Sunday, February 27, 2011

Seasons Change

I had a rough day today so I went in search of fairies. I needed time by myself as moms sometimes do, so I stole away to my own little fairy place.

I found the clearing where they have their gatherings.

 Where trees become rocks and rocks become trees,

And as I walked further, I found the place where the fairies live...

In an old hollow stump, far away from everything.

Shhhh... a fairy!

And in a blink of the eye, she was gone. 
Along my path I found one of their hidden places. 
In the summer it will be covered in green, but winter laid it bare... 
visible to the meandering fairy hunter.

So I simply stood and stared in wonder at the reaching vines that made this lovely fairy dwelling.

I could imagine young boy fairies swinging like Tarzan from vine to vine, then letting go and fluttering down to the leaf-carpeted earth on delicate, translucent fairy wings.

Look! A fairy apartment building!

And after my walk among the fairies, I went back into town for a little retail therapy where I found these...

But I didn't buy any, because I'm too cheap.

You see, today I took the dogs to the vet where I learned that my sweet Brandy Ann has cancer. If we had plenty of money, of course I would have the vet do what they can to lengthen her life. As it is, we don't have extra funds. Brandy has also suffered from terrible allergies her whole life and has had to stay on a steroid called Prednisone. Taken for short periods of time, this medication is a good thing for those who need it, but taking it for years and years... well, after this long it will have damaged Brandy's organs. 

So for now, we'll keep chasing fairies, knowing that sooner or later, all fairies blink out. One never knows how long a fairy will stay, but the memory of seeing a real fairy... well... that lasts forever.

 Artwork by C. Atkinson.


Wednesday, February 23, 2011

The Call of the IEP, The Grapes of Aspergers, Crime and Punishment and Other Great Classic Stories of Parenting...

Now if that title doesn't suggest a future best-seller, I don't know what does!

Yesterday the hubby and I went in to help author our family's second IEP. In case you're wondering, IEPs are not like potato chips. You CAN have just one... We just have this little tendency to defy the odds and all sense of logic - but I digress.

It goes without saying that if you have a child with Down syndrome, you will likely be called upon to peruse the pages of an IEP on a yearly basis. If you have a child with Down syndrome and another child with Aspergers, you will find yourself with stacks of papers amassing in the strangest of places, detailing every possible way the little fruits of your loins are NOT like the other children. Good times!

Admittedly I went into yesterday's meeting with a bit of a chip on my shoulder. You see, last year I requested testing for Iraq in the hopes of getting an IEP set up. Unfortunately not only had her teacher never heard of Aspergers, but the school psychologist and the specialist who performed the testing didn't think Iraq seemed "autistic." Why do we keep coming back to the old "but she makes eye contact" thing? They also decided that since she tested within the "average" range on all the academic scales, that it was not necessary for them to provide any extra help. Needless to say, I was frustrated!

We were thrilled when we learned of the opportunity to switch Iraq to the same elementary school that The Skink goes to, and even more pleased to learn Iraq's 2nd grade teacher has experience with children in the autism spectrum... and yes, she's heard of Aspergers... and she even recognizes the "Aspie" things that Iraq does and understands why she does them AND she employs techniques to keep Iraq on track! Thank goodness. Yet going into the IEP meeting, I was ready once again to be told that Iraq had tested within the "average" range academically, and be asked the question, "Well, what do you want us to do?"

Much to my relief and consternation, that is not what happened. Yes - Iraq did test within the average range academically, but they also recognized that Iraq has some unique "qualities" that require more specialized attention and guidance. Wow! School officials that understand that a kid can have an IQ within the normal-to-high range AND have special needs! Oh my! These people may have not only stepped OUT of their box, but re-assigned their box as a place to put out-dated material! Call Big Brother and warn him that someone is thinking!

I can't tell you how happy we were with the meeting! (Yes - it's top secret information!) No... Let me rephrase that. I mean I can't find adequate words to express the joy I feel over being understood and listened to, and from having Iraq be understood (at least to the degree that the school understood that Iraq needs someone to invest lots of time trying to understand Iraq and that Iraq is a person who may not ever be fully understood but that the very act of trying to understand Iraq will be beneficial to Iraq's understanding of the world and to her academic life... understand?).

Is it strange that I am happy about getting an IEP for my child?

Anyway, we are happy.

It also came up that Iraq's kleptomania (impulsive stealing) is still alive and well despite efforts from both home and school to exterminate that nasty little issue. We noticed that the school has a Sheriff's Office liaison - a police officer who spends a fair amount of time at the school. The next time Iraq steals something (which will likely be today) she will be arrested.

