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

[bjrose]

I have tears! That must have been such an amazing moment!

[squidipa]

so so so touching you trully are an amazing woman maz WOW! and toy story of all things that's GREAT!
i remember getting Josiah's ears tested as we thought he was deaf and its hard work isn't it i dont blame you for being annoyed at that person i would have been to.

[jasp]

Maz I don't know what to say...what an amazing story... what a privilege it is to hear this from you... I don't know how else to put it

[~Raven~]

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!

I'm keeping that one in the vault!

[boobaloo]

wow maz, you are such an incredible mother - the patience that must have taken you, and your perseverence is amazing. it certainly puts tantrums into perspective for me. thankyou for sharing your story, it's a very brave thing to do, and you have opened my eyes up wide. i wish you and your kids all the happiness in the world xoxo

[futuremum]

maz post #34 you made me cry, then you made me laugh, then you made me be kind of filled with wonder

[lestyrox]

Maz you're amazing. Thank you so much for sharing your story, your strength and love as a mother has really given me hope. So much of what you've said i can relate to. The grieving, the frustration and anger and feeling so alone and isolated as a parent.
I look forward to your next post. Your posts are helping more people than you realise, it is so comforting to know i'm not the only mother feeling this way. Its so refreshing to read such an honest and open account of your life and the sadness and elation that goes with parenting a child with autism.

God bless you.

[Moi]

Maz thank you for sharing your story and for being so honest. It has helped me to understand what a friend of mine is going through.

[maz]

Communication. How quickly do we forget the bad and only think of the good .

We had an educational adviser...and at the time she did things to rub me the wrong way...she made me feel invaluable as a mother, my own guilt and uselessness at not being able to help my child. But looking back now I owe her....for the patients, the time and the effort she put in for those short 1/2 hour stints once a week. She helped me realise I should build and praise is 'talents' and use them as a tool to better poor area's in his life, something to this day I still do. Its short of like playing head games with someone and although its something I absolutely hate doing (im extremly black and white) its now something that has become second nature.

Wilhelm learnt to draw extremely early. I have a picture the he drew of himself at kinder one day. I love it so much that Ive framed it and have in in the lounge so I can rememind myself of the little boy that lives inside his adult mind. Yes adult mind because he is like having another adult in the house at the best of times. Anyway this day at kinder he wore an orange t-shirt with shorts...he drew the entire lot...down to the picture of Shrek on the T-shirt...and a big smile on his face. I really encouraged him with his drawing and writing...he wrote words, songs, sayings, numbers...he drew what he saw aobut him....I remember when the education adviser was around one day and she did this big who haa about getting him to draw...she commanded him to draw a face..which he did and she said isnt that wonderful. I told her he had been doing it for a hwile and she said oh its his first one..yay I taught him to draw...WTF??!!! OUr visits from her stopped not long after this because I refused to do the whole spectrum road thing.

EG lots of sign langauge....ok if the child doesnt speak...Wilhelms problem wasnt not speaking, it was not understanding or being able to actually verbually say what he wanted. As per typical spectrum disorder traits was echololia...repeatative speach and wording. I allowed 3 words for sign language....stop, wait and eat. I wanted to be able use these signs out in public and yes they worked a treat...BUT so did me repeating back to him over and over a word so he would get it. I kid you not, I would often spend 1/2 an hour saying drink, mum, car, mine. Yes I did the unbelieveable and taught my child to say mine lol. I just gathered that if he was using repeatative speach I would get to his level and do it back...and hopefully we could catcha n open window and it would help. I made word card little laminated booklets (I only refound them yesterday) and would sit there for hours reading them to him...and after 6 months my first break through. I was in the kitchen, he was watching tv in the lounge while I was preparing tea in the kitchen and I watch him...when he suddly stopped rocking, turned to me, looked me in the eye and said mum. I was screaming on the inside..woo hooo and holding back the tears I simply answered him with yes Wilhelm...he smiled at me....winked and then looked back at the telly and that was that....he never rocked again from that day. My boy smiled at me...he said mum and smiled at me. He didnt scream at me, lash out with throwing a car at me or the chair...he didnt head butt the ground..he searched for me, found me and made eye contact with me....we were winning......we were breaking through.

Another was to have pictures everywere around the house and a picture time table so he knew what order things were done in....then when the things were completed they were to be posted into a box. I tried....several ties but it jsut didnt work for him...he refused it and the finish post it box was shelved much to the disgust of the people in the know. I learnt to listen to him and made sure of lots of eye contact. I refussed to let him know he was there until he made either eye contact or touched me. Then I would get down to his level and talk to him..not lots of words but short straight to the point ones...it was dame frustrating for both of us...but we kept doing it until it worked. Our speehy was impressed with his eye contact after a short while and the scremaing, tantrums were beginning to lessen we were starting to get through to each other.

