Our Autism Journey

by Louise Lacy 2 years ago in children

Autism

Our Autism Journey

I knew instantly that I was expecting my second baby owing to the fact my sense of smell was heightened beyond belief! I was convinced, just like with my first pregnancy that people were not using potpourri but savoury rice to fragrance their homes!

Then began the morning sickness, why is it described as a morning problem when it persists all day long? There were also minor hiccups along the way in this pregnancy such as some bleeding at week 9 and a low lying placenta that I googled and freaked out about! Apparently you can bleed to death!

So a lesson learned about not googling symptoms and ailments! Thankfully the low lying placenta moved aside in time so I could give birth naturally. Caitlin was born on the 15th February 2005 after a two-hour labour, all rosy and resembling a pig.

Caitlin was a placid child; I was pleased more than anything as my first daughter was a livewire and kept me busy every day. Caitlin didn’t walk unaided until she was 22 months old; nobody was concerned. I assumed that she was a little behind children her age although not overly so.

Concerns about Caitlin were only raised when she went to school nursery aged 3 and a half. She was not mixing well with her peers; she appeared to be scared of noises and anyone touching her. At home, she was calm, happy and engaged well with her sister and other children within my family and circle of friends.

Caitlin was referred to a paediatrician where she would be assessed in school. When her assessment day arrived, I went alone believing that it would just be myself and the doctor. To my shock, I was greeted by seven health professionals who were assessing Caitlin all at the same time. When they were done observing her, I was required to wait outside while they discussed my child. I felt like I was on trial, but I understood it was something that had to be done.

After what seemed like forever, I was ushered into a windowless room and told that Caitlin had autism. I had heard of autism before but didn’t know a lot about it. If I am honest, I felt relieved that there was now a reason for her difficulties at school.

The most challenging element for me was informing my relatives who had no concept of what autism was. Older relatives who were well-meaning informed me that Caitlin would ‘grow out of it’. I appreciate that they meant well and that they were only trying to be supportive but that was of no help to Caitlin or myself.

There was also no support at all for myself as a parent with a now disabled child. I could have enrolled to learn all about autism but the dilemma I had was Caitlin was not receiving any help in her mainstream school. They refused to help her at lunchtime so I had to drive five miles eight times a day to take and collect her from school. I’m not sure how I managed to do it but I did with the belief that she would eventually receive support in the form of a one-to-one support worker.

What support I did discover I obtained myself and that was when I joined Twitter, talking to parents and people who have autism has been a significant source of comfort for myself as a mum with a disabled child. I have gained lifelong friends who are there when I need a chat and I like to think that I have supported several parents too when they have found themselves in a similar situation.

The help for Caitlin never arrived, her reception class teacher informed me that she would never receive support from school and she would never receive a statement of education as there were children who needed helping who were ‘worthier’ that Caitlin! I didn’t think that it was fair that children at the school were being ranked by how disabled they were!

When Caitlin began the new school year in class one, I was starting to reach the end of my tether. I was conscious that Caitlin could learn as she has no learning disability yet she could not learn in the environment she was in due to an overcrowded class, too much commotion and a teacher who had no inkling on how to manage a child who was on the spectrum.

The last straw came when Caitlin was slung at me by a member of staff one lunchtime; I was notified that she had been unruly. There is an enormous difference between being naughty and having a meltdown, the penny finally dropped, I had to take her out of this toxic environment and sooner rather than later.

Once I reached home I researched homeschooling, I was astonished to discover that I could easily teach Caitlin at home, all it would take was a letter to the headmistress, a telephone call to the council and me devising a timetable to suit Caitlin’s needs.

I believe that Caitlin’s school were relieved that she was leaving. I don’t mean that in a nasty way but they were so understaffed and could not cope with children with additional needs. I was relieved too, relieved that Caitlin was taken out of a situation that was only causing her anxiety.

I was then left to become a homeschooling mum and what great fun it was! We would spend time completing school work but we also spent hours in the library, museums, parks and playgrounds as I believed that it was essential for Caitlin to learn about her surroundings and become used to the world around her.

After a month of teaching, I noticed a tremendous improvement in her learning ability although I understood that it would be a long hard slog with countless ups and downs. Soon after I had a meeting scheduled with a SENCO head teacher who visited Caitlin and me at our home. She informed me that it wasn’t practical for Caitlin to be homeschooled, I did figure that out for myself but what could I do when she was distressed and extremely anxious in the school setting? I knew that she needed social interaction. I was then informed that an emergency place had been found for her in an assessment centre that was within a mainstream school.

I was pleased for Caitlin although for entirely selfish reasons I was disappointed as I was relishing the homeschool experience. I recognised the need for her to be out of the home setting though and adjusting to the outside world without the protection of ‘Mum’.

My concerns that Caitlin wouldn’t enjoy the assessment centre were unfounded as it was fantastic! Caitlin was the only female that was the only disadvantage. The staff loved having a little girl to teach and she was a huge favourite with the boys! She settled in remarkably well. It was such a relief knowing that she was with people who recognised her condition and although her needs aren’t as severe as other children she still has to be supported.

Caitlin spent two wonderful years in the assessment centre and then she was transferred to a school for her needs. The school was attached to the assessment centre so it wasn’t a huge step for her and she knew several of the children and the staff already. The only exception was the learning environment changed, whereas the assessment centre was based on learning through play the school she relocated to would be more like a mainstream school.

Each class had approximately seven pupils, with desks facing the walls so the children could blot out their surroundings if required, there are three staff in every class who are qualified to deal with children like Caitlin. It was what Caitlin needed and she is now doing fantastically well. I have noticed a huge difference in her. Her eating habits are still problematic but she has recently undergone a stint doing art therapy at Alder Hey hospital that helped to improve her issues around food a little.

I couldn’t be more proud of Caitlin, she has overcome a lot in her ten years however we should not have gone through all the challenges of having no support after diagnosis, it would appear that nothing has improved within the system and it has only become worse for so many.

Caitlin was remarkably fortunate in the end, but if it weren't for myself home-schooling then Caitlin would not have received the support from the assessment centre, it feels like you have to be on your knees before you can obtain any help. More should be done to help mainstream schools cope with children on the spectrum and also more can be done to help parents cope.

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