Thursday, February 28, 2008

Getting Through The Autism

Today is Thursday and normally Nathan would go to his NAET treatments, but, the weather was kinda grotty when it was time to start out.
We had already dropped Sarah and Eric off at the daycare and had headed up to the coffee shop.
Every Thursday morning it is the same routine and that is very important to a child with Autism.
One Thursday we were running late and had to bypass the coffee shop to hurry to our appointment and the grim look of disbelief and dismay and the howl of anguish was enough to make me ensure that it didn't happen again.
The ladies at the coffee shop have known Nathan since shortly after we came up to ND.
They have watched him grow and seen his progression and aided in it.
Everytime that Nathan goes in there, he understands that he is to greet them, by name, and place his order.
They in turn, wait patiently for his stumbling speech and return his greeting and get him what he asks for.
They understand that he may not answer their questions right away and that it may take a few seconds for his mind to process what they have said and come up with the appropriate answer.
I am very grateful for that. Not so many people would be so kind.
There are also a couple of regulars who are sometimes in there drinking their coffee and they willingly move their chairs around so he has a place at the table for his milk and cookie and they also greet him by name and make him feel accepted.
As part of his Autistic nature, Nathan checks out the shelves and on the odd occasion has rearranged the different articles to make them more pleasing to his eye.
There are certain things that need to be placed together as far as he is concerned and he is allowed to do this to a certain degree.
I have noticed, that as time goes by and he frequents the place, this has become a lot less noticeable.
He used to have to do this every single time that he went in there and now, it may be once in a blue moon if they have new articles and it is not so much rearranging as just looking at the new things so he seems to be desensitizing himself of this Autistic trait.
Anytime that I would bring a new piece of furniture into the house, no matter where I would put it, he would have to move it around.
So, I got into the habit of bringing it inside, leaving it just inside the door and John and he would put it where Nathan wanted it to go.
This has it's good sides and it's downsides.
A little bit of a routine has made him more confident in his view of his world.
I think that is helping to break through the Autism and that by providing positive social contacts like this it will help draw him towards our world.
Later

Tuesday, February 26, 2008

Little Things

Well, to finish my last post.
John laid his head down to sleep at 530am.
At approximately 535am, Kathleen stumbled out of the bedroom and jumped on the boys bed waking up Nathan.
So that was the end of that.
I kept John home as there was no point sending him to school when he had been up most of the night.
It happens.

I was talking to my friends this morning at the coffee shop.
My one friend who spends a lot of time over at my house had come over yesterday morning to watch over the children while I went to bed.
She was extolling the virtues of John and saying how much improved he was socially and what a pleasure he was to look after.
She was so impressed with his behaviour and interaction that when she couldn't sleep this morning at 2am, she emailed me about it.
So, I guess she was impressed.
I myself have seen significant improvements in John over the last several months.
He is more social. His flapping continues but he tries to control it in public.
I took him to a birthday party for two of the boys in his class a couple of weeks ago.
He was phenomenal!
He played the games with the other children and when the noise got too much for him, he took himself off to a corner of the room and looked at something for a few minutes and when he felt more in control, he came back and joined the group.
We left 15 mins early because of the weather, otherwise he would have been there for two hours like the rest of the children.
I was so proud of him.
His reading has just taken off in leaps and bounds and he loves to read books. He will sit himself down in his favourite chair and surround himself with books and just sit and read for ages.
This weekend I was telling my friends, I just saw so many amazing things.
Nathan was sitting at the computer doing a Clifford program that the speech teacher had given us, knowing that John absolutely adores Clifford.
(John has already completed the program several times).
Nathan was doing his favourite portion where Clifford gets dunked when you click on a balloon that has the word that they ask for.
He was clicking on words such as next, light, farm, want, sister. Proving without a doubt that he could read or identify words which is as far as I am concerned pretty much the same thing as he had to choose from three or four balloons in the same cluster.
When he didn't know the word, he would click all the balloons but those times were few and far between.
His speech is clearer. It is so much easier to understand him when he chooses to speak or is prompted.
Kathleen surprised us this weekend.
On Saturday, Rachel and I were sitting down together doing some school homework and Katy came over, touched my arm and said "outside".
Well, knock me down with a feather.
It was even more impressive because Rachel turned to me and said "she said outside, yay, Katy can talk".
So of course, Katy went outside after receiving lots of hugs and kisses for her speech.
We were very happy. And last night, Rachel took Kathleen's hand when they were playing racing across the dining room and loungeroom and told everyone that Kathleen was on her team.
I am real proud of Rachel.
As my friend commented, she is a real big sister. She is concerned about every one of her brothers and sisters.
She mediates, she helps, she supervises them at times.
She helps mop up their tears and hugs them when they need it.
She is also one of their biggest fans and will cheer them exuberantly when she sees that they are doing great things.
She is a neat kid.
It is the little things that add up to momentous occasions.
A word here, a look there. It is all adding up.
They have all advanced so far so fast.
It is truly a magical journey and one heck of an adventure.
It has taught me a lot about tolerance and sometimes just sitting back and enjoying the moment.
Small things like examining leaves and not worrying about doing the dishes right away so you can cuddle with the kids and read them a book or turn the dining room table into a cave for a dragon or a castle for a princess by draping it with as many duvets as you can find in the house.
It all has it's moment in time.
Later.

