Friday, 16 March 2012

What my mum means to me

Ahead of Mother's day, NAS Ambassador Robyn talks about the importance of being supported

My mum and dad really wanted a baby.

They tried many times and, in April 1986, my mum had a miscarriage. After her miscarriage, my mum continued to put on weight and went to the doctor, who told her she should go on a diet. The weight kept piling on and then she started throwing up.

She went back to the doctor and, to her surprise, discovered she was still pregnant. At 28 weeks, she went to the hospital and had a C section – I was born.

What my mum didn’t know is that she has two wombs. So after miscarrying my twin, I was still growing in her other womb, waiting to be born.

Having dealt with the loss of my twin, my mum and dad now had a critically ill baby to care for. I was in an intensive baby care unit for 10 weeks. They visited every day and had to take me back and forth for many years to come – every time I had so much as a cold.

My parents were overjoyed, and took pride and care in looking after me and meeting my needs.

But I didn't look at mum; I didn't snuggle against her when she fed me. In fact it seemed as though I was in my own world. So mum decided to play the guitar to me, and I started to pay attention. Essentially I was surrounded by a brick wall and my mum removed a brick so we could metaphorically shake hands.

As I continued with my 10 disabilities, I hit every developmental milestone vey late. I didn't talk at the right time and I signed using a special language called makaton. But my parents continued to love and accept me for the human being I was rather then the human being that perhaps someone else thought I should have been.

My parents were like warriors fighting for me. Mum learnt to use local services to my advantage, like the Nursery bus, where I could show the children how to dress up and the