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 Pokémon....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.
Wednesday, September 2, 2009
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 ;-)
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 ;-)
Monday, March 30, 2009
Why does it have to be so difficult?
So.....what do you do when your spouse doesn't GET the issues that your oldest child, who happens to be an Aspie, has??? I mean, c'mon....seriously. I *know* that it's been difficult to deal with....I *know* that it's hard to understand....but, damnit, we HAVE to deal with it correctly or there's going to be bigger issues down the road.
We got Bubby a Nerf "protecter" for his Nintendo DS....much needed, especially since Lil Man likes to grab things from your hands and throw them....down the steps. Yeah. So, got the protector, put it on the DS and after spending about 10 minutes with it on, Bubby wants to know can he take it off....he doesn't like the way it feels on his hands. Duh. It didn't even occur to me (us) that he may have sensory issues with it.....he's particular about what he feels on his skin....and he doesn't like "rough" feeling stuff-no one does but what's "rough" for him isn't necessarily rough for someone without sensory issues. So, when he came to us and asked if he could take the DS out of the protector as long as he wasn't up and walking around because it "feels funny" ....well, I didn't really think it was a big deal. But nope, Randy had a fit over it. And when I told him that it's likely a sensory issue and we should give him time to adjust to it. He said he (Bubby) needs to keep the damn DS in the protector and just adjust. *scoffs* Because it's just easy peasy pudding pie for Bubby to "adjust", right? He still doesn't like to feel a shirt's cuff seam on his wrist.....but now, about 5 yrs later, at least he's not still tearing holes in the sleeves so he doesn't have to wear them anymore. Or, what about the seams on socks? It's pretty dang hard to find seamless socks let me tell ya, but I do it because it just bugs him so much. Any kind of ribbed or textured shirt? Not getting worn by Bubby....it's either "itchy" or just plain ole "I don't like how it feels Mooooommmm". So, am I going to force him to use the protector all the time? Heck no......as long as he's sitting down I don't see that he needs to keep it in the protector.....but if he's up and about? Yes, he'll need to have it on.
Last week we had a pretty special night..... Thursday night they had an awards presentation at Bubby's school for kids who scored "Proficient" or "Advanced" in Communication Arts and Math. He got medals and certificates for "Proficiency" in both subjects! We are soooo PROUD of him! He told us after the presentation that he wants to get "Advanced" next year and I was like "Wow! He's got some high goals for himself" .....which he promptly shot down when he finished his announcement with "because the Advanced medals have way cooler pictures on them Mom!" LOL......
In other school news......Bubby has completed most of his IEP goals. One or two of them he's having issues with, but, his speech therapist/case manager says that she expected it because the curriculm is getting more difficult. He's still got all A's and B's on his report card so I'm pleased.....but, am accepting right now that the IEP will have to be redrafted for his move to 5th grade this fall. Hopefully I'm better able and equipped to deal with all the meetings and such this time around.....last time I was a nervous wreck and had major panic attacks. However, we'll be dealing with the same people-with the exception of his teacher of course- so I expect that it will be somewhat easier on me.
Now I'm off to dig up info to share with Randy about sensory issues and Aspergers and ADHD.....wheeeee!!
We got Bubby a Nerf "protecter" for his Nintendo DS....much needed, especially since Lil Man likes to grab things from your hands and throw them....down the steps. Yeah. So, got the protector, put it on the DS and after spending about 10 minutes with it on, Bubby wants to know can he take it off....he doesn't like the way it feels on his hands. Duh. It didn't even occur to me (us) that he may have sensory issues with it.....he's particular about what he feels on his skin....and he doesn't like "rough" feeling stuff-no one does but what's "rough" for him isn't necessarily rough for someone without sensory issues. So, when he came to us and asked if he could take the DS out of the protector as long as he wasn't up and walking around because it "feels funny" ....well, I didn't really think it was a big deal. But nope, Randy had a fit over it. And when I told him that it's likely a sensory issue and we should give him time to adjust to it. He said he (Bubby) needs to keep the damn DS in the protector and just adjust. *scoffs* Because it's just easy peasy pudding pie for Bubby to "adjust", right? He still doesn't like to feel a shirt's cuff seam on his wrist.....but now, about 5 yrs later, at least he's not still tearing holes in the sleeves so he doesn't have to wear them anymore. Or, what about the seams on socks? It's pretty dang hard to find seamless socks let me tell ya, but I do it because it just bugs him so much. Any kind of ribbed or textured shirt? Not getting worn by Bubby....it's either "itchy" or just plain ole "I don't like how it feels Mooooommmm". So, am I going to force him to use the protector all the time? Heck no......as long as he's sitting down I don't see that he needs to keep it in the protector.....but if he's up and about? Yes, he'll need to have it on.
Last week we had a pretty special night..... Thursday night they had an awards presentation at Bubby's school for kids who scored "Proficient" or "Advanced" in Communication Arts and Math. He got medals and certificates for "Proficiency" in both subjects! We are soooo PROUD of him! He told us after the presentation that he wants to get "Advanced" next year and I was like "Wow! He's got some high goals for himself" .....which he promptly shot down when he finished his announcement with "because the Advanced medals have way cooler pictures on them Mom!" LOL......
In other school news......Bubby has completed most of his IEP goals. One or two of them he's having issues with, but, his speech therapist/case manager says that she expected it because the curriculm is getting more difficult. He's still got all A's and B's on his report card so I'm pleased.....but, am accepting right now that the IEP will have to be redrafted for his move to 5th grade this fall. Hopefully I'm better able and equipped to deal with all the meetings and such this time around.....last time I was a nervous wreck and had major panic attacks. However, we'll be dealing with the same people-with the exception of his teacher of course- so I expect that it will be somewhat easier on me.
Now I'm off to dig up info to share with Randy about sensory issues and Aspergers and ADHD.....wheeeee!!
Subscribe to:
Posts (Atom)