Remember last year when I was all "SOMETHING IS WRONG WITH MY CHILD!!!" and y'all were all "...over-reacting, much?" and I was all "Maybe." Well I also said something that slipped past a few of you, but grabbed others attention.
My husband has A.S. (Asperger's Syndrome, those who have it are affectionately known as "Aspies")
Yes, the crazy genius nerdy children that are constantly in the medical/psychological spotlight recently, actually grow up to be real life human being adults. I know, weird. In fact, some of them are tricky enough to snag hot young thang's, (not unlike myself) wed them, and even procreate. Your mind is blown right now, no?
Well, it's Austism Awarness Month, if you haven't heard (and how couldn't have you? 1 in 88 American children are diagnosed with some disease/disorder/syndrome on the Austism Spectrum) and I'm doing my part by giving you some insight to what the marriage of an Aspie and a me looks like :]
A few months ago I really needed advice about how to get Norah to sleep through the night. She really needed and was ready to be night weaned, I was ready, Lily was ready, our neighbors were ready, shoot, my friends were ready if it got me to shut up about it. But there was one thing I couldn't really discuss with people- Eamon's help. I know how to night wean, I've heard everyone who's been successful with it tell their tale of "Daddy take the night feeding/rocking" and have just smiled and nodded. Why? Because that can't happen in our family. No, my husband isn't a complete a-hole who doesn't want me to get to sleep, but trying to explain to people that when Eamon hears Norah scream 'HOLY GLUTEN FREE CRACKERS, I'M DYING, I NEED BOOBS NOW!!!" at 2-4 in the morning, it causes a very, very different reaction in him than most of their husbands. And the few times I've said "Well, Eamon can't really do that" I've recieved the one eyebrow raised "Ooh...well...good luck (and tell your lazy ass husband to suck it up)" look. It's so cute. Not. And it got to me! So I attempted to make my "lazy ass husband" suffer through a few nights of crying, which caused hallucinations, night terrors, and a general shit week at work due to a fried sympathetic nervous system. Such a good wife, I am. All of this because this has kinda been...a secret. We don't really talk about it. Once you throw something like this out there, all of a sudden I'm "the one who's husband has Asperger's." Sure, I've wanted to pull it out on random d.i.c-youknowwhat's who try to tell my husband facts about knives or cooking like they're so awesome, "Dude, he has Asperger's, you really think he's gonna be wrong about this?!" or when trying to tell other ladies in idle chit chat "No, I mean, really, he doesn't actually HAVE empathy..." it's been the kinda huge pressure on my life. I hate secrets. [If you plan on telling me you're pregnant, you've got six weeks, TOPS to tell every other person I know]
So finally I brought this "burden" to Eamon. I had spent a night of research "Aspie Marriages" on google, and our outcome looked grim. All those hoes divorced their husbands because they couldn't deal with the differences and didn't make an effort to work towards their communication difficulties. I was pretty freaked out. Through this conversation, I now...have permission, that sounds weird...to talk more openly about how this little Syndrome effects our family.
Question 1:
Eamon Ferris Burke, husband of mine, what is Asperger's Syndrome and how big of a role does it play in your life?
-- "While there are clinical definitions constantly being refined and re-defined, they are primarily diagnostically focused, and aren't much help to the public--it's like telling someone your brother has Down's Syndrome, which means he has an extra chromosome(really helps, huh?). I would say that it means I am wired radically differently. There are a multitude of factors, which are listed on Wikipedia, the vast majority I experience. The majority of listed factors are socially related, because most psychologists are not Neuro-Typical, and NT people are very socially oriented. It's literally like I was born on another planet and sent here in a basket. I will probably spend a lot of time thinking on it and figure out what it is that ties it all together. If I were to explain the differences and how my life is different, I'd have to write a 400 page book.
Allow me to be coarse and potentially offensive. It's the only way I'll ever get to be honest with you.
Aspies are the eccentric geniuses. Mad scientist types. The guy who knows every dang thing but how to make friends. AS people have been part of history, playing such roles as Isaac Newton, Ludwig Beethoven, Thomas Jefferson, Bill Gates, Alfred Hitchcock, Andy Worhol, Bob Dylan, John Nash, Nikola Tesla, and many many others. There was a woman who said "What would the world be without Autism? A bunch of people, standing around in caves, talking about their social lives."
