Monday, September 28, 2009

Feels Like Starting Over....and Other Ramblings

We're coming up on the new school year's IEP meeting and I couldn't be more nervous. New school year, new *school*, new teachers (as in 4 of them!), new classmates...new new new new!

I don't want to rush into a judgement here but, I've gotten little vibes here and there that tell me that *this* IEP team may not be as easy to work with as last year's. I think that to an extent they wonder exactly why does Trace have an IEP in place. Granted, he has made some incredible strides over the summer that have helped him to be a little more open socially, but there are still other issues and LD's to contend with. I blogged before about the equine therapy he's doing and I believe, thru the therapy, he's becoming more confident in himself and his skills/talents. He's reached out to a few boys in his class that his teacher refers to as his "crew", lol, they eat lunch together and play at recess. I'm beyond thrilled that he's come so far since last year when he walked the playground by himself, picking up rocks or trash or whatever else he found. Yet, at the same time, put him in a social setting outside of his "norm" and all of his Aspie quirks come out to play. He's stretched out more shirt sleeves and shirt hems than I care to count...he get's anxious/nervous and he'll pull his sleeves down over his hands and twist and pull, same with the shirt hems.

Don't even get me started on his sensory integration issues. Oh my word. The boys had to get haircuts Friday evening because they were having pictures taken the next day with grandma, so off we went. Trace has always been a little skittish about haircuts but not too bad, and Landon is just fine as long as you don't try and wash his hair. But, Friday night? Holy moly, Trace was off the charts skittish...he shied away from the clippers (the sound *and* feel of them) and when the lady tried scissor cutting, he would pull his head away every time she combed up a section to snip at. Bless her heart, she was very understanding and finished his cut and said it was no problem...sigh... Landon however, once he realized she was *not* going to wash his hair was just fine and sat perfectly still. Go figure.

Anyhow, back to what I started with on this entry. Nervous, anxious...I haz it. I'm almost treating it as if I'm starting the whole process from a blank slate. I've been scouring the interwebs looking for new information, finding some of the same information that I've already collected and reading it all again as if it were brand new to my eyes. Thankfully it's been a reminder to me to stay on my toes with the teachers and IEP team members. I'm also learning about certain assessments and testing that I can request that have no been done but probably should be....and I'm learning how to make these requests as an advocate, not just a parent.

Which leads me to my final thought in today's entry. Over the last few months, as I started my research anew, I decided that I want to write. Not a book, no....more like articles/papers, regarding ASD's, Aspergers', advocacy, experiences we've had....a whole variety of things. To accomplish that efficiently, we need a computer at home...specifically, I'd need to get a laptop or netbook etc. Does anyone here have a preference or referral? I need to be able to do word processing, interwebs browsing, some pictures....oh, and it needsto be cheap. Right now, we can't justify the purchase (what with speech therapy and equine therapy etc etc)and, as much as I dislike doing so, we're going to have to put it off until we can save for it.

So, opinions guys? Pretty please? =)

Thursday, September 17, 2009

An award?? Really?!? Squeeeeee!!!



LOL....sorry for the squeeing, I never expected to win any kind of blogging award! I need to apologize first and foremost for taking so long to respond to this!

Laura, I'm humbled and thrilled that you thought of me, thank you! You all need to check her out at iamtheglue I think you're quite an amazing person....what with having a newly dx'd kiddo on the spectrum (and plunging head-first into all the reading and researching and googling that goes with it) and spear-heading the pilot Autism Ambassadors group for Derek's school; you also work a FT job that has been stressing you out, suffer physical pains every single day.... you ALSO are an incredible mom to *7* children (shoot me now, gah....I don't know how you do it!). I am tired just *typing* all those things out....and I'm quite sure I didn't hit everything (like, oh, I don't know...cleaning the house? Taking care of hubby? Doing laundry? Etc etc).

Now! It is my turn and here are the rules...
• You must thank the person who has given you the award.
• Copy the logo and place it on your blog.
• Link to the person who has nominated you for the award.
• Name 7 things about yourself that people might find interesting.
• Nominate 7 other Kreativ Bloggers.
• Post links to the 7 blogs you nominate.
• Leave a comment on each of the blogs to let them know they have been nominated.