Monday, February 25, 2008

Three O'Clock In The Morning

Sounds like a country song doesn't it.
John is currently singing the national anthem.
Luckily it is not loud.
While he is making himself a peanut butter and jelly sandwich.
He sat bolt upright at 1am and asked me if it was morning yet. When I replied no, he needed to go back to sleep it was still the middle of the night, he found himself unwilling or unable to go back to sleep.
After 3 stories and many back rubs, he is still up and judging by the occasional laugh coming from the loungeroom, it will be that way for a while.
Wouldn't be so bad but young Kathleen didn't go to sleep until 1230am and I was just enjoying the little bit of peace and tranquility when he did.
Then, resigned that I am not going to get to bed this night, I went to make my 6th cup of coffee only to discover that I have only enough left to make one more cup so I decided to leave that until closer to morning and go with the decaf.
Then, luckily I was in the loungeroom with him when he turned on cartoon network to see a man being impaled multiple times with flying scalpels, so, I changed the channel quickly and told him that it was over and put it on a documentary.
I set him up with books and apart from the fact that he is reading them out loud, I hope that he will remain content for a while.
I doubt that he will be going to school in the morning as by then he will probably be tired so there is no point sending him.
Hopefully if he nods off by morning, I will be able to let him sleep till 12 then put him to bed at 10 tomorrow night and we should pretty much be back on schedule by Wednesday.
Since I put the boys on the Melatonin, nights like this have been few and far between thank goodness.
When they were smaller, the boys used to take turns staying up. It was almost planned, infrequently was the times when they would both be asleep so we would have to take turns staying up too.
Got into the habit of making do with one or two hours here and there but these past two weeks between the kids being sick and such, it is starting to rear it's ugly head.
Pity, I was getting kinda used to my bed.
Oh well.
Later

Sunday, February 24, 2008

AIM Program

This I highly recommend when you learn that your child or you think that your child has Autism.
It is free for Autistic people. They will do a free screening for the frequency of Autism and then will give you free treatment.
There is nothing to join, they don't want your second born, nothing. And, it doesn't do your child any harm so apart from filling out a bit of paperwork, there is nothing much else to do.
The only thing that they do ask for and it only takes a couple of minutes every 3-4 mths is to write a brief summary on how your child is doing, the good and the bad, anything that you might have noticed that is different.
They will ask you to read a book called: Sanctuary, the path to consciousness by Stephen Lewis and Evan Slawson first.
This explains what the program is about, gives you a few case studies etc, and they will invite you to listen to a call where they will answer questions and will have guest speakers on, patients or the parents of patients to talk about how the experience was/is for them.
Well here is the interesting part.
When I applied for the scholarship, I was told to send in pictures for all of the children and they would test them all.
So I did.
They told me that Nathan, Kathleen and Sarah tested positive for the frequency of Autism and had been granted scholarships and placed on the machine.
I was more than a little surprised and asked them to recheck.
They already had because they knew the history of the children but did it again and got the same answer.
Wow.
I asked how could this be.
The facilitator told me that it may have meant that Sarah would have had problems when she was older.
Thinking about it, the symptoms of Alzheimers and Autism are not that dissimilar so maybe, Autism is the child's equivalent of Alzheimers.
Which makes me wonder if some of the meds they are using on the elderly would work on children in smaller doses.
When I have more time, I will look into that.
The facilitator I went through is named Kate Gustke.
Kate GustkeIndependent
EMC2 Facilitator209-768-2235
888-835-5585 toll free
www.emc2kate.info

I think that it is well worth a try, It is not going to cost you anything but a few moments of your time and it may help.
By the way, they do this world wide so it doesn't matter which country you are in.
Later

Saturday, February 23, 2008

All Kinds Of Stuff

Well first off.
To report on the coffee trial.
It didn't work for us. I had given him two cups. One in the am and one at 4pm. He din't want to go to sleep that night. Not that he was jumping or flappy or anything. He just lay in his bed and talked. Fairly relevant stuff for him or he read a book out loud.
He finally went to sleep an hour and a half after his usual sleep time so I don't think I will be doing that again as I feel it is important that he gets his sleep.
Sarah and Eric are feeling better. They still have an occasional cough but not to the degree that it was.
I really appreciated the comment from Rosalyn. I have known her since I was about wow, I think 6 or 7.
That is a long time to keep a friend and although we haven't seen each other for years, we keep in contact.
Kathleen has started a new habit, she insists on pulling down the curtains in the bedroom at night then coming out to get me to put her to sleep.
She waits until everyone else has gone to sleep then initiates this little pattern.
I have to get under the covers with her and she covers up our heads, good thing I am not claustrophobic.
She has a little chat to me in her own language and I tell her several times that I love her and how wonderful she is and go over all the highlights of her day, all the great accomplishments she has done and I repeat all the words that she has said that day that I know of and tell her how proud of her I am that she is trying to talk then she arranges my arms and legs in the position that she wants me, sometimes I can rub her back, sometimes I can stroke her hair, then she smiles at me and rolls over and peacefully goes off to sleep.
This little ritual can take up to or over an hour depending on how tired she is but, that is okay, it is her time.
Every day, I try to make a little time that is solely for one child.
I think it is important for each of them to know they are loved for themselves and even when things are hectic, it helps them know that even if I can't look at a picture or read a book at that time, when I say that I will come and find them when I have finished doing what I am doing that I do.
This way when they see that I am busy, they know they are still important to me and they accept the fact that they may have to wait a little bit.
It has helped a lot with the "NOW" attitude attached to Nathan,Kathleen and John's condition.
So often they have wanted the instant gratification and would throw the biggest tantrum you could imagine if they couldn't have what they wanted straight away.
Now even John who was the biggest offender is content to wait a bit although he may come back and remind me every once in a while, I don't have him hitting his head or throwing things anymore which is a great relief and John trusts that if I can't help him right away, that I will.
I think it also helps to make them a little more self reliant, apart from Eric, there is not one of my children who is unable to get themselves a drink or something to eat independently in the event they needed to.
The boys are able to use the toaster but they are all aware that they are not to touch the stove.
And apart from one incident when I think the stove was accidently turned on by John and a fire was started in the kitchen, there have been no other incidents.
That was when he was only 4-5 and it looked like he had turned on the element trying to get into a cupboard above the stove then he knocked a box onto the element and it caught fire.
Luckily we missed him after a couple of minutes and went looking for him to discover this and we had a fire extinguisher in the home so it was quickly put out.
Really recommend having an extinguisher, no matter what the mental state of your children is.
Well there you are a little bit of everything.
Later

