Ever get that feeling that parents, teachers, friends and family stop breathing in the hope that you change the subject when you mention the word Autism? The quick glances at each other as if to say ‘oh no, did she just drop the A bomb again?’
All of my children are facing various challenges in their lives right now. One is weeks away from becoming a father, one hating being at high school, another just entering the world of primary school (and realising she was much happier being a baby at home) and then there is my younger son who is anxious and frustrated daily with life at school.
I haven’t seen my eldest son a great deal since he moved out. Mainly because I want him to feel independent and not have to worry about me calling around too often. The other children are all still at home with me and have different challenges each day.
I feel like I’ve been fighting the education and health systems for centuries. It is in fact 15 years since I first started seeking guidance and reassurance that my eldest had certain sensitivities. 15 years! No wonder I feel so tired.
Back then, I didn’t know much about Autism and when CAMHS originally suggested he was on the spectrum, I didn’t know about masking and that autism isn’t just about poor eye contact. Because of this lack of information I took what the schools suggested as being the right way to do things as they were the professionals. I had no idea that these weren’t always the best strategies to use.
Over the years, my younger son started showing many autistic traits and during his reception year I was approached about the difficulties he was having accessing the curriculum in various ways. It was only when we started to look into the possibility of autism more that we suddenly saw the teaching staff take a whole u-turn and say they don’t want him being looked at for anything. Again, they were the professionals so I rolled with what they were saying. That is, until I started my primary teaching degree.
A whole new world of information was opened up to me. What support should be offered, the rights of all children to be able to access an equal education and more specifically, first hand experience of teaching many children with different difficulties. This is when the big fights started.
You see, I’d started to understand both sides of the fence and could see what it was like for a teacher as well as a parent. It lit a fire deep within and I knew I had to start fighting more for my children to be understood and supported. My younger son was finally diagnosed with High Functioning ASD 3 years later (and having moved to a new school).
I was very naive and assumed that he would be able to access support straight away and his quality of life would improve with less meltdowns after school. I was so wrong. Over the following two years the SENCO and head teacher told us that he didn’t look autistic, he doesn’t present any autistic traits at school, his eye contact is fine, he can shelve his problems easily…the list was endless. It was as if they didn’t believe us.
I felt like I had a big sign on my head ‘Warning! Beware the Autism lady!’ It was the same at work too, as a teacher in a school that has fantastic SEND provision, I was becoming more and more interested in the right way for support to be executed and documented as well. I’ve since left the teaching profession, initially through ill health but I didn’t return because I saw how much all of the children were being effected with the after school meltdowns and explosions.
I knew my son needed more support at school. Although he may have been masking his anxieties and frustrations during the school day by putting in his own coping strategies, it was having a very negative impact on his home life and the rest of the family too.
I attended meetings and sent many emails only to be answered with the usual ‘he’s the same as any other child’ type comments. The one comment that I found the hardest to cope with was when the SENCO said she had taught a child with autism and my son’s needs were nowhere near what this other child had. I wasn’t strong enough at the time to say if you’ve taught one child with autism, you’ve taught one child with autism. I was still learning myself.
My son spent 18 months at school after his diagnosis. He wasn’t classed as being a SEN child because, as the SENCO told us, ‘his special needs are only evident at home.’ This would baffle us all. Was my son choosing to be autistic at home and not at school? In our eyes, he had a formal diagnosis and we felt the school needed to recognise this.
It was only when he entered year 4 that his needs were finally taken into consideration. His anxieties had grown worse the week before school. Sleepless nights, heavy soiling in his pants, constant repeating of questions about his new teacher and classroom. He had one afternoon transition during the summer term and even though we had asked for a ‘my new class’ booklet, he had nothing other than what his father and I could tell him about his teacher. The children started back on the Thursday. He was fine, came home and was asleep by 4pm. Fantastic. Friday morning came and he dug his heals in a bit before going into school, but he was there. Super. Friday night he came home, exploding through the front door, crying, screaming, rolling on the floor and head banging. It was a long and tiring meltdown that went on for some hours. Sadly, it ended by my son trying to hang himself. He had been calm for some time and I left the room to turn the oven on for tea. What I returned to see is something no mother should ever have to see.
