My Autism journey...

This is a post i put on a new forum www.autismmatters.com.au that i was invited to join... yes some information you have read before, some you haven't... here is my journey so far with Autism....

My name is Chelle, i'm 42 and i am a single mum with five children ranging in age between 23 and 6. I also have a grandson who is 3 1/2 as well. Yes, very interesting my life i will admit! LOL

I have two children with ASD, one diagnosed, one not. My oldest, my daughter, is an undiagnosed high functioning autistic. During the course of her life she was diagnosed with ADD at 10, and at 6 with severe dyslexia and they also labelled her as mildly intellectually retarded because she could not complete the verbal aspect of the IQ test. Her non-verbal, she placed in the top 5% of the populus with her responses, non verbal, she could not read "Can the dog run?" and answer it. When asked to describe an umbrella her response was "it goes up" and that was all. Before school, Stacey could read, she knew the alphabet all the shapes, including 3-D, and could count to 100. At 18 months she was using full sentences ie "May i have a glass of water please Mummy?" By the end of her first year of school, she was labelled illiterate. I had no answers and very little support. Autism was basically unheard of. I attended speech therapy for her and an intensive occupational therapy for her. She improved slightly, but she required constant attention, and we battled depression as a result. She developed bulemia at 9, and anorexia at 11, and no one could help us because children at that age never developed those types of disorders, right? *shrugs*

When she was diagnosed with ADD we were advised to put her on Ritalin. I hated it, and never felt it helped her. I took her off it when the high school she was at refused to supervise her in the taking it. Her recall ability was appaulling yet they stated to me she is in high school now, she is not a baby, and it isn't our responsibility to help her. If only i knew then what i know now!

When my son received his diagnosis at 3 1/2, the developmental paediatrician looked at me and said "if your daughter came and saw me today, i would be giving her the same diagnosis as your son!" Devestating! Stacey was already 20 and not interested in being labelled "retarded" like her brother. Three years and a lot of tears and adjustments have changed that. She will now admit it, at home to me - i'm the only one! And it still depends on her mood. But she has adopted a lot of the approaches we have for Connor for herself, and she has gone from being unemployable, to holding down two jobs and working towards leaving home finally.

Connor was developmentally slightly slower than the other kids when he was born. They all walked between 9 and 10 1/2 months of age, he was 12 months, almost to the day. So he was still normal. He sang, he danced, The Wiggles and Thomas was his life, and one day it just stopped.... My son disappeared right in front of my eyes.

He was 14 months old. He had become very very ill with each of his triple antigen immunisations. Give him liquids and panadol i was told, stop being over protective, it's normal. He would get a raging fever, listless, and slept for almost a week. He would not eat, and he even refused flat lemonade. He recovered from each of those. He never did from his MMR.

He stopped. No more talking, singing, dancing. Thge doctors told me i was a bad mother and placing too much pressure on him. They treated me with incredible disrespect, and i gave up because i had no support from my family, nor my then husband. At just over 2, when my youngest child, who is 44 weeks younger than Connor (and did not react to her needles at all) started talking more than he, and doing things that he couldn't, i really became concerned. I was told yet again i was a bad mother for drawing comparisons between my children. I grew up like that, i don't do that, but i was given hostility from every direction. So, i made a deal with Connor's biological father, I would wait until he was 3 and if there was no improvement, i was getting his hearing tested to rule out hearing issues after the immunisation reactions. His birthday came and i made his appointment.

The doctor i saw was very concerned. I didn't know at the time, but he had an autistic daughter, and he knew what i was up against. He never voiced anything since i had no support. Yes i was married, but my then husband was not a resident of Australia. He was supposedly working towards migrating here to be with us. I went to the hearing test. They could not complete it. He had a vocab at 3 years and 3 months of 30 words if i was being generous. A "normal" child has a vocab of between 500 - 1000 words and can follow simple instructions. Connor couldn't. He didn't like the headphones being on him and he became quite distressed when they made the noises through them. They referred me onto the speech therapists.

Three months later i was sitting in a medical suite with Connor not paying attention to the book in front of him. If there was a train or an animal, he responded. When she turned the page he would get distressed and try turn it back or over again. He was more concerned about lining up the blocks in colour order and in size. After about 45 mins of patiently encouraging him to be co-operative she let him go and play with the blocks. My husband happened to be in Aust at that time, and he just sat here. The therapist looked at us and saw his listless face, and looked at me and said i don't think i have to tell you... and i looked and said "He has autism doesn't he?" and she nodded. I had no idea what i was dealing with or whay i was up against. I knew no one who had it and i was devestated i didn't push to get him looked at sooner. I was angry, but i soldiered on. I looked at my father, and my husband and said to them both, never ever tell me i am wrong again when it comes to MY CHILDREN! I TOLD YOU SO! It was a very hollow victory for me.