Thursday, February 21, 2008

Failure of my marriage wasn't due to Autism

I pondered long and hard about posting about this one but, I think it is important.
There is quite a strain on a marriage and family when you have children with Autism.
They do take up a lot of time. There is a big financial strain.
And it is tiring at times, very tiring.
A lot of couples with Autistic children end in divorce.
My divorce wasn't due to my children's Autism.
My husband wasn' t a nice man and by the time I found this out, it was too late for me.
Last year in June/July, I had him removed from the home and charged with terrorising.
It was a traumatic time for me and it was a hard decision to make.
I had been coming to it for a long time but had to wait until the time was right.
I was very fortunate that the Sheriff that we have in our small town is a decent, level headed guy who had all his ducks in a row before the initial charges were laid.
It was a well prepared take down and no one was hurt, that I am aware of, during his arrest.
I have to really give thanks to our sheriff and also to his deputies.
Terrorising and terrorism are two different things.
He had made my life a heinous hell for 9 yrs and although I did what I could to protect my children I could see that if he wasn't removed, he would do irreparable harm to them emotionally.
I don't think they were too sad to see him gone.
In fact their behaviour actually improved after he was taken away.
He is still incarcerated at this time although, I hear that he may be released soon.
The Center for Domestic Violence were very attentive to our needs although actually going to a shelter would have been the last option for me as 3 of my children would not have taken the change in stride.
They did understand this but, still went out of their way to accomodate us just in case it was needed.
I don't know if I will be safe after he is released as multiple threats were made repeatedly and I know his evil nature but, I don't want to live the rest of my life in fear.
I just spent the last 9 years living like that, worrying about what I said, where I stood, what I did, even breathing at times seemed to upset him.
Now to live the rest of my life looking over my shoulder, waiting for the crack of the rifle or the news that one of my children is missing, I don't know if I will be strong enough to handle it.
I can say that I am during the day time, but, at night when the dogs bark or I hear a creak on the stairs.... I honestly can't say.
I would like to think that if I made it through the last 9 yrs of hell, I can do anything and I have the children to think of.
If anything, I can be strong for them.
Later

Thursday

Today is usually NAET day however, Sarah and Eric were sick and I had to take them to the clinic instead so I had to cancel.
Last night I had given Sarah Motrin prior to her going to sleep but, at 1230 she was awake again, wanting water but feeling feverish.
I motrined her again and gave her water and she nodded off again but awoke at 330am complaining and asking for more water.
This time she was so hot that I could hold my hand half a foot away from her and feel the heat.
She was very angry too which is a clear indication that her fever has bypassed the 105 section.
I gave her tylenol and more water and applied an icepack to her back and her stomach. She wasn't tolerating much else.
She lay down again and a few minutes later Rachel sat up and said that Sarah had punched her in the eye.
I asked Sarah why she would have done that and she replied that Rachel's hair was tickling her face.
Knowing how irritated Sarah gets when she is ill, I moved and pacified Rachel.
For a while there, I considered calling round to see who could come in and stay with the children while I took Sarah to the ER but, I was unsure who I would be able to wake up at that time of night.
She also had expiratory wheezes and this made me a little uneasy too.
After about half an hour I noticed that she wasn't so hot and after an hour she was sleeping peacefully and her breathing had pretty much returned to normal so I could relax.
Finally it was time to sleep.
They both have an infection and have been started on antibiotics so hopefully, this too shall pass.
Today she has only had one temp and motrin and an icepack put that down within half an hour. I called Blondie as a precaution and she came straight over which is a nice safety blanket and she has offered to come and stay with the kids at night should I need her.
Eric, apart from a runny nose and a cough has been pretty asymptomatic.
So he should get through this without any problems.
Hopefully no one else comes down with it.
Later

