Chickens, Cats, and Dogs, and Autism

First, there are no NEW photos, because Google now wants to charge me for my blog.  I may move to another.  Sorry for no new photos.  This has thrown me for a loop.  :-(

Last year I posted a list of my "Golden Rules" of parenting your child(ren) with autism.  I will post them again at the bottom of this post.  When we got the diagnosis of Autism my son was 7.  For years I had battled with his father to get help.  Secretly I brought him to the Speech and Language Clinic at Northwestern University.  Twice a week I paid out of my hidden pocket for speech.

A gesture/sign language was started for "more, no, stop."  And what was my son's first word asking for more milkshake? "MORE!"  The flood gates opened on that milkshake day, and a new word a day started.  The connection between what he wanted and language was finally made.   One day he told his father we were going to speech, busted I was.  That was the end of that.  We limped along until the school district intervened at the start of 1st grade. I had already researched who  to see.  The school, the pediatrician, and many others had said "Autism."

By now the ex husband wouldn't hear of such a "label" put on his child.   He insisted I made him this way or he would out grow these behaviors. I joked and said if he got me some more yarn, I'd make him another one.  It was either special ed, or get out of the district.  School was insistent, and I was  no longer the bad guy.  We chose "inclusion" because that was the only choice.

We lived on the farm at this time.  My son's chicken perseveration was in full bloom.  He connected to these birds.  He loved to sit on his small lawn chair and watch them.  He talked about them and to them in monologue after monologue.  Clucking at kids in school, us, and strangers. I encouraged this relationship, sometimes wondering if it was such a good idea.  But he was gentle, caring, and loving towards these birds.

As you know, his Father was asked to leave through a court order.  So the cats/kittens could come in the house.  One kitten that my son had loved was a brown tabby: "Sylvester."  At 5 he had given Sylvester a haircut one day with safety scissors.  He had cut all his stripes off, because he wanted "a pwain cat."  A plain one.   Where was I when this happened...I don't remember.  But I do remember my parents were visiting, and my mother was sure he was to be a serial killer because of the haircut. Sylvester was none the worse for wear.  He started sleeping on my sons pillow at night in a crescent shape, cradling his red hair. 

After we left the farm we were down to 2 cats, no chickens.  There was a golden retriever puppy my friend had seen in a local pet shop. The thought of a dog caged for months drove me mad. We went to see her.  Of course we fell in love.  "Rosie" was named by my son.  She was a red Golden, almost the same color as his hair.  Rosie fell in love with him, and he with her.  She was sent for training as a service dog for a month.  When she came back she was his constant companion.  His friend when he had none.

When my son went away to a special camp, Rosie was grieving.  She sat by the front door he had walked out of for 4 weeks ago. Barely eating or drinking.  There were window lights on each side of the door that she kept a vigilant watch from.  When he returned she just about mauled him to death with love.  Really, it was a sight to see.  The joy in both of their faces was exquisite.  Rosie was his friend until she succumbed to cancer at the age of 8.

The day we put her to sleep, he was at the Vet's alone with her.  We sat in the car waiting.  We could hear him wailing from the parking lot.  It broke our hearts to hear him cry like that.  I have never heard him cry the way he did that day.   He has not gotten a dog again for several reasons.  One, he's gone all day at work. Two, most rentals don't allow dogs.  One day he will get another, I know it.   In the mean time he has learned to love through pets.  Chickens, to cats, then dogs.  I know the autism books say this is not possible.  I see the way my son loves and shows affection to his fiance.  So don't believe everything you read.

I offer a different story and perspective, as no two children are the same.  We had a visitor once who had a son with autism with her. They spent the night, and in the morning the 10 year old child was standing next to our bed with our cat in a plastic bag.  The cat survived, thank goodness.  And another friend's son who as an adult grabbed and squeezed their dog when ever he got the chance.  Their dog hid every time that young man left his room.  She was terrified of him. So you have to be the once to judge if your child is safe with pets.

+++++++++++++++++++++++++++++++++++++++++++++++++
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.
  +++++++++++++++++++++++++++++++++++++++++++++++

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

Love

10.)These kids 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.

 When my son was a baby, he was happiest in his swing or in his crib.  Most kids fall asleep in the car, it wound him up. Going to the park usually ended in some altercation with another child. Playgroup was a nightmare.  Most of the time he wanted to be alone.  It was Mommy's idea to go to the park,  join a playgroup, or invite people over.  Eventually, I stopped taking him places unless we had to go. By the time he was 4, not many people even wanted him to come over.  I was isolated, lonely, and pre diagnosis clueless.  He did have a few kids he wanted to be around.  One on one, not in loud groups.  The beach (my favorite) was an assault on his senses: hot sand, cold lake water, suntan lotion, and if it was windy he covered his ears or eyes.  What he really liked was being inside the house playing with our canister vacuum and it's attachments.

