THERAPY-NOS (Not Otherwise Specified)

Once again, a professional has questioned my son’s diagnosis. “He sounds like he might be more ODD (oppositional defiant disorder) than Asperger” she said. “Who diagnosed him?”

Ugh. Here we go again. I have been on this carousel ride more than once. He has been pegged as having PDD-NOS (pervasive development disorder-not otherwise specified), ODD, Aspergers, and high-functioning autism. Oh, and there was the kindergarten speech therapist who thought he was retarded and had no sense of reality. He was FIVE. She thought he couldn’t understand the difference between reality and fantasy. Don’t most kindergarten students have trouble with that? Isn’t that why we have such fun with the tooth fairy, and leprechaun traps, and fairy dust? But…I digress.

Once again, I have to advocate for my son to a professional. The thing is, the DSM changes and evolves more often than an Aspie changes wardrobes. What difference does it make what label you put on him today? The new DSM will come out and the label will change. The other thing is, and this is a big one, I live with this kid. They don’t. Why do so many people think they can make quick decisions about this boy that they have never spent any significant time with?

It doesn’t just come from professionals. Family, friends, even strangers readily supply their brand of therapy and advice.

“He just needs a change” (Has this person ever MET an ASPIE?)

“He needs more structure” (Oh my stars! We live and die by the whiteboard and lists.)

“He needs less structure”

“He needs a quiet, calm, environment” (this person doesn’t have five kids)     

“He needs medication”

“He needs to get off all of that crap” (the medication)

“He needs this system…this book…this method…this therapy…and on…and on…and on…”

Let me just say, advising is easy, but I LIVE with this kid. I have been living with him every day, for sixteen years.

I need advice from people who actually live this situation. I need advice from people who understand what it means in Aspie World when school is cancelled abruptly for snow, when school assemblies alter an entire day’s schedule, or when the weather changes and ruins a dry, warm walk to the bus stop. I live in Aspie World. Those small, seemingly harmless changes are like throwing a large stone in the center of a calm pond. It creates a huge splash and then there are waves and finally ripples. The family- every other member of the herd- fights desperately to keep their little sailboat level on the precarious waves.

I once heard a very successful Aspie say “if you’ve met one person with Aspergers, you’ve met one person with Aspergers.” How absolutely true.

My advice to all experts, professional and not otherwise specified: Put the DSM, back on the shelf. Don’t make assumptions. Don’t toss around diagnoses like beach balls. Meet my child (or anyone’s child) and walk a mile with them before you give advice. We (the families who care for children on the autism spectrum) need support and advice. We need a beacon on the restless waters. Don’t throw more stones at our pond. Throw lifesavers, or get off our beaches.

Language Barriers

"We spend the first twelve months of our children's lives teaching them to walk and talk and the next twelve telling them to sit down and shut up." -Phyllis Diller

Today was the day for Skiffy's orthopaedic check-up. I look forward to these appointments with all of the zeal I would approach a root canal with. It is not that I don't enjoy visiting with the doctor; I do. I look forward to hearing about Skiffy's progress and so far, the news has always been good. What I dread is Skiffy herself. Something about these appointments brings out her teenage best. As soon as we arrive she flops down in chair in the waiting room and starts making the face. You know the face- the one that says 'I hate all adults for no apparent reason and I would burn holes in their bodies with my eyes if only I had super powers'-yeah...that face.

You see, there is a small obstacle here; Skiffy and I don't speak the same language. The native language spoken in the home is English. Skiffy speaks Teenagerese. The hospital we visit is no help at all. They have interpretive services for a variety of foreign languages and for visually and hearing impaired individuals, but not one interpeter there speaks Teen- I checked. So, when we leave the hospital, we are never on the same page and we proceed to argue all the way home.

Me: The doctor said you can bear more weight now.
Skiffy: No, he said I could go rock climbing.
M: He said no such thing! He said you have to protect that hip.
S: He said I was all better and I could take on the whole world if I wanted to.
M: He said take it easy!
S: Skydiving is easy.   
 