Yes. You read that right. Arrested.

Call it tough love, call it imposing permanent psychological trauma on our child, but because we have exhausted every other possible deterrent we could think of, we are going to try it. Think about it. The kid steals regularly at age 7. This does not bode well for her future... or ours as her bank account, bail bond providers parents.

On a completely separate subject (just because I like tangents and I'm dragging you along for the ride for my own personal entertainment) I am reading Thinking In Pictures by Temple Grandin. If you have a kiddo in the autism spectrum, read this book! If you ARE in the autism spectrum, read this book! Even if you are neuro-typical and don't know anyone at all in the autism spectrum, read this book! It is amazingly insightful and a very interesting read!

* I am not receiving compensation of any form for the promotion of this book. If you are the author, publisher or a reseller of this book and wish to compensate me for this glowing review, please contact me as soon as possible and I'll let you know where to send the check.

I have mentioned in prior blog posts that I myself have Aspergers. Reading Grandin's book has proved amazingly enlightening for me. I never realized neuro-typicals were so weird! (Just a little Aspie-humor thrown in there). The title for starters - well... I never realized that people could think without pictures. Yes - every last word in my vocabulary conjures an instant visual association. Suddenly a lot of puzzle pieces from my past are coming together, like why it took me longer than other kids to learn to read a clock with hands, count money, and why to this day I still don't spell well. Prior to having a visual concept of what "yesterday" is (I now visualize 3 days from a calendar appropriately labeled "yesterday," "today" and "tomorrow" in that order) it was nearly impossible for me to understand the concept of the word.

Well, I think there might be some legal copy write issues with my rewriting Grandin's book here in my blog just to share my excitement with you over it, so I'll stop there and just reiterate my opinion that you should read this book! And they even have it for Kindle (which is how I have the opportunity to read it... it's not like I would ever have the opportunity to venture into the grown-up section of an actual book store... at least not without 2 kids griping incessantly over being dragged into the "boring" section!).

So I'll leave you with that. And because I usually put tons of photographs in my blog which makes me feel like I'm depriving my cherished readers of visual stimuli in this particular post, I will now overload your senses in one fell swoop with this:

Feel better?
What do you mean "headache?" Oh... sorry.

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Sunday, February 20, 2011

A Bigfoot Sighting in Virginia!

My girls have a favorite television show called iCarly. The other day an episode came on where Carly and her friends went in search of Bigfoot. It sounded like a good idea... after all, a person should know who lives in her neighborhood, right?

So among the first signs of spring, Iraq, The Skink and I went on a Bigfoot hunt!

In the event that we caught our very own Bigfoot, The Skink prepared a place for him or her to reside. We've heard they smell bad, so we certainly don't want it sleeping at the foot of Iraq's bed!

We looked high...

and low.

We climbed huge mountains...

and even performed a thorough aerial search for the elusive creature.

We looked in every corner of our round park,

but after days and days, or at least an hour, we finally had to give up and start on our way back home because it was almost nap time.

We were walking up the hill, and suddenly Iraq shouted, "There's Bigfoot!" We froze in our tracks, our blood running like ice through our veins. Our hearts pounded (it is a pretty steep hill)...

And at last, we had made an amazing discovery! Apparently Elmo lurks in the back yard of some local retirees, and he's gone green! But alas... as much as we love Elmo, he wasn't the monster we were looking for. Feeling a bit dejected, we went home, and guess what?

We FOUND Bigfoot!


A really cute one, too!

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Thursday, February 17, 2011

Aspergers and Girls, Girls With Aspergers and Everything In Between!

Current statistics suggest that autism affects 1 in 110 children and 1 in 70 boys. Those are amazing findings really, spurring a lot of people to wonder about the huge "spike" in autism over the last 3 decades. Honestly, I don't believe there has been as much as a "spike" as the statistics would have us believe. It is my belief that the spike has actually been in the proper diagnosis of autism, and not a huge rise in actual cases.

Only 30 years ago, we knew much less about autism than we do now. I think that literally hundreds of thousands of people with the disorder were lumped into the "Mentally Retarded" or "Mentally Ill" categories just a few decades ago. In fact I know a 25-year-old man - the son of some very close friends - who couldn't be more of an "Aspie" if he had "Aspergers" tattooed on his forehead and bore the name Sheldon Cooper (Big Bang Theory), yet he was diagnosed as ADHD with a possible personality disorder throughout his school years. He struggled, but never received special help since he was clearly very intelligent. His poor parents heard no end to the whole "He just needs to apply himself better" song and dance from doctors and school officials.