One summer the city decided to put in all new water and sewer pipes. Huge backhoes, bulldozers, payloaders showed up one Monday at 8am in front of our corner house.  The crew were all Italians.  At 10am one of them would go to a local bakery or donut shop and bring back a box. They all sat on the grassy parkway under a tree drinking coffee from their thermos' and eating.  Many spoke Italian.  My son was over the moon about the earth moving equipment in his front yard.  By the end of the week he had taken his little lawn chair and parked it in the shade.  He was happy to sit and watch them.  He knew after the first day to stay back.  They worked, he watched...perfeto!  The 3rd week he was eating his lunch outside in his chair when they broke for lunch. Now they were watching him.  He still was not talking, and the workmen tried to talk to him.  I told them his name, and they all told him their names.  Silence, but smiles of delight.

By the 4th week the crew realized this kid wasn't going anywhere.  I knew that
I would be spending the summer with an Italian construction crew.  "Vito" drove the backhoe.  That was my son's favorite.  When the crew left at night, we would let him sit in the seats of the equipment. He was in heaven.  By the 6th week he was having donuts with them. I felt this was good, as he was limited in foods he would eat.  His birthday is in July.  I bought the pastries on his birthday for "their" coffee break.  At the end of the day Vito asked if he could take my son up in the cab and let him drive the backhoe.  Talk about thrilled.  I think he was still smiling when he went to bed.  Vito made quite an impression.  While other mothers were having picnics at the lakefront, I was having donuts with Italian construction workers. But my son was happy, and that made me happy.

Those days seemed far away by the time public school 3rd grade arrived.  I was called every day to come in and talk to some staff member.  I do not exaggerate.  He was in trouble constantly.  We kept a journal with the aide.  Kids taunted him, teachers yelled at him, he was in the principal's office so often that he started fixing the secretary's printer when it would seize up.  The first hour home after school he had to decompress.  I would engage him in a favorite activity, or have a snack once he was relaxed.  One afternoon he was sitting at the kitchen table after school. 
"Why am I a boy nobody can love?" he asked.  My heart went into my throat, and I could feel the tears start to come.  I couldn't think of an answer.  So I asked: "Is that how you feel, unlovable?"   He nodded his head, and slumped his shoulders.  This is one of those crystal clear memories we have few of.
All I could do was try to hug him with his stiff bristly posture. He didn't pull away.  I knew at that instant that I had to change that perception, and feeling.  I think I cried for days afterward every time I thought of him feeling unlovable.  It still breaks my heart.  From that moment on I knew I had to love him when he acted the most unlovable.  His behaviors during our divorce were pretty scary sometimes.
Outbursts came often, and he's a big kid.  Somehow, I always forgave him.  Sometimes, I had to go in the other room, as I thought I would lose my mind.  Sometimes I needed a time out.  He taught me to love in a way I had never known love. He was affectionate to me, his big sister, and his Dad. He hugged and kissed us all the time.  And only us.

By the time Middle School arrived,  I was all he had left.  Big Sis was a mom herself living in another state.  Dad had lost all visitation.  We had moved from the farm back to the city.  I walked him from my car in the lot to the front door of his school on a Fall morning.  We said our good byes, and he turned and kissed me on the mouth in front of the entire school and said: "Love ya Mum."  I looked around and the kids were indeed watching.  Now for the first time I realized that he was too big to hold my hand walking into school.  And it really wasn't age appropriate to kiss Mum goodbye in front of school.  This is another crystal clear memory.   We had a little talk, and I think a few kids made fun of him.  As Fall turned to Winter he would say: "Love you Mum." and walk away from my car.  No hugs or kisses.

When I see my son and his fiance being affectionate, it makes me melt.   I hear him tell her he loves her at the end of every phone conversation.  Most of the time when we are ending a phone conversation he tells me he loves me, as he does my husband.  I know he knows we love him. Wherever the school psychologist is that told me he would never show love and affection, nor receive it: I have one thing to say.  I love you for being wrong.


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

A Round Peg In A Square Hole

"The Golden Brain"  

I continue with my list for those dealing with Autism.
9.) Find a program that matches the child vs. trying to make the child match the program.


There are many programs today for kids with Autism. With 1 in 89 boys, or 1 in 150 kids education has been trying to catch up.  When my son was young, there was nothing in our state. We had a choice of full "inclusion," or a "warehouse" program that I think was called "Multi Categorical."   "Inclusion" was just the opposite of what the word means.  Regular Ed teachers really did not want special needs kids in their classes.  In their defense, if they wanted to teach Special Ed they would be Special Ed teachers.  The warehouse programs held the kids all day, and taught nothing.  Puzzles, water play, shape sorting were about the only activity.  Neither of these classes were appropriate for my son.  We chose inclusion with a 1:1 aide.