Wednesday, February 20, 2008

So Much For Spring

Just when I thought that the weather was going to get warmer, today was one of the coldest days I can remember in a long time.
And as luck would have it, the household is starting to come down sick again.
Started with a nasty cough and now I have a couple with runny noses. Of course, that doesn't improve their disposition as some of them really object to having their noses wiped and it has to be done at frequent intervals. Eric's was like a faucet today and if there is one thing I can't stand it is that.
I should have taken a photo today to post on the site.
I think Eric is going to be an interior designer.
He raced around my kitchen today and went through all the lower cupboards, opening, pulling out, going through everything he could reach.
It looked like a war zone by the time he had finished with the plastic bags cupboard and then he just sat there in the middle of this surveying all he had done, looking mighty pleased with himself too I might add.
When he got to the garbage bin though, he turned around, looked me in the eye and shook his finger at me and said"no, no, no".
I was pretty impressed. He finally understands that he can't play in the garbage I thought, but, my joy was short lived, for, he promptly turned around and plunged his hand in.
That is when I figured out what the no, no, no was about, he was telling me not to take him away from the garbage bin.
Smart little fella.
Luckily as it is Wednesday, Rachel was at home and we were quickly able to restore the place to rights.
Apparently the weather here is going to be 32 degrees tomorrow.
I will believe that when I see it.
Where I don't have snow isn't worth having it and after the freeze, melt, freeze, melt weather we have been having, the driveway is packed with ice.
I give it a go when time allows as I am very conscientous about removing the ice where the kids are walking. Last thing I need is for one of them to slip and crack their heads.
I was very fortunate or should I say they were fortunate that none of them have the seizure disorder sometimes found in people with Autism and I sure don't want a crack on the skull to bring on any additional health problems.
I tried salt last year but it seemed to start leaving little pockmarks in the driveway and it proved too much of a temptation for Kathleen.
Thought about going out there with a hair dryer and seeing if I could melt it off that way.
But, I thought passersby may think me a little odd and I figure sure as eggs are eggs, the day I do that, it will snow that night.
Oh well
Spring will be here soon, I hope.
Later

Tuesday, February 19, 2008

Trying Coffee For ADHD

I have heard it mentioned several times that coffee although a stimulant for some people actually has a paroxysmal effect on people with ADD/ADHD.
Kinda like giving them stimulant drugs like Ritalin and such.
It has a reverse effect on them and actually serves to calm them down for a period of time.
I looked after a man in Bismarck, I think it was, who said that he spent some time in a rehab unit in Chicago and from the window in his room he could see a school.
In the mornings he noticed that all the children getting off a particular bus were all carrying thermos flasks and he commented on it to one of the nurses looking after him.
She told him that they were children with ADD/ADHD and they were running a trial. The children were carrying coffee in their flasks and at certain times during the day, the teacher would instruct them to drink some.
Well at that time I thought it was worth a crack so offered some up to John to see what would happen.
I served it black with no sweetener as I thought that would detract from the effects of the coffee.
Naturally enough, he wouldn't take it.
Haven't thought much else about it but one of my friends brought it up to me last night. She says that she gives it to her son and it works pretty well.
We discussed it a bit and I discovered that she not only uses creamer but a small amount of sweetener.
So, this morning, I brewed some up for John.
He drank it without a problem which was nice. Then off he went to school.
Nothing was written in his folder about his mood or behaviour today so I asked the lady who dropped him off and mentioned the coffee.
She said that he was fairly calm in the morning but was a little wound in the afternoon.
I suggested sending a little with him so they could give it to him with his lunch to see if it made a difference in his ability to concentrate.
A short while ago he was starting to get a little flappy and he was bouncing around the bedroom so I gave him a small amount.
It has been half an hour and he is still somewhat loud but he has ceased jumping on the beds so we will see.
Later on I will research and see if I can find some more info on it as to amounts and times etc.
If anyone else has tried it on their children and wants to leave a comment, that would be real helpful.
Later.

Monday, February 18, 2008

My Time At The Option Institute

Two years ago I had one of the most unbelievably wonderful experiences of my life.
I can even go as far as to say that it changed my life for the better and introduced me to a wonderful group of people who not a day goes by when I don't think of them.
A lot of wonderful people banded together to make this possible for me and I will always be eternally grateful to them.
I went to The Option Institute in Massachusetts.
It was a week long course teaching people how to enhance the lives of people with Autism.
It was a week long course in discovering myself.
I learnt many things that week.
One of the greatest things that I learnt and I think this helped to change my way of thinking and how I dealt with my children with Autism was that I wasn't alone.
Of course, I knew that there were other families out there with children who had Autism but, it wasn't the same.
Now I knew 69 other families who were going through the same things I was.
Who were feeling the same things I was.
The helplessness, the despair and the hope.
Each night as I pray for each of these families I know that there are at least 69 other families praying for us.
At least 69 other families who are sharing in our triumphs and crying over our disappointments.
The week changed me immeasurably and I came back from it renewed.
There were others out there going through everything I was.
It made me look at my children differently.
I was able to let a lot of stuff go and move on.
I was no longer looking for cause or blame. I was looking for a solution.
Little things that would bother me in the past like their stimming and flapping. All had reason for them and therefore for me.
The lessons that they taught us were nothing compared to the new way that they helped me to feel.
They built me up.
They made me feel worthwhile again.
As a result, I think my children were able to progress better.
Little things that would have upset me in the past, I was able to laugh about.
I have had 9 fairly large, children caused floods and now I just go get the mop and get on with cleanup.
oh well.
My curtains don't match.
I should have known better than to leave a thread hanging and I am getting pretty handy with a needle and a thread.
Nathan ripping up paper or tearing open a mattress to get at fill and throwing it over the bannister into the stairwell.
I clean it up once a week. It is just something that he needs to do to regulate himself.
If visitors don't like it's appearance, I can show them where the garbage bags are and they can pick it up. I am not going to get upset about it anymore.
He doesn't do it all the time, only when he needs to calm himself and it only shows up when he is improving in some other area so it is actually a good sign.
The Option Institute is full of people who care about what they are doing.
They are a wealth of information and are not hesitant to share it.
They can be contacted at www.optioninstitute.org
I will be eternally grateful to them.

