Saturday, April 2, 2011

A Bad Haircut


Today is National Autism Awareness Day.  For those of you parenting a child with Autism, I am sure you are VERY aware.  On CNN this morning they said: "wear blue for Autism."  Sorry if I offend, but I think it's ridiculous.  365, 24/7 parents are on the front line.  I think today is a day others could do something nice  for a family with an Ausitic child (or 2, or 3).  Like, watch the kid while the parents take a nap.  Start there, skip the blue nonsense. :-)

1. Don't fall into the "bad haircut syndrome" ... the child will not outgrow it.


Denial comes in all forms.  Sometimes we need denial, as life is too much.  The invisible policeman in our brains says:"Not letting this information through."  It's a built in check and balance system designed to keep us sane.  Other times we become that policeman and refuse to deal with the situation at hand.  Autism is a developmental, life long  disability.  Professionals sometimes say: "developmentally delayed."   When they started using that "delayed" phrase with my son I thought they meant his development was just late for the party, but would arrive.  His biological father thought it would arrive any minute.  The more I learned, the more I realized "delay" was used because the "Pros" didn't really know, and in their defence could not know what my 4 year old could do in 20 years.

When one gets the diagnosis...there are stages. Relief at first, to know what "it" is.  Then grief begins.  As this is not what we thought we were getting when we decided to have a child.  The loss of the dream is what I grieved...at first.  Elisabeth Kubler-Ross's grief model: http://en.wikipedia.org/wiki/K├╝bler-Ross_model .
Denial, Anger, Bargaining, Depression, Acceptance.  Not always in this order. :-)

Denial.  It comes in all forms. Some parents really believe the child will outgrow this.  That somehow they will come home from work one day and it will be all gone.  Comparing my child to all the printed information.  If Jason bangs his head, and "my Bobby doesn't...see he doesn't have Autism."
Blaming the Autistic behaviors on parents or family members.  "Oh, his father did the same thing when he was little."  Or blaming vaccines, pregnancy, ourselves keeps us in denial.  Aspergers diagnosis is the one that really gets me.  "My son has Aspergers, he's doesn't have Autism."  I don't know what the DSM V decided...but in IV Aspergers is under the Autism 299 section.  Cure is a sly form of denial.  Many parents get stuck in the "cure" and never address all the issues that need to be.  If they can cure their child, they never have to accept it.  The slyest of all is Control, and that could be it's own book. How I controlled it was to learn everything possible, immersing myself in books, papers,  and information that made me feel as if I could just get that one piece of information--I'd be on top of this Autism thing.  Hahaha...it never happened.  Worry is another mask of control. "If I worry about it, I am somehow doing something about it."  Uh...not really. I was just making myself sick, and I had to face it.

Getting all the information about my son I could, was the best thing I could do for him.  He has huge auditory processing difficulties.  His wiring makes his hearing scrambled.  He had better than normal hearing, and it all went into his brain as if I had put it into a blender. No wonder he didn't talk until 4. Then when he did, it was garbled. It's what he heard.  A 4 hour audiologist appointment showed me this. He sat on my lap in a sound booth.  The Dr. said two words and my son was to repeat them.  20% of what she said, he repeated correctly.  I realized that part of his non compliance
(don't you love that term?) was because he didn't even hear what people were saying.  That was just a start.  His processing issues of all his senses needed evaluation.  Which is why sensory integration is so important.
 http://sensorysmarts.com/ 


His hearing is still scrambled. My son has strange pronunciation of certain words.  Dyslexia is a natural outcome of auditory processing trouble. How can one be hooked on Phonics, if one doesn't hear correctly?  Which is why we moved to Albuquerque all by ourselves when he was in 8th grade and not reading.  I found a private school that used different neuropathways to teach reading and writing.  Many thousand dollars later...I am happy to say it worked.  He is able to read and write well enough to be a productive member of society.  He will never be a book guy. But he's a magazine, website, texting guy at 23.  If I had stayed in Illinois they would have residentially placed him. At the time Illinois had no programs for a high functioning autistic, dyslexic, high IQ kids.  Their answer was to send him to a hospital day school, or Texas residential warehouse program.   I, on the other hand--took his IEP and used it for packing material in our move.  http://www.dldsycamoreschool.com/   I am eternally grateful to the teachers at DLD Sycamore School.  He was a handful!


