jenny Walvoord, entered the stage. Abby sat up straight and clapped enthusiastically with the rest of the audience. "The conductor will come out next.", I whispered. And when Scott Speck made his entrance, she clapped again. She looked so grown up and excited!

The lights went dark. I felt Abby get nervous beside me. I gave her her blankie and a snack and kept my hand on her knee to let her know I was there. Then the music started. And Abby panicked. It was so loud and the sound resonated deep in our bodies. It was more than she could handle. She was in the early stage of a full-blown meltdown. We hurried quickly out of the theatre and into the hallway. I tried to convince her to listen to the music in the hallway and then try again at the intermission, but she was having none of it.

"The symphony is scary!" she told me.

Oh my. Well I hope she doesn't feel that way when we try again next year or the year after. I thought she'd make it through at least a few songs, but oh well. I'd prepared myself for it. On the way home she said, "Thank you for driving me in the car to the sympony, Mama." I think she just enjoyed getting all dressed up and going to the symphony, even if we didn't stay for the show. It was worth it for me. And apparently it was for her, too. And besides... she loves her new "pants socks".

School and Some Small Miracles

Sorry it's been so long since my last post. I really need to just schedule time to do this. Abby started school a week and a half ago. She is going in the afternoons this year and that has been a bit of an adjustment for us. She gets antsy waiting for the bus and I feel like it's near impossible to make plans for the rest of our day, because smack dab in the middle of it all, I have to be home to get her on the bus and then 3 hours later, be home to meet her off of the bus. I've already had to make 2 emergency calls. One to my father-in-law, "Can you hurry to our house (20 min away) to get Ab off the bus?" and one to the bus depot, "Can you switch up your route today and drop Abby off ten minutes later?" I was stuck in road construction which is EVERYWHERE right now. Ugh! I'm sure they just LOVE me. The frazzled mom, still in her pjs at 1 pm, helping her kid onto the bus. Or I'm running behind (as usual) and making everyone else work around it. Will I ever get it together?! I keep trying.


Well enough about me. Abby is doing great in school. She comes home happy each day. I really like her teachers and thankfully, so does Abby. She talks about them at home quite often. She likes to say that she is going to go on a picnic with them and then list what foods she'll take. I mentioned in my last quick post that she's been babbling talking a lot lately. Most of the time it's AMAZING, but often it's the same story over and over and over again. Like the picnic. There are only so many times in a 2 hour span that I'd like to have that conversation, but if Ab's stuck in that storyline, we talk about it for two hours. At least.


We did have a communication exchange the other night that blew my mind! We were in their bedroom and I was about to change Bean's poopy diaper, when Abby said, "NO! It stinks! Better change it in the kitchen." Now for someone with typical kids, this isn't a big deal. It's a logical request (except that we don't change diapers in the kitchen normally). But for those of us who have been dying for some sort of communication from our children for a long time now, this is AMAZING!!!

She 1) expressed her opposition to the situation with words and without screaming, then she 2) expressed why she was opposed and then she 3) suggested a solution to the problem. I was thrilled! Now that is communication, Baby! And of course, Bean and I went into another room to change his diaper. YES! There appears to be a light at the end of this tunnel.

This last picture is of Abby's little brother, Bean, on Ab's first day of school. He was so upset. There was nothing I could do to make him happy that day. This photo was taken after I'd tried EVERYTHING and finally resorted to giving him his pacifier, blankie and put on a movie for him. He was so mad at me, I'm guessing he missed his sister, that he refused to come out of the doorway. He could see a sliver of the tv and this was as close as he would come to the living room... and me.