By the time his initial paediatrician's appointment came around, i was feeling okay. Still no clue about this thing i was having to deal with alone, but still staying positive there was a chance of misdiagnosis. His final diagnosis was mild ASD, mild global developmental delay and severe language delay. They gave me a sheet of paper as long as my arm almost and we divided up between my specialist, and myself what we would organise for Connor. I was totally overwhelmed and distraught, but kept the stiff upper lip. I had started Connor taking a specialised flower essence remedy which had been specifically made for him and the emotional/spiritual circumstances surrounding him. Myself and my children all have allergies to medicines; they make us sicker than the illness we are fighting in the first place, so i have to look else where. I had started learning about crystals again (i had a passion for them when i was younger) and started using them to help Connor and the rest of the family to assist with various issues. I had been seeing a kinesiologist for about 15 years at that stage on and off, so was quite relaxed about bach flowers remedies and vibrational medicine. I had learned the importance of colour and food additives as well.

My kids were lactose intolerant and gluten intolerant as well anyway, so there was no need to look into the diet issue. I was never pedantic about it but i monitored him for signs of discomfort and reactions to food. It helps when i am a spiritual healer and empathic as well - my instincts serve me well. I am a medium, a professional one. No i don't dress like a gypsy and sit behind a crystal ball! LOL I am also studying shamanism, and i am determined to find a totally natural way to deal with autism with minimal stress to child and family...

Flower essences helped Connor alot. We targeted his isolation issues, seperation issues and encouraged him to vocalise through his drops. I used bright colours, particularly yellow to help with communication. It was tricky for me as my oldest son has dietary sensitivities and reacts to the colours red and yellow, so he wasn't much fun to be around - the price i paid for having more than one child i guess! LOL He had a piece of phrenite beside him when he went to bed, as well as amethyst, rose quartz, carnelian and lepidolite. Connor loves my crystals.

He was also a terrible sleeper! I was desperate one night, and he wouldn't go to sleep and it was 1.30am, so i put a meditation disc on - whale sounds. He was asleep within five minutes. The next night and 8pm rolled around, so i put him to bed, and put on the whales. Again within five minutes! Anything with water in it, he sleeps to. He also likes the sound of crickets. No drugs necessary.

I was awarded a spot with a specialist autism playgroup within my area. It was wonderful because he could play with children with varying issues, and the mums got to sit and talk to a social worker for two hours a week. I learned a lot about ASD in there, however i also learned how little people knew, and were even less willing to try something new or different. In a group of six of us, two of us were willing to try anything, the others were very close minded and defeatest. I was the only "single parent" there. I was ridiculed for my alternative approach, but at that stage, i didn't care. I had had my own health issues (i was a cancer survivor at this stage - i had been diagnosed with cervical cancer at 36, and when i had my partial hysterectomy, i "died" when i was given my anaesthesia and managed to be recussitated) and i knew what worked for myself, and my children, and they could look at me funny and mock me all they liked - i did not care! My passion towards what i knew, and what i had lived inspired the social workers to look into alternative choices as well.

We had started to be introduced to the PECS system, and at the same time, someone mentioned Makaton. It a Universal signing language where you speak with your hands and say the words. You must use both for it to be successful. I wanted to know more and i was again ridiculed for giving my son a "soft option". My theory, if he didn't talk there wasn't much difference really, and at least he could sign to me and we could communicate. Simple. I attended a course and was the only parent in a room filled with health professionals and teachers. They all looked at me and said why? I said same as you - i need to be able to communicate with me son! I learned 80 words that day and a song. Within two hours of being home my son could sign 20 words and sing the song with prompting. His language doubled in a week. It was amazing. You can imagine the reaction i got from some of the other parents. But a couple were willing to consider it after watching Connor become happier, more social and more vocal.

We also utilised the Building Blocks home programme run by ASPECT and they were also brilliant in their support of Connor, and the whole family. There was also physiotherapy, speech therapy and one or two occupational therapy sessions. Yep, all on my own and my other children were very neglected, but they understood, even if they didn't like it. That's when we learned it is quality time, not quantity that is important. We also learned the importance of rythmn for a child with autism. When we had a block of speech for Connor, and she was introducing us to sentence structures using PECS, she forgot to give us a story board when we left. But i had noticed she had been tapping the desk. So that's what i started to do. I would tap on the desk with every word i said. "I *tap* want *tap* a *tap* drink*tap*" and he would mirror the sentence and the tapping. Amazing! I used the fact he was echolalic to my advantage! We need to be creative with our kids, they love sound and movement.

