Post It Note Tuesday

I’m almost out of Tuesday and haven’t done this for awhile…but it’s my favorite blog day!

And if you love the stickies…go read more or make your own:

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Chasin’ the Blues Away

Beautiful, beautiful, beautiful day! The last remnants of snow are melting away and the sun is shining. Once again, I awoke to birds singing outside my window…a sure sign of Spring. My iris and daylilies are poking their noses through the dirt and I spy buds on the lilac. My impatience at the cold and snow is turning into impatience at having to wait a few more weeks before I can begin to dig in the dirt.

I’ve been in a little funk lately. Nothing major, just minor exhaustion and frustration aimed at the hurdles and hoops I’m jumping through to get proper support for the C man. I cannot understand why I must apply for Medical Assistance (the application for which is daunting on its on) before being able to find full-time classroom support from an ouside agency. They will also be providing the wrap services of home help and hooking us up with the right therapists.

My mind’s eye is seeing the three more evaluations by psychologists, speech therapist, occupational therapists, psychiatrist…and the mountains of paperwork involved.

OT, PT, IEP, SLP, MA, TSS, MD, PsychD…it’s like Alphabet Soup! Oh, and let’s throw in a 504 just to confuse things.

Any whoo…last night I sat in the living room with all these reports, applications and letters, feeling rather overwhelmed and a bit blue.

So, I pulled up my You Tube account and found my favorite video to watch. Nothing like a dose of The Blues to drive the blues away…and with that I will leave you with my favorite blues pianist and her improvisational skills…

Piggyback Repost

Here’s a repost to piggy-back-ride my post from yesterday. Originally posted in July 2008.

I’m serious people.

Today I got an email through Facebook from an old friend that I grew up with in Hong Kong. He’s someone that I have often thought of but I haven’t seen or spoken to in nearly twenty years. I knew he’d be involved in helping others; something we both learned by watching our parents work as missionaries in Hong Kong.

He turned me on to a project of his; personally and professionally.

After watching the clip he sent, I am again reminded how easy my life is. How do I sit around in my comfy chair, making money and eating fat food while beautiful people live in a place constructed out of the things others threw away?

This isn’t a new thought for me, nor is it foreign for me to help others. But, it is so easy to get sucked in to the materialistic American dream and wish for the stars that will benefit me the most. I showed the clip to Andy and he too was moved. I forgot to mention to him that watching this made me want to sell my huge house and move somewhere cheap so all my money, energy and resources could be put into making the lives of children in this world a little more tolerable.

Not far away from the homes of the children living in this dump are resorts, gourmet restaurants, beaches and relaxation. Do any of these children know that life? How dare we sit around and whine that we don’t have enough?

I want to thank Derek Williams for sharing this with me. I hope he don’t mind that I share it with you.

Check out this clip:

www.operationquad.org

Asperger’s Cliff Notes

Last week, Colin was officially diagnosed with Asperger’s Disorder (AS). We felt it coming and honestly it’s nice to have that label because now we can get the right therapies in place. I wanted to just sit and write out a synopsis of what people with Asperger’s deal with in their world so that as I continue to blog about our lives, this post can be a reference tool.

You can also refer back to my May blogging to get a little window into some of our daily stuff here: http://divinegraffiti.com/2009/05/

In order to diagnose AS or any disorder on the Autism spectrum, a thorough evaluation takes place. Colin spent three hours in the company of two wonderful neuropsychologists playing games, taking tests, coloring, doing mazes, and working computer games. Mom, Dad and teacher got to fill out little score sheets asking about certain behaviors. Those things all put together helped the neuropsychologist to determine whether or not Colin has ADHD, Autism, PDD (pervasive developmental disorder) or Asperger’s Syndrome.