I have not been so derailed by a secular revelation as when I found out about AS. I felt like someone had stolen my identity from me, and whittled me down to a condition. A basket case, basically! I got over that. But I wondered why I didn't end up screaming at store clerks or how I got a wife. A few things played into that, but mostly is the following in order from least to most significant:
1. My father ran a very structured, rigorous household. This is great for an Aspie--every parenting problem I've seen of people with Aspie kids is because they fundamentally are not able to be as rigid and disciplined as their children are wired to be.
2. I am able to learn things abnormally quickly, adapt, and compute situations quickly. It is a minor and growing theory of mine that the folks that are known for being crippled by their AS are simply people whose mental capacity is not great enough to continuously crank the machine that is an Aspie mind. Aspies sometimes grow to suffer from anxiety related disorders, hallucinations, depression, and mental breakdowns. It is a horrendous amount of work just to function on a normal level as long as there are other people around. I am blessed with an enormous amount of abstract thinking power and mental muscle.
3. I am not a product of my environment, and I am not a result of biology. I am a cherished creation of the living God of the Universe, and He made me who I am today, because He saw fit."
Question 2:
So, you must have been vaccinated, fed a poor diet of candy and diet coke, or just a crack baby, that's how you "got" Asperger's, right? Can I get it? Can our kids get it? Is it an STD? If so, I'm screwed. (bu-duhm-psh!)
-- "Nope, my parents were too thoughtful and too poor to afford to pump us full of drugs and feed us factory food. I have had a few shots of some sort or another when I was a boy, but not a baby or a teen. We worked for our food, raised our own animals, fed ourselves well, and exercised regularly. Vaccines causing Autism may seem like a huge problem, but if a vaccine gave me AS, I'm glad it did, I'm in good company. There is a genetic correlation for AS, but since it's mechanism is basically unknown it's cause is unknown as well. People have had AS for a looooooooong time and it's potentially a critical part of the human race and it's development and management.
Face it, you are reading this in a language maintained for hundreds of years out of thousands of years of cultural formation, projected as a full color illusion on Light Emitting Diodes in a product made out of parts built by robots in every continent, that circulates information from nowhere to nowhere in a series of languages created in the last 30 years, through a network of invisible ideas carried through cables, radio signals and fiber optics, produced by machines that ultimately can only sort positive charge from negative charges, powered by holes in your wall that connect you to a nation-wide web of recently-harnessed energy that is produced by sucking it out of the earth through controlled nuclear activity.
You need us."
Question 3:
Tell me honestly, how have I been handling it? (Please don't point out that I still haven't read any of the books that you told me to...It's taken me 4 months to read Bossypants...)
--"Ok, honesty.
You've done the best I can expect you to do. You care, you are trying, and you are doing everything you can think of. None of that is stuff I would ask that you do(care, try, think about it yourself), but it is what makes you, you.
The best thing you can do for an Aspie is to want them around, like them. One of the foundational aspects of life is that it is meant to be shared, and people, even those that like me, do not seem to prefer my company. It's not that I feel excluded, but I know I am not considered for many things--and just being considered by you is a big deal for me. The fact is, I don't want another thing to deal with in public, so I asked you not to tell anyone about this. But when I saw it was causing you so much trouble to not be able to share and talk about it, I figured I'd give up that thing and deal with it for you, as a gift to you. I want your life to be as good as it possibly can."
Question 4:
On a scale of 1-10, 1 being the lowest, 10 being the highest, how good am I in the sack? I MEAN....
How do you think your syndrome has effected our marriage? Has understanding it more helped or hurt it in any way?
--"1 and 10. It's helped and hurt. For example, I won't tolerate a fight to end without resolution. That is not always a good thing, but it means we have nothing festering.
The thing is, with a group of friends, I can be the odd man out. With a musical accompanist, one can be better than the other. But in a marriage, a Godly marriage, we are two human beings, and our challenge is to bridge a near infinite gap--the gap between you and me. Between an aspie and an NT person, or a jock and a secretary, or an Atheist and Muslim, a marriage will never be closer or farther than just shy of infinite. If I am the weird one for thinking a car looks funny, then between you and me, you are just as weird for thinking it doesn't! It's just you and me, and the worst that can happen is for either of us to start blaming the distance between us as human beings as being caused by some crippling disability and resign ourselves to a lesser knowing.