Sunday, February 17, 2008

A day of rest

Sunday morning my friend picks up Rachel to take her to church.
On the odd occasion, Sarah goes with them.
During the time that they are gone, the house undergoes a quiet metamorphosis.
The girls are incessant talkers and where ever they are, there is noise.
They like John to join them in their games and encourage him to join in, and sometimes Kathleen, so there is invariably always noise as long as they are awake.
When they are gone, the boys seem to take a bit of a breather and there is quiet for a while, then, within an hour, an odd thing happens.
The boys, including Nathan start to talk.
It is almost as if they don't get the opportunity to do it while the girls are around and so they make the most of this time.
My sister just sent me a picture of my mum so I called Nathan over to have a look and as I explained to him who she was and where she was, he repeated it and smiled as he watched.
John has visited several times to tell me something different about what he is up to in the house.
I can hear Nathan in the loungeroom vocalising and occasionally repeating a word that he is either hearing from John or the television.
And Eric is at my feet playing with his toys and chatting away.
Last night I was trying to rock him to sleep and Rachel walked past so he started pointing at her and yelling what sounded like Rachel.
He has a good set of lungs on him and wasn't satisfied till she came and kissed him goodnight again.
Now Nathan is yelling "yay"
All is right with his world so it is right with mine.
Donna

Saturday, February 16, 2008

Today I heard a giggle

Any time in my house you hear a giggle and you can't see a child, it is usually a good idea to check it out.
The rest of the kids were in the bedroom playing school and I could hear their games without problems but this one lonely little giggle came out of nowhere.
So, off I went to find it.
Didn't have far to go.
Nathan was by himself as usual and was in the loungeroom.
He had found Rachel's barbie rollerskates which are at least 2 sizes too small for him and was attempting to put them on.
He had one foot partly in and was attempting to get the other one on while standing there off balance.
He kept losing his balance and almost falling and at those times he would giggle but, he kept trying as I stood there watching him and he was unaware that he was being observed.
He just kept trying and he didn't get mad or frustrated, he giggled at himself.

We can stand to learn a lot from a kid like that.
Donna

Thursday, February 14, 2008

Thursday is NAET day

So today we headed off on our trek to Montana to do our NAET treatment.
For those that don't know what this is, last week I posted about it and you will find a link in that post if you would like additional info.
Prior to that, I rushed up to the Elementary School to sort out the complaint that should have been in Jessie's file.
Wegner explained to me all about how Jessie had contacted Community Options and they had told her that there had been no breach of confidentiality on their part.
So, a note to that effect was put in there and that was that.
He said that he did not want me to think that it had been ignored.
He started to take notes.
His first paragraph went something like this:
The day I went out of town and Blondie and Jessie were at my house looking after the children, Jessie told Blondie about an incident that happened at the school that I had not been notified of.

Now read that last paragraph back and look for the obvious.

As I pointed out to him, the key word there is school.

Why were they even calling Community Options?
It was an incident that happened at school. Should never have been brought up.
Clear case of breach of confidentiality.

Wegner said that he needed to call Becky and speak to Helvik so I told him that I wanted it filed in her file as it was a school breach not a community option breach and left him to it.
I will say, he was not quite so cocky as he had been the last time we visited.

Nath and I rushed off to our appt with Kay,
He giggled on the way there and when we were waiting in the waiting room he kept it up.
He just really seems to enjoy his time there.

Today was the completion of the first 15 basic and according to the DVD I watched with the case studies, from here on in, we should start to see more changes.
Won't that be absolutely magnificent.
I can hardly wait.
He went through his treatment with no problems and said byebye as he left.
Then he and I went to the grocery store and he was perfectly behaved.

I erased the rest of this post.
I initially attempted to keep Rachel safe as I had concerns for her safety.
If anybody took it as anything else then that is your mind at work.
My intent was pure hearted.
The fact that it did actually turn out to be amusing to me was just a bonus.
But, it is gone now and I will try and find another way for Rachel to understand stranger danger.
Later

Wednesday, February 13, 2008

How is this for intelligence.

This post too was deleted.
I at times have a lot of trouble getting what I believe is a fair deal for my disabled children.
I already have disabled children, why does it have to be made so hard.
I just want someone in the school system to understand that their job is important.
It is important to the welfare of my children.
It is important that they move forward if they are to survive in this world as they get older.
I am grateful to the people that take their job seriously and know that for every 2 minutes that they keep the boys focussed and on track, could mean a heck of a difference in the way they cope with things to come.
I understand the urge to go out and discuss the boys idiosyncrasies with other people. Some of their behaviours are a littl unusual.
But, remember as you are doing this,
these are children, they are someone's children.
And just like you would like your children to be treated with respect and taught and cared for by people who are employed to look after them, I expect the same for mine.
And, I will not settle for less.
I will fight for my children.
I am all they have and if I am unprepared to do it, who will.
When I was in nursing training in NZ a very wise nurse said to me. "I treat every patient as if they were a member of my family, and I think to myself, would I like to see my child or my grandmother treated like that".
Mighty fine words and I tried to work by them.
It should be the same for teaching.
You are molding young minds.
I am sorry that every now and again I have to be unpleasant, it really is not in my nature to be nasty but, no one is going to mess with my children.
Thank you for every two minutes that you give them.
Donna

