Autism- The Dreaded 6 Letter Word

Yesterday I did a talk for about 35 para educators about Autism and the effects it has had on my family and the role of the para educators and the schooling system in general.
My goal was to teach them that Autism did not just affect the affected child. It affects the whole family.
I also wanted to empower them and get them to educate themselves about the different disease processes that the children that they work with have which would make them more understanding and more comfortable being around the children.
I had a whole hour to talk and was not sure that I could come up with enough stuff to tell them to fill the hour.
I made them laugh and I made some of them cry.
I ended up taking an hour and fifteen minutes.
I touched on the difficulties that I had had and was still having with the school but, I didn't dwell on it.
I could see by the expressions on their faces that I had made some of them think about what I was talking about and that they weren't just a grunt.
The paras input and ideas were just as valid as the resource teacher who had initials behind their names.
I broke down the hours spent with the child and they acknowledged that they did spend a greater amount of time with the children than the teacher so possibly knew them better.
And I suggested that they start voicing their opinions to improve their child's care.
As a result, I was asked back to do the next class when it comes up in the fall.

I decided a couple of months back that the community needed education on Autism.
There were a few rumours floating around town about different things related to my family and I thought that people would feel more comfortable and be more understanding about the children's behaviours if they knew more about Autism and realized a lot of things the kids did like their screams and such weren't voluntary.
I approached the newspaper editor and asked her if she had ever thought of doing a story on Autism and explained my reasoning.
She was great but, decided that the story would have more impact if it focussed on the family.
So, I agreed to do the interview.
It went very nicely and I received a number of nice responses from people who I know.
Also, another nice thing that happened was that Nathan and I were walking one day last week from the bank to the post office and a man fell into step beside Nathan.
He was huge. He looked a bit like Santa Claus.
He started talking to Nathan. Asking him if he was enjoying his walk in the sun and kind of carrying on a one sided conversation that really didn't require answers from my son.
I sort of apologetically told the man that Nathan didn't speak and he smiled and said "That's alright, I do enough talking for the both of us"
And continued his conversation with my son until he reached his car.
I thought that was pretty special.

One of the best things that ever happened to me was that I couldn't get a job when I arrived back.
I had been supporting the family independently for 7 years.
The time off work I had had after having each child had gone from 6 weeks for Nathan, the eldest, down to 1 week for Sarah the baby.
I had missed all the baby things like them walking, talking etc.
I told my husband that he would have to get out there and find something.
Not leaving anything to chance, I found him a job working for an oil company.
He had never done manual labour before and quite frankly, I doubted his ability to stick with it.
But, fortunately, even though he whines about it daily, he has.
I got to be a stay at home mom.
It took a bit of retraining for the kids.
They got their meals at a scheduled time, their baths were scheduled.
Everything that I would normally have to do when I finished work, I was able to do during the day.
I scheduled a meeting with West River, the special ed people, and the school.
I told them what I wanted and to my surprise, I got it.
The kids were moved out of their closet.
An expert on Autism was to be brought in to consult and help them plan.
And they hired a teacher from Montana who had been in Special Ed for 20 years and had lots of experience with children with Autism.

At the end of 2004, I decided that the school had no more idea how to deal with Autistic children than Santa Claus and had heard about a program in Oklahoma.
My best friend who used to live next door to me here had moved down there in August so I found a job, and a house and one wintery day in early January, packed up the kids and husband and left.
Oklahoma is an interesting place.
The wind blows almost constantly and you can wear a t-shirt in January.
That part was nice.
I wasn't too keen on the hospital where I was working.
The doctors had a number of issues and most seemed inept or ignorant.
We had rented a mobile home a few miles out of town and our landlord was not keen on fixing the things that needed to be fixed so, let's just say, I lived in the house from hell.
We were on 10 acres and the boys loved being outside.
The only problem was that the paddock on one side had a fence that was down and we lived on a major highway.
One day when we were out there, John made a run for it and was half way across the paddock before we knew what was happening.
My husband ran after him and caught him just as John made it thru the hole and was standing on the side of the highway looking at a big semi passing him.
My heart just about stopped beating.
Nathan took this distraction to climb onto the roof of the stable and inspect the electrical wires.
How these boys ever lived this long I will never know.
Someone must be watching out for them.
The treatment in Oklahoma didn't pan out as the school was a live-in thing and I didn't want to put my son in there and it would have required more money than I could lay my hands on.
I was working in Kansas at a hospital there as well so, I was doing 5 12hr shifts a week.
I thought the change in climate would improve my husband's disposition but it didn't and so I decided that we should move back to ND.
We still had the house up here that I was paying on and I decided that I would take on the school and see what I could fix there.
June saw us taking the trek back.

