Becoming an Autism Parent

Our thanks to mum of four, Hannah Edwards, for telling us her story as part of our focus on Special Education Needs this May.

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My journey with autism started about 2 years ago. Before that, I had heard of autism but presumed it was only very disabled people who had it, people who were wheelchair bound and required round the clock care, people who couldn’t communicate. I was extremely wrong, and very ignorant.

I have four beautiful children, two boys and two girls, aged 11, 9, 5 and 3. I consider myself to be incredibly blessed with my lot. My eldest children all have autism and in the past two years we’ve been on a very difficult journey of diagnosis and understanding.

When I became a mum I did not think I would struggle with being able to look after a child, after all I had had plenty of younger siblings, and nieces too. I could change a nappy and amuse a child, it was easy. However, as my eldest son got older and hit preschool age, and we had trouble with his toileting and meltdowns (I called them paddies back then) I questioned how good a parent I actually was. When my eldest son was age 5, we moved to a new area. He didn’t settle well into the school routine at all. Every morning he would scream and refuse to get ready, it was such a battle. We had to commute twenty minutes each day, which meant that we were always rushing so that we weren’t stuck in the traffic. I left him at a school with seventeen different languages, in a huge reception unit full of children, in a new city, with no one he knew. Every single day he soiled himself and I would be so angry with him for doing it over and over again. I thought he was being lazy and disgusting. At the time I believed his behaviour was bad because he was objecting to the move, but nothing improved. We were able to change schools within six months of being there to one round the corner and he was a different child within a week. The soiling stopped straight away and he enjoyed going to school. We thought our troubles were over.

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Eighteen months on we moved to another new town (my husband is a Methodist minister so we move around every five years or so) and a brand new school. My second son started school here as well, and everyone was much happier. Until a year later, the soiling started again and his behaviour got very extreme over things like having the wrong colour cup. He was eight, and I suddenly realised that his younger siblings didn’t react like that when they got a different cup to what they were expecting. I felt able to ask school if anything was going on because I presumed he must be being bullied or something, but they were really really surprised at his behaviour because he was no trouble in school.

A year previous to that initial conversation with teachers, his previous teacher mentioned his love for routine in class and his obsession with time on a day he had a violin lesson, and she said maybe he has Asperger’s. This wasn’t something I had heard of before and I didn’t really know what she was suggesting. It wasn’t until a year on that we remembered the name Asperger’s, and I began to do my research. The teachers and SENco helped me to gather information and we went to the GP as soon as we could. It felt such a blur. At the doctors, my son sat slouched in his chair and refused to look at her or answer her questions. He had a meltdown when I tried to touch him to get him to sit up and listen. She had seen enough and referred us to a paediatrician. It took six months until we saw a specialist in social communication disorders. He asked me lots of history, and my son sat there drawing a chequerboard pattern even though he was asked to draw his family. I realised that day that he had never once drawn a picture of his family. At the end of the appointment the doctor told me to look up autism and gave me a book list. I was dumbfounded and I cried. I said “so it’s not because I’m a rubbish mum then?” and he absolutely assured me that this was not because of any parenting good or bad and it was not my fault at all. It broke me hearing that my son had this disorder.

To get a diagnosis here in Wiltshire, there is quite a process. Firstly, a GP must refer to a paediatrician with the support of school teachers and SENco. Then a paediatrician carries out an initial consultation and refers to the speech and language team who come into school and observe your child all morning and do a special test with them, which gives them a score. Then without my son present we did a 3Di test which is a special laptop test a speech therapist does (created by Great Ormond street experts) which determines which kind of autism your child has based on how their behaviour presents. Our sons came out as Asperger’s syndrome, a high functioning form of autism.

In the time after the diagnosis, my husband and I felt relief that we weren’t failing at all aspects of parenting, but we also felt grief because our son was disabled now. The word ‘disabled’ is such a massive word to get your head round. Over the past two years he has had extra help in school and the staff know what he needs so he has a very positive school life. My husband and I have been on a course to learn about autism and how to tackle it which has helped us in our marriage and in our parenting as a whole. There are loads of things that we face each day with him that sometimes we fail at, for example, just this morning I asked my daughter to sit in his chair for breakfast because I had ironing on her chair but he completely fell apart at that one change and it took him about an hour to get over it. If I am organised I can pre-empt things like that, and we can avoid them. In our house we have rules for everything, and we have social stories up on the walls, lists and rotas. Our son doesn’t understand his feelings and emotions at any deep level and finds it hard to read body language, so we have been teaching him using various picture cards of faces, and trying to expand his vocabulary around different emotions. He starts secondary school soon, and I think he is ready to go and manage ok there, but I do think we have many challenges up ahead as he makes all the changes he will need to make.