Seven things about me that are interesting...well, at least seven things about me, lol

1. I crochet to help relieve stress and unwind.
2. I love love love reading!
3. I volunteer with a dog rescue, breed specific Small Paws
4. I absolutely loathe doing laundry
5. I have a secret obsession- I love Kid Rock's music!
6. I am awful at Mafia Wars on Facebook.
7. I have enough yarn that my husband says I should open my own yarn shop

Seven amazing bloggers that I want everyone of you to go and visit-

Amalah
I don't remember exactly when or how I came across Amy's blog, but I *can* tell you that it's been a mainstay on my list of "must-read" blogs, lol. She is incredibly gifted -She's funny and serious, snarky and sympathetic, all the while not afraid to say it like it is. She's got 2 gorgeous boys and shares pictures of them all the time. She's fun to read, she can (and will at any given time) make you laugh, cry and/or say "Exactly!" or "Whoa, been there, done that-not fun". I'ma shut up now, go read Ms. Amy!

Yarn-A-Go-Go
Rachel is a truly remarkable woman. She's a knitter (which is how I got "hooked" on her blog-sorry, couldn't resist the pun!), she's a writer (her first book comes out April of 2010...watch for it!) and lives in sunny California. She's got mad skillz in her knitting (she makes gorgeous sweaters), and her writing is fantastic.

The Kerrie Show
What to say about Kerri....wow. What *not* to say? Kerrie and I go waayyyy back, lol, clear back to high school (20 yrs this year! YIKES!). We recently reconnected thru Facebook and I've been reading her blog since! She's an awesome homeschooling mom of 4, with another on the way! She's also a writer, she's got an e-book out there, as well as lots of parenting articles!

Motherhood (Oh, And Everything In Between)
I just recently started reading Danielle's blog after "meeting" her (online) thru a mutual friend we have. She took the time to indulge me in a question re: special needs kids and teachers. Danielle is a stay-at-home mom of 3, 2 boys and 1 girl. Her blogs run the gamut of topics....I especially love reading about the antics of her kiddos!

Mariposa Farm Alpacas
Have you ever seen an Alpaca?? The owner of this blog is my cousin Deborah, we grew up spending parts of our summers together and I love her to pieces! She's an alpaca owner as well as a research scientist; she dances (and teaches dance), she sings and volunteers at her local zoo, she "tweets" and is active on Facebook as well. I don't know that there's anything that she *doesn't* do, lol. Give her a read, check out her Alpacas!

Fiona's Blog
Ahhhh....Fiona. Fiona is the daughter of another cousin of mine (Hi Aimee!). There's not tons of writing on Fi's blog, but whenever you need a "pick-me-up" you will always find beautiful pictures of Miss Fi! Her mama,Aimee, is also my cousin Deborah's sister- keepin' it in the family ;-)

My Life with Aspergers
This is a blog that I've learned so much from. The keeper of this blog is John Elder Robison- also author of "Look Me In The Eye: My Life With Asperger's". I've only recently started reading it, going back to the beginning, and it's helped me to understand so much about Aspergers. His blogs have taught me how to look at situations from the POV of someone who has Aspergers and challenges me to search out alternative solutions that I encounter with my oldest.


Holy Moly.... I am truly tapped out right now! I hope you all enjoy the blogs that I've linked too :)

Wednesday, September 2, 2009

Being blessed by Aspergers

The Gift of Aspergers Syndrome

I normally don't pay much attention to movie reviews. However, with the movie "Adam" coming out, I've been reading some of them here and there, eager to see what others think of the disorder that I deal with daily in my almost 11 yr old son. And then I read this review of the movie by Mr. Rex Reed.

http://www.observer.com/2009/movies/hugh-dancy-his-way-superstardom

I honestly didn't think my dropped jaw would be able to make it back up from the floor. I was shocked, upset, indignant, sad....goodness I can't even begin to list all the things that went through my mind. But the one thing that stuck there after reading it was......people are going to read this and get completely wrong ideas about people with Asperger's Syndrome, they will think that Mr. Reed knows what he's talking about...but, outside his circle of two Aspies, he clearly, *very* clearly, doesn't.

This is the paragraph that I wished he would have researched before he'd written it; talked to doctors, psychologists, psychiatrists….even....I know it's a stretch here but....maybe even talked with some Aspies (besides the two he knows)? Hugh Dancy, who portrays Adam (and does so very well), will tell you "no two persons with Aspergers are the same"....

