The Autism Effect

 

I had a lovely conversation with my daughter K1 yesterday. As mothers of autistic children, our conversations often veer into the topic of raising a child with autism.

Now that my beloved K3 is an adult, my responsibilities as an autism mama have shifted and morphed to adult issues. For K1, her tasks are just beginning. Not only dealing with regular toddler issues, but getting little Ben through his therapies, working on his communication and worrying about how to get him ready for school at some level.

As if all that wasn't enough, one of the biggest tasks the mother of an autistic child faces is education. Not just educating herself, which must be done at breakneck speed so that she can learn to advocate for her child, but educating family and friends. The education of people in her life is crucial in two ways. Number one, the entire family needs a support system, people they can talk to that will listen, accept and help them process what is happening. Number two, the attitudes of family and friends will play a crucial role in the years to come, helping the child feel comfortable at family gatherings and other social situations.

I was very fortunate to have my Dad, who when told of K3's diagnosis, was immediately on board with "Okay, what does she need? What do you need? How do I help?" To this day, no matter where he is, he calls K3 at least 3 times per week. While he's always teased her, as he does with his other grandchildren, he also talks to her in basic terms about what she's doing and what her interests are. For all of her 21 years, he remains a strong presence in her life.

K1 is fortunate in that her family immediately knew what she was facing and accepted Ben for who is, whatever he'll be capable of doing. Even though Ben and K3 are different in how autism affects them, K1 was raised with K3 and has an insider's view of what some of Ben's challenges may be. K1's in laws are still coming to terms with the diagnosis. Sadly, it is possible some of them may never completely accept an autism diagnosis.

To illustrate how autism affects toddlers, here's a few examples of Ben and K3 around the age of three:

• Neither Ben nor K3 could tell you their names.
• Neither could follow a series of instructions or even a conversation.
• Neither could tell you what they wanted or needed.
• Neither of them had ever uttered the word "Mama"
• If over stimulated, both would cover their ears and begin rocking
• Both struggled with unexpected change
• Both like watching animals on TV
• Both were late potty trainers
• Both have meltdowns during therapy, it's that uncomfortable
• Neither can tolerate discipline. Even a stern tone can break their heart because they don't understand what you're saying. It's like their main link to this confusing world has just rejected them.

As for differences, K3, was fairly placid, never reached for toys or food, but craved visual stimulation to keep her world moving. She had sensory issues that precluded things like holding crayons, touching food, or enjoying a rocking motion. She was also terrified of bugs.

For Ben, he has more of a balancing act because he self stimulates via dancing, twirling and toe walking, yet he experiences over stimulation with a sense of panic or withdrawl. He may have a meltdown if he doesn't understand what is happening around him and he can't yet verbalize what he wants.

I tell you all this because K1 and I feel it's important for more people to understand autism as the rate of diagnosis rises. That toddler throwing a fit in the grocery store? It may not be a discipline issue, it may be a meltdown from over stimulation that Mom can't fix in the cereal aisle. The screaming child in the park? They may be overcome by sheer terror at the sight of flying insects. That child that can't look at you or respond when you talk to them in Target? They may be more than shy, they may be non verbal. That mother that looks like she wants to cry? She probably does...

I told K1 yesterday that I think it takes some very special attributes to be an autism mama. Not that I had those skills or attributes when I had K3, but I sure as heck developed them. And while I didn't have the internet to help me figure things out, thankfully, I had the amazing therapists at Children's Hospital to guide me. I see K1 developing those same skills and attributes, the patience you didn't know you had, the compassion for your child's struggles and the practicality needed to get through each day with sanity intact. The ability to say screw the laundry, dinner and dishes if you child needs to be held for few hours. I know that's a sign for good things to come for Ben. She's well on her way to being an excellent advocate for little Benny. He's going to need her skills as he faces the challenges of noisy classrooms full of strangers in the years to come.

The one thing we barely touched on yesterday, was the autism dad. It's a difficult role since in the early days they're often at work and rarely see the therapies and other daily challenges mom and child face. Still, the partnership between mom and dad can be a huge asset, both for each other and the autistic child. Speaking only for myself, after the initial shock of diagnosis, TOG and I were solid in all the planning phases for K3. We always knew what we wanted at IEPs, we never wavered publicly (although privately, in the evening we often discussed how to help her and what to ask for) and we provided a sanctuary for K3 when she came home from school stressed out and utterly silent. At times she preferred one or the other of us, but that just means that it took both of us to meet her needs. I think that's what K1 and her hubby are finding as well.

