Do Parents use Special Needs as an excuse for Bad Behavior?

I ran across this little ditty the other day and, as the mother of 3 kids with 3 different diagnosis', found it rather thought provoking.

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Views of Professor Priscilla Alderson as seen at psychminded.co.uk

Professor Alderson said that it was often convenient for neglectful parents to claim that a child had a behavioural disorder. She believes that much of the increase can be put down to more flexible interpretations of normal childhood traits, such as restlessness and excitability. In our more gullible age, she says, this becomes attention deficit — which could be solved by engaging more with children and allowing them to let off steam in traditional fashion by playing in parks and climbing trees.

“I recently visited a special school which had 27 children diagnosed as autistic. Of those, only two that I met displayed the lack of eye contact and absence of empathy which denotes true autism,” she said. “Money is behind all this. Pyschologists want the work, and lower the diagnosis threshold accordingly. Special needs is an administrative device describing children who have extra needs from those provided for in the average classroom.
Professor Alderson, 57, who has three grown-up children and three grandchildren, admitted that her eldest daughter had been “difficult”, something she attributes to her naivity at the time about how to be a good parent. “By the time my other children came along I had realised that if you treat children as adults then they will behave accordingly.” 

See article HERE.

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So... lemme get this straight. Because Iraq makes eye contact and she is fully capable of going through the motions of showing empathy, she does not have Asperger's? Well hallelujah! It's a miracle - my 8-year-old has been cured! What a wonderful relief!

Quite honestly, I wold LOVE to have Iraq's issues boil down to poor parenting as it would mean I could FIX the problem, but unfortunately for myself and thousands of other parents of children in the autism spectrum, Professor Priscilla Alderson is an outdated, judgmental moron whose views will only add to the struggles we face. (Ooops! Did I just type that out loud?)

It is unfortunate that there are people out there, working under the guise of being an "expert," who know and understand so little about autism. I may not have "Professor" in front of my name, but I honestly believe I know far more about the symptoms of Asperger's in girls than the Priscilla Aldersons of the world.

"I didn't spend 6 years in evil medical school to be called 'Mister.' Thank you very much!" 

Austin Powers: International Man of Mystery (1997). Laugh at sound byte here.

 That said, I must admit that I DO use my children's special needs as an excuse for bad behavior. For example:

• I use Iraq's meltdowns as an excuse to let the clean laundry wrinkle in the dryer for 15-60 minutes some days. (OMG!! People are going to think I am an incompetent launderer! The horror!)
• I use The Skink's Down syndrome as an excuse for the school bus to pick her up at the front door instead at the top of the street (and when I say "at the 'top' of the street," I mean a hill that goes up at an angle of about a 45° for about 2 blocks). We've tried the walk before - she usually walks about 20 feet at 0.1258 miles-per-hour before begging to be carried the rest of the way. I don't want to carry a 30+ lb. child UP the hill every morning... I'm lazy that way, you know.
• I use the theory that the sum is greater than the parts as an excuse to NOT be an active member of the PTA. Well... that and the fact that my husband doesn't get home from work until after 7:30 p.m. and that I don't trust most babysitters to be able to handle the sum of the younger 2 parts... nor do I trust the oldest part to not distract said babysitter...
• I use the excuse that my son has ADHD to not make him babysit his 2 little sisters often so I can torture myself enjoy being a regular part of the PTA. I also use the ADHD excuse to make him mow the lawn... there I go bein' all lazy again. *sigh*
• I use 2 of my children's "issues" as an excuse to bring our dog on family vacations and to restaurants.

 

So yeah... I'm bad! Seriously BAD!

Ok... well... maybe not that bad...

Me... after 16 years of evil school.

Does this look like good PTA material to you? 

*Don't answer that*

So what do you think? Do you feel that autism spectrum disorders and ADD/ADHD are fig-newtons of society's collective imagination?

Do you think parents use the "special needs" label as a crutch or an excuse for bad parenting?  

Or, like me, do you believe that while there are plenty of parents out there who don't properly discipline their "normal" kids, there are also parents struggling with children who have very real issues? Yes - it can be hard to tell the difference, but you don't have to go to a day of evil school to know that labeling MOST parents of children with ASDs or ADD/ADHD as neglectful, gullible people who don't take their children to the park enough is worse than submerging them in a tank of sharks with frickin' laser beams attached to their heads. Why must I be surrounded by frickin' idiots?

But I digress.