Many clinicians will consider AS to be the same as High Functioning Autism. However, one of the diagnostic criteria for AS is that a child will not score high on the Autism scale. In fact, Colin was shown on that scale to be Not Autistic. But, on the AS scales and in his behavior evaluations, he scored very high. That is not to say that a child with AS is not on the autism spectrum, but AS has very specific differences from HFA and they are hard to pinpoint at times.

Our wonderful neuropsychologist explained it to us like this:
A child with AS has an intense need for relationships and intimacy with others just like we all do.  However, they do not know how to go about forming relationships or making friends using appropriate social skills and this becomes a source of real worry and sadness for them. They care very much that someone is unhappy with them or that they don’t have friends.  They will overshoot (by being too aggressive with physical touch) or undershoot (by shutting down, freezing or hiding). There are studies to show that there is a physical change in the cerebellum of AS kids that functions like someone with Parkinson’s Disease or injury to that area. They know what they want, but the tremor doesn’t let them pick it up. Children with PDD or HFA often use the same behaviors to try to make friends, but they are not all that concerned if the friendships don’t materialize. They aren’t really bothered if they are alone. That is one of the slight nuanced differences between HFA and AS. And one of the behaviors used to diagnosis AS apart from any other disorder.

Typically children with AS have no language or speech delay, in fact often develop language skills early and are quite sophisticated in their use of words, pronunciation and grammar. Almost pedantic in their speech. (Come over sometime and just listen to the conversations we have!!!) 

AS kid often have no fine motor problems, or only slight fine motor deficits. Colin struggles with buttons, zippers and snaps but has no other problems in that area. He’ll have a tough time learning to tie shoes. He won’t qualify for OT services because of this.

Within the first week of school, Colin had memorized the locations of all the red fire alarms in the building so he could keep an eye on them in case they should sound off.  He has to have at least two days warning if there will be a substitute teacher, or his behaviors in school that day will be difficult. Super sensitivity to any external stimuli can result in hyperactivity. Many kids with AS also have ADHD and are treated with medications effectively. Colin’s hyperactivity is very situational and only rears its head when he’s reacting to external stimuli that makes him uncomfortable. That could be crowded places, loud noises or even excitement. He will not need medications for ADHD, at least for now.

Routine is very important. AS kids can not switch gears without ample warning, or there will be trouble. We must give Colin time warnings constantly when something is going to happen. “Ten minutes til dinner,” “Five minutes til bath time,” “Three minutes til we leave.”  He also needs to know each day what we will be doing. If the schedule is changed he may cry, bang his head on the couch, hide under a table or generally act out.  As he gets older, his emotional maturity will probably lag behind that of his peers to a degree.

Eye contact is like nails on a chalkboard to him. Force him to look at you and he’ll do so, but giggle the whole time to make himself feel better. He can’t understand the nuances in facial expressions or tone of voice that infants and toddlers learn instinctively. He’ll need to be taught all of those things. He’ll interpret mild irritation with real anger directed at him. He has difficulty answering questions that ask him to describe a feeling…”Do you like school?”…for example. But, “What’s your teacher’s name?” will get a response. Just the facts please, not the feelings. He has the feelings we all do, but has difficulty describing which one is which.

Sarcasm goes nowhere. AS is a literal world, so the jokes and nuanced speech that we all use doesn’t compute in his brain. His soccer coach made cookies for the team and said “I put my blood, sweat and tears into these cookies.”  Colin was very confused and somewhat alarmed by that and unsure if the cookie was good to eat!

Colin is an extremely bright and fun kid! He’s silly, goofy and full of life. He loves to wrestle and play. Colin is constantly giving out hugs and kisses to those he loves (sometimes to the point of overkill) and we wouldn’t have him any other way.

Our challenge will be parenting this child and preparing him for a world that functions on social norms which he doesn’t instinctively understand. He’ll be very successful in whatever he decides to do, but it’ll be a different road that gets him there.