In first grade my son went through several aides.  I was so thrilled we had won the battle to get an aide written into his IEP (individualized educational program-mandated paperwork).  When I asked Dr Lavigne if there were "trained" aides.  She actually laughed.  :-(   Truth be told, most of them worked at Walmart as their last job.  Which doesn't provide training in autism.  Occasionally there is a person who is a retired teacher, or getting their degree in education and those were the best.   In my son's elementary school (which shall not be named) they felt the best aide would be one who could sit on him when he was having a tantrum.  And she did.  


Eventually I got wise and realized inclusion was not for him at the moment.  They hired a 1:1 teacher and he went to her house, or she came to ours.  And so went 4-6th grades.  The stress in all our lives decreased once he was out of the public grade school.  His program was designed by me for socialization, and then the 1:1 teachers for his academics. Rock climbing, working on a tv repair shop, running bingo at a nursing home were some of the activities he did every week for 4th grade.  Each one of these teachers were incredible human beings in their own right.  They taught him things I could never even have thought of academically and socially.  I refer to them as his Angels.  I am so grateful for their spirits and hearts. 


Sadly, he had not learned to read higher than the 1st grade level by the time Jr. High/Middle School arrived.  I knew this district would never teach him to read. We moved to a district with a magnet school.  He learned a lot at that school.  He had a 1:1 aide to scribe and dictate.  However, they were not addressing the reading or writing issue.  I began to search for a private school that taught dyslexic kids.   I found 3 in the USA that used Orton Gillingham, or Wilson methods with normal to above normal intelligence kids.  I chose the one in Albuquerque because it was the most affordable living, and I had been to New Mexico many times with him.


So I packed everything I HAD to take, sold lots of stuff, and left everyone I knew and loved in Chicago to head West.  DLD Sycamore School  was a gamble.  But if he didn't learn to read and write, he'd be left standing on the curb.  I spent my last $$ on private tuition for 18 months.  The gamble paid off.  Those women worked with him, and he was not a willing student.  He didn't really want to read or write.  But he did, and they did.  I owe them a huge debt for all their diligence.  Today he reads and writes well enough to run an vacuum shop.  He texts constantly!  Imagine. I don't know if he will ever be a book guy.  But he certainly reads web pages, magazines, and types quite well.
http://www.dldsycamoreschool.com/

High school was in Santa Fe.  That is another blog in itself.  Not everyone would cross the country alone as I did.  When I look back at it, I am amazed I did it.  Of course that was almost 10 years ago.  The time has flown by.  I am married to a man now who has become a father to my son. Something even his own biological father could not be. I get all "verclempt" when I think of how much my son loves Bob, and Bob him.  Our lives today are something I could not foresee when I left Illinois.  All because I was looking for a round hole for a round peg kid.


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

What's So Special About Special Ed?

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. :-)

I can't believe April is almost over.  I am only half way through my "list"...so like real life with Autism: it will continue into the next month.  :-)   Not all Special Ed classrooms are created equal.  I am a believer in matching the child to the classroom.  That is the whole point in #7.   Visit the rooms that are available in your district.  If they want to "include" your child please visit the regular Ed teacher's classroom.  Almost no one is going to offer you to visit their classroom.  It will be up to you to ask, and follow through.  I hadn't been in an Elementary classroom  in years.  As my son's sister is 10 years older than he is.   Two stories come to mind.

When my son was in 2nd grade (for the record, his worst year of school EVER) we had met several people with Autism.  His Auntie Jane came to school with me to pick him up one Friday.  Jane is at the very high end of the Autism Spectrum.  She IS a Special Ed teacher, and was really never in SE herself.  We came into the school office to check in as required in case kidnappers were to arrive at school and take him.  Our Pediatrician  once flippantly said: "at least you won't have to worry about this kid being abducted."  I felt instantly better after he told me that. Not.  I digress.

I introduced Jane to the Secretary, Principal, and Nurse.   They all stood like stiffs looking her up and down.  My son had told them about his "Auntie Jane."  She was wearing her light blue jumpsuit from Space Camp, had hair that looked like it had been combed with an eggbeater, and large pieces of cotton stuck in her ears (she hated the feeling of wind in her ears).   I broke the silence by verbally introducing them.   Talk about uncomfortable.  After signing in, we were outta there.  Really, they looked at her like she was a leper.  My parting remark was "see they still have it when they grow up!"  As usual, I have a way with words...

5 years later I would get a call from a teacher saying my son wanted to make a t-shirt with iron on transfers from the computer.  I figured he had wanted to have a gun, or a bomb, or something that is no longer seen or allowed in schools. Can you believe that my husband used to take the NYC train to high school and carry his rifle on the train to the machine shop?   Back to the story.  Apparently my son wanted to make a shirt with "What's so special about Special Ed?" printed on it.  Nope, we weren't having any of that.  I thought it was funny, as did he.  He'd been in an out of all sorts of schools and  classrooms when the "t-shirt incident" occurred.  He was speaking from experience.  Jr. High kids were mocking him hourly just for being in the "retard" class.  I could see both sides of the story.  

