Fighting for My Daughter

It started as a typical Bank Holiday Monday and finished with a nightmare. My eldest has never made life easy; when she was born, she got her head stuck in the birth canal, and an emergency Caesarian ensued to save both her life and that of her mother.

On this day in particular, she had been a little unwell after her vaccinations, but nothing too bad. Around 1 am, my partner checked on her, and she had a temperature. Whilst we carried her into our room, she had a seizure. She had her second whilst we were on the phone to the ambulance and her third in the ambulance.

When we arrived at the hospital, we didn’t go to the cheery children’s ward but rather straight to resuscitation. That was when we were told our daughter had a temperature of 42, a record in the history of the hospital.

The doctors fought to bring her temperature down which is when the doctor turned to me and said, “if we can’t get her temperature down in the next fifteen minutes, do you consent to put her into a coma?”

She was eighteen months old. I didn’t trust my voice — a nod was all I could manage.

Before this illness, she had been a happy little girl, always smiling. She had started making a range of sounds, not talking but getting there. She was also experimenting with food. After the illness, she disappeared into herself for the next eighteen months.

After a week, she was discharged from the hospital; the doctors were at a loss as to what had caused her temperature to rise so high. The temperature had caused the seizures.

She was now a little girl who would not talk to us, never held any eye contact, and refused to eat anything other than five safe foods, none of which were good enough to sustain her on their own.

We sought help from the relevant professionals, and they suggested she might have autism; an appointment for diagnosis was made. As a teacher of special needs, I had always suspected that she was autistic. I will never forget the day we went to the appointment.

It was a bitterly cold November day; our family had now increased to four as her baby sister had been born the week previous. We went into this centre, which had all the charm of a funeral parlour.

We were ushered into a room where there were two women. Some toys had been thrown around the room. One woman would play with our little bug, and the other would ask us questions. There was little interaction from my little girl.

After an hour, the woman broke the news to us. I believe doctors who tell patients they are terminally ill have more light in their words. “I am very sorry to tell you your daughter has autism.” Here is a leaflet that explains all about it and contains pictures of celebrities you might know who are also autistic.

The leaflet contained a picture of Susan Boyle and Chris Packham. Now, I am not being funny, but neither of them is the role model you want for your child.

In hindsight, the Doctor did me a favour with her terrible delivery because that was the moment I knew I would fight with everything I had. Parents I had worked with as a teacher always told me they had to fight for their children. I never realised how bad it was until I started.

My other daughter is a cherub. She even sleeps like one with a quick wit and an angelic face that everyone falls in love with on sight. Within an hour of posting a picture of her on social media, everyone is commenting and asking to see her. They want to squeeze her; they want to cuddle her. You know the way it goes.

What breaks my heart every day is when we post a picture of her big sister. No one mentions wanting to see her. When we attend family gatherings, virtually no one is running to cuddle her. That is because she is more complicated to build a relationship with due to her ASD.

They are idiots because when you get to know her, she gives the best cuddles and is one of the warmest people you can spend time with.

She is more complicated to build a relationship with, but not impossible. She has two amazing aunties, one on each side of the family, who have taken the time to get to know her. She has grandparents whom she adores. Through perseverance and love, she has let them into her bubble.

Those who make the effort have earned a special place in my heart. When I see them with her, I’m thankful she has a handful of people in her corner. These people are the ones I would jump through fire for. They have earned my daughter’s heart; they have earned my respect.

People want to spend time with her sister because she is easier. We are adults. Should we always choose the easy option, especially when children are involved?

She started communicating to us like Bumblebee from “Transformers.” She would find songs on her iPad and play them with us to tell us how she felt. She had a song for hunger, a song for wanting a hug and a song for being scared.

However, that was not enough for me, so I researched and found one book that changed my life, The Autism Language Launcher. The book discussed going into her world and bringing her out with you. The way you do this is to stim with them.

For those who don’t know, stimming is the repetitive action that autistic people use to control their emotions. Her particular stim was to bounce on the sofa, so I bounced on that sofa like my life depended on it. Every so often, she would come up to me, look at me with those intense blue eyes, and connect, and then the battle started to keep her connected. I blew raspberries and made funny faces; you name it.

She would eventually return to her world, and the sofa bouncing would start again. A wonderful thing happened, though. Every time she connected, it was just for a little longer. Slowly, she came back to us.

I fought harder than I have fought for anything to bring my little girl back to me. My daughter now talks and eats more food, but you would never call her diet extensive. She attends a mainstream primary school with support, and she is funny, so damn funny.

To this day, we believe that the temperature and seizures caused some form of brain damage, and we had to help her rewire to come back to us. I have worked a lot with children on the spectrum, and none have changed the way she has.

One question many people ask me, “if you could, would I take her autism away?”

I have to say, hand on heart, “no.” Her autism makes her the person she is.

I would change the world she lives in without a doubt. I pray every day that her ASD will shield her from the hurt others may cause her. We are getting better at adapting to autistic people, but we are nowhere near yet. Until that moment, she will have a mother ready to fight for her whenever she needs it.