The people whose blogs you read that got divorced from their Aspie husbands fell victim to the same lies as everyone else--that they deserved better, that they were too different, that there would be someone more naturally compatible, that their problems had no solutions."
Question 5:
Personally, what have been challenges you've faced as an Aspie?
--"Getting out of bed in the morning.
No seriously. It's non-stop. The biggest thing to get used to once I found out what Asperger's really is, was getting through my day without hearing the narration of a syndrome in the back of my mind. It affects everything I do all day, all night, all the time. It makes everything hard, except for things I am apt at--and those things either I feel to pride or satisfaction in(like reading a book quickly), or are totally unimpressive to others.
Biggest challenge is friendship.
This makes me realize that the true biggest challenge, and the reason I have almost no friends at all, is because I cannot ever let out what is inside me without offending people or gambling on how they will take it. I have to carefully translate every word and sound that leaves my body, and I am playing with fire any time I open my mouth. What I want in a friend is someone who lets me be me, and still wants me around."
Question 6:
Everyone has this picture of Aspies, one of them being that pederass from Boston Legal?! WTH is that about?! Usually, some brown curly headed kid with blue eyes that's super smart and kinda rude (Insert Max from Parenthood), what, if anything, do you want or not want associated with A.S.? What do you think that more people should know?
--"It is very annoying to me that every time I try to find anything about AS, it is all for children. Go ahead, Google "Aspergers crying babies" and see if you can find anyone writing anything about what it does to an Aspie to be in a room with a shrieking banshee of an infant. Nope, it's all mothers terrified their baby is crying because he's got a brain problem. Aspies and Autistic people are portrayed as being bleary eyed savants or massive a-holes on television. The truth is, the internal image of an Aspie is more like Sherlock Holmes or Gregory House than Rain Man or Max Braverman(all autistic-spectrum characters).
The main thing that people should know is that Aspies are specialists, and LOVE helping people. We can talk all day, learn all day, and share things and innovate...if only given the chance. If there was a building set up just with booths of Aspies, categorized by topic, and you'd bring them problems to solve, you probably wouldn't even need to pay them."
One, how awesome is my husband? Pretty amazing, amiright? (Ladies, he really is THAT selfless for me, how'd I get so lucky?)
Two, when I gave this to him to read he said "You made so many grammatical errors in this post..." before he said anything else about the actual post, to which I said "...then fix it." BADOW!
Do YOU have any questions? Do you have a kiddo who has A.S. or any other ASD who you are worried might not find "the one"? Shoot, both my girls check out fine (PEE ESS, vitamin D deficiency is linked with speech development delay, which Lily had, and Norah has a severe deficiency in, BOO YA!) and I still worry about that sorta thing. Or did you just know all along and didn't wanna be all "Yo, Mae...there's something weird about your husband, and it's so attractive," don't worry, I understand your hesitation to bring that sort of news to me. I hope you learned a little bit about what Asperger's (not ass burgers) is and isn't :]
Happy Wednesday,
Mae
Showing posts with label Asperger's Syndrome. Show all posts
Showing posts with label Asperger's Syndrome. Show all posts
Wednesday, April 11, 2012
Thursday, June 9, 2011
Ass Burgers?
In 29 days Lily will be two years old.
That almost breaks my heart to say!
The closer we get to this day, the more anxious I become. Why? Because most parents of children with Asperger Syndrome say that's when they started to notice their child's symptoms.
What is Asperger's?