In a nutshell: I learned my son's strengths and weaknesses.  I used his strengths to reach him.  Today he texted me saying that a woman had come in his store with one of my Etsy shop necklaces on.  He still hears A and I as the same letter, and the spelling wasn't great.  But I understood what he was saying, and that to me, is what counts.  


Thanks for reading. 
Each day is a gift. Open now.
xo,
Suz

PS. Please forgive the breaks in this crazy format.  I get it all set up and hit "publish" and it's a mess.
I don't know why. 



Friday, April 1, 2011

Autism Awareness Month

My Son says: "I am not a puzzle piece!!"

Having a strange sense of humor, I found it funny when I heard the news this morning.  "Happy April Fools Day" and "Autism Awareness Month." Does that mean that it's just a joke? That 1 out of 89 boys are not really Autistic?  I don't really think that, but they were linked together on the news, Facebook, and Twitter this morning.

As a parent of an adult child with Autism, I don't think I really need a month of reminders.  I got the memo. Last year I wrote a blog about the Temple Grandin movie on HBO. http://theknifewife.blogspot.com/2010/02/still-waiting-for-mother-ship.html  Since it aired, it's gotten an Emmy.  The world saw Temple at the awards show.  The doctor who published the study about vaccines and Autism has been outed for false reporting.  I think most people know someone on the Autism Spectrum.  We are still in the dark about why or how.  There are hundreds of Autism cures, diets, behavior programs, and shisters who prey on parents with Autistic children promising a "cure." Below is the link to the HBO trailer...I wish I had it back in the day.


When people hear about my 23 year old son with Autism who is holding a full time job, engaged to a lovely and brilliant young woman, living independently, and being sent to vacuum cleaner conventions in Las Vegas by his employer, they want to know the secret.  If I had one, it wouldn't be a secret.  I would shout it from the rooftops.  I can tell you a few of my golden rules for the higher functioning end of the spectrum.  I can also tell you that he still has issues, though more complex.  More on that later.

1. Don't fall into the "bad haircut syndrome"... the child will not outgrow it.
2. Families are the bottom line. So don't expect the school district to fix it.
3. Address sensory issues. Here is an excellent link on Sensory Integration issues:
     http://sensorysmarts.com/
4.  Teach to the child's/adult's perseverations.  Use your child's favorite obsession to teach real life
      subjects. I laminated chicken pictures and we did "chicken math" to teach arithmetic.
5.  Find a behaviorist and work on your behaviors as well as the child with Autism. Consult with this
     professional as unwanted behaviors arise.
6.  Don't swim in this sea alone. Support groups for parents saved my sanity.
7.  What is so special about Special Ed?  Most programs allow bad behaviors to continue. But real life
     as an adult does not.  This goes back to rule #1.  I had to explain to our school that my son would not
     always be a school aged child.  They were surprised by this news. :-)
8.  Teach the child to learn to live without you.  How?  Over night summer camps.  Although expensive,
      they will give confidence, skills, and a sense of independence that does not come naturally.  Parents
      can recharge their batteries. Which is imperative.  Many have sliding pay scales.
9.  Find a program that matches the child vs. trying to make the child match the program.
10.  They need the most love when they are acting like they deserve it the least.  Love and affection
      will be accepted and reciprocated if you continue to give it.
11.  When the child is capable/ready/mature/wanting: get a pet that is ONLY the child's.  Teaching your
       child to care for this pet will teach compassion, and life skills.  This is a tricky one which is why
       it is last.

During this month I will write about each of these subjects.  Please feel free to write me privately at:
polkadotmagpie@gmail.com .  If you are a parent who feels like they are drowning in Autism. You are not alone.  I have been there many times.  You are probably sleep deprived, financially and emotionally spent.  In the first few years after my son was diagnosed, I needed help as much as he did.  I give you full permission to put your oxygen mask on first.  And a BIG (((((((HUG))))))))))).

Below is the link to Temple Grandin's Autsim site.