"Help! I'm in a nutshell! How did I get into this bloody great big nutshell? What kind of shell has a nut like this?"

 Yeah... I totally feel that way some days...

Oops! I digressed again. 

So tell me what you think!

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What Is It Like To Have Asperger's? My perspective.

What is it like to have Asperger's? What is it like to be human? Don't you hate it when people answer a question with a question? Oops - did I just do it again?

Well - being in the autism spectrum is a different experience for everyone.

One might think that as a mom with Asperger's I would better relate to my child with Asperger's. Unfortunately that is not necessarily the case. I have a hard enough time trying to understand "neuro-typical" people, let alone someone whose neuro-pathways are just a little misaligned, but in a slightly different way than my own. Iraq is very much an individual, and very different from her mom. Then again, there are Aspie traits we both possess, making it easier for me to relate on some levels.

Let me just start with "Me" and my view of the world, since that is what I understand best. Now, I'm not saying I fully understand myself, but who does? As a kid I had almost NO understanding of myself.

Childhood

Socially:

Like most kids, I tried to understand myself in relation to the world around me. The solid world - the objects that I could see, smell, hear, and touch - made sense. Other people were a different matter. My mother would tell you that I had "lots" of friends as a young child. That is true to some degree. Our neighborhood was filled with kids, and we all played together.

 
It was easy for me when we played games with rules, like kickball or kick the can. It was a little harder when it was time to pretend. My interests were different from those of the other girls. I didn't like dolls. I didn't like playing "house." I felt no enjoyment in the fantasy world of developing emotional bonds and mimicking the social interactions of older girls or adults. A tea party? Really? I didn't like the taste of tea, and some sink water in an old toy teacup that only minutes before rested at the bottom of a dust-filled toy chest... gross! And then to be told by my peers that the point of the game was not the drinking of the tea, but of interacting like a bunch of stuffy "grown-ups..." And WHY are we acting like boring adults?

I didn't see a purpose in pretending to be married, in pretending to have a baby, in pretending to clean a house. In the group of peers on my street, I truly wanted to fit in. I would do and say what I saw the other girls do and say, or I would pretend to be the family cat. That was easier. Cats meow. They rub up against people and they don't have to deal with the intricate social structures of "grown-ups" who talk about going to the ball, shopping, or tea parties. I think I spent most of my make-believe-with-peers time as a cat. It was better than being lonely, though I didn't hate playing by myself.

By the time I was about 7, my peers started to notice the differences in me. This added to my challenges. I had a very hard time reading facial expressions or the tones of a voice (I still do today, but not to the extent I did as a child). Interestingly I saw that other people seemed to have this magical understanding of other people's feelings, so I mistakenly assumed (for much of my life) that people would understand how I felt and what I was thinking. I was baffled when others didn't act toward me the way I thought they should behave or treat me the way I thought they should treat me - after all, I always tried to act toward other people the way I thought they wanted me to.

It wasn't uncommon for a peer to ask me, "wouldn't you rather go play somewhere else?" I guess most neuro-typical kids would understand this statement as a blow-off. (duh) Not me. I didn't really understand why someone would be concerned over my desire to play somewhere else. The way I figured it, if I wanted to play elsewhere, I would go elsewhere and they wouldn't need to ask (and I didn't understand why they felt the need to ask me - it was so weird to me). I would answer dubiously with "No. I want to play here with you." I can still feel in the pit of my stomach the uncertainty and anxiety that I would feel when I saw the other children's eyes roll, and hear the barely-masked whispers. If older girls were involved (say ages 10-13) they would often just tell me, point-blank, to leave.

"Why?" I'd ask. You can imagine the annoyance they felt with me then... and I had no idea. I just wanted to know why they didn't want to play with me. A lot of kids would get downright nasty at this point, and I would leave - still wondering what I did that the other kids didn't like.

At age 40-something, I now understand that typically-developing kids know "different" when they see it, and it apparently makes them uncomfortable. I made other kids uncomfortable but I had no idea why or what to do about it. I craved to be around other kids and wanted desperately to fit in, but was clueless as to how to achieve these things.

What did I like? Well, like many individuals with Asperger's, I had one BIG interest. Horses. Horses were on my mind 24/7/365. I wanted to know all there was to know about horses. I soaked up horse-related information like a sponge and would tell anyone who would listen (even if they didn't want to listen) all about horses, from conformation to dental issues as they related to a horse's bit.

