autism awareness week

 

AUTISM AWARENESS WEEK

Mary’s Story

 

Autism Awareness Week -Mary's story

For this week to help raise autism awareness I will be posting a blog everyday to share some remarkable ladies and their journey through life as a mum, teacher or sibling of a child with Autism.  I will be sharing their challenges, the highs and the lows and I will now introduce you to Mary and here is her story ……

My son was born in hospital on 30/7/91 a healthy weight think was 6lb 10oz. Was really delighted. Was asked if I was breast feeding or bottle. I didn’t know so said I’d see when he was born. Must of had two much air as next think I remember is my partner feeding him. I then felt there was no choice as how could I take that away from my partner. He was taken to the nursery over night and had just woken up when a nurse brought him to me saying can’t you hear him crying. He never stopped crying for years. I called the Dr after there days just to be told I’m over reacting and being two fussy. No midwife or health visitor at all. My neighbour who had a son at same time spoke to me over the gate and suggest changing his milk. What a relief he stopped being sick and even slept. Has he got older my mother kept saying he wasn’t doing what he should be. I tried to get him into the local nursery but they only took referred children. Dispite him being behind and both of us working they couldn’t help me.

At age three and my son known in the area as a cry baby i got him into a school nursery who found that he wouldn’t mix with the other children and they had to buy him jigsaws way above his age. At this time he had a growth round his voice box that needed a operation. Still no help for us so we kept going ajusting our life round his. My mother looked after him whilst I worked full time. We had set routines and routes. On a morning I went through what was happening through the day and didn’t change it as he cried for hours if we did. He also struggled with his speech so pointing became normal. The nursery picked up on him having difficulties and did a referral to a child development unit. They decided he was a bit behind and wanted him to have a statement for school. At this time the school attached to the nursery refused him a place as we were not Catholic. He had to transfer to the local nursery for the last term so could then transfer to the school. The nursery refused to apply for a statement saying there was nothing wrong with him. Didn’t know I should still have a health visitor as never had one. The nursery would ring me and say we have the photographer in and he won’t leave the nursery for his picture but there’s nothing wrong with him. Photo taken in nursery with their camara. This was the same story all the way through primary school. Fortunately I worked in the building next to school so could nip out. If schedule changed like after school activity was cancelled he refused to leave school because it hadn’t happened but there was nothing wrong with him. I was a fussy mother. He was being bullied a lot and the only time they did anything to help was when his lunch was being taken off him. Things got worse when he started high school.

Autism Awareness Week - Mary's Story

Just before starting high school a local factory paid for some activities for local kids during holidays. I managed to get him on some. I left him crying ever morning. Fortunately he attached himself to one of the leaders. They got him a education assessment not long after he started. Was told it’s now to late for a statement but they put him in the support group. He was diagnosed with non- Pacific Autism. Only happening at home. School said he had no problems. Yet again I’m a fussy mother. My thanks will always go to the two school support teacher’s who really helped him. At this time I was really poorly fighting debilitating pain, operations and work so being told all his life I’m a fussy mother I gave up. Dispite not doing all the lessons due to being on a work placement for a year he passed all the exams they put him in for. He was bullied right through school and wouldn’t leave the house on his own as even the kids in the street bullied him gradually moving onto bullying all of us. We would come home from work to obscene spray paint over house, flowers pulled out, eggs flour and milk over windows through letterbox ect. Had to keep curtains drawn at all times. We sold up and moved. That was a turning point. My work understood my son so didn’t mind how often he rung me. I travel trained him to use public transport. Still a fussy mother with a son that might get a job wiping tables at Mc Donalds if I was lucky. The chef’s at the centre he did his year placement wanted him to go to college to be a chef but wouldn’t tell him what kitchens were like. He did a year with support then couldn’t get any further.

I sat him down and said you can either have autism and get nowhere or pretend you’ve nothing wrong. He now had a apprenticeship, is a outdoor activities trainer, scout leader, had a partner. He still needs support especially when things change. Has difficulties seeing different points of views. Everything is timed and there is no such thing as will be late. I really wish I’d known he could have a health visitor for years and not just first few months as I’d have tried harder to get one. I’m also glad to read that Autism is now considered and your not just called a fussy mother. My son had recently told me how bad the bullying was and it broke my heart. I once got the police informed they got support and counselling my son wanted to die. I know he will always need support which he’ll get of us but I know being a fussy mother stopped him being wrapped in cotton wool. He is very intelligent and I wonder what would have happened with a proper diagnosis at the missed opportunities. Fortunately we had a lot of support from friends and family. I’d like to think things we fell through the cracks and things have changed.

He used to spend hours in front of the washing machine. Would build the same things over and over that spun round. He used to take everything off his bed and make it up on the floor placing items right round him in the same place every night. He wouldn’t go to parties or join in any games. If family came with their children he used to issue them with a toy then went back to what he was doing. He was diagnosed with motor dispracia so had to go on physio course. Instead of listening to what he was saying she called social services so he waited for them to take him away. Couldn’t get hold of anyone for weeks as they didn’t think needed action. It badly affected his relationship with his dad. Even today it still hangs in the air. After that I couldn’t get him to go anywhere else. He watched a news programme about children being taken into care.

Written for Autism Awareness Week – I would like to thank the inspirational and amazing women that have shared their stories with me. Click here for The National Autistic Society and also here for the charity Parents In Need.

Here are the other stories from this week:

Chrissie’s Story

Kelly’s Story

Helen’s Story

Rebekah’s Story

Tara’s Story

Carla’s Story

#autismawarenessweek

#autism

#autismsisters

autism awareness week

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