The statistics also suggest that far more boys are in the autism spectrum than girls. Although this may be true to some degree, I also believe that currently girls are less likely to receive a correct diagnosis of an autism spectrum disorder. In fact, we waited years to get a correct diagnosis for Iraq.

Why are girls less likely to be diagnosed with an autism spectrum disorder than boys?

This goes back to that age-old problem of medical science placing the vast majority of resources into studying males and simply assuming that females would obediently follow along in their presentation of medical disorders. This is why there is a push right now in the medical community to publicize emerging facts that heart attack symptoms are *different* in women than they are in men. The symptoms are different? It's freakin' 2011 and we're just telling people this now? Heart disease is the number 1 killer of women, but it took us this long to figure out that the symptoms in men and women aren't the same at all?

Welllllllllll...  The same thing is true for diagnosing many issues, including autism spectrum disorders. While some doctors are privy to this enlightenment, there are still many who are muddling about in the dark ages of demographic diagnostics. Here is a *very* simplified and brief list of differences:

Because females are wired to be far more emotionally and socially aware than males in general, the differences in the way autism spectrum disorders manifest in females can be rather remarkable.

From the time Iraq was a small baby, we told her pediatrician that we though something was amiss. The doctor who happens to be one of the best pediatricians in the North Dallas area would reassure us time and again that Iraq was well within "normal" parameters and was likely just 'sensitive."

When Iraq was 3, we took her to a specialist who slapped a diagnosis of Oppositional Defiance Disorder on her and showed us the door. When Iraq was 4 we moved from Texas to Virginia and took her to another specialist who felt she was ADHD. He insisted he did not see any of the "typical" signs of an autism spectrum disorder because Iraq made eye contact. (Don't you feel better knowing that an ASD in girls can be properly diagnosed based upon ONE symptom mostly present in BOYS?) Yeah... didn't think so!

When Iraq was 5 we took her to a different specialist in a different town. A female specialist. A female specialist who did her homework on the difference between boys and girls. To start, she gave us a diagnosis of PDD or Pervasive Developmental Disorder which is a rather non-committal term for a person showing some symptoms of being in the spectrum. At least we were finally on to something!

It took 5 more doctors of different specialties (the same awesome female specialist mentioned above sent us all around town) and another year before we landed on an diagnosis of Aspergers! Whew! What a ride!

Of course now Iraq is 7-years-old and we can really see the ASD behaviors now we know more about the diagnosis and what to look for.

atypical use of toys - lining up instead of make-believe play

The moral of this story is that if you are not satisfied with one doctor's opinion, get 10 more! Don't assume a doctor knows everything - especially as new information comes out every day. Don't assume that if you read a list of symptoms that any females were used in the study that determined what those symptoms were.

 Social issues

After all - it has taken us this long to make it publicly known that the symptoms of the leading killer of women - heart disease - are different in women than they are in men. Autism is not a leading killer, so it is safe to assume we still have a long way to go before autism spectrum disorders are properly diagnosed in girls as quickly as they are in boys.

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Monday, February 14, 2011

Weekend Getaway!

That's right, folks! Just when you're getting tired of winter, what could be more fun than an indoor water park in February?

On Thursday we put the kids in the car as soon as they got home from school and drove down to Myrtle Beach, South Carolina. We do have friends down in the area, but as a number of family members have just been recovering from the flu, we decided against sharing our germs with people we actually like.

I tried to get some pictures of the water park, but...

The lens fogged up in the humidity :(

The suite was beautiful! Two large bed rooms, a full kitchen and living area and an ocean view too! Just the kind of place that makes you want to lick your plate...

 and find all kinds of neat, new hiding places, like this one:

 And this one:
And this one:
And this one:

And this one, again:

When you're on vacation it is like an unwritten rule that you should try new food combinations!

And it is absolutely mandatory to sleep late at least one morning.

And when you are awake and in your suite, don't forget to enjoy the view!

Aside from a couple of us fighting post-flu sinus infections, we all had a wonderful time! We all spent hours in the water. Iraq rode the huge water slides at least a hundred times, Broadway found other teens to play water basketball with, and The Skink loved trying to swim with Mommy or Daddy supporting her under her chest. In short, none of us wanted to leave, but the kids had to be back in school on Monday.

Speaking of school, The Skink must be paying attention. The other day I gave her a pencil and some paper to keep her busy, and she wrote this:

While to some it may look like some scribbles on a piece of paper, Mommy can tell you that she WROTE HER NAME! Yup - totally bustin' with pride here!