Saturday, February 26, 2011

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.

Tuesday, February 8, 2011

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.     

Sunday, February 6, 2011

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