If you're going through Hell, keep going.

The title today, was stolen from a quote by a United States President, but is relevant to parents in the throes of dealing with a new MH/MR diagnosis. I recently wrote an Autism Awareness article for Main Line Parent Magazine (http://mainlineparent.com/2012/04/autism-awareness-month-advice-resources/ ) which stirred up a lot of old memories of what life was like for our family pre-diagnosis and in the years following.

The lack of affection, the temper tantrums, the sensory sensitivity and consequent behaviors...it was a nightmare, especially when we didn't know what we were dealing with, or where to go for help.

I remember driving up the road toward a specialist appointment, and being in tears. The frustration, the helplessness,feelings of being alone, and overwhelmed...it all came to a head, and I began crying out to God: "When do I get a break?!"

It was at that moment that I stopped at a traffic light near a very old cemetery. There's something soothing about seeing those old stones, with antique script work under those shady trees, and I noticed something that particular day. Something significant.

God had answered my question in that moment.

My eyes rested on gravestones belonging to a husband and wife. Both had passed in the 1700's, and much of the writing was weathered away, except for their names, and "at rest," and "sweet rest" respectively still being visible.

Put your hand over your heart...do you feel that? That's called purpose. As long as we are living, even when it is difficult, even when it feels like another dead end, DON'T GIVE UP!

My grandfather was big on reciting Longfellow's Psalm of Life, but one of the last stanzas always stuck out at me:

"Let us then be up and doing,
With a heart for any fate.
Still achieving, still pursuing,
Learn to labor, and to wait."

As parents of special needs children, this is especially true for us. Don't give up.

Conversations with Kelsey: revealing shades of gray

My Kelsey has most vehemently informed me that she does NOT want to go to ESY this year. Apparently, as the weather improves, like most kids her age, summer vacation is on her mind. Add her black and white reasoning, and UGH!

What is ESY? I promise, it's not torture.

It stands for Extended School Year, and is something that many kids with ASD are eligible for, via their IEP's. It translates ( for us) into an additional month of half-days ( morning to noon) of instruction during the summer. Teachers quiz their students post Winter holiday break ( do you love how PC I made that statement?) to see how much their student has retained. Students who lose skills qualify for ESY services. And it's fun, generally set up like day camp, with plenty of opportunities for fun and outside play.

Up until now, this was something that Kelsey looked forward to. Not so much anymore. She wants to go on vacation, play with friends at the pool, and take day trips to the beach.


"Mom, my friend Genivieve doesn't go to ESY! Why do I have to go?

"Because your teacher and I think it's a good idea."

"Well, I think it's a STUPID idea!"

I've leaned to pick my battles, (for the most part.). I know when my black and white thinker is on the warpath, it's not the time to try to reason with her.

Tonight, in the van on the way to pick up my husband from work, Kelsey wanted to talk incessantly about a music video...a conversation we've had over and over. She perseverates. To break this broken record cycle, I told her that that particular subject is over.

"We're going to talk about things that make us happy."

*crickets chirping*

"OK...I'll go first. Bunny rabbits make me happy. And kittens. And puppy kisses.
You see those pretty flowered trees over there? They make me happy."

"And singing."

"Yes, Kelsey."

"You know, Mommy, I want to be a kindergarten teacher with Genivieve when I grow up."

The moment I was waiting for...

"Kelsey did you know that teachers have to go to school for a long time to become good teacher?"

"Really?"

"Yes, really. And going to ESY helps you to be a better student, which would help you be a better teacher. What do think?"

"I guess..."

Microchipped!

I was sick for most of the winter. Being a mom of four, with two on the spectrum, juggling schoolwork, freelance writing, and working on other writing projects, this was inconvenient, to say the least.

After two rounds of antibiotics, seeing an ENT specialist, a CAT scan, and bloodwork to rule out Mono and Epstein-Barr, I found myself on the receiving end of an upper endoscopy, and having a microchip stuck to my esophagus. For the next two days, I get to wear a wireless device that measures my ph levels, which will hopefully help my doctor figure out what to do with me.

My directions for the wireless system is that I have to press the appropriate button for the symptoms on the unit ( about the size of a beeper), write in the diary what times I eat or lay down, and keep the unit within three feet of me AT ALL TIMES.

If I don't, it will alarm.

It made me think of how this this technology can be used for kids with Autism.

My experience with my kids on the spectrum, is that they are FAST! I have literally turned my head for under ten seconds, and they were gone from sight. Our daughter's autistic support class has even implemented a specialized door system,effectively preventing elopement on their watch.

There simply is nothing scarier for a parent of a non-verbal child. They cannot tell someone their name, phone number, or parents' names. Non verbal kids in the spectrum cannot tell a police officer that they are lost. I have seen several stories in recent years about children with Autism Spectrum Disorders wandering off, in the middle of the night in the city, or out into swampy wildness for DAYS. Not all of these stories end with a happily ever after...

I wonder what others think about privacy issues, and even the process of insertion of a device that may make their children safer.

My chip...I don't feel it. It doesn't bother me. The only reason I know it is there, is because someone told me it is there, and I can see the ph numbers changing on the beeper like unit.