Monday, February 11, 2008

I Know I have A Lot To Be Grateful For

Tonight Eric and Sarah played for a while. Both laughing loudly and merrily.
After she left him to go and do something else, he pointed in the direction she had gone and called, what sounded like, Sarah for quite some time and then looked at me to see if maybe I could produce her.
I got her to come back for an encore performance and he reacted gleefully and encouraged that calling her name seemed to work, repeated it over and over to her in varying decibels.
Nathan and John sat down together in the yellow room and played video games together. John didn't even get upset having to wait for Nathan to finish playing Mario Go Kart as that is not Nathan's forte, then John was quite content to sit next to Nathan and cheer him on while he played Mario Brothers.
Rachel read a book to me yesterday evening. I only had to say a few words for her and after she had sounded them out herself could say them when she saw them again.
As the page numbers grew where she didn't have to ask for help, you could see her confidence visibly grow as she took greater possession of the book and her head came up higher and her voice became louder and less tremulous.
I was so proud of her when she finished and she was so proud of herself. I just couldn't say enough nice things to her, she was positively glowing.
Sarah and I went out for coffee this morning. She was polite and respectful to everyone she met.
One of the things I have tried to teach my children is, that it costs you nothing to smile at people and to say hello.
Who knows, they may be having a lousy day and your smile may be enough to pick them up and set them on their feet again.
Kathleen had a little friend over today to play.
She is disabled too. They are the same age and they met at the pool last summer and ended up going to the same daycare and surprisingly have been friends ever since.
When I go to pick up Kathleen on Thursdays, this little girl is ready to come with us.
Apparently when her grandmother picks up Jenny on the other days, Katy is putting her coat on to go with her.
It is really nice to see.
They ran and played outside together and laugh, man it could just light up a room. It is truly magical.
Yes, I really have a lot to be thankful for.

Sunday, February 10, 2008

Night Time

Night time at my house is always kinda interesting and no matter how much of an emphasis you put on keeping to a routine, when you are dealing with people, something always blows it out of the water.
Tonight for example.
We started bathing at 730 which is the girl's bedtime as they had all requested a snack just prior to our usual bathing time. That got a little elongated as they wanted waffles, then Eric, thinking he was getting left out decided that he would make a little fuss so Rachel played with him for a while.
Then, the girls normally jump in first as I can get them done reasonably quickly then the boys can have their turn but, while I was getting a replacement nappy for Kathleen, Nathan decided that he wanted to go first and jumped in with Kathleen.
John decided that this would be the right time to plunge the toilet while Sarah turned the sink on in the bathroom which is currently filled with bathtoys.
More water on the floor.
I was actually saved by the fact that Rachel was content to get out after she had washed her hair and got clean and Kathleen followed her out as tonight she was pretty much doing whatever Rachel was doing.
This left room for John so I got the plunger off him and put him in.
At which time Nath decided he had had enough and jumped out, so the usual hour long routine took less than 15 minutes.
What a blessing.
Sarah chose not to bathe as she has a owie on her foot and she says the water hurts it.
Eric bathes in the am when there is more time for him to swim around a bit so she will probably jump in with him.
I have Nathan and John on Melatonin. It works beautifully and they for the most part, stay asleep the whole night and usually knock off within an hour of taking it.
Kathleen doesn't use it as it has a paroxysmal effect on her and the one night I gave it to her, she was up all night neighing and galloping up and down the loungeroom.
I had with the help of friends painted the bedrooms downstairs and took great pains to decorate one of them for Rachel and Sarah.
It looked pretty damn good even if I say so myself. And decorated so girly it would pretty close to make you dizzy.
Well, they slept in it for the 6 weeks that my sister was over here last year and have refused to sleep in it since.
At night, the girls and I play musical beds upstairs in the master bedroom which is currently equipped with two doubles.
As they go to sleep first, I sleep in whichever bed there is room.
Kathleen has taken to sleeping in their too and it is nice to see.
Tonight, the three girls just would not go to sleep.
1030 came and went and I escorted Rachel and Sarah downstairs to their room and put them into bed.
Kathleen went too and jumped in as well.
Only took a couple of minutes and wham, they were all asleep.
But, no doubt, by morning they will have meandered back upstairs and will be safely ensconced around me on whatever bed I choose to sleep on.
John has slept in the master bedroom for so long now we refer to it as John's room.
Nathan would only sleep on a couch in the loungeroom.
I took to sleeping on a foldup couch in the dining room.
After their dad was taken away, that night, John came to me and asked if he could sleep in my bed.
Nathan jumped in their too.
Kathleen who had been sleeping in a loungechair in the loungeroom slowly started weaning herself off that and started sleeping in the yellow room.
He was taken away June I think or July.
It has been that way since then. All the boys in the dining room and the girls in the yellow room.
Funny how that worked out.
Good Night.