Far from just another exotic Disease of the Week, Asperger’s is an incurable neurological disorder similar to autism that turns outwardly normal-looking people into high-class idiot savants. I know at least two people with Asperger’s. They are incapable of thinking of anyone or anything outside of themselves. Challenged by social interactions and given to obsessive routines that revolve around a single subject of interest, they do not like to be touched, they feel incapable of explaining things and they cannot cope with people in general. Emotionally blocked, they say things that hurt and sting without meaning to be rude, and are weak at understanding, receiving or exchanging the emotions of others. They cannot look you in the eye. Adam is a fascinating study of a rare affliction in which all of these qualities are evident, in carefully researched scenes that are humorous and touching. It is lethal to get involved romantically with any person with Asperger’s syndrome, since they care nothing about other people’s feelings, needs or priorities

I read that and just shake my head. Apparently he has had some bad experiences with the Aspies he knows. Unfortunately, there are people who will read his words and take it to mean that all Aspies are that way and that couldn’t be further from the truth. Perhaps the two that he knows (and I’m willing to bet he knows more and just doesn’t realize it) are exactly as he describes, but to paint all Aspies with the same brush does them a huge disservice.

Please know that I am writing this to be specific to Aspergers Syndrome (AS). I realize that while Autism and Aspergers are included on the same “spectrum” there is a world of difference between the two. I’m not an “expert” on either of them by any means…only on my own child who happens to have Aspergers.


To tell you what I mean by “spectrum” I’ve copied and pasted the following from the website of NINDS (National Institute of Neurological Disorders and Stroke):

AS is an autism spectrum disorder (ASD), one of a distinct group of neurological conditions characterized by a greater or lesser degree of impairment in language and communication skills, as well as repetitive or restrictive patterns of thought and behavior. Other ASDs include: classic autism, Rett syndrome, childhood disintegrative disorder, and pervasive developmental disorder not otherwise specified (usually referred to as PDD-NOS)


There are no two Aspies who are the same, there just isn't. There are characteristics of the disorder which you will find in one Aspie, but not another. And characteristics that you find in one won't even be a blip on the radar for another. Not to mention, the degrees of severity of the characteristics are different for each Aspie as well. My son Trace is almost 11 yrs old and he has Aspergers. However, he is not even remotely like the description that Mr. Reed gives us in his review. Trace is intelligent, yes (in the top 5% of his 4th grade class last year) but not a "high-class idiot savant". He is a loving, sweet, funny and caring child.....especially with family. He has a few friends and their interests tend to run to the same activity which, right now, is Pok√©mon....especially the cards, but he also likes Transformers and Star Wars. He loves hugs and to be hugged, or sitting next to us or playing with his little brother. Trace has no problem explaining things....unless it’s something he doesn’t know and then he will ask. He is honest, almost painfully so...but, I'd rather he tells the truth than lie. And he is not emotionally blocked- he loves, he hurts, he cares. He will look you in the eye. To say that it is "lethal" to get romantically involved with an Aspie....well, it's apparent that it's written by someone who is misinformed about Aspergers and those who have it. Trace may have certain things to learn and issues to deal with so he can be in a successful relationship…but, you know what? That sounds pretty typical relationship to me….and with the right person, you work together to help the relationship survive.

Almost without exception, they leave you perplexed, riddled with doubt and totally depressed

Ah, the last sentence. Does Trace perplex us? Sure....but, show me a child/person (with a disability or without) that *doesn't* perplex their parents/family/friends sometimes. I will admit to the “being riddled with doubt” point. I absolutely doubted myself when Trace was first diagnosed with Aspergers. I doubted that I could be the parent that I needed to be for him because..."hey, it took me (us) *10 yrs* to find out what was wrong with our son." ....and "hey, there's a TON of research that needs to be done and dr's and specialists to find and therapies to research, and IEP's to be fought for and teachers to talk to and the educating of family/friends/John Q Public and laws that need to be in place but aren’t so they need to lobbied for and more research to be done and advocating to do....and ...and .... and....and...." Depressed, oh yes….even prone to panic attacks. I was overwhelmed with the diagnosis, by all the “things” that needed to be done, all the things that I need(ed) to learn.

But, see, one thing I’ve learned over the last year and three months is this. There will always be research to be done, advocating to be done, learning to do, laws that need changing or needing to be put in place. The medical community is learning more and more each day about Aspergers. They are learning about the causes and the things that will help our kids- so they can learn to cope, learn to be (at least somewhat) comfortable in social situations, and learn to recognize what emotion is playing across the face of the person they’re talking to. And as we learn more about this disorder, the less I doubt myself.