Things were not all skittles and sunshine. I had one major support group who continually let me down - the Department of Education, and the Early Intervention programme Connor was in. Connor didn't like the staff, he didn't like their routine and he was very bored. The school forgot the fact that he was in fact my fourth child, and not my first like most of the rest of the children. They tried to feed me the same garbage i had been fed with my daughter started school. They did not like me pointing out discrepencies between Dept of Ed guidelines and what they did. They got their own back though.

When you recieve your official diagnosis from your specialist, PLEASE make sure they do not write the sentence (using my son as the example) "Connor displays features of Autism Spectrum Disorder." For the Department of Education here in New South Wales they translate that to mean he does not have autism! My specialist had seen and written the exact sentence on 2, 500 other childrens diagnosis reviews, yet my son was the first to be picked up on it. Co-incidence, no, i don't believe in them to be honest!

When i said i was receiving all these other services for Autism and how could he is he didn't have it since she placed me, including at the EI facility this discussion was taking place, they shrugged and said you slipped through the system? I said i doubted it, and if that was the only issue, i saw the doctor the next week, i would just get her to correct that sentence. Seemed logical yes? I then was confronted by this panel of 8 women who laughed at me and berated me with wanting to get a false diagnosis on my son just to get specialised services. That i was a bad person for wanting my son to have a diagnosis that he obviously did not deserve. Excuse me? I was livid. My response - you have got to be joking that i for one second would entertain the notion Connor deserves to be autistic! How dare you sit there and judge me when it is obcious you all do not have a clue what the heck you are talking about, especially since most of you have never ever met my son. I was waved away with a sorry, he will go to mainstream where he belongs, good day. I left distraught and his teacher chased me out the room, stopped me and i thought she was going to apologise for the way i was treated. WRONG! connor has been moody and withdrawn lately, what is happening at home to upset him so much?? WHOA! She copped it both barrels. "How dare you! You assume that his poor behaviour is a direct result of his home enviroment - did you for one second consider he hates coming here and dislikes the staff? No, it's always the parents fault, never yours!" She then said i know you are upset and you have a right to be, all autistic children... and i cut her off "You know he is autistic, yet you sat there and said nothing to support my son! I think i stand by what i said just a second ago - the only reason he comes to EI is because he gets a car ride here and a car ride home, and he gets to play with his friend. Do not think he comes here because he enjoys the environment here!" and i walked off...

The next day i received a phone call from the school counsellor, with a "solution" to my dilemma. There was a school not far from me that might suit Connor's needs. My problem, it was the school i had originally said i wanted him to go to but they would not appraoch there because they would need to fill out one extra form - quote unquote! Now they were going to offer it to me again, but it came at a cost of sorts. The only way he could be accepted to the Language Support Class is if he had a mental impairment. He needed an IQ test. I agreed, i knew the class was exactly what he needed, so dang if you do, dang if you don't. His results were exactly the same as my daughter's 15 years earlier. We applied, he got placement. At least the Dept of Ed got something right!

He has been in this support class for 18mths now with two wonderful teachers. We've still had issues of course, but the teachers and i work together well - its the office staff who are the issue, the paper shufflers! They STILL claim he does not have autism, even though they were handed a copy of the later report stating clearly he has ASD - told me they don't have it - WRONG! I supplied it to the EI when he got it, to the school when he started because they didn't have it in his file, and then at his review a year ago they again said they didn't have it on file so i gave them another copy and watched them file it! The problem is when you upset a government department, you will have to live with that for the rest of your life! LOL

Connor is now seven. He will be having his bi-annual check up in a couple of months. He still uses English as his second language at times! He still walks on his toes, not as much as he used to though. He still flaps his hands and make strange noises, especially when excited or distressed. He is very black and white, and tact isn't his strong point. He can skip - he learned that this year and he can jump over things that are 10cms tall with both feet together. He hates to write, but loves his maths and computers. He needs his routine, and he loves his DS. He has a wicked sense of humour, impeccable timing, and everyone who meets him loves his cheeky nature. I divorced his father this year; i finally realised we were just options in his life and we deserved better, my kids deserve better!

Our journey is still unfolding, we have a long way to go. My next goal is to get him to tie shoelaces. I have a few other alternative ideas that i will be trying soon with the school. I'll let you know how that unfolds.