The last time we visited with the doctor, he said Skiffy would probably walk without crutches by September. I asked about band camp in July and he squirmed and said "we'll see." Today, he looked over her x-rays and declared it was time to start physical therapy and that she may walk in as little as three weeks! Gibberish. He must have been speaking gibberish. I heard "the x-rays look incredible, the bone is fusing, she can start therapy now and if all goes well she may be walking in three weeks." Skiffy heard something different altogether. Her version went "I can start walking TODAY."

Excuse me, interpreter...where is the INTERPRETER....I NEED AN INTERPRETER!!

So, the bone is fusing in the left hip around the screws and for now at least, the femoral head (big round ball on top of the femur) looks healthy as if it is maintaining the blood supply. The growth plate is also fusing in the right hip which means it cannot slip and created problems like the left side did. All good news! She is going to walk months before we thought she would. It looks like this child has been part of a small miracle. Oh, happy day!

She pouted all the way home. She did not like the doctor's lecture about only getting one first chance with this hip and that taking risks could cause her to endure a hip replacement at a young age and how that would be a terrible thing. She did not like that she couldn't walk TODAY. She did not like that we did not go see a physical therapist TODAY. She does not want to wait three more weeks to walk.

Good grief. The biggest joy of the day- we don't have to do this again until May. I hope they hire a new interpreter by then.     

Cereal Killers

Have you any idea how many children it takes to turn off one light in the kitchen? Three. It takes one to say, "What light?" and two more to say, "I didn't turn it on."
-- Erma Bombeck

Hello. My name is Keeper of the Herd and I'm a stress-eater.

After a challenging second interview and a really rough week I decided that what I really, truly, wanted after a nice, long sleep was a big bowl of Cap'n Crunch cereal on Sunday morning. Not really a bowl, no...more like the whole box. I wanted to binge on Crunch and eat my crappy week away. I wanted to keep adding little bits of crunchy goodness to the milk until I was content that I wanted no more. I went to bed dreaming of my morning bowl of bliss. (Hey, I don't call you out on your bad habits! Don't call me out on mine!)

Saturday night I took my beloved herd to the grocery store. I asked each of them what kind of cereal they wanted. I BOUGHT them the cereal THEY wanted! Several boxes! I bought myself a beautiful box of Cap'n Crunch. Ahh...sweet, crunchy corn crap. But alas, when I awoke on Sunday, what do you think they had eaten? Absolutely! MY box of cereal! Their boxes were untouched.  Unbelievable; unless you have a herd of your own and then surely you have experienced this brand of betrayal.

Of course, what escalated my shock and outrage at the discovery of the near empty box of cereal was that not one member of the herd made a peep when I bellowed "WHO DID THIS? WHO ATE MY CEREAL?" The look on their faces said "cereal? What cereal? Who is this woman? What is she hollering about? I have never heard this word- c e r e a l."

Finally the scrambled answers began to flow. Not in the form of confessions, mind you; no, no, they took the form of blame. "Rough Stuff had some. Little Bean had a cup too." Why is it, when you ask a question of a herd of children, their replies never, ever begin with 'I'? They know they've been caught. They know too, that their siblings are going to rat them out and sell their soul, but some compelling inner force keeps them from making a confession.

I threw the half-empty box of cereal on the floor in a momentary mommy-tantrum. I know,I know...I could be nominated for a worst-mommy-of-the-year award for that scene but I wanted the herd to know that I felt betrayed. I declared I would never again buy them the cereal they asked for. They pursed their lips together to hide smiles. They knew I was bluffing and they were keeping their poker faces on. I stormed away, without my Crunch cereal. 

Herd 1-Keeper 0

Along Came a Spider

Literally spacin'
I sat on my basin
Reading my cares away
When along came a spider
I fled to the side...er...
And dribbled right down my leg

Arachnophobia: the irrational fear of spiders and spider-like creatures. It is my curse; the ball and chain I drag with me on my journey through life. I am terrified of spiders. I have unreasonable fears that they will jump on me or crawl on me. I have been known to hurt myself trying to escape them. This particular time, I was not injured. Just thoroughly humiliated.

I was sitting innocently on the toilet when the attack happened. I was chattering at my husband who was going about his nightly getting-ready-for-bed rituals and reading from a local paper (one I had actually picked up from a local store and carried with me most of the day). Suddenly, this enormous, butt-ugly wolf spider crawls out of the pages of my paper, right over the top corner and...HORRORS...almost onto my hand!