Every now and then one of my peers would express an interest in a horse game. Things would turn a bit sour when the girl stated she wanted to play the role of a pink and purple pony with sparkly feet. I would play NO such game! Horse's can't be pink or purple and they're called HOOVES, not FEET! Once again I would unwittingly morph into Mr. Spock from Star Trek... and what "normal" little girl wants to try to play make-believe with a Vulcan?

At age 5 I met Mary M. - a little girl my age who was nearly as obsessed with horses as I was. Mary was my best friend for the next 4 years until her family moved to Connecticut. When we were together, we were horses. We made stalls to "live" in and would trot and canter about our yards, neighing. We would set up jumps and have horse shows. When I pretended to be a horse, I was a horse. I wanted to be a horse. I understood horses, and needless to say, often felt like a prey animal while with my human counterparts.

Physically:

As with most people with Asperger's, I have sensory issues. My senses act and react differently than those of neuro-typical people. For the most part I am hyper-sensitive. Clothes itched and irritated my skin. Tights were the worst, especially when the crotch would ride down between my thighs, and then the seam would rub me to tears. Avoiding negative sensory stimulation became more important than fitting in or behaving in a socially acceptable manner. While other little girls knew better than to fuss with undergarments in public, I had to. Yup - I was that kid, over in a corner doing the butt-wiggle-dance, oblivious to the looks I was getting from everyone around me.

That statement may sound weird to you if you don't have sensory issues. The best way I can describe it is that it's like getting stung by a bee in a public place. You don't just stand there trying to hide your discomfort - you swat at it, cry out and ask around for ice. The only difference is that your bee-sting explanation will seem far more acceptable to your peers than my tights pain explanation.

Colors are more vivid - sometimes blinding. Light can be painful... and loud! (Yes - the buzz from fluorescent lights can be horribly distracting and annoying for me. Noises sometimes make me feel as if I have knives in my ears. (I have always loved fireworks, but I used to cry as I watched them as a child. The sight was beautiful to me, but it was accompanied by horrible pain. People would wonder at my tears, and I only felt more embarrassed and different knowing that somehow the dazzling spectacle wasn't hurting anyone but me.)  Crowds... crowds are positively dizzying to me to this day. My husband is pretty much the only reason I don't pass out or burst into tears at Disney World.

Any one of these overwhelming sensations can cause me to become overstimulated.  Here again, think of that bee-sting. Becoming overstimulated can be like getting stung by an entire nest of bees. Overstimulation can cause anxiety, meltdowns, frustration, anger, a complete shut-down... any number of reactions as the brain's way to try to block out some or all of the sensation. I would try so hard to hide it. I usually internalized the deep stress and anxiety I was feeling. Sometimes I would focus my eyes on something very small like a bug or a chip in the paint. By focusing deeply I learned to block out some of the craziness I felt so submerged in. The stress of turning my frustration and pain inward caused me to have regular stomach and intestinal issues.

Honestly, the best thing to do for an overstimulated child is to find a dim, quiet place. Once the pain of overstimulation starts to subside, I was better able to rejoin a situation for limited times. At Christmas parties at grown-up's houses, I remember taking breaks in the bathroom or even sitting in a coat closet for a few minutes.

Many children with Asperger's perform repetitive behaviors like spinning or hand-flapping. I sucked my thumb. While thumb-sucking is a fairly normal habit for small children, I sucked my thumb until I was 13 years old! Yes... really. Of course I never let anyone see me do it. I would also focus deeply on the sensation of rubbing the side of my forefinger across my top lip. This was subtle enough to make me look like I was thinking about something, yet provided enough of a stimulus to allow me to block out the rest of the world temporarily.

I also think in pictures. If you've ever seen the Temple Grandin movie or read her books - yes... that's how I think. You say "Do you have ants in your pants?," I see this:

You say "Hop on over here," and I see an image of a rabbit in my head. You say you have a "smashing headache," and I see a pretty gross image of a half-smashed head. Over the years I have learned what different expressions mean, but I still see those pictures. I think this is why I enjoy word-play and puns. I continuously think of each of the meanings of each word.

I'm going to leave off for now (I worry I may have overstimulated my poor readers), and in the next few days (or the next time I get a chance) I'll post about my experiences in the "tween" and teen years.