Here's the easy Wiki Answer:
"Asperger syndrome (AS) is one of the autism spectrum disorders (ASD) or pervasive developmental disorders (PDD), which are a spectrum of psychological conditions that are characterized by abnormalities of social interaction and communication that pervade the individual's functioning, and by restricted and repetitive interests and behavior "
When we started doing research about A.S. after we found out that Eamon has it, we learned several things. Like, first of all, AS is NOT Autism. One of the biggest debates going on in the community right now is that there are certain people want to group in people with AS with Autism and label them "High Functioning Autistic". Some people in the AS community find it very insulting, we're not even sure if Lily has it and I've already taken the stance that this should NOT happen. We've also heard the numbers of how many children are going undiagnosed, and MISdiagnosed leading an overdiagnosed population of children with AS, and an underserved population of children who are going without help. [Not to mention the small population of adults who have it, but were just labelled "disruptive" in school who are still struggling with their day to day lives because communication is such a struggle.] Researchers are also finding a link that suggests it's being passed down genetically so for quite a while I've been waiting to see what-if anything-comes up with Lily.
Have you ever noticed how many pictures I have of this beautiful girl's eyelashes?
It's because I have a never ending stock pile of them on my computer. I could post a different picture of this sweet baby looking down every day for the next 3 years. Knowing that one symptom that is noted for children her age is poor eye contact is the first thing that gave me suspicions. Talking to Lily is very difficult. She doesn't look at me in the eyes. When I take her picture, it's WORK to get her to look at me, which is great from a photographer stand-point, since I need all the practice I can get, but the day to day stresses me out. I'm from a "high context" family. Nearly all of the conversations between my mom, my sisters, and me are had with much more body language than words. Being in a house where I've had to COMPLETELY change the way I talk has been extremely taxing on me, but it's easier for me to change than the rest of my family. Anyway, back to Lily. When I talk to her it's this constant "look at mama" conversation because it makes her SO uncomfortable. She looks at me for 3-5 seconds TOPS then trails off, then back again, then darts off. When I see how other kids her age interact with their parents, I get jealous. At first I thought Lily was just disobedient, but now I'm really able to see how uncomfortable it makes her.
Lily also had PHENOMENAL verbal skills for her first...15? months. I can usually understand what she's trying to tell me, but that's because I'm Mama. I can piece all of her fragmented thoughts together to work with her. But then I hear other kids her age and it's just unsettling. Lily knows lots of words, but she doesn't put them together. When I say "Lily asked for an orange" Lily actually just says "Orange?" But I'm finding out that most children her age say "Mama, want orange please." Lily's friend Eliza is four days younger than her and physically developed slower than her [actually, it was normal, Lily just started sitting, crawling, and walking, like a super baby] but her communication is just overwhelmingly amazing. On one hand I really like for them to hang out because they're the same age and have a lot of fun together, but on the other, it always puts a knot in my stomach because all I can think is "Why isn't Lily saying that?" What really killed me is when "Ziza's" daddy said that she told him "I love you" unprompted. I actually started crying. Other than one time when I sat with her for 30 mins teaching her how to say it, and she did say it-ONCE-, Lily's never told Eamon or I she loves us. [aaaaand there are the tears.] I hear that this act of saying these three little words is what bothers a lot of parents the most.
Which brings us to empathy. THIS is where we might be out of the woods. Is she fascinated with one thing? Yes. Does she get upset if her routines are disrupted? Quite certainly. [I'll tell you about dinner time one day...oy.] Are her fine motor skills something to brag about? Not at all. Does she pretend? If you call throwing flower, salt, raisins, dog food, and water in a bowl "pretend" cooking, then yes. But lack of empathy, one of the biggest indicators of AS, might not be something Lily has. I only say this because when a song with a sappy or dramatic melody comes on, it makes her well up and cry. She doesn't cry when someone else does, it's mostly the music thing, so we'll see.
I'm opening myself up and talking about this because I want to know if any of you parents out there have children who are diagnosed with Asperger's Syndrome. I'm not doing it to have her diagnosed over the internet or anything like that. I've also debated sharing this for quite some time because I don't want anyone to ever treat my child [or anyone in my family for that matter] differently because of who they are. You bet your ass I will never, EVER introduce Lily by saying "This is Lily, she has AS" how unfair is that? That doesn't mean that if she does have it that I'm going to hide it from her...god no. Since I'm homeschooling I want to know as much as I can to help my little girl the best that I can. I love her so much and just want her to succeed.
So anyway...feel free to talk about your experience with AS, what signs did you first notice? What are some misconceptions you had/have? What do you want to know more about?
Happy Thursday!
Mae
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