Once settled at hospital, the doctors managed to find out that at the end of the day during assembly, it was announced that there would be a rota for lunchtime football. The sudden change to his daily routine of always playing football at lunch had sent him over the edge.
The school reluctantly opened a CAF after I had enquirer with children’s services for some support. This was the first time that his needs were acknowledged. I thought this would be a turning point. I was so wrong.
For the remainder of the year I truly became ‘that’ parent. The one discussed in the staff room, the one the teachers would desperately try not to make eye contact with at the classroom door, the one that couldn’t have a conversation without dropping the A bomb.
I was only trying to pass on some of the vast knowledge and strategies that I had picked up through my own research and teaching practice. I wanted to help them to understand that because he enjoys football doesn’t mean he was misdiagnosed. I would cry inside at CAF meetings when they talked about how he was started to outgrow his autism. How they had cured this trait and got him to ignore certain anxieties. The hardest part of all was seeing him become the shell of the child he used to be. He desperately wanted others to understand him.
He became isolated within the class as rumours spread amongst the parents that he was naughty and a danger to their children. I tried to get the word around as much as I could that he was merely finding social situations difficult to manage. I was dropping the A bomb left right and centre. At one point I nearly shoved it down one of the parents throats. They never listened though. I just became ‘that parent.’ You know, the one stood alone on the playground, the one people quickly turn away from when you try to make small talk with them. The one with the sign on her head now saying ‘Beware, this bitch bites! Ps my son is autistic not naughty!’
We are now into year 5 and although some support is improving, I still don’t feel like I can approach the SENCO or class teacher. They make me feel like I need to brush up on my parenting skills. Believe me, if the authorities have said jump, I’ve asked how high and gone higher. I’ve sat through the hell of the Webster Stratton parenting course along with others too. My child is not naughty, he’s frustrated and anxious with the world around him.
I phoned the local autism team recently for advice, I felt embarrassed when the lady said oh hello, yes I’ve heard about you. She probably meant she knows my name but in my head, that large sign on my head now had large flashing neons stuck around it.
The Reception teacher and TA came to do a home visit for my younger daughter. They asked many questions and were quite jovial until the question about having any concerns for your child was asked. She was nervous, as if she had been prepped to avoid the A word altogether. Maybe my neons were now flashing different colours and the sign was fitted with a loud hailer repeating ‘autism alert.’ I glanced at my husband, we both knew what we wanted to say but neither of us dared.
Eventually, I described our concerns for her speech and language. She hadn’t started talking until late and although her Vocab is amazing we couldn’t tell what she was saying a lot of the times. We discussed her food sensitivities, her hypersensitivity to sound and most of all how certain smells sends her into almighty rages. Eventually I did it; I dropped the A bomb!
As I suggested that in the near future I would be seeking an autism assessment for her, the teacher shot a look of ‘oh no she didn’t’ to the TA. There was a moment of silence before she assured us that they would pick these things up and that she’s probably just imitating my son as a way of getting attention.
I had a similar meeting with my older daughter’s new school. She was moving to high school and I had already started the ball rolling on getting her assessed. This is a story for another day though. Even from the high school, we were told about what autism is, how she is fantastic at school, always smiling and making a lot of friends. They believed she was manipulating the situation to be lazy. This was insinuated on a number of occasions.
I didn’t want to become ‘that parent’ at this new school. I wanted a fresh start too. But as my daughters anxieties grew so did the number of times I dropped the A bomb. Eventually something quite serious happened regarding my daughter and her new school. Something I will write about another time. Since this incident she has been diagnosed with severe anxiety and I’m lucky if I can get her to put her uniform on in a morning.
Seeing my daughter fall to pieces before my eyes has given me that strength back to fight. I want my children to have an education. I want them to be able to feel relaxed and happy whilst at school. Most of all, I am no longer afraid to drop any A bombs. In fact, my A bombs will be more frequent and I won’t be embarrassed to do so.
My apologies for such a long post. I do have some wonderful family and friends who are not afraid of my A bombs and who welcome finding out more. Sadly, I have lost some good friends along the way. Those who stick by me through the bad times as well as the fun times are those who matter.