Thanks for reading.
Each day is a gift. Open now.
xo,
Suz
     

Thursday, March 31, 2011

Getting To Know Them

The chick in the middle is Ethan's favorite.
The standard buff Cochin on the left is a giant.
 The brown dark Brahma on the right.
It's been only 5 days since the chicks arrived.  They are all doing well.  We are beginning to see personalities in many of them.  Ethan has his favorite who is the "surprise" chick the hatchery sent that is a Seabright.  He picks this chick up (I think it's a boy) and rubs under it's ear, and the chick lays down and sleeps on E's chest.  It's a very calm bird.  My favorite is still the black Cochin.  When we open the door of the nursery several of the same chicks come running to me.  They haven't learned to put on the brakes, so they sort of crash land when they need to stop.  It's pretty funny.
My favorite has many feathers now. You can see that her
"type" is perfect Cochin from the side.
Here she is full on...


Tomorrow we are going to our friends ranch in Magdelena that I have written about before. Communing with cows and calves.  I can't wait.  For now we have no water...tonight something happened to the well. In the light of day, we will figure it out.

Good Night!

Thanks for reading.
Life is a gift. Open now.
xo,
Suz

Tuesday, March 29, 2011

Chick Party

A black Cochin, she is a beauty...and I think my fave
Last night was the "Chick Party."  I invited lots of people, and in traditional NM fashion only a few RSVP'd.  So I didn't know who was coming.  We ended up having a house full.  I made an egg casserole, salad,  and Ethan and I baked chick cookies.


One woman came to the door and said: " If you only knew the kind of "chick envy" I have!  LOL, right?   Chick envy, who knew.  Another person brought me BBQ sauce: "In case it doesn't work out" she said as she handed me the bottle.  Having a sense of humor, that really cracked me up.  Another person brought me a half dozen eggs from a local farm: "To give them ideas" he said.  
Guess which one of the 3 brought the BBQ sauce?
Charlie Z who knew a lot about chickens, to my surprise
A standard and bantam buff Cochin

Thanks for reading.
Each day is a gift. Open now.
xo,
Suz

Monday, March 28, 2011

Don't Count Your Chickens Before They're Shipped


A bantam buff cochin posing.

Saturday when we were  leaving to pick up Ethan from the airport my phone rang:
"Hi, this is Ruth from the Post Office..."
 I think I said: "They're here!"  I had received an email from the hatchery saying they would be shipped yesterday and would arrive Sunday -Wednesday.  So much for autobot email.  I was ready with everything but securing the sides of the coop with wood to keep the temp up.  So we went to the airport, got the grandson and went to the post office. E held the chicks in the box on his lap, peeping the whole way home.

Or son and fiance came over and helped put the wood on the nursery. The chicks sat in the bathtub in their box with a lamp over it suspended from the shower rod.  I got the temp in the nursery up to 95 degrees and in they went.  A few still had their egg tooth. Which is used to peck through the shell, and then falls off.  As we were putting them in, it looked like there were more than 24.  Hmmmm.

A crazy brahma doing the chicken dance :-)
I tapped on the feeder with my finger and they all came up and started eating. Then stuck my finger in the water (which has chick starter in it) and wet a few beaks.  They began to eat and drink like they'd been doing it forever.  Pretty amazing.  As the sun went down we had a hard time keeping the temp up.  So Bob and I opened the patio doors and brought them in the livingroom for the night. Switching out the heat lamp for a smaller bulb.  Lola the cat sat on top, and Buddy the dog posed in front.  There was a lot of staring at this nursery from all the animals.  :-)
nap time 
When we changed the papers in nursery we counted the chicks as we took them out.  27 not 24.  On the invoice in the box I noticed that more Langshan  chicks had been added, as well as a "surprise exotic breed."  There is one chick with zebra stripes on it's back and a buff colored head.  I think it's a Seabright bantam.  It would be my first of that breed. 

Tonight they are back in the living room in front of the patio doors.  In the next few days I will work on making the nursery warmer, so they can stay outside at night.  It's still pretty cold here in NM and they need more insulation.  There is still so much work to do on "Fort Chicken.".  The whole family worked outside today. It was back breaking work moving tons of stones, landscaping cloth, and putting down the chicken wire.  But they all lovingly did it, as they know how happy keeping chickens has always made this mother hen.

Tomorrow night is the "Chick Party."  I am baking chick shaped sugar cookies, and egg dishes.  Good night chickens, and good night to you all.
Good Night
Thanks for reading.
Every day is a gift. Open now.
xo,
Suz