As much as I never expected to have a child with autism, I also never anticipated have a grandchild with autism. But I wouldn't change a thing. I'm going to enjoy learning about Benny just as I enjoyed my little K3. Seeing the world through their eyes is a precious learning experience.

AG out.

Catching the moon

I was really lucky to wake up the other night and catch the supermoon from my backyard. The Brute Squad thought it was pretty odd to see me in my pyjamas, tiptoeing around the back yard in the middle of the night with my camera. They were happy to escort me throught the too-tall-grass over to the fence which I used as an impromptu tripod.

Catching a shot of the moon had been a goal I'd set, but one I didn't think I'd achieve. The insomnia has been pretty bad lately and I'm falling asleep earlier than ever. But I've found that being more determined has helped me to achieve some goals I've been putting off.

I've been very focused on losing some of my steroid weight. Back in January the doctor assured me that losing some weight would help my asthma. So this week I tried bike riding again. I've got a ways to go. All was well the first couple days, and then the lungs pitched a fit. So, I'm waiting til they settle and then we'll start in again!

I'm determined to catch the moon in more ways than one!

Wishing all the moms out there a wonderful mothers day!

AG out!

Spring... at last

Spring has sprung in the Northwest. TOG's flowers are in full bloom and the weather is starting to warm up. I love Spring, even more than Summer or Fall. Everything in my yard is coming to life. My raspberries are loaded with blooms and I'm craving asparagus and other spring foods.

The dogs are enjoying the sun streaming in through the windows and even starting to spend more time outside. The fridgid dash between the raindrops to do their business in the winter are becoming a memory and there are tons of morning smells that must be explored and lingered over while the spring birds sing of nests and um, bugs...

My camera and I have been spending more time outside, enjoying the changes . TOG's daffodils put on a show with these beautiful double blooms with yellow streaks. Worth crawling around in the grass to get a shot.

Worth sitting at the pier and watching the sun set...

Happy Spring!

AG

Hair Brained

 

As I was sitting here sipping coffee and planning my day one of those silly hair commercials caught my attention. One of those where the model is swinging her hair back and forth... and the stylist has rubbed it down with a combination of mink oil and petroleum jelly... and the camera crew has two lamps with about 55,000 lumens each pointed at her head to show how shiny the hair is. I know the goal is for me to say to myself "My hair could look like that if only I used Acme All-Natural Wasp Butter Almond paste organic tofu herbal shampoo. Alas..."

What it really makes me think is that most women would buy pretty much any product that promised to make their hair look better. This thought process starts when we're quite young...

I remember when I was about 5, my mother got the idea that I could look like Shirley Temple or Veronica Lake. She permed my hair, and every weekend I got shampooed and had to sit on the floor in front of her while she set my hair. It was so tedious and boring I used to pop my big toes back and forth out of joint to keep from slipping into a coma. And no one was fooled by the big giant scarf she tied over my roller set when she sent me out to play. There was full on mocking. None of the other girl's moms did that... probably because they knew that after a few hours playing outside in a roller set, their kid's hair would be a disaster. Eventually, my mom gave in. The perm and the roller set didn't keep my hair in place while I was tearing around the wilderness of Alaska.

When I was in elementary school, my hair style consisted of braids... braids that started out so tight that my eyes were practically pulled back to my scalp line (unless my dad did them in which case they fell out on the bus on the way to school). By the end of the day, my braids were lopsided, fuzzy and looked like the tail of a cat that had been pulled through stickerbushes backwards. I used to look at the junior high girls getting on the bus with their tidy bobbed hair and barrettes and wonder what magical thing was going to happen to me at the end of 6th grade that was going to make my hair look that good... all day.

Fast forward.... for um...many years. I don't wonder anymore. Nothing magical happened at the end of 6th grade. No ceremony, no mystical spell, no 'hair raising' revelation. However, I did start carrying a purse (made out of an old pair of jeans thankyouverymuch), with a comb and tending to my hair throughout the day. By that time, the bob was gone and I, like most girls could manage long straight hair. And the beauty industry responded by creating a product called Long and Silky!

