It's five days to Christmas. I would like to share what Christmas means to me as mum to a fifteen year old autistic boy. I never know quite how to put it since to us Autism is not necessarily something anyone in my family lives with, it’s not an affliction. It’s not something Eric has or suffers from. It's just there, the uninvited guest. It doesn’t define Eric. He is just himself, he loves computers and football, Simpsons and the cinema, he loves to sing, write scripts and stories, goes to concerts and thinks girls have cooties. He also ‘flaps’ his hands, makes little eye contact, is terrified of babies, can tell you what you had for breakfast in February 2007 and needs routine. We don’t know him any other way, if that makes sense to anyone.
Eric was born, August 6th after a traumatic pregnancy and labor, he developed as he should have in the early months and we celebrated his first Christmas having no idea of what was to come. His second Christmas, Santa brought him one of those chair things the child sits into and pushes along. He was a happy, contented child and loved the lights, music and excitement of all the people around. By the next Christmas things had changed. I brought Eric to see Santa and he screamed non-stop staring up at the colored lights. He got a little car to sit in which he constantly rammed into the sitting room wall where he would sit laughing.
Around this time my mum and I stopped talking. My mum knew something wasn’t right but I refused to accept it. I knew about Autism. While in school a teacher had read us the book, For the love of Anne by James Copland before we did a project on Autism. I didn’t want that for my child and I didn’t want it for myself. I was terrified of the rejection that would come from the world for both of us because we weren’t the perfect image of mother and child. I felt we were both broken and asked why so many times I lost count. My friends didn’t understand. When I cried about the world being cruel, I saw the bigger picture that others didn’t, that accepting this meant both our live would change forever. Eventually even why didn’t matter.
Finally my father intervened. He put my mother and me in a room and told us not to come out until we had sorted ourselves out. We did and then the really hard work started. I began the long process of accepting the child I thought I had didn’t exist and getting to know the child I did have. There was round after round of tests, reports, assessments, doctors, interviews…. It went on and on. During this time he fell off the couch, he never cried, he simply went back to playing with his cars. He didn't like to be touched and gave hugs only at his discretion. When my brother came to visit two days later and picked Eric up to hug him, he cried out. His collarbone was broken and we realized Eric doesn't feel pain like other children. Something that hasn't changed. For Eric the epitome of joy was spinning. Anything that was round and moved. He would press his head to the washing machine door and obsessively collect cars. He would line them up in order on the window sill by color, make and model. So for Christmas three Santa got a letter instead of a visit and left a garage and cars. For Christmas four cars and a v-tech computer. Eric could spell, read and knew his alphabet.
The following summer my mum came to the hospital with me where we were told what we already knew, that Eric had an unofficial diagnosis of Autism. It was the first time anyone used the word. My mum passed away two weeks later due to a previous heart condition and by the next Christmas Eric had been expelled from pre-school and received a big boy garage.
The battle continued for an education, for services… for acknowledgment. I reduced my working hours and my father took semi-retirement because it was impossible to get Eric placed anywhere. We traveled abroad, took Eric out socially, forced him into distressing situations in an attempt to desensitize him. He likes to eat out but has to know the source of food. He will eat anything once the ingredients are Irish or British. The next Christmas brought him another v-tech computer, a PC one this time and a place in the school that would come to be our lifeline.
Over the following year the cinema was tackled, involving ringing ahead, bringing Eric – with my brother because he was too big for me to carry – to an empty cinema foyer and carrying him in screaming. Going home. Repeat as far as concession stand. Going home. As far as screening room door. Going home. Repeat, repeat, repeat until Eric sat through an entire movie in time for Christmas. Eric stopped coming down to open presents with family that year. Too many people, even family meant it was too distressing. It was the same with dinner.
It has remained fairly much the same for Christmas ever since with a variation of computers and games from Santa. Eric has come on leaps and bounds in other areas thanks mainly to the dedication of his many carers and teachers. He even competed in this year’s Special Olympics Ireland games, but he is still very much special needs.
We stay in Dublin so he can finish his schooling, although my partner lives and works in Fermanagh. Christmas is still too distressing for Eric to fully enjoy. He’s terrified of Santa. We have established our own routine. He comes into the city with me on Christmas eve, he can handle a visit to the office, the bookshop and starbucks. Then it’s home. Christmas morning I wake him but he won’t get up for presents. Two days ago I found gifts still wrapped and hidden in the wardrobe from last year. He may or may not visit my brother’s house next door, it depends on who is there. He will stay in his room for the rest of the day regardless of any amount of prompting. Boxing day, he and I watch movies and the next day we go to Fermanagh to have New year with my partner. I get to catch up on sleep. He and Eric will have boys day at some point.
Last night I finally managed to get him to name me two computer games that he wants and today he said he will eat a roast dinner this year, although in his room and not the same one as the rest of us. So it will have to be cooked separately. I consider this progress. It’s only taken 15 years but it’s a big deal and it’s enough to finally make me look forward to the day at last.
Merry Christmas to you and yours,