Thanks for reading.

Each day is a gift. Open now.

xo,

Suz

Perseveration, You Can Say That Again !! And Again.

copyright 1994 s.weese

perseverate |pərˈsevəˌrāt|verb [ intrans. ] Psychologyrepeat or prolong an action, thought, or utterance after the stimulus that prompted it has ceased.DERIVATIVESperseveration |pərˌsevəˈrā sh ən| |pərˈsɛvəˈreɪʃən| nounORIGIN early 20th cent.: from Latin perseverat- ‘strictly abided by,’from the verb perseverare (see persevere ).
-----------------------------------------
I know that reaching my son through his subjects of interest was the key to reaching him.  Thank goodness for me he had many perserverations.  Trains, Construction Trucks, Fire Trucks, Leggos, Playmobile, Infinity, Vacuums, Chickens, Crime Scene Tape, Submarines, Inventors, Space, Rock Climbing, Bicycles, Banjo and Bluegrass Picking, Aliens, Computers, Painting, LED lights, Clay, Sprinklers, Dirigibles,  Magic, and now Cars...ones that go fast.At a young age there was nothing that made him happier than playing with our Electrolux canister vacuum. He'd take on and off the attachments on the living room floor.  When I tried to put the vacuum away, he'd have a tantrum at 2.  The people who came to my house  thought I vacuumed all the time. :-)  When he got his first red shiny fire truck.  He slept with it for a week. I'd go to get him from his crib and he'd have ladder prints on his cheek from sleeping ON the truck.  When he learned to talk, there was one subject he brought up instantly when he came to someone's home.  "Do you mind if I look at your vacuum?"  He knew everyone's vacuum.  Usually calling the owner by the name of their vacuum instead of their name.  When his Godfather bought a house with an in house wall vacuum, I thought he would burst with joy.  And some of you know today he works in a vacuum shop. Back to perseverations.  At school they tried to interest him in their subjects.  But few held his attention.There was no way of getting him off course when he was heading down the tracks of a perseveration.  The good teachers used his "obsession du jour" to teach him science, english, history.  The  less than good ones, just wrung their hands and shook their heads in frustration.  In first grade (the year he was  diagnosed) he was not getting numbers.  Having characters, be they letters or numbers  meant nothing to my very visual learner.  Special Ed even tried plastic cubes.  At 7 he was a handful.  His eyes would glaze over, and I knew he wasn't even present, let alone getting what adding 2 orange blocks and 2 blue blocks meant.At that age he was sooooooo obsessed with his chickens.  Sometimes he'd crow or cluck when someone spoke to him.  Kids in his class thought he was really weird. One day it dawned on me as I was laminating something for his classroom Aide. I will photocopy a bunch of different chicken breeds he likes, and laminate them.  We'll do "chicken math."  And we did.  Adding 3 buff Cochins to 3 Barred Rocks...that was something he could get his head around.  I can't remember the transition from Chicken Math to regular math.  It wasn't long before he was doing regular math.   I learned something too.  Stop trying to force this octagonal peg into a round hole.  Look for the octagonal hole.  Ahhhhhhhhh.

He held the keys.