Today I sit here with, you guessed... long straight hair. I've done the uber fashionable inverted bob, dyed it a variety of colors, highlighted it, cut it so short they shaved my neck, bleached it, permed it, layered it, grown out bangs, teased it to high heavens and sprayed it til it didn't move.

I've also grown it out and donated it to Locks of Love 3 times. Definitely the best work my hair has ever done. I sometimes think of my hair out there covering some little girls head so she doesn't get mocked.

I guess being hair brained goes full circle!

AG out!

Touched by Autism

I've got a few topics swirling in my head. I guess it would help if I posted more often... At least there would be no swirling because I'd be emptying my brain on a regular basis! So I'm going to empty gradually, I hope, and start with the most important first.

As you may know, April is Autism Awareness month. This month has a great deal of significance to my family because of my beloved daughter K3.

If you've never met K3, you're missing out on one of the best experiences of your life. She's shy, genuine, sweet, a lover of animals and blessed with a fabulous sense of humor. In spite of her autism, she totally gets Monty Python and Mel Brooks and can recite huge chunks of dialog from many of their movies. She gives awesome hugs and listening to her laugh is one of my greatest joys. It's the kind of laugh that pulls you right in and makes your lungs clench (mine anyway) from laughing with her!

Yes, it's been a tough path. And I spent years learning what she needed and how to advocate for her and disputing the opinions of the "experts" when they didn't jive with my maternal radar. But I wouldn't change a thing. Being K3's mom has enriched my life in ways I couldn't have imagined and frankly don't know how to express to you. It's just good. And it's created a bond between the two of us that feels unbreakable.

I tell you all this for a reason. Autism continues to touch our family's life.

My little Benny, my grandbaby is now recieving therapy for autisum. That my friends, is a damn hard sentence to type.

It has awakened many of the feelings I had when K3 first started developmental therapy. And I see the path K1, Benny's mama is going to walk with him. I feel protective, empathetic and at the same time powerless. There's nothing I can do to alter the journey they're about to take. It is what it is.

But I know what it isn't. It isn't genetic, it isn't due to vaccines, it isn't about glutton or vitamins or allergies. We don't know what causes autism. We just know it's effects. And we know they vary child to child.

K1 has the advantage of watching K3's journey. That's more than a lot of parents of newly diagnosed autistic toddlers have. She also has the support of her family and friends as well as any resources I can get her as part of my job at a disability agency.

As part of autism awareness month, I encourage you to learn what you can, read, reach out, donate... whatever works for you. Because you never know who is going to be touched by autism.

AG out

Marginalized

I try to keep things pretty light here in Thoracic Park and usually do a good job of it. But in the last month, I have to admit I've been gritting my teeth and counting to ten a lot. A lot. Yesterday I finally felt like it was time to speak and really... what better place than my own blog. I knew I kept this thing around for a reason. 

Before I start, I would just like to preface my remarks by saying that I'm accustomed to being an advocate for the marginalized. 10 years ago, I might not have said that... at least the marginalized part. But really, why do you need to advocate for someone if they're NOT marginalized. I have been my daughter's advocate (she has autism) since she was 6 months old. I will be her advocate til the day I die. You do not want to attempt to marginalize my daughter or try to make her needs "less than." I am well aware of her rights and mine as her mother/guardian. And I have already been quite vocal about the drastic cuts to Medicaid and other funding streams for people with disabilities. It has gotten to the point where my daughter, even after being hit by a truck in front of her special needs program, wouldn't be eligible for funding because there is just not enough and what there is must go to people who are more disabled than her. This is the funding that always gets cut first.

That being said, what irks me lately, is the willingness to see all sorts of views and populations marginalized, particularly women or the poor. Whether it's a presidential candidate's naive statement that he's not worried about the poor because they're okay, or congress' bullheaded arguing over whether they ought to sustain a middle class tax cut or impoverish the rich by arguing over the difference between them paying 1.1 million or 1.2 million in taxes. Dear God. Or a radio personality's slandering of a woman testifying on behalf of birth control coverage, and then apologizing for the words he used but not the intent of his statement. Please.