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That diagnosis journey over, about a year ago when my third child was in reception, we noticed that she wasn’t coping at home. We felt as if when we spoke to her she didn’t fully comprehend what was being said. I felt as I had done when my eldest son had started school and I was battling to get him to school. I recognised that feeling of pure frustration because they just have no remorse when they are hurtful. My son once broke something special to me, and he made me so upset yet had no idea what it felt like to be in my shoes. I recognised this same feeling when my daughter did a similar thing and I told school at once. They thought she was getting on just fine in school and she was still so little, but over time things got worse and worse at home because of what was happening in school. I didn’t hesitate, and I took her to the doctors for that initial referral. She had no awareness of why she was there at all and spent her time climbing on the chairs and bed, and licking the walls. The doctor didn’t need telling twice, and she was soon seen by a paediatrician. He noticed straight away that she had autism too, but to be sure she had to have the speech and language therapist session in school too. She confirmed it as well and so next week we go back to the paediatrician to see if she needs any further tests before officially diagnosing it. She is far louder than my son in public. She isn’t anywhere near as understanding of her feelings as her big brother, so every emotion is highly charged. If she is worried, her feelings are off the scale and we have to try and calm her down from anxiety attacks. If she gets cross about something seeminly small, her anger is so extreme that she has to be held and told what has just happened to her and what she is feeling. She needs lots of things explaining to her still. Their autism is very similar, so I already have some tricks up my sleeves, which helps massively.

Meanwhile, my second son T had been having some trouble sleeping, and one night, age 8, he told us that he hated school so much that he would rather die. We felt that this was very extreme. He always struggled returning to school after holidays, but didn’t we all?! I spoke to the SENco about it because it did feel like his mental health was being affected by school and neither his teacher nor us could work out what was going on. The SENco took me aside and said that she thought that he too had autism. I went away from that meeting feeling like the world had gone mad! She was saying that my son T – who has never ever been any trouble, who had never screamed because of the colour of a cup, who had never laid of the floor sobbing because I announce that we are going out to the fun splash pool instead of going to the supermarket – had autism too. He has always been shy, but well behaved and thoughtful of other people’s feelings. She mentioned atypical autism, which I had never heard of. We sat down and made a list of the things he has always struggled with and found that there were quite a few autistic traits there, and he certainly wasn’t managing in school even though, again, the teachers didn’t see anything like that as yet again he’s the model student. Our weekends were becoming hellish because of his anxiety about returning to school on Monday. So somehow I found myself sat in the same doctors surgery whilst he referred my second child to the specialists. Last week he saw the speech and language therapist who found that he probably did have autism because he was so literal with her, he enjoys adult company and has massive anxieties. She had a whole list of observations that we haven’t seen at home, but she knows what to look for. Next week he sees the paediatrician who if he agrees with the speech therapist, he will be diagnosed as well. We are due to move areas again this summer, and so the health professionals together with the teachers, have fast tracked our appointments so that when we move, the new schools will be able to work with a diagnosis.

Hannah

The biggest thing about becoming an autism parent has been how varied the challenges are with each child. At school the children are model students, they are way above average for reading and maths, and yet struggle so much socially. Each of them brings us such joy through their wonderful sense of humour and brilliant creativity. They have special interests, which over the years has meant that we have all become experts in Bob the Builder, Noddy, coaches, Minecraft, Lego and microphones! It has been quite difficult at times to find support though, once diagnosed you have to do your own homework and although the council offers a course to go on, their waiting list was so long we had a years wait. Other support comes from mums at school who are going through the same stuff as us. Being an autism family is our normal. We don’t know any different. We have been kinder to ourselves, we have given up trying to make our children join in things they don’t want to join in, and we have committed ourselves to teaching them to be wonderful grown-ups. We have no doubt that their special skills and great intelligence and academia will help them go really far in life. Autism won’t set them back, and as parents, we will help them to live happy and fulfilling lives. The diagnosis is not the be all and end all; it is just the beginning of being something really amazing.

 

Hannah Edwards

2018

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