Standing on the outside looking in...our life with autism

[maz]

We have pictures in our bedroom..off all the kid's at 7 months old. Their smiling chubby faces warming our hearts still when we look at them.....yet I look at Wilhelms and I feel the emptyness and sorrow I felt that day it was taken. HIs eyes are so hollow and it was at the same time that he stopped smiling....stopped being the happy baby people would stop me to look at and coe over.

We had hit a pot hole in our road.

Anxiety had kicked in. We had gotten to the stage of not being able to move, use a certain tone or even sneeze without setting of an episode of emotional fits, physical and verbal. The first one scared the living bejeezies out of me. His body was so ridged that I thought he was having a seizure. Lucky for me SIL was there at the time and confirmed it wasnt a fit (she's a nurse) but grew concerned about his actions towards me, especially when I went out of the room to go to the loo. It was something that was extremely hard and confronting for me. I like my own space and all of a sudden this child was behaving so badly. Yes I let it go a few times but I noticed that if I didnt react and he flipped out, that I would pay for it that night with no sleep at all...yes you heard right no sleep. It was common practise in this house that he would go to sleep at 2 -3 am in the morning and wake at 6am for the day...no day time naps...no. It would have been great if he would have played in his cot at that time...but no he screamed and screamed.....my nerves were on end...I was an emotional train wreak...a bomb waiting to go off.

Ive done things as a mother that I am ashamed of still to this day. Nothing I can do will ever take back the hurt I emposed. I had no control over my emotions, and angry often was a release for me as it permitted me to cry afterwards. No excuse I know....I had noone see the signs...no one to guide me...I was doing this sole and was so clueless. Jed worked extremely hard back then...he did 12 hour days and well family as much as they tried they seemed to be more of a nuisance then anything, pointing out how had his behaviour was...informing me that my parenting was not up to scratch and belittling me mentally. Friends dropped off when I wouldnt sway to their needs and putting my children first. Girls nights out became a thing of the past as the invites stopped as it became increasingly harder to justify going out and having the punishment and torture the next day of screaming, hitting walls, head butting the floor and then the rocking. OH the rocking...we'll go there later (mental note)

I built walls......high high walls. I switched of my 'personality' and felt like a motionless robot, doing the same day in day out. It was easier to do then put up with the sadness that eloped me...the angry that grew in me and the hurt that creeped in. I didnt realise but I had become this angry negetive soul who lashed out at the smallest things.....hatred became etched on me and I took it out on. My wake up was when a neighbour had told work colleges that I physically abused my doodle. Had I? Had I actually hurt him in that way? How could i have not seen the path I was going down? The distruction I was causing to my relationship with my son who giggled and tickles, who loved me reading him a bed time story and who genuinly searched for my eyes for a look of love and respect.

I was letting this 'thing' consume me..the guilt of being a bad mother consumed me and I decided that any steps taken from that day would be positive, strong and fearless. Life was to short for this! LIfe was ment to be enjoyed.....not to be kepted in the back of the cupboard. Child hood memories are guided and made by our parents and I didnt want to be the monster under the bed for my boy's..I wanted to be the fairygod mother who made a beautiful moment out of something terrible.

It was then that I allowed myself to greive the child that should have been......and although it was one step forward and 5 steps back at times....the switch had been touched and turned on.

[squidipa]

wow reading your words just encapsulates me taking me from my reality somewhat into your past. thank you again.

[sunflowa_girlie]

Maz, all I can say is thanks for sharing

[Pinny-mum]

Thanks for sharing Maz,
You are a beautiful writer!!!

[willow5]

Hi Maz, you write very well keep up the great work! I'm eagerly awaiting the next installment. Hope it's theraputic for you as well must be very hard

[~kellie~]

Maz- I agree with all of the others, you write very well... thank you so much for sharing your story with us

[organicem]

Maz, I hope that writing this down is helping you.
You are doing a wonderful job giving your children your love

[rufalina]

Maz - When you share you open yourself completely, i feel like I am walking in your shoes. thank you. You are opening my eyes to a world that I know exists, but shamefully put my head in the sand over. Again, thankyou. And I hope this helps you out as much as it will me.

[Claire_A]

Wow thank you for being so generous and brave by sharing your story with us

[mrsmac]

Maz, you are an amazing writer, I am learning so much from you, it is such a help in my journey as a teacher. BB has taught me so much comapssion and understanding for others and given me a window into other worlds.

[*LovemyKids*]

Can't wait to read more maz you are such a brave and inspirational woman!!!

[christy]

Maz hun two things that I've thought about since reading your story and starting mine....

1) Often people don't understand the abuse, physical as well as emotional that we as parents of these super kids get. I don't think I would have understood it at all without living it. I'm not saying people can't sympathise with you, just that its hard to understand without having your child attack you physically....

2) The grieving for your child. Having to go through a grieving process in order to release the child you dreamed of, and be able to embrace the child you have.