The switch had been struck on again and we were on our high end. I found that for every high there were low periods that followed. We regressed toilet wise. He loved making things from playdough and it along with playdough was an obsession. Kids on the spectrum have sensor needs big time. i know of a little boy who likes to rub his genetals up against bare feet....another who sleeps with wet suit on for comfort and another who twirls for hours in his back yard until he falls down in exhastion as he likes the feel of the air rushing past his ears. Wilhlem often waited until he went to sleep to do a pooh..yes im getting to something here......pooh is quiet um flexable and the little bugger would wait until he did one, pull it out of his nappy and mould it into a long fat shape and hold it until he fell asleep. we often went into his room and pull the poo dough as we called it out of his hand, clean him and pray to god we didnt wake him otherwise it would be melt down central.

By this stage Wilhelm was 4 and doing 3 yo kinder..he still was only doing 4 - 5 hours sleep in a 24 hour session. hIs moods were reflected from his lack of sleep, he was moody, violent, screamed and extremly none co-operative. Our doctor put me onto vallergine and as much as I hate having to 'drug' my child, for the first time since I could remember he slept for 10 hours and woke in a good mood............then came the special need school and the MRI...........

[PrincessXanthe]

Originally Posted by maz

My boy smiled at me...he said mum and smiled at me. He didnt scream at me, lash out with throwing a car at me or the chair...he didnt head butt the ground..he searched for me, found me and made eye contact with me....we were winning......we were breaking through.

What a beautiful memory . Thanks for sharing Maz.

[funkeeefrog]

Wow, make you realise how much you take for granted. What a special moment that will be treasured forever.

[chickybabe73]

Maz

You tell your story so beautifully !

You are an inspiration - thankyou so much for sharing.
You are helping me to understand - thankyou

xxoo

[lauren22]

Originally Posted by maz

My boy smiled at me...he said mum and smiled at me. He didnt scream at me, lash out with throwing a car at me or the chair...he didnt head butt the ground..he searched for me, found me and made eye contact with me....we were winning......we were breaking through.

Maz
oh im holding back the tears at the absolute love in your words. So beautifully written, thankyou, just thankyou.

[feeb]

Originally Posted by maz

t.when he suddly stopped rocking, turned to me, looked me in the eye and said mum. I was screaming on the inside..woo hooo and holding back the tears I simply answered him with yes Wilhelm...he smiled at me....winked and then looked back at the telly and that was that....he never rocked again from that day.
..........

OHHH what a memorable momment for you. I am crying reading this.

hugs

xoxo

[boobaloo]

what a special little guy - you must be so proud of him and the progress that you have made. you are incredible.

[maz]

We began an early intervention class at the local special needs school. To be honest I was scared about his doing it...exited to what things might become but scared witless to the backlash I might recieve. I couldnt believe it either...I would actually have 2 1/2 hours for myself for the first time in I dont know when. I spent the time going to the stores that I couldnt enter before, actually going to the loo whilst out in public, banking...shopping at coles I felt invigirated......I had some space yet after about 7 weeks I was starting to fell a bit lost, my side kicking mule was missing. Thankfully that year saw me busy with specialist appointments for myself as jed and I had decided we would try and see if we could get my tubes reversed and add to the madness by having another child. I am so greatful to Jed for allowing me to talk to him about my unfinished mothering urge....and agreed he felt the same.

We had started seeing a vast improvment within the first month. Wilhelm became more responsive to eye contact and allowed some physical touching eg brush your arms against his ect. He became more verbal and actually answered, even if it was a grunt, but answered if I asked him a small question. He began eating other foods bar white foods.....brocolli was first...how nice to actually see some colour on his plate and see him enough eating it.

I have always been an avid reader to the kids...reading them stories from the newspaper, magazines books through out the day and its a wind down at bedtime...I never realised how much he took in. He actually began writing what I had read him the night before when he was at 'school' . I was blown away and our pead and I came to the conclusion that Wilhelm has a photgraphic memory. I remember going to Nikolaus' parent teacher interview in prep and Wilhelm reading the word 'COMMUNICATION' from the back wall . Both teachers were blown away...especially when I told them he was 4.
TV and movie logo's began spilling onto paper, pictures of cartoon characters, web site addresses but nothing abou thimself or his family..no matter how much we tried. I had alot of parents snear when the kinder teacher would proudly show us his latest and greatest picture of the day. I was almost ashamed that my son drew the way he did, I wont forget those eye roll's and tight lipped mouths that were shoot our way.

We were at the post office one day when one of the kinder kids was there and said to her mum
There's Wilhelm.... mummy...hes smart and helps me
Mum looked at me with 'that' look and said
Yes we hear how smart he is from everyone
and walked off.