Would a cross-breed device, a "pet type chip" along with a gps wireless monitor (that alarms if your child wanders out of range) improve the quality (read:safety) for non verbal children (and even adults with ASD,or even Alzheimer's) benefit from such technology?

Universal energy

I took a yoga class last semester.
Now when a yoga article makes the news, I notice.
I read one recently, that talked about all of us having the same energy in us that had been present at the Big Bang that began our universe.

I don't know if this is true...who does? But, after losing a loved one, it's comforting to think of that person's energy still being around.

This semester, I'm fulfilling my science requirement. The first portion of the semester focused on astronomy, and the life cycle of stars.

A high mass star transitions from a nebula, essentially a "pre-star," consisting of a cloud of interstellar dust and gas, into a protostar. In maturity it becomes a main sequence star. As the main sequence uses up it's fuel, it becomes a red supergiant, before finally exploding in the form of a supernova after it's gravitational field collapses.

A supernova explosion is so powerful that it has a tendency to throw other stars in its general area, elsewhere.

Having lost friends and family, I was struck by the similarities between our stars and our loved ones:

Our loved ones are our shining stars...and once the gravitational pull of their love is gone, all of us surrounding stars do tend to scatter...find different orbits and gravitational pulls.

Recently, we suffered the loss of a dear friend. His children live in different states, and live very different lives. Without the gravitational pull of a loving father, I worry about those distances becoming permanent.

Is it kinder to let nature take it's course and leave these young star-lings to their new orbits? Or do we pull out our telescopes, radars and space stations to convey messages of love and concern and try to bring them together?

I'm never sure.



Star light, star bright,
First star I see tonight,
I wish I may, I wish I might,
Have the wish I wish tonight.

Catching up

it's been awhile since I've updated.

The pluses?
Kelsey is still in autistic support at our preferred school site. Due to the excellent interventions of her mainstream teacher, has friends this year! Real friends, who pass her loving notes and pictures, include her in recess activities on the playground. She began guitar club, and is learning t play acoustic! Brandon, our youngest, has joined Kelsey at her school, but in mainstream classes. A "choice" necessitated by the intention of not letting our home school principal a second crack at discrimination one of our kids. We're thrilled with the result. He's thriving there!
In the last nine months, I've completed fourteen more college credits (working on six more this semester).

The minuses?
I stayed a week at Children's Hospital of Philadelphia with my son who needed emergency surgery (necrotic and gangrenous appendicitis), nursed a mother who fell and broke her wrist, dealt with impetigo (x3) with my youngest daughter who continues to come home infected from school.

My mother in law continues to wander deeper into Alzheimerville.

We refinanced our mortgage, bought a new van (the old one putzed out on us). Payments are a challenge.

We lost a dear friend, who left us far too soon, due to cerebral hemorrhage following a massive stroke.

Life is hard, but family is worth everything. When this semester is over, I am going to sleep for a week....before painting the house.

How are things with you?

Maggie

Maggie was five when I was born. She was everything an older sister should be.
I know sometimes older sisters are known for being mean to their little brothers, but that wasn’t our kind of relationship. I can’t remember her ever being mean to me, which is something, because I can’t remember anything about my childhood, without Maggie being a part of it. From the time I could remember anything, she’d be by my crib waiting for me to wake up. She was always there…just waiting for me.

Maggie would wake me up early on the weekends. We snuck cookies on Saturday mornings and watched cartoons. She always heard Mom coming downstairs and made sure she cleaned my face, and got rid of the crumbs on my pj’s to hide any evidence of the stolen cookies.
She was always protective like that. She even used to eat my green beans and broccoli so Mom wouldn’t find it stashed in the napkin. She hated hearing Mom yell. She’d even risk Mom’s wrath, by putting herself in the middle when I did something wrong.

My favorite memories of Maggie were on vacation. Getting to South Carolina wasn’t fun. I hated being in the cramped minivan for fourteen hours, being stuffed in the backseat between boxes of dishes, suitcases and bags of bed linens. Maggie hated long car rides too, but for a different reason. She would barf, and had to take special medicine to keep from getting car sick. Even though she didn’t complain out loud, you could take one look in her glazed brown eyes, and know she wasn’t feeling good. I felt so grown up when she’d lay her head in my lap all the way, and let me take care of her, stroking her back. She responded with the occasional moan as we bounced over potholes on 95 South.

Once we got to South Carolina, she was fine and we always had a great time exploring and getting to know the locals again. Some of them changed year to year. From the time we got out of the minivan, Maggie was ready to go meet everyone, and just GO! We spent most of the month outside, exploring, and playing, only coming inside to sleep and eat.

Our family always spent July in South Carolina. Most of the folks who lived year round at our vacation spot in hated tourist season. City folk were known for being loud, rude and sometimes even destructive. But Maggie was always so outgoing and friendly, when the neighbors saw our parents, they complimented our behavior. The neighbors in true Southern style, gave us tokens of hospitality in the form of cobblers and Barbeque, which was Maggie’s favorite thing in the world, next to Mom’s Yankee Pot-roast.