Saturday, February 9, 2008

The Long Awaited Day Has Come

Eric, my baby boy, turned 14 months today.
For those in the know, it is a kind of magical number, after which for the next two months, there is a high probability that my son will become Autistic.
It is something that I have been dreading from before his birth.
It was like a cloud sitting on my shoulder for the longest time and now finally, it is here.
I have watched him carefully.
I have had him screened by early childhood development.
His results for that were normal. As I expected them to be.
For the most part, the children are absolutely perfectly normal until the day that they make "the change".
They speak, walk, talk, interact just as any other child then one day, wham, it is gone and in it's place is the shell of your child.
When I was at the Option Institute in Massachusetts in 2006 I was given a piece of paper, some one a long time back had done a study on early infants then monitored them to see if they developed Autism.
One of the things noticed that the head growth changed exponentially during the first year, so I monitored Eric's head and it seemed to have grown within the limits of the growth chart with no large growth change.
The other thing noted was that the babies tended to drag one leg when they crawled and crawled sort of as a frog does.
He did not do that either.
They also tend to walk on tippy toes.
Which he only does to look out the window to see the dogs in the backyard.
I know that Nathan and John both have very large heads but, I didn't monitor them in the first year as I did Eric.
I can also remember Kathleen crawling like a frog and walking on tiptoes.
But, I don't know that I remember the boys doing either of those things.
I can only continue to pray that he will be spared.
I watch him and I hope.
I spend a lot of time holding and cuddling him and telling him that I love him and hope that in the event he makes the changeover, he will remember this and know wherever he is, that his mummy loves him very much and can't wait for him to come back to her.
A week or so ago, he sat in the playpen next to me while I was on the computer and he put his hands to the side of his head and started rocking backwards and forwards.
The day before that, he lay on the floor and stared at the ceiling for a few minutes and wouldn't respond as I called his name.
I can't help but wonder if this is the beginning and I am afraid,
I am afraid that I will lose my little baby to a place where I can't go and I can only try my hardest to reach and it hurts.
People offer bandaids and say "it won't happen, he'll be alright".
How can they offer me that guarantee?
I have already lost the lotto 3 times out of six.
I would much rather they acknowledge that it is a possibility but, tell me to be optimistic, I can handle that so much better than someone telling me not to worry, it's not gonna happen.
Cause unfortunately, it may.
These two months will possibly be the longest two months of my life.
Pray for my baby. He needs it more than ever at this time.
Thanks.

Friday, February 8, 2008

Today I Fell Over In The Snow

I volunteered today with the help of a good friend to take care of another lady's 2 disabled children.
I did this a little hesitantly because there was no school today so I had my little brood of 6.
I was not sure how they would all get on together and whether or not tempers would flare and as one of them is 19 and has a bit of a history, I had concerns.
But, seriously, the woman really needed a break.
Her daughter had just delivered and she had been at the hospital with her and had had little sleep for the past couple of days. So, knowing how that goes, I volunteered.
There were a little frayed tempers here and there but, once I showed the older girl the bedroom with the video games and closed the door so that the little ones wouldn't walk in front of the tv and annoy her. She was sweet as. Found out that she also likes jigsaw puzzles so we did a couple of those too.
Will have to stock up on those and chocolate chip cookies for next time.
The younger one is sweet.
She is the same age as Kathleen and has the face of an angel.
She tried valiantly to keep up with Rachel and Sarah and made a pretty good attempt at trying to master rollerskates.
I think the coup de grace was when I bundled up the four girls and took them outside to my snow laden back yard and we had a wonderful snow ball fight.
Of course, in my infinite wisdom, not knowing that I was going to be attacked in such a fashion, I was still wearing a t-shirt and no gloves.
Good thing I had my sheepskin slippers from NZ or I would really have been cold.
Incidently, it is possible to skate while wearing those slippers although, the girls thought my pirouette looked a little suspect.
Kathleen took off her gloves as soon as she got around the corner of the house and ran like the wind up and down the backyard, sporting her new hairdo that makes her look a little like Hayley Mills in The Parent Trap.
I don't know about them but, I sure had a lot of fun. But if their giggles were anything to go by, I am very sure they enjoyed themselves.
And the best way to tell if a child enjoyed themselves at your house, when her grandmother came to pick her up, she didn't want to go home.
I have no doubt that there will be a next time.
Respite workers, good ones, are awfully hard to come by in small town America so we may end up getting the company who provides the workers to hire us.

Thursday, February 7, 2008

NAET Treatments

Through a friend of a friend, I came into contact with a wonderful lady in Montana, who is a chinese herbalist and accupuncturist.
She has been doing NAET treatments on patients for 3 yrs but, had not tried them on a child with Autism, so when I contacted her and told her I had 3, she volunteered to do the NAET treatments for free as a trial and so that I could act as a reference which I gladly agreed to do.
I chose to do Nathan first as he is the oldest.
He just loves it there. He never gives me a hard time about entering the building.
And today, he could hardly wait for Shirl to make up his bed before jumping on and stripping off to lay there quite comfortably covered in his blanket.
He often throws out words for Kay and Shirley also and answers their questions. Obviously, he feels very loved and welcomed there. It is a peaceful environment.
He goes once a week or as close to it as we can manage.
NAET or Nambudripad's Allergy Elimination Techniques was developed by Dr Nambudripad in 1983 and she has been using it quite successfully since then on children with Autism with startling results.
Basically it is a desensitization of allergies which leads to a decrease in Autistic symptoms.
I think it is definitely working on Nathan.
I have seen more clarity with his speech.
Another big change for him was when we were doing the egg allergen removal, he stopped drinking milk which for him was a big thing.
He could down a gallon a day easily and he had a very rotund, firm abdomen.
The next allergen to be removed was milk, but, how could he have known that and weaned himself independently.
Well, since he had the milk allergen removed, his abdomen is no longer firm and distended. In fact, he dropped a pants size in one weekend just because his abdomen shrunk.
He can drink milk now without a problem but, he limits himself and may only have one cup a day.
Dr Nambudripad has written many books on the corelation between allergies and illness.
NAET practitioners can be found at www.naet.com
You know, it wouldn't hurt to approach your local chinese herbalist or accupuncturist and if they do NAET offering your child up and offering to write references once the child's treatment is done. Talk nice, you may be able to get your treatments heavily discounted or free which would be better.
There are many treatments out there that work to varying degrees and I definitely think this is one to consider and try.
There are no side effects.
Check out the book from the library: Say Goodbye To Allergy-Related Autism by Dr Devi Nambudripad.