I realize now that while I may have "off" days (and who doesn't?) I am totally and completely blessed with this child of mine. Yes, Trace will always have Asperger's Syndrome, it *is* incurable (guess Mr. Reed did get one thing right), he will always be more than average intelligent. He will probably not ever be totally comfortable in social situations (but neither are a lot of people I know who are neurotypical or, NT’s) but will learn to be more so than he is now because we have researched and sought out the help that he needs. He has the ability to focus and learn everything there is to know about whatever subject/topic that has caught his attention...and as that is subject to change every year or so, I expect that he will learn so much more than the average person. He will always hug me and accept hugs from those that he cares about.

Most importantly, he is, and always will be, my quirky “Little Professor” who is intense in his focus on certain things, who pals around with his little brother, who won’t always get the idioms that we utter, who will read and re-read books that he loves, who may say something “politically incorrect” but still be 100% honest, who may always include an awkward little pat on the back when he hugs, who may not always express his emotions outwardly, or understand the emotions playing out in front of him, who probably won’t look you in the eye for more than 2 seconds at a time because it’s just “too much”, who may never take a picture where there is no light in his eyes and the smile isn’t forced, who will never (by his own admission “Mom, I don’t *do* spontaneous”) do anything spontaneously and will always get so intensely focused on his Nintendo DS game that he won’t hear you call his name when you’re right next to him....but he will always, without fail, tell me “I love you MORE” when I tell him that I love him.

You have no idea what it means to be gifted with Aspergers Syndrome.

Yeah, so wow...It's been, awhile hasn't it?

What can I say? Life is busy....work is busier than life. It makes my head spin. But, I've found some new blogs to follow and I really just need to stop being lazy! I can post from my cell phone so really, no excuse.

A brief rundown.... Bubby started the 5th grade. It's in a different building that the elementary grades so we were afraid it would be a hard transition for him. Apparently not. At the back to school night 2 weeks ago, we were amazed at the things his teachers were telling us. You may (or may not) remember me talking about how at recess time Bubby would walk around the playground, picking up rocks or junk or trash, all by himself because he didn't know how to approach the other kids to ask to play. This year, 2 weeks into it, and he's got 2-3 boys that he plays with at recess (!!!) and sits with at lunch (!!!!) and in general, calls "his buds". Be still my heart. I never, ever, thought I'd hear this about him. Don't misunderstand me, he's still my Aspie (and always will be, there's no "cure" for AS) but, in some situations, he apparently can feel comfortable enough to initiate contact with a couple of his peers. And though we can't prove it, we believe that the equine therapy he's been doing over the summer has played a large part in that. He's been doing a program called H.O.R.S.E. (Helping Others Reach Success and Excellence), you can visit them at www.horsehelpspeople.org and we've seen some changes in him, good ones. If you'd asked me at the beginning of summer if I thought this therapy would help, I probably would have been iffy with my response. But, he went from never having been around anything larger than a Rottweiler, to actually *RIDING* the horse just last week. Color me surprised. And ecstatic!

On to Lil Man....ahhh....Lil Man. He's 3 and a half now, with an attitude of a hormonal teenager. One minute he's giving us kisses and in the next breath screaming at us for something. Or from sitting quietly next to the dog, and the next smacking them...he's gotten himself snapped at recently for doing just that. He's talking up a storm....though you can only understand about half of it. Speech therapy will be starting in the next few weeks (thru the school district's early childhood center)...he's excited about going to "school". I'm beginning to see early signs of ....well, *something*....and probably something on the spectrum, I just don't know what....it'll show itself eventually and we'll deal with it then I suppose.

A few weeks ago, I wrote a paper (an essay? a letter??) on Aspergers. It was mainly in response to a poor review of the movie, "Adam". Hugh Dancy is the titular character, a 20-something man with Aspergers who falls for his new neighbor (played by Rose Byrne). The movie had, up to that point when I read this one review, gotten nothing but glowing reviews and praise ....not only from NT's but from the ASD community-and at times, that can be hard to get. I'm going to share my "paper" with you in a new post shortly.

Hey, looky there....you get 2 posts in one d....wha? What do you mean that doesn't make up for all the unposted months?? Hmmph....fine. I'll post it anyways ;-)