I loved swimming at the beach with Maggie; I think she must have been a mermaid in another life. We loved chasing seagulls and looking for dolphins… she was always the first to spot them. She’d nudge me gently to point them out quietly so we wouldn’t accidently scare them away.
We watched them, and ate sandy peanut butter sandwiches on the beach, and drank iced tea that had gone warm by lunchtime. When it got too hot for the beach, we went looking for bullfrogs in the tree lined area of the Cooper River. Maggie’s the only girl I know, who doesn’t get grossed out by those big old slimy frogs, and the occasional snake. She’d chase them out of the bushes and reeds to make it easy for me to catch them.

Mom and Dad never worried about us being out and all over town when Maggie was with me. She saved my life. She got her picture in the local news when I was two years old. I don’t remember this, of course, but I climbed out of bed when I was supposed to be napping, and went to take a swim next door. Mom didn’t hear the screen door flap closed behind me, but Maggie did, and quickly followed. She wasn’t fast enough to stop me from jumping in the deep end of the Smith’s pool, but at 7 years old, Maggie was a real hero, and she jumped in after me, and pulled me to the shallow end by the collar of my shirt…at least that’s how the story was told in the newspaper cut out that’s in the family scrapbook.
Mom and Dad knew that as long as Maggie was with me, I was safe.

When I was eight years old, we didn’t go to South Carolina in July.
I had just finished third grade, but things weren’t the same at home.

Like a good big sister, Maggie was always home when I got off the bus. From my first day of kindergarten, she waited by the front door, and wanted to hear about my day. Mom would give us a snack and I’d tell her about what happened in school while I did my homework.
But, since Spring, I’d find her resting in bed when I got home, not waiting for me in the living room.
She was tired all the time. My friends would knock for us, and ask if we could come out to the playground. Maggie just wanted to lie on the sofa. She seemed sad, and didn't want to go play.
When they thought I wasn’t listening, Mom told Dad that she was worried about how Maggie was acting…”since Maggie’s a teenager.”
Dad suggested taking her to see Dr. Makin, just to see what was going on. They got an appointment for the following Wednesday.

Life changed after that.

When I got home from school that Wednesday, Mom’s face was blotchy, and her eyes were swollen and tearful.
She was on the phone, but shushed me when I came in, and told me to “be quiet because Maggie’s asleep in bed”, and “she had a rough time at the doctor’s visit, so don’t bother her.” When she turned her attention back to the phone, I heard her sob, and say, “It’s too late and far gone…all we can do now, is make her comfortable.”
I peeked in on her, and sure enough, just as Mom had said, she was fast asleep, with her pink blanket pulled up over her head. She looked comfortable enough. I stood there, just watching her sleep for a few minutes, wondering what was going on. I lay down with her and wrapped myself around her…snuggling into her warmth.

Dad came home from work early.
Dad never came home early.
He said that we needed to talk.

Three weeks later, Mom and Dad woke me up, and told me to come downstairs.
Maggie was still asleep in bed.
I kept thinking that it was strange that Mom was up before Maggie.

It turned out, that Maggie wasn’t asleep.
She wasn’t even in bed.
What made Maggie special wasn’t in her bed. That loving wonderful girl wasn’t there anymore.
Instead, there was an unmoving shell that resembled her, in her bed.

We buried our Maggie’s ashes out under the peach tree at our vacation rental in South Carolina last August. I carried the small cardboard box on my lap, in the backseat on the way down, stroking the label with her name.
Dad keeps her pink collar on the rear-view mirror in the minivan. He name tag jingles every time we go over a pothole. Sometimes, just for a second I forget, and look for her in the seat next to me, but then I remember.
I sit under her tree every year now, at least for a little while, thinking of that sweet girl. We’ll never have another beagle like her. She was one of a kind.

I hate you

My dad had left by the time I was three.
You must have known that already.
Why else would you choose the daughter
of a single mother, with an infant son?

While you are surely dead now,
I can still smell the stink of those
nasty fondant filled licorice you enticed me with.
I cringe when I see them in the candy shop.
I still hate greenhouses and cacti.
No wonder I hated Arizona.
I still feel those old calloused hands on
places they never should have touched.

Did you know, that on that day,
you singlehandedly shaped the rest of my life
more than any parent, counselor or teacher ever could?
You showed me I was not safe.
You showed me not to trust.

I stopped washing and brushing my teeth.
I slept under heavy woolen quilts,
even when it was August.

I didn’t go visiting friends.
I didn’t want friends.
Friends could not be trusted.
They hurt you. They hurt your children.

I hate you. I hate what you’ve done to me.
I hate that I worry all the time.
I hate that I have to lock my doors and windows in a ritualistic manner.
I hate feeling dirty and used.
I hate feeling un-normal.

I just want to be normal.
And just when I begin to feel normal
something happens, and I know that I’m not.

I hate that I’m not.
I hate that there’s something wrong with me
I hate that there’s something about me, that draws you in.
I hate that I can’t see that until it’s too late.

I hate that you go on living in my memories, when you should be dead,
and I feel dead, when I should be living.