There was no time to think. I closed the paper (Big Dog  said I actually folded the paper but I have no memory of this action) and flung it as forcefully as possible in Big Dog's direction. I simultaneously leaped from the toilet, into the shower, placing myself as far as physically possible from my attacker.

What happened from that instant on was a biologically primitive reaction that was completely beyond my control. My sympathetic nervous system took complete control of my physical body. My voice forced shrill pleas for assistance, my legs went numb and rubbery, my heart raced, and my bladder deflated like a busted birthday balloon.

Big Dog stomped cluelessly at the spider, missing it entirely, and causing it to flee in my direction. I continued to scream in sheer terror. Finally his big shoe found my attacker and with a final crushing blow the terror ended.

As I finished undressing and turned on the shower my heart descended from my throat and my bladder began to regain some resemblance of its former self. I felt so ashamed, so dirty. This ugly thing, this SPIDER, had taken my dignity from me. Like all victims of assault, I suffer PTSD (post traumatic stress disorder). I can no longer read newspapers and magazines on the potty. I am relegated to sit there on my throne, bored, eyes patrolling the perimeter for a possible attacker.

Little Miss Muffet, I have walked a mile in your shoes, I have sat where you sat, and you, my dear child, have my utmost sympathy.

Revelations of a Wavy Woman

“What after all is a halo? It's only one more thing to keep clean” –Christopher Fry

So, I’ve revealed that I have hair issues. I vowed at a tender age to never, ever dye, perm, bleach, crimp, straighten, or otherwise abuse my hair. The challenge hasn’t been too difficult. I’m kind of a blue jeans and basics girl. I change my hairstyle every few decades and then only under extreme duress, but I must confess that I have not always been true to my vow. I was a teen in the late ‘80s and I am guilty of mass hair spray consumption. Yes, I too had poofy bangs teased to humiliating heights with a blow dryer and curling iron. I even sported a spiral perm for my wedding. Then, for the next decade or so, I settled on soft, feathered bangs and tamed long locks, courtesy of blow-dried, hair-frizzing heat. I was perfectly content. Until…

I partied like it was 1999. Nah, not so much. The dawning of the millennium found me heavily pregnant with twins. It was then that I first began to notice it- the first signs of betrayal. It was subtle at first. The color shifted. My auburn locks were turning blonde on the ends. I looked like I was growing out a dye job. My hair was mocking me! Gradually the changes became more aggressive. My soft feathered bangs wouldn’t behave at all. They wanted to…GASP!...CURL! My hair was becoming coarse, multi-colored, and un-manageable. Well I was not about to go down without a fight. I applied more heat. I spent more time brushing and coaxing and pressing my hair into place, but the battle was on and I was losing.

Finally, several years later, a friend (and supervisor at the time) convinced cajoled coerced inspired me (yes, that’s it!) to let my hair do its thing. I worked up the courage to just step out of the shower one day and sure enough (how could she have known?!) my hair dried in soft, spiral curls. Well…I’ll be damned. All that time I thought my hair was misbehaving and it was actually transforming.

I set out to learn how to handle my curls and stumbled onto Lorraine Massey’s Curly Girl method. Now I am a born again poo-free curly girl. That’s right. I said poo-free. I haven’t used shampoo for over two years. I step into the shower every morning, rinse, condition, scrub my scalp, rinse, finger comb, and leave it alone. I plop my curls in an old t-shirt to dry, which by the way is a fabulous way to embarrass your teenagers. I add a little clear gel to tame frizz and I’m good to go. I confess I love to set my curls with a bit of diffused heat (I know Lorraine, I am hanging my head in shame) but that is the limit to my hair care.