Because of their Autism, my eldest son Nathan had a tendency to scream when he entered new or unfamiliar places.
It was just one of his ism's and he couldn't seem to help himself.
One day, I took him to the local dairy queen.
This is a small town in North Dakota of approx 1200 people.
The place maybe had about 10-15 customers in it.
Anyway, I took Nathan in to get him an icecream as a treat and he made a little yell of excitement.
The lady at the counter (and I use the word lady loosely) who was also the assistant manager said loudly "Oh, I thought that was a dog".
That wasn't enough for her.
She then called to another couple of ladies (once again used loosely) and asked them if my son had sounded like a dog.
I was absolutely floored.
In hindsight, I wish I had leapt across the counter and punched the troll out.
But, Nathan was looking forward to his icecream so I purchased it and we left not to return for the longest time.
My husband is friends with the owner and he was made aware of her behaviour as were many other of my friends.
Now when we go in there, the boys no longer yell and she does her best to kiss our asses.

Sleep, what sleep!
In some way I guess the Autism affected their sleep patterns and they didn't do much sleeping at night.
They kind of took turns at sleeping which made for very little sleep for us.
John, who has the ADHD in addition, would only sleep for 3-4 hours at a time. Somehow Nathan would wait until he woke up to start his sleep.
This went on for a couple of years and try as we might, we could not get John to have a full nights sleep.
During this time, one day when the family was watching a Disney movie together, John got up and left the bedroom. He was about 3 1/2 at the time.
My husband went to check to see where he was and came back yelling for me.
The kitchen was filling with smoke.
John had turned the stove on and knocked a box onto the element which had caught fire. He then had grabbed a shirt, I think to put the fire out but that had caught fire too.
The flames were licking up the cupboard and onto the ceiling.
I turned off the stove, grabbed John and rushed him to the bedroom with the other kids and then came back to the kitchen and got a wet towel.
I told Paul to grab the extinguisher from the garage, which he did and proceeded to use.
We finally got it out and were very lucky with the small amount of damage that we had as opposed to what could have happened.
We decided that we needed to place a sturdy gate between the lounge room and the kitchen area which could be closed when we needed to.
Also, at night time because the potential of one of the kids wandering out the door if they woke up and we had fallen asleep was growing.
We live next to a train track and it fascinates the boys.
One of my friends sells 4 Life products and she suggested the Riovida which contains Transfer Factor which I was coming across more and more in my research on Autism.
So, I ordered some and, no joke, within a week, John started sleeping from 10pm to approx 7am.
It is completely herbal, I wasn't prepared for the difference this made to us.
Without John to wake him at intervals, Nathan started sleeping better too.
Their moods improved a little as they weren't so tired.
Boy what a difference.
At last, we were able to get some sleep!

At about this time I had started doing research into Autism and Adhd and decided that a diet change might be in order.
So, I thought we could do the Casein and gluten free.
That took an awful lot of work and preparation.
I shopped and I cooked.
For three days my sons would eat nothing but take apple juice.
I decided that it wasn't working and stopped.
However, I did manage to put them on soy milk instead of regular milk.
I cut their sugar intake by about 80%.
And now we manage on limited casein and gluten.