Wednesday, February 6, 2008

The Community of Autism

Yesterday I was sent an email telling me to check out a website by a family that has 6 children on the Autism Spectrum.
Yes, 6. That gives you pause for thought.
Doesn't make what you have seem quite so bad, does it.
Website is www.AutismBites.org
I posted a comment and noticed that another person had posted a comment regarding the possibility of a connection between Autism and prenatal ultrasounds.
I emailed her and that started a passing of some very interesting emails.
She is quick to point out that her theories are just that theories but, she certainly gives you food for thought with her reasoning.
Here is the link to the article she had published in a midwifery magazine www.midwiferytoday.com/articles/ultrasoundrodgers.asp

It really was very interesting and worth a read.
It would be interesting to hear from any mother that went through her prenatal term and did not have any ultrasounds.
If you would care to post a comment, I can pass it on to Caroline.
Many thanks.

Tuesday, February 5, 2008

Diagnosis Of Autism

Wow.
That is quite a step. Actually agreeing that there may be something wrong with your child and wanting a definitive diagnosis.
I knew that Nathan had Autism.
I had seen it since he was approx 14mths old.
John, I wasn't too sure about. His could have been because he was just copying his elder brother. I think I might have been in a little bit of denial there for a while.
No, maybe not denial exactly, maybe I just hoped against hope that I was wrong.
I called many neurologists, some that I had worked with, some that my friends and sister had worked with.
The answers were pretty much all the same, there is no cure for Autism.
The boys weren't diagnosed formally until 2006.
Kathleen, in 2007.
I took to the internet and the library.
If I wasn't at home, then I was at the library or work. Another necessary evil.
I looked at book after book after book.
I found many to interest me and point me in many different directions.
At first, I thought it was the vaccines that had caused my children's Autism but, then what caused Kathleen's. She was never immunised.
And, why did I have Rachel, a regular girl, in between John and Kathleen.
Now I have Sarah and Eric. So far neither of them showing signs although Eric at 13mths is still too young to tell.
Ahhh, Maybe a genetic link with multiple triggers.
Therefore, judging by all these different books, a different cure for a different trigger.
Or, maybe not a cure but, a lessening of symptoms to the degree where the person could live a normal life.
A book to try is The Essential Guide To Autism It gives a lot of information on what to look for and where to start.
There is a lot of information out there and quite frankly, it is easy to become overwhelmed.
You need to know that you are not the only out there going through the same thing.
It is easy to bury your head in the sand and not want to deal with it.
It is okay to grieve, for a short while, but, the only chance that your child has of making any kind of recovery is YOU.
No one and I mean no one will care as much as you do if your child succeeds.
For some teachers, your child is job security.
Having an Autistic child is draining emotionally, physically and financially.
You will possibly spend a lot of time fighting to try and get your child the help he/she deserves, but you know what,
The first time they look into your eyes and smile at you again....
The first time that they return your hug, and it may be just a little squeeze...
The first time that you come to pick them up from daycare or school and they notice you and run to you and wrap their arms around your legs....
It is gonna make it all worthwhile.
Longer than the 8 second buzzer, but, it is definitely one hell of a ride.

Sunday, February 3, 2008

Take Your Humour Where You Can

This weekend something interesting happened.
Kathleen, my 4 yr old discovered scissors. When I say discovered, I mean reeaaly discovered them.
Oh, she had used them here and there to diligently cut around pieces of paper when asked to, but this weekend, she really discovered what they could be used for.
All kinds of wonderful things!
Scissors cut curtains.
Scissors are real good at cutting clothes.
And, perhaps the best one......... scissors cut hair!
And, not just your own.
I would hear footsteps running at certain intervals across the loungeroom, through the dining room and into the bathroom.
Then I would hear the toilet lid bang down and the toilet flush and lastly, a gleeful little laugh that clearly said 'everything was right in her world"

Well, Kathleen has Autism. She is still in diapers and I knew that she was not using the toilet for the purpose for which it had been designed so, surreptitiously, the next time this little routine was begun, I set myself up next to the bathroom door and peeked in just as the lid was being shut.
A small handful of hair had been tossed in prior to the lid being shut.
But, she just looked full of joy. A great deed had been done!
She raced past me and looked up at me, right into my eyes and gave me the most brilliant smile.
I had to smile back, she was just so happy and proud of herself.
And as she ran past and I looked at the jagged, bitsy edges where her blonde, shoulder length curls used to be, I thought, yes all is good.
Anyway, they say, it is only 10 days from a bad haircut to a good one.
And I guess, I will just try harder to hide the scissors.

Friday, February 1, 2008

Step Forward In Time

It is now 8 years later.
Wow, does time fly. So much has happened. Good and not so good.
I smile. Would I really have changed my life?
Isn't it better to have lived life, really lived it, than to stand on the sidelines and say at the end, was that it?
I am now blessed with six children and I no longer have my husband.
It was a good trade.
But then, with all the ugliness fear and hate he brought into my life, if he hadn't come into it, I wouldn't have my children.
Nathan is 8yrs old, John is 7, Rachel is 6, Kathleen is 4, Kathleen also has Autism with mutism, Sarah is 3 and Eric is 13mths.
Time flies.
Next week they will be grown up and going off to college.
Someone who I once considered a friend once made the statement " She is in denial about her children having Autism"
How can you deny something that jumps up and slaps you in the face each time you look at it.
No, I am not in denial, I am just hopeful, real hopeful.