Part 1: What Is It Like To Have Asperger's? My perspective.
Part 2: What Is It Like To Have Asperger's? The Tween and Teen Years.
Part 3: What Is It Like To Have Asperger's? Adulthood 

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Momentum - Asperger's and Learning to Ride a Bicycle

Learning to ride a bike can be a daunting goal for any kid, let alone a kid with Asperger's. Issues with coordination and balance can get in the way of each little success, and for those who tend to be anxious, the fear of falling, not succeeding, being teased by peers, doing a face-plant off the front of the bike, getting one's shoelaces tangled in the pedals, having a blowout doing 70, forgetting how to use the handlebars, snakes suddenly popping up from holes in the pavement, tipping over and unexpected elephants attacks can add to the worry of clearing such a momentous hurdle.

It's easy when you're a little kid. The chance of wiping out on a 3-wheeler on a flat black top are like, WAY less than for a stylish young lady learning to balance and control a 2-wheeler.

Bike riding can be as much of a right of passage for parents as it is for kids! It's another one of those things... when all the moms are talking about their kids and it comes up that your kid doesn't know how to ride a bike yet at age 8. Do you launch into a lengthy explanation about the psychological and physiological differences in children in the autism spectrum, or do you do what I do and just say, "Eh... the fact that she can't ride a bike yet is a simple reflection of the poor parenting skills we possess. We're cool with it." ??   (You should see the looks I get with that one... )
*insert maniacal giggle-fit here*

The first attempts, while exciting, also proved frustrating...

So Daddy stepped in for a short pep-talk.

And though no snakes popped up unexpectedly from the warm pavement, the task at hand seemed very upsetting for poor Iraq. Her own inability to instantly be able to ride a bike like Lance Armstrong resulted in a fair amount of frustration.

But after a short break to soothe her overstimulated senses... (and after mom hopped on the small "Barbie" bike for a very short, circus-esque trip across the blacktop to the sound of giggles and applause from her admiring audience) Iraq was ready to give it one more try.

The sweet taste of success propelled her around and around the blacktop, and when she was ready to stop, the bike was all but forgotten as she ran to her daddy for a huge victory hug!

 

And The Skink thought it was pretty cool, too!

May you make lofty goals and far surpass your greatest expectations without becoming too overstimulated along the way!

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How To Tie Your Shoes - and a Give Away!

Nearly a year ago, I posted about working with Iraq to teach her to tie her lace-up shoes. Though she was able to tie them once or twice, she simply didn't catch on and then refused to even wear her lace-up shoes.

I'm glad to announce that this post is proudly brought to you by the daily adventures of my crazy amazing family and by our newest sponsor, Loopeez!

Shoe tying can be very frustrating for a kid with Aspergers, Down syndrome or with fine motor issues. Many kids in the autism spectrum have fine-motor delays. While Iraq's hand writing has started to become legible with practice, she tends to avoid activities that require fine-motor coordination. This is why the majority of her Barbie dolls are stripe-4$$ nekid all the time. She can undress them, but lacks the coordination to put all those teeny-tiny dresses and shoes back on. Now that they live in the downstairs (basement) playroom, I'm thinking those poor, nekid Barbies may be a bit chilly in their current state of undress.

Anyhooo -

The other day... like the day after our big, crazy moving madness, I received an email from Courtney with Loopeez. When I paid a visit to the Loopeez website, it took me about a second (possibly less) to see how this product could ease the challenge of shoe tying for Iraq and in a year or so, for The Skink! I have (finally) gotten around to opening our new Loopeez and caught the whole Loopeez experience with my camera (me? take pictures? who would have guessed?).

Iraq was excited about the pink butterfly Loopeez we were sent! First, she crossed her shoelaces - that was the only step she truly mastered in our prior shoe tying training sessions.

Then I showed her how to loop the laces into bunny-ears and poke them through the Loopeez.

After that I demonstrated how to take the bunny-ears, cross them, push one under the other and pull tight... and then it was her turn...

And just like that, Iraq tied her own shoe! And look at the excitement on her face!

Of course then there was no stopping her! She did the second shoe all by herself!

Even putting the laces through the Loopeez.

Look at the pride on her face    : D

(And she even made me help her untie the first shoe just so she could do it again!)

High Five!

I'm thrilled beyond words! Iraq is ecstatic! I'm sure if her shoes could talk, they'd be pretty pleased also. I should mention that the kind folks at Loopeez even sent us an extra set of shoelaces with our Loopeez. Iraq doesn't transition well to change (not sure if I've mentioned that...          in this post) so we haven't change her laces yet. I'm sure we will (someday) when she gets used to the idea.