Recently I Was Really Tired Out

Colin crawled into my lap this evening. He had a rough day at school today. During Library, he got “in trouble” and had his name moved from the Green to the Yellow light on the traffic sign. That’s a bad thing. When you get to Red, you are in deep doo-doo. It took him nearly an hour to let me in on what he had done to result in his traffic light changing. Library days are wonderful and he didn’t come home with a book…what gives?

HIM: “I was sword fighting with my book-finder.  Me and Chorea were swordfighting and got in trouble and we got our books taken from us and we had our names moved to yellow and, and…..and I DON’T WANT TO TELL YOU!!!!!”

ME: “Thank you for telling me what happened. I’m sorry you didn’t get a library book, but I’ll bet you won’t sword fight with rulers again.”

HIM: “NOOOOO!!!! I’ll NEVER EVER do it again.”

Good.

Someone asked me this morning if I was ready to get back into the swing of things. I bit my tongue and smiled rather than telling them that my swing had swung far away many weeks ago.

 I’m looking for it.

Three months ago I was working full time, swimming with my kids, admiring my husband as a stay-at-home caregiver.

 Two months ago, hubby was starting a job and I was ready to be home to care for everyone.

 Six weeks ago I was at the beach.

 One month ago, we were asking Hospice to come care for Charlie as he prepared himself to take his final journey.

Three weeks ago I was managing medicines, phone calls, dr. visits, meals, bedtime, baths for young and old.

Two weeks ago, I was beginning to sit vigil.

One week ago I was planning for a funeral and sharing my home with extended family who rallied around to get through this.

Today, I said goodbye to the last of visiting family. I made calls to Social Security and insurance companies informing them of a death. I mowed the yard. I said goodbye to my husband as he left for a week away. I wiped tears, fed bellies, made beds, washed towels and felt very very lonely.

If this is the new swing….it’ll take some getting used to.

HIM: (On my lap) “Mommy…recently, I was really tired out.”
ME: “Yeah, why?”
HIM: “Cause I ate a whole green apple for supper.”
ME: “Good! I’m tired too.”
HIM: “Why?”
ME: “Cause I’m looking for my swing and I can’t find it.”
HIM: “Well, you can borrow mine.”

I Am From….

Our church asked us to write a poem or verse about where we are from…or who we are. I didn’t have this done in time, nor did I know what it would be.

But tonight it came:

 

I am from the womb of a black haired, dark eyed Jewish woman who shouldn’t but did.

I am from the seed of a brown haired, green eyed man with sawdust on his hands.

My contractions began in the middle of the Goochland Depart of Corrections while she served for crimes I know nothing about.

I am loved by the hips of a lady who fed children by the dozens while they waited for new homes.

I BECAME THE CHILD OF:

Two people who couldn’t but did.
A woman and man who loved and served, yet were left empty handed.

A history of dairy farms, hay bales, tractors and early mornings.
Mountain churches, outhouses, barefoot babies and bullet holes.

Swinging bridges, hollers and Sunday School.
Wagon rides, britches, coverings and Bibles.

Mennonite history.
Grandchild of a Bishop and missionary.
Daughter of ministry.
Child of expectation.

Brought up in the world of buses and taxis.
Vacationed on tropical beaches…surrounded by palm trees, monkeys and sun.

Surrounded by Hindus and Muslims and Pagans.
Sleeping in to the sounds of water on sand.

I AM NOW:

Addicted to water and sunsets and tidepools.
I long for hot sunshine and wine and tomatoes.
Milking cows in my sleep while waitng on surfboards.
My knees are bruised from prayers for my children and
I can’t stand the silence when the Imam calls Time.

My life has spanned countries, nations and cultures.

Yet, at the close of the day….

I am fully the product of where I have come from. The heritage born in me…the culture fed into me….the lifetimes of living sequestered in me…

At the end of the day….
I come from a place I’ll never return to.
I was born in a place that I’ll always call home.
I lived in a place that I’ll always return to.
I am in a place that I’ll make my own.