Many years later, part of his high school work program was to work in a vacuum store.  The man who owned that store was an angel.  Mr. Duffy.  He is an angel, as he's passed to another life.  But I hear my son quote him often when a vacuum "situation" arises.  I will never forget driving him to work and watching him put his key in the front door of the store one Saturday morning.  It was like a truck ran me over seeing him open a shop and knowing he'd been responsible and trustworthy enough to be given a shop key.  I sat in my truck watching him through the window turn on lights, put the open sign in the window, and arranging vacuums.  I cried, and I'm crying now typing this. That moment, I knew it had all been worth it.  He was going to be a productive member of our society. The sword of Damocles called "residential placement" was lifted from above my head.Today he works at a different store, and is quite the employee.  I am boasting, but I can't help myself. He not only has the key, but beat all sales records, and they send him to Las Vegas every year to the Vacuum and Sewing Machine Dealer Convention.  Yes, they send him.  All expenses paid. At 23, most "normal" kids haven't been on a "paid by the company" trip.  I know why he's broken all sales records.  He has a particle meter he brings out when demonstrating the different vacuums. When he looks up, he has watery eyes (something he's had since childhood when he feels emotional).   He shows the customer how much dust is or isn't being blown back into the air.  He's pretty passionate about it. Who could say no to that?There is a world vacuum collector meeting every year. One year I am going to send him to it.  He collects vacuums, that's for sure.  We have many in our attic. He has some of his favorites hanging on bike hooks in his apartment. He loves vintage vacuums.  Buying them at Goodwill, or thrift shops and fixing them up to resell (sometimes keep) is a "hobby."  When someone has a really old vacuum and he is able to fix it, he gets tears in his eyes.  He loved the kids video "The Brave Little Toaster."  If you have a young child on the Autsim spectrum...I highly recommend it. He's taken many a dust sucker or rug shampooer and put his own "after market" features on it. It sounds like everyday is wonderful.  Mostly they are.  His love of  cars, has caused him many a heart ache. He can't leave any car he has alone.  When one tinkers with vacuums, they don't have to drive them to work.  But cars are a different matter.  He just got a new car (used) and he's promised his fiance it will be his transportation, and he won't soup it up.  She had to drive him to work for 6 weeks when his last car's transmission died.  When he was young I had to hide every screwdriver. If he had one, he would unscrew light switch plates, the phone, appliances, anything to turn that screw.  I was constantly turning on lights and having the switch plate crash on the floor.  He found out dimes work as well as most flat head screw drivers, and I seriously considered doing away with dimes all together. Today his new car works, and really, that is his responsibility.  It would be much easier to just keep buying him new cars. But what will he learn from that?  He'd learn that he can do whatever he would like to his car, and Mommy will buy him a new one.  Not my idea of good parenting. He was single handedly supporting the red light camera program in our town.  But he learned.  Driving has been my biggest worry.  Little impulse control, perseverating on something else while driving, and being a 23 year old male are not what makes my heart sing.  If I think about it much, I can really work myself into a lather.  There ARE other people's lives at stake here. If I've told him to "drive safe" once, I've said it a million times.  It's my way of asserting some facade of control...as I really have none.  Thanks for reading.Each Day is a Gift. Open now.xo,SuzPlease forgive the crazy breaks in lines. I can't get it to be fixed. :-(

Sensory Smarts

"Finding the Key."

Managing sensory issues is my 3rd golden rule. My friend Lindsey Biel in NYC wrote a book and has a website "Sensory Smarts": http://sensorysmarts.com/    If you are in NYC, that is where her practice is.  This book really lays it all out.  I met Lindsey through another venue, and of course we clicked the moment we said the "A" word. She just gets it.  I didn't know her until my son was grown.  How I could have used her input.

Learning what my son's sensory issues were was another key to helping him navigate through life.  From the time he was a baby, I look back and see the places he would tantrum with what seemed like no provocation.  He hated crowded loud restaurants, mall jewelry stores, riding top down in my convertible, and as a baby only ate 2-3 foods.   When he was an infant and started to fuss, the best way to soothe him was to put him in his crib.  As an infant I had no idea he had Autism. I just thought he was unusual. :-)

"Sensory integration" and processing disorders usually accompany Autism.  Someone once gave me a great visualization for what was going on in my child's brain.  If each of his senses was a car driving down it's own road into a bottleneck where the 5 roads turn into one road for all 5 cars to go through.  His senses were in a traffic jam most of the time.  I know how frustrated I get in traffic jams.  I can't imagine being in this state all the time.  No wonder he was miserable so often.

At school the flourescent lights and noisy hallways drove him nuts. Lunchrooms, and gymnasiums, and playgrounds were all overwhelming. The noise of a pencil on that splintery 1st grade paper made writing a miserable task.  He preferred the quiet of a rollerball.   He could hear the silent alarms in mall jewelry stores. We'd push him in the stroller into a jewelry store, or stop in front and he'd start shrieking.  I just thought he hated jewelry. He was a large baby.  I bought most of his clothes at a lovely local 2nd hand shop.  By the time he was 2, he wore a size 4.  All those clothes had been washed and were soft.  When I dressed him in new clothes, he'd take them off.   Now they print the labels on t-shirts.  I used to have to cut them all off and make sure there was no stub poking him.  People touching him randomly in public really set him off.  He has red hair, and little old ladies would comment and touch his head.  He would be sitting in the grocery cart seat and growl.  Oh, grocery stores.  Florescent lights, lots of noise, lots of people, it was exhausting.

Food.  Some kids with Autism eat everything and anything including their own poop.  Some are so picky that they eat little or nothing.  My son was of the second variety.   As a baby he wanted oatmeal and applesauce.  The pediatrician said he'd outgrow it.  Ha!  He couldn't stand anything with a lump, bump, that needed chewing.  I would put the spoon in his mouth, and out the new food would go. I pictured him going to college with a box of oatmeal and a jar of applesauce.  He liked orange juice if it had no pulp.  I had to "strain the orange juice."  His biological Father even tried shoving food into his mouth, making him stay at the table until he finished whatever we were eating. Of course none of this helped at all.  I was learning to pick my battles with my son.  Food was not one I was going to fight.