And don't me started about why we're wasting our congressional hours by having a hearing on birth control coverage. Did we have a hearing on Viagra coverage? No. Any man in America can get as much as he wants and we all know what he would use it for. No congressional hearing there. But let a woman testify on coverage of birth control, which by the way serves other medical needs than family planning...

Slut!

Marginalizing women much?

Teeth gritted. Counting commenced.

Yesterday, I heard the statement that made counting to 10 not worth my time. A political strategist actually stated that the women of this country were not going to be distracted by the "media hoopla" around birth control issues or "misstatements about the poor." They were actually going to go back to "Kitchen Table Politics" and worry about what was really important... like the cost of putting food on the table and vote accordingly.

Really?

Why don't you just come right and call her The Little Woman and keep her in the kitchen barefoot and pregnant so she doesn't have to worry her pretty little head about issues that menfolk talk about.

Marginalizing women much?

I could never vote for a candidate with no empathy for the poor or the disabled, or one that didn't display public outrage over some of the statements made that marginalize either... I could never support a candidate that thought I shouldn't be the main (or only) decision maker in the care of my own hoo haw or other assorted Girlie Parts. I could never support a candidate that wouldn't support cancer screening and treatment for the poor, whether prostrate or breast.

Not only will I advocate for my daughter and her needs as a person with autism, I'll continue to vote my conscience in terms of health care for women in general and my daughter's and grand daughter specifically.

The way I figure it, war and inflation will always be around the corner. I have to vote for the things that count. And hopefully leave a legacy that my daughters will continue... caring about what's truly important and not letting some talking head on television tell them what they should worry about.

AG out

Reflections

It's not like me to miss a month of posts. In fact I never have. Regrets all around but no excuses.

Life has been and continues to be... vibrant. I'm theorizing that this very vibrancy added some time to my recovery from January's asthma abyss. But with February behind me, March finds me very buoyant and able to make plans and enjoy the journey now that my head is indeed above water again!

With plenty of time to reflect on my silly asthma, my family and my job, I find I'm able to enjoy the moment more. And certainly to treasure all the blessings in my life. I think there's a mental healing as well as a physical healing after a medical downturn. And I am letting it proceed at it's own pace.

And I'm positively savoring new things. Whether its a new recipe or a new water bottle or a new photo op, I'm feeling refreshed. I'm enjoying my new ipad, with which I took the above picture... and I'm renewing my love affair with my trusty Nikon, which I drug all over the UK last year.

Now, if only I could take such a refreshing approach with filing my taxes or cleaning my house!

 Hugs!

Ice and Snow

I snapped a number of pictures of our ice and snow last week in the Northwest. It was both an epic and beautiful storm. It was a lot more beautiful if you had power. Today there are still a number of people that don't. We were fortunate and other than a 24 hour stretch with no cable or internet, we came through unscathed.

Unfortunately, some of the storm was unplanned, like the additional 3 inches of snow we got after the ice storm. Please note my ice coated raspberry plants... poor things.

Here's a better shot of them. They took it in the shorts. We'll see how hearty they are come spring.

Here's our neighbor's ice and snow coated tree draped over our fence.

This is the top part of the tree that fell behind our house. You would not believe the noise it made coming down! All you can see in this shot is it's ice coated branches. It fell perfectly between the building and our fence harming neither. Other trees in the area were not so polite and fell on houses, fences and cars.

I'll end with this shot of a lovely old tree in front of my employer's, Even a sturdy old soldier like this was no match for the weight of ice and snow this storm brought.

Here's hoping this storm loses ground as it heads east. We are happy to see it go but hoping it doesn't do our neighbors like it did us!

Warmly,

AG

It's not easy...

It's not easy being a Chihuahua in the snow.

It's hard to find a place to go.

"Hurry up, Maddie," says my Mum.

But every time I lower my bum...

BBBRRRRRRRRRR!

xoxo

Maddie the Chilly Chihuahua

Snow Day

There have been rumblings in Seattle Media about the snow coming! We haven't had any yet this winter, so there was quite a bit of anticipation! And it actually did snow!

During a break in the snowfall, Maddie and I went out front to get her perspective...

She pronounced it Chilly! (this is her abused look)

Apparently Chihuahuas aren't on board for 34 degrees and snow. Who knew?

Wishing you a beautiful day in your neighborhood!

Warmly, AG