Is that the face of success, or what?

So... who wants a neat tool that will help your child(ren) learn to tie their shoes? Since I can't see how many of you are raising your hand, you'll have to leave a comment. On Saturday, May 28, 2011 I will use random.org to determine which lucky commenter will receive a set of Loopeez! To make it even more fun and interesting, tell me the 3 things you love best about the month of May! Good luck and happy shoe-tying!

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Moving Daze and Issues of the Heart

So I mentioned briefly before that we were moving. Since mentioning it, time has moved in warp speed for us, and here we are in our new (much larger) rental house.

 

 I love that Broadway now has a real bed room instead of a converted dining room. I love that it has 2 full baths. I love the big, airy kitchen, but most of all, I LOVE our new PLAYROOM!

All the girl's toys are down in the playroom, and there is still plenty of room to run and do cartwheels! It's perfect for those days that are too cold, too hot or too wet. It even has a door and I'm considering installing a lock... on the outside of it... And for the days that aren't too hot or cold and happen to be just right (and we have a LOT of those here in Virginia), there is a lovely back yard.

It's a great place to hang out with friends.

Or give someone a nice back-scratch.

We kept our strawberry plants from last year (yes - they survived my "care"), and we have a number of berries ripening quite nicely.

The back yard also has mature pear trees! Of course I had to Google "Harvesting pears" because I know very little about growing this fruit, and I have learned that they should be picked before they are ripe - around mid-October in our area - and then put in cold storage for a couple weeks to ripen. Who knew? A-pear-antly if they ripen on the tree they get mushy on the inside. Ewww, right? Well - I suppose this means our refrigerator will be filled with pears this fall. (Avalanche!) Luckily, we all love pears!

If just 1/4 of those suckers make it until harvest, we'll be up to our ears in pears!

Iraq takes flight in the new yard.

As for me... well... I'd love to tell you that I'm just fine. I'm quite happy (see "new house"), but there are a few little things going on with me physically that we're still trying to pinpoint. Last year I had some issues with my heart and unfortunately I seem to be having some issues now. I had some pains in my neck, jaw and left arm the Friday evening before Mother's Day and did a "sleep-over" at the hospital while some tests were run. My iron was low (I seem to have chronic anemia - but I've known about that for a number of years... because it's chronic... ), low vitamin D and my potassium was very low which they believed may have caused some of the trouble. A bunch of other seemingly-unrelated problems were identified in the blood work too. I also have had chronic hypertension for the last 7 years which doesn't help. Now I'm going through a series of medical tests to see if there might be an underlying endocrine issue.

I am generally very careful with my diet and there is no reason that I should be low on any vitamins, minerals or other nutrients. At the request of my doctor I have been taking large doses of iron supplements already... and it's still low? Do I need to start swallowing horse shoes or something? And at what point do I need to worry if I'll start rusting in the shower?

So at this point in the game I'm just hoping they find *something* so I can treat it and move on! I have an entire medicine cabinet of pills I take for all my symptoms - it's no wonder I'm not hungry for breakfast right away - LOL. I figure if we can find the root cause, I can start treating that instead of taking a pill for each of the annoying symptoms. Wish me luck!

In the mean time, the girls are loving the new house. Iraq has had some transition issues - no surprise there. She has Aspergers. She has issues transferring from playtime to lunch time, let alone making a switch from one house to another. Needless to say, she's having some sleep problems and has "lifted" a few small objects belonging to other children at school. Yay... the kleptomania is back... *groan*  Hopefully once life settles down again, so will she. The ADHD meds are still making a BIG difference, but the Aspie behaviors are still present. Just easier to handle without the daily meltdowns and tantrums.

The Skink is as sweet and easygoing as ever. First night in the new house and she was asleep within 3 minutes of being put to bed. The one annoying thing she has been doing lately is screaming if she is angry or doesn't get what she wants. Gee... wonder where she could have learned that? As with Iraq, we don't give in to The Skink's screaming either. I think she just thinks it's the socially acceptable way to express one's distaste for something on our house *insert eye roll here*  We'll be working on that right alongside potty-training. (and a fun time was had by all)

Broadway is healthy and doing well. His grades have been up and down... his teachers say he gets distracted very easily. Well, duh! Funny thing about ADHD, huh? But we're working through that too :o)

That's all I got for now. Hope everyone in blogland is having a great day!

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