Eventually, by about 4 he ate 6 foods: pasta with butter and cheese, cheese pizza, cereal, orange juice, vanilla yogurt, and goldfish.  I was thrilled he liked crunchy goldfish.  When I asked our pediatrician what to do at 4.  She said to only offer him what we were eating.  "When he's hungry enough, he'll eat." So for 3 days, he ate nothing but water.  He ended up in the emergency room dehydrated...twice.  I was done with that fight.  6 foods it was.  He went to a camp for children with Autism.  When I contacted the camp I asked about his limited diet.  They said they could handle it.  The first week he was there they called me because he was in the ER there with dehydration.  I think he'd learned to eat white bread with smooth peanut butter while he was there.  So that's what he ate most of the time.

I know many people with autism who are adults.  One man told me he ate canned peas and yogurt every day for 6 years.  Another man told me he ate white bread without the crusts and apple juice for 10.  Both these men are now adults, and eating pretty normally.  Of course food touching other food on a plate is still a no no for them and my son.  He eats many more than 6 foods now.  He's learning to cook and barbeque.  He's still very picky about brands, restaurants, and types of food.  I am happy to say that not fighting that battle was wise.  He just looks like a "foodie."

A quick true story about food.  When he was about 8 he had learned that one could dial 911 and get a police car to arrive.  I didn't know that he had dialed 911 and told them "my mother is torturing me."  The police arrived at our farm in 2 cars, to my surprise.  They told me he had called.  He was overstimulated with all the commotion.  So he was not talking immediately.  The police took him in one room and started questioning him, me in another.  Finally he told them that I was lying to him, and trying to trick him.  They were trying to get details.  After 15 minutes of nothing he said: "she doesn't strain the orange juice, and tries to trick me into drinking it."  That was his beef.  The cops looked at each other, him, me and shrugged their shoulders.  As they left one cop told me: "you've got your hands full Maam."  Oh, really?  I didn't know. :-)

There are so many sensory issues in young kids with Autism.  I can't possibly go into all of them.  That's why my Sensory Smarts is here!   When we moved from the city to our farm my son was 5.  He spoke, but it was garbled.  I had no idea that the quiet of the country was just what he needed.  Every evening in the last hour of daylight, he and I would explore the property.  I love that time of day when the light is golden.  He did too.  During our exploring time, he began to say words and eventually sentences quite clearly.  It was like magic.  He had not been diagnosed yet.  Later, I would find out it was just what his senses needed.

"The Diagnosis"

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

Tornado Boy Behind The Wheel

"Tornado Boy" copyright 1994 s.weese

As promised I will continue with my golden rules.  From my original blog earlier this month:
http://theknifewife.blogspot.com/2011/04/autism-awareness-month.html

2. Families are the bottom line. So don't expect the school district to fix it.
Yesterday our son came over to show us his latest ride.  At 23 he's had at least 6 cars since he started driving at 18.
He wasn't ready at 16 to drive. His hand/eye coordination was not quite there.  I would take him out in my jeep to practice.  I have to say, of all the trials and ordeals we had been through, this was my most difficult.  He got behind the wheel careening for other cars, signs, trees, you name it.  I felt as if I had just completed an intense aerobics class. My heart rate had been way up, my muscles tensed, and my legs exhausted from pushing my imaginary brake petals on the floor.  This took about 9 months. Until I felt he was ready for driving school.


 When we signed him up at the local driving school I admit great relief.  He took the road part of the class twice.
When he got his license at 18 in Santa Fe, I don't think he had to take the road test.  They just give you a license if you can pass the written part.  He had saved money for a truck.  And what a truck it was.  An '83 Dodge: the manly man's truck.  We could hear him coming 3 blocks away.  I was so proud that this kid had earned his own money through his job at the vacuum store, and as a school district IT installer.  I didn't care that it was loud, rusty, and got 4 miles to the gallon.  Every time he left in it, my heart went into my throat with fear. But pride pulled it out again.  And my son, being my son took it apart and put it back together MANY times. 


http://www.etsy.com/treasury/4da1c41491928eefd1db237f/perseverations-of-the-heart-autism 


So back to #2.  The school district can only do so much.  Now there are programs for Autism.  When my son was in school only non verbal, low IQ Autistic kids had a home.  They were in what I call a "warehouse program." These programs just keep kids for the 6 hours a day required.  Few gave any stimulation, and were a mix of Special Ed categories.  Our district offered:  "Inclusion" or residential placement.  Not great options.   So I chose inclusion and forced our school district to give my son a 1:1 aide.  She was the first in our district.  The aide was not trained, and I was called almost daily about one incident or another.  At this point I realized that the school was only going to give him part of what he needed.  It was up to me to provide the rest.  His biological father was in total denial and we got divorced.  He eventually lost all visitation rights, and that started a marked improvement in my son's behavior.  But that's another story.