I finally embraced my hair and let it do its own thing. I was at peace with my curls. Until…

I shot a glance at the mirror one day and holy crap! There was one, defiant, solid white curl plastered square on the front of my forehead. For the love of all things, where the crap did that come from?! In an unforeseen instant I was back to coaxing. I separated the white hairs and poked them back into other, more pigmented curls and added a bit of gel to keep them in place. I thought I had conquered the curl, but occasionally, without any warning it would just reassemble itself. It was totally unpredictable. Two, three days would pass and then out of the clear blue sky whoop! There it is, right smack in the middle of my forehead. I was mad. I was grumpy. I was beginning to consider…GASP!...hair dye. And then one day it occurred to me- this little white curl- it’s my halo. That’s right. Some days I’m a handful. Some days I wear a white halo.  

I am again at peace with my curls.     

To Dye For

My beloved Skiffy has the most beautiful head of hair. Thick, dark brown, healthy spiral curls. It is absolutely gorgeous. Of course, like a good rebellious teenager, she hates it. She would love to dye it, bleach it, flat iron it, or otherwise find some way of turning it to straw. This is incredibly painful for me as I am a devout curly girl. (More on that another day, but in short, I don’t use shampoo, sulfate, silicone, etc. in my hair.) You see, my own mother developed an extreme complex within me, a true fear actually; a fear of dyes, bleaches, and hair chemicals in general. She had a horrid habit of ‘doing’ her own hair at home and then paying a visit and a wad of cash to a professional to repair her do from the doing she’d done to it. Her hairdresser once told her she would be lucky if she woke up without all of her hair on her pillow. The result of this hair fear/complex is that I have made a serious commitment to loving my hair, sans chemicals. It is the curse of motherhood that my beloved daughter will not embrace her own fabulous locks as I will her to.

Enter Jerome Russell’s Punky Colours hair dye. Skiffy got $20 for Christmas and has been ‘dyeing’ to get to the store to buy her dye. She returned home with her dye, but no tint brush, no rubber gloves, and no knowledge whatsoever of how to dye her hair. Curly girl au naturel that I am, I have no idea either. What I do know is that I cannot fight every battle. As she journeys down the long and painful road of asserting her independence and establishing her own identity it is my job to keep her on the high road. I am doing my best to help her avoid body piercings, tattoos, destructive hair techniques, and bad boy selections, but I can’t win every battle and temporary hair color is certainly an easy one to lose.

So, off to the bathroom she went with stern warnings…no…outright threats about what would happen if she turned my bathroom green or blue and two bottles of hair dye in tow. I stayed in another room trying to subdue my blood pressure. The rational parent side of my brain said: Whatever will be will be. She will learn. Perhaps the hard way. It is her hair. Not mine. It can’t be THAT bad. So what if her hands are green and blue. She will learn from the experience. The insecure mother side of my brain said: Oh holy hell! What if it is horrendous? What if she comes out crying? I shouldn’t be letting her do this! Where did the years go? Why has it come to this already??

Two hours later, with much prompting…no…threatening, she opened the bathroom door, soaking wet, a bizarre turquoise tint from head to toe, everywhere except…her hair. That’s right. Not one ounce of dye attached itself to that beautiful, dark, healthy hair of hers.

I nearly dyed laughing.

The Disturbing Dilemma of an Anxious Aspie

Meal time has brought up a new and disturbing challenge for my environmentally-conscious Aspie. He must decide what to prepare his food on- paper plates, or real ones. Paper plates waste perfectly good trees and fill up landfills. Real plates require clean up which wastes water and energy.

Q: What is a good tree-hugging Aspie to do?
A: Reduce the size of the paper plates!

That's right. He cuts paper plates into halves, or thirds, or fourths- whatever size does the job- and saves the remaining piece(s) for the next meal. I now have a stack of cut up paper plates on the kitchen island. (colossal eye roll)

On a more sense-itive note-
I have always had a wee little bit of worry about Rough Stuff. She has 'Aspie traits'. I would never say would not say at this time, that she actually has Asperger's Syndrome, but she has some telltale traits that hint at an Asperger-like persona. So, I was not surprised one evening at dinner when she and Aspie had a very serious conversation about the taste of the pickles on the buffet. According to this sensory enlightened pair, the pickles tasted like old cars. Not new cars, nope, really old cars. I was intrigued. What, I asked, do old cars taste like and why would they know? (I would not be surprised if Rough Stuff had actually tasted an old car, or several.) They explained that the pickles tasted the way old cars smell like they would taste.

Alrighty then.