I was so upset......shouldnt she be happy that at age 4 another child is 'helping' her child and befriending her? I was made to feel like it was my fault that he was so smart.....yes he can spell andn he can read but did the stupid woman think for a second that maybe he had/has trouble with comprehension, that he doesnt actually know the difference between a road and a foot path let alone a stranger and a friend?

Special education was a blessing for us. 2006 was a fabulous year. As I said before He was thriving there, I was making friends with some of the mum's who's children were on the spectrum also. It felt good to be able to go to a friends place or have a party and not be worried aobut your child screaming. We had a play date, the 4 of us and our 'boys', including our 'normal' ones. ONe boy started screaming, then it set another one off, and in the end all 4 SN boy's were looking at each other screaming. As they say when in Rome and me being me...I began screaming with them, the the other girls joined in....it was so unbelievable. The lid had popped of the pressure cooker and instead of screaming we all ended up laughing. It was the best therapy and it connected us. Sadly we have drifted apart due to our boys all going to different schools and our lives have taken different paths but I wont forget the love, support and friendship these 3 woman gave me and the friendship our children had. We gave birth to our princess in september and he was a proud big brother BUT no one bar me or jed was permitted to touch her or go near her..... he would sit there smiling down at her for ages at a time and if she cried, he would lovingly put her dummy back in her mouth. I had to stop breast feeding Vy at 5 weeks...I found it to hard to try and feed her and have him soil himself and smear it over his body in protest. The lack of help I had recieved after birth gave me self doubt in my abilities so I turned to the bottle (FF) and it helped.

2007 saw a pg maz waddling to school for Nikloaus, Kinder for WIlhelm and SE fridays and juglging a toddler. He was in a new SE class this year and 2 of the children in it were extremely violent in their communication. One headbutted the table until his head bleed. Another kicked, screamed and scratched, tok his clothes of and threw things. Wilhelm is a mimicker....loves to play the clown and if he notices that some will get a laugh for falling on their butt, he will follow suit. You can now imagine what happened to my angel boy then cant you. The tantrums started again, the anger, the lashing out....something I didnt need whilst pg. He began pushing Vy, barely slept and threw the biggest fits inthe car no matter which root we took to get to the school. I had spoken to our Pead about it....and he had said that WIlhelm was to intellegant to be there as he knew that the other kids were different, yet he knew he wasnt normal like most kids but couldnt handle the agression (he never eally has) he began to put his hands over his ears and telling me it was to loud, would cry if I raised my voice and tell me *childs name* was naughty and was hurting him. I spoke to the Vice principal of the school who agreed with the pead and said that early education is there for children that need it and she felt that he had gained everything he would and could get from it. I wanted to wait until the end of the term for closure but he worked him self up that bad that he had stopped eating again...so I rang his actual teacher. I hung up the phone crying. After telling her our reasons she said she seemed to think I was taking 'this pg' to hard and it was to much for me. I was looking for excusses and this was my scape goat. WTF??!!! I told her that having SN kids for 3 hours a day doesnt make her a specialist in the field...living with the child, being the mother of the child makes you an expert not some know all attitude, and hung up. I rang the Vice principal, still crying and told her the teachers reaction. I cant remember her response...I know she was very kind to us and still tothis day stops us to say hello in the street but a teacher like that leaves a bad impression in your mind of the whole school as they represent it. I swore from that moment on he would never go back there. As soon as I told him no more *school's name* I could see his shoulders relax and alight come back on in his eyes.....Really mum? No more *childs name* ...he wont hurt me anymore. I had the same senario repeat itself years later and you wont believe the reaction I got then, from someone who should know better.

Being pg this time was special...he actual knew that a baby was growing in my tummy and felt kicking, saw the pics......but life would be turned on its head again. He knew and I should have listened........

[Cookalooks]

Maz i check in everyday to this thread and i look forward to reading your entries as they have helped me gain an insight into what a friend of mine is just starting to go through. Thank you for sharing your story and allowing us into what must be just a small piece of how your life is - you are truly amazing - as for that teacher.....well my mum always told me if I don't have anything nice to say then don't say anything at all, so i won't on that matter - Thank you again for your sharing you story

[Nettie]

Maz - the stress I'm under at work seems now completely meaningless. What you face every day must be so like living in a pressure cooker...

I can only say thank you so much for sharing this and enlightening me. I really had no idea how completely overwhelming Autism could be.

Do you want to start up another thread (or put it in here) about what we 'ignoramuses' should do if we meet a child with autism? I would hate to set off an episode by trying to be kind.. It's fine if you don't want to (heck - you've got enough on your plate!) - I would just like the advice. I'll go looking at Autism sites for it if you're not able, as I feel it's very important to me now!