The physical therapist at school had offered to teach him how to ride a bike.  We bought him a bike with training wheels.  He learned to ride that.  The PT got off the bus there.  On my son's 8th birthday his biological father insisted that he could learn to ride the bike without training wheels. Off they came, and what I believe as abuse started. He pleaded, yelled, threatened. Then physically grabbed him by the back of the neck with one hand on the bicycle seat and pushed him down the driveway. He let go, my son fell, and ran into the house crying.  This happened a few more times.  Then I called a halt to the whole thing.  I couldn't bear to watch this anymore.   I suggested a 3 wheeled bike so that my son could ride independently with us on bike trips.  "Three wheeled bikes are for retards and old people,"  my ex said.   I felt being able to join others riding bikes was more important than the number of wheels it had.  Soon after this I filed for a divorce, with an order of protection.  


The day after my former husband was "extracted" from our house there was a used 3 wheeled bike for sale in the paper.  It was owned by an IBM maintenance engineer to ride with his tools from building to building.  It had a huge metal tool box on the back.  The tires were solid, and that was perfect for our farm gravel, long driveway.  When my son saw it he was beside himself with joy.  He loved "packing a bag."  So he filled it with all his computer parts, tools, tape, and oddities he loved so.  He rode that bike for years up and down the driveway.  Steering, stopping, and judging distance were the first steps for him to learn riding a bike.   Later when he was a bit more coordinated I bought him a green (favorite color) road bike that was a size smaller than the bike shop said he needed.  He could easily put his feet down if he lost his balance.  And within 48 hours he was riding that bike everywhere (new problems arose with that milestone!). He rode his bike to school for 3 years.   My point in telling  you this story is that I taught him, not the school district to ride his bike.  Next, it would be a car!


http://www.etsy.com/treasury/4da07665d9576d9139c991c7/tornado-boy-autism-awareness-month?ref=pr_treasury



I knew that he needed socialization, and that was my priority.  Grades 1-3 were a disaster with inclusion in a regular Ed class.  By 4th grade they sent a 1:1 teacher to our home and I designed the program.  We taught to his perseverations (obsessions).   He worked in a TV repair shop, a nursing home running the Bingo games,  went to the rock climbing gym,  and various other off site places he could socialize.  "Chicken Math" was implemented.  After school I had him horseback riding, art therapy class, and various other activities matching his perseverations.  By about 7th grade he was ready to enter the classroom again, with an aide.  We switched school districts and he went to a Magnet school my daughter had attended for 8 years.  His first aide there was this hot babe who was a young Israeli woman. On their first day together she brought a picture of herself with an Uzi strapped to her back when she was in the Army.  The message: don't give me any shit kid, I can take you down.  He got it, and treated her with total respect.  The other 7th and 8th grade boys thought he was the luckiest kid in school to have this beautiful woman with him all day.  


I continued to battle with the district about behavior modification.  They just didn't get it.  And trying to have everyone who came in contact with my son be consistent is an unrealistic expectation.  When they gave him a time out for bad behavior...they were actually giving him exactly what he wanted.  He wanted to be alone, in a quiet place and do something he liked.  He figured out very quickly how to get to that time out place in a busy grade school.  In 2nd grade at the end of the school year he started acting out at about 11am each day.  The teachers, and psychologists, and aide all had these theories as to why.  My son does not like to be hot.  The principal's office and waiting room were the only air conditioned rooms.  One day he told me that "Mr. Cunningham's office is the only "woom" with air conditioning in my whole school."  The light bulb went on.   I called the Principal and told him my idea.  The next day like clockwork, as soon as the building heated up, bam, outburst, off to the Principal. This time the Principal asked my son: "do you know why you are here?"  My son said: "Yes, cause you get all the perks, and have an air conditioner."   The staff began to give my son lots more respect, than they had before! 
In their minds he had been some psychotic kid, and now he was just hot.  :-)

If you wonder why I do not have a photo of my son, or mention his real name-there is a reason.  He does not want his picture anywhere on the internet, and he wants his privacy.  He also doesn't want his biological father finding him or me.  These excerpts are from "Tornado Boy" a book written and based on my daily sketchbook when he was growing up.  I hope one day he will give me permission to publish it.  In the mean time, I respect his wishes and he remains anonymous.  The  drawing above : "Which road to take" is from this book.  (Copyrighted, and may not be used without my permission.)


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

3 Generations In The Shop: A Handmade Family

I had planned to write about Milan today.  Sometimes life has other ideas.
Today my/our son  "A" came to work for Bob in the shop.  "A" told me he doesn't want me to talk or write about him.  Sorry "A", I can't help myself.   So "A" I won't use your real name, as I don't my own.  "A" and I still share a common bond of fleeing from a madman.  I don't want to compromise our safety.  We worked too hard to get here.

Bob is getting ready for the East Coast Custom Knife show the 3rd week in February.  So "A" worked on his day off to give Bob as much help as possible.  He also was going to take Mom for a ride in his new car.  We all worked in the shop, elbow to elbow, rear to rear.  We enjoyed our time together working with our hands in the shop.   Today "A" put his scraps of carbon fiber on my bench.  We all listened to last night's "Coast to Coast" that Bob "down cast" from the internet onto his iPhone.  At one point we all were standing at our individual machines when the interviewee said "Chicago has no problem with dead people."  We burst out laughing, and said at the same time: "vote early, and often" dead or alive.