[MantaRay]

You are so amazing Maz. Your little boy is so lucky to have you as his mummy

[Mummykins]

Thank you for sharing your story.

[Nettie]

... I have no idea what to say.

Thank you SOOO much for raising my awareness. You've changed me and I thank you for it.

I eagerly await further enlightenment..

[maz]

Gulping back the lump that stuck in my thoat I put my hand up and waited for Richard Eisanhower (sp??) to pick me out of the group of well over 200 people. I was never a fan of being infront of people.....I was shy (yes me) and quiet withdrawn....years of abuse made sure of that....but as I stood and began describing to Richard WIlhelms behaviour, a feeling of being reborn almost came over me. I stammered out a few things and saw a wave of sadness cross over this man's face. I'll never forget it and even now thinking about it brings back the emotions I felt of that day...the sickness in the pit of my stomach, the pain and guilt for not making the perfect child and the sadness

Wilhelm had never been a physically aware baby. He didnt crawl until 13 months and only began working at 19months when we had gone to see out pead. first words he asked me...

so how do you want it??

My reply

Dont F*** me around mate....I cant help him unless you help me understand him

So we were placed into Hume services who had a team of OT's, speech therapists (not one word had passed his lips), educationally advisers, pyhsios ect. We were sent for a hearing test and the technician told me I should control 'him' so he would comply......lets just say her ear phones were firmly wrapped around HER head when we left.

From the age of 18 months to 3 years I think were the most extreme of our lives to date. No matter what road I took, WIlhelm would begin hitting himself in the head, scream so loud that it hurt my ears and cry if we went to turn into the coles car park.....I cant tell you how many times I sat in my drive way with the music on just crying until he calmed down.

Putting him in a pram was a nightmare as he couldnt see me so new pram was bought so he could and he still screamed.
He hated men looking at him and would scream, cover his ears and start stomping on the spot. I had one old man once tell me he needed a good wack on the arse...I just stood there crying...feeling numb.
THe educational advicer had tried teaching him to go up to people and pat them on the shoulder to say hello.....a great skill NOT especially when the child is already physical...he went up to a little girl and did it and the grand mother went off causing him to scream, throw him self down and head butt the ground until he made his mouth bleed. It was a switch for me...I aplogised and said he was actually reaching out...the first time ever as he has autism..her comment was..im sorry he doesnt look it....WTF? I yelled at her....we'll you dont look stupid now do you!

Change effect him badly at this stage. He was always a great eater...loved his food but now screamed and scratched me when I tried to feed him I kid you not...he didnt eat for 2 weeks. 2 friggen weeks is disgusting I know...I called EVERYONE. I saw dietican, the pead, our social worked.....we drank milk and that was it....i tried putting incremin drops into the milk but as soon as the milk hit his lips he threw the bottle at me and screamed for hours. The pead suggested toddler formula as last option and..it actually worked. Eating was a slow process and it was actually not so hard to adjust. He had a preference for white foods...ect - eggs, cheese, cauliflower, potatoes and fish. No sauces, nothing mixed..all seperate and if it dare be together god help me.
I caved one day and bought him Macdonalds....salt and starch appartently is a high craving factor for many spectrum kids....I learnt to regret that day and that choice for a long time. Everytime we drove past Macca's he wanted it and the tantrums started. I remember going to Melbourne for my nephew's birthday and my SIL helping us plan our route so that we wouldnt have to pass one in the 3 hour drive there....and the reward for being so good for the 3 hours....Macdonalds Ironic isnt it.

In this time I researched as much as I could....listen to him with not only my ears but my eyes. I began to understand little signs of when he was becoming distressed, when he got excited, and when he was trying to communicate to me.

When he was becoming distressed I would hold him close, rub his back and tell him its ok mummy is here..over and over. I would go out with an MP3 player in my bag for when I knew I would have to go shopping and he wouldnt like it. First test was Coles.....I put the MP3 player on him in the car...he loved bopping his head and when I went to turn into the car park I saw the look on this face and simply reached behind me and touched his knee....he looked at me and I didnt even have to say anything....me looking at him seemed to smooth him. We had a break through .

Excitement was HUGE in this house...we would jump on the spot, run in circles and clap our hands. Chocolate was a excitement trigger and movies...not the actual movie..the credits at the end (and still is to this day). IM sitting here with a smile on my face cause when we saw the speechy he word for word recalled a scene on his favourite movie Toy story and she was astonished and I was proud.

Communication....hmmm I might leave that to the next post

[~Saram~]

[Marlene]

Oh Maz, I don't know what to say!! You truly are an amazing woman, your children are extremely lucky to have you...as you are them. They chose you to be their mummy for a reason hun.

I hope writing all this down is helping you in a big way...and selfishly I want your story to help me too. I want to understand what one of my friends is going through, with her son who has just been diagnosed with Autism, he is not yet 3 years old. I want to know how I can help her, I don't want to be one of the friends who disappears from her life.