I approached my next door neighbour who happened to be the special ed teacher at the elementary school and asked her how I could get help for my boys.
Their behaviours were getting extreme.
They wouldn't be bathed.
Changing and washing them was a battle that I had come to dread.
They would kick and bite and slap.
They did like water if it came from the hose outside and we bought a paddling pool and set it up for them.
I took to taking shampoo outside and putting it on their heads, rubbing it when they got close enough to me and letting the sprinkler wash it off.
You tend to become quite creative when you need to.
My neighbour put me in touch with West River who deals with setting up special ed programs.
They put us under the care of the speech therapist at the school.
She had had very limited exposure to Autistic children.
The boys would not sit in a chair and a weighted sandbag was used to hold them in place for a couple of minutes at a time.
Nathan, the oldest, would scream at regular intervals.
The principal said that he didn't even have to come down the hall to see if the boys were there, he would just listen.
They were assigned a para educator each.
They would go to the school for a couple of hours at a time.
Meetings were frequent.
Nothing much of what I said was taken into regard.
They decided that they would make a classroom out of a little changing room by the stage.
It had no windows, but, they informed me that no distractive influences were better for the children.
It was at this time that my sons became known as the boys in the cupboard that screamed.
I would finish work, drive home and attend meetings.
I was becoming frustrated that they ignored any suggestions that I had.
I was grateful that I was getting some help though so, and I thought that maybe they knew better than me how to help my boys.
Finally, I changed my job and moved to a closer location.
It was still 70 miles away, but, it meant that I could come home daily and keep a closer eye on what was going on.
My fourth child had been born.
Another girl.
Throughout all this, my husband had refused to acknowledge that the boys had Autism which made it difficult to obtain help.
He was reluctant to bring in outsiders to assist us.
I started researching even more as I knew there had to be a better way.
I called neurologists all over this country and in others who assured me there was no cure for Autism.
So, I decided to go holistic.

My second son was two and a half when I returned to ND.
I had to take a job in Bismarck which meant that I had to leave for half a week.
About a month into my new job, I noticed that he had picked up a new behaviour.
He would bang his head on the wall or floor when he became agitated.
My husband would come running and tell him to cut it out and give him something to pacify him.
After watching this happen a few times, I asked my husband why he did that.
He said that he didn't want him damaging his head.
As per usual on my days off, my husband took that as his time out and would go out for several hours at a time.
So, I decided that maybe John's behaviour wasn't a symptom of his Autism.
Maybe it was just a tool he used to get his own way.
I let him bang his head.
When I walked past him while he was doing this, he kind of looked at me as if he expected me to do or say something about it.
I just ignored him.
This caused him to bang his head even harder resulting in him finally bursting into tears.
I guess it hurt.
Once he had finished banging, I asked him what he wanted.
And he indicated to me the object of his desire.
Which I provided him with.
The next time he did it, I did the same thing.
It didn't take him too long to figure out that showing me what he wanted was more productive than banging and it hurt a lot less too.
The next time I went back to work, it started all over again.
When I came home, there he was banging his head.
It took me something like four to six weeks to educate my husband. He just didn't get it.
The only good thing that happened with the head banging behaviours was that my eldest son, who is mute, was heard to say, quite clearly one day "John, don't bang your head, stupid"

If it is one thing that my two boys didn't like it is change.
Their whole routine was thrown out of whack and they let us know in no uncertain terms that they didn't like it.
This was exacerbated by the fact that the mortgage company had not completed everything as promised and we had to live out of motel rooms for an additional 3 weeks while they got themselves together.
Two days before we were set to close, they finally did the house appraisal and although originally we had been told that everything would be fine, we were informed that the mortgage was going to be $6400. short of the price we had agreed to.
The stress was beginning to show on us and stretched to the limit as we were, I asked the seller to take back a note for the money telling him I would have it for him in 6 months.
Not knowing me from Adam, I was real happy when he said yes.
Then came the hard part.
I opted to return to Miami by myself where I knew I could get overtime and earn decent money.
My daughter was going to be 1 in Oct and I wanted to be back for that.
It was with a heavy heart that I booked my flight and it was made even worse by the fact that when my husband dropped me off at the airport, my son woke from a nap and started crying when he saw me leaving.
He apparently cried all the way from the airport the 100 and something miles home.
The final straw for me was when I got to security and they searched my bag and myself.
I had bought a new alarm clock and it was in my suitcase.
The young boy saw fit to spread my lingerie all over the counter so I told him to take my alarm clock apart to make sure there was nothing in it.
He told me that wouldn't be necessary.
I informed him loudly that if it was good enough to spread my personables out in open view then it was good enough for him to take the bloody alarm clock apart.
At which point he closed my case and waved me on.
When I saw him upstairs for the body search I was incensed!
The older lady who was with him must have seen the murder in my eyes and took over and it was done with a minimum of fuss.
I have nothing against airport security but, I do against men using it as an excuse to perv.
To cut a long story short, I worked at least 6 twelve hour night shifts a week for the next 13 weeks and had the money paid off.
It took me 3 days to make the drive back to ND.
I arrived exhausted but happy.
That was until I entered the house.
It was not the place I had left.
The boys had torn the wallpaper off the wall in the master bedroom.
They had started dethreading the curtains in the loungeroom.
And dethreaded approx 50% of the carpet in the basement.
My king size bed had been jumped on until the box base had been broken.
I was ticked.
A lot of the wallpaper was still on the floor in the bedroom, so, without further ado, having just driven something like 25oo miles in 3 days, I started cleaning.
My daughter who was going to turn 1 in a couple of days would have nothing to do with me and would cry when I came near her or tried to pick her up.
My eldest son wouldn't let me out of his sight.
And to top it all off, I had discovered when I arrived in Miami, that I was pregnant with our 4th child.

My son was approx 14 months old when he stopped talking.
Instead, he started screaming. Mindless yelling, seemingly unprovoked.
He stopped looking at me and instead, stared for what seemed like hours, at nothing.
The posturing began, he would hold his hands outstretched at his sides in unnatural positions.
I took him to the pediatrician and asked her to look at him. I mentioned the stopping of his speech and the posturing.
I had had his brother 2 months earlier and hoped that he was reacting to this.
She told me not to worry and that he would get over it and that her son hadn't talked until he was 7 years old.
The next month I took him back and queried his behaviours again.
At this time, he was starting to become distructive and didn't want to be held.
Again, she told me not to worry.
But, worry I did for although I did not want to admit it to myself or anyone else, I knew my son was Autistic.
I am a Registered Nurse and spent 3 years working with developmentally delayed children and adults and had seen all the signs before.
My son used to kiss and cuddle with me.
He used to tell me that he loved me.
He used to call me momma.
But, that was before.
I took him back time and time again and it wasn't until he was 2yrs and 2 months that she agreed to put in a referral to Miami Childrens Hospital.
I remember the day because I was in the hospital having my third child and my husband had to take him and his brother to their appts.
Yes, my second son had developed similar traits and he was being tested for Autism too.
The testing provided my boys with a pervasive developmental delay diagnosis.
They didn't want to use the word Autism with children so young.
But I did.
I wanted a title so that I could fight this thing that was starting to govern our lives.
We couldn't take the boys out as their behaviours were so bad.
Friends stopped coming over, making excuses for why they couldn't visit.
I had no family in Miami and now, very few friends.
It was starting to get very lonely.
I wanted so much to help my sons but, didn't know what to do.
The medical industry said there was no cure for Autism and not much you could really do until they became of an age where they would go into some kind of home.
The only home my children were going to be in was mine.
My husband stayed home with the children and I worked.
We decided after seeing the behaviour of the masses after 9/11 that we would move to small town America where we hoped that people were friendlier and would be kinder to the boys.
We found North Dakota on the internet and bought a house sight unseen in a small town.
The 6 day drive across country was horrific.
We would drive all day and at night, the boys wouldn't sleep so we were pleased to arrive.