Buddy keeps an eye on all of us.  He really
hates the noise of the shop.  But the dog's love for us keeps him there.  I am constantly brushing little steel curly ques out of his coat.  And checking paws for unwanted splinters.  Buddy is steadfast and true as a "good dog" should be.

At lunch time I asked "A" if he wanted anything special as I was going to the store.  He was at a breaking point in the action, and offered to drive me in his new car.   I got my list and bags and off we went.  He's a Subaru nut, and has another one.  This one is not a hatchback or wagon like before.  It's a sedan with power locks, sun roof, and a trunk.  Which he has a sub woofer in...and many more custom touches he so loves.  Besides much improved driving since the last time I was his passenger,  I was driving with a real young man.  When we got to the store, I asked if he'd like to split up and make it go faster.  He said: "no, I want to spend some time with you."  How sweet was that?   So we got all the items on the list together.  He's become quite the consumer, and showed me a few things.  It was a lovely outing.  Followed up by sandwiches he designed, that we all ate hardily. 

I have to interject something here.  When he was 5 the "professionals" in our school district told me he was "unteachable, untrainable, and should be placed in a residential setting for everyone's benefit."  My own family told me about the same.  It was a lonely place being the Mum (what "A" calls me) of the kid screaming in the store, school, church.  When he was in 3rd grade he asked me "why am I a boy nobody loves?"  But I knew if he could take apart the VCR at 5, that there was something there.  He used to call himself the "deengineer", because at 8 he could only take things apart.  He took apart many an item that he was not supposed to.  We would hide all the screwdrivers in the house from him.   A good friend at one point told me I had given up my life for his.  For  a  good many years that was true. I spent 12 years after his diagnosis trying to teach him everything socially I could think of.

I didn't do it because I am such a wonderful mother, or person.  It was selfish on my part.  I did what I had to do.  If "A" was to be independent some day, these lessons had to be taught.   He did the work.  And now he is independent.   This is where Bob comes into the story.   "A" was 14 when we met.  And a hormonal young teen.  Bob wasn't sure he could really love this woman, AND her kid.  Many others "A" and I had sent a running! ;o)   From the first day they met, Bob and "A" have had an understanding.   I am grateful he practiced on his two children first.  He was a seasoned parent, and has become a real father to a kid whose own father abandoned him.   Bob has loved "A" when he behaved horribly and needed it the most.   As parents we all know how hard that is to do.

Bob lays out trays of knives for the NY Show.


Last summer our 11 year old Grandson came from Denver and Bob had planned to help him make his first knife.  Lucas Burnley supplied a piece of steel for the event.  Bob planned step by step how he would teach him to make a fixed blade.  The night "E" arrived we gave him 2 Blade magazines, the bar of steel and a grease pencil...and sent him to bed. " Design a knife by morning" Bob told him.  It sounded a bit like a fairy tale where the hero must complete a task by sun up.  Bob had faith in "E." "E" had beaten us at enough adult card games for Bob to know the kid had the smarts to do so.  He emerged the next morning with a knife drawn on the steel and ready to go.  Below are a few pics of Bob and "E" making the first blade.  Heat treating was impressive.

The Final Piece

So 3 generations have worked in Bob's shop.  I see in "A" and in "E" a contentment when they are working with their hands.  Bob and I understand that all too well.   How fortunate they are to have someone to show them the way.  Neither Bob or I had that.   How great for Bob that he can impart his knowledge and years of experience with these two young men.  I believe that Bob and I have shown them that a person can make a living with their hands.

My Grandson also profiled a flock of my personalized birds in silver and copper.  I taught him how to use the grinding wheels to shape and smooth the edges.  I would look over and see him with his iPod in his ears, and grinding away.  He was a great employee during his visit.  He said "I could do this forever!"  Me too kiddo! :-) 

Thanks for reading.  I am still amazed that you do.

xo,
Suz
♥♥♥♥♥♥♥♥♥♥♥♥


I am adding a few notes since I wrote this.  I will post again about Autism on Monday the 8th.

First, thank you for your kind words.  They mean a lot.

Second: the report about vaccines and autism has been withdrawn.  I never felt that autism was caused by vaccines, or wheat, or any of the "causes du jour" parents of autistic kids are faced with.  I believe it is an evolutionary development in the human race.  Who are our technology whizzes?  Yep, the "A" community.  More Monday.

Three: Saturday night on HBO is the "Temple Grandin" movie.  I will be plunked in front of the TV to see how Hollywood handles autism.  It's been a long time since "Rainman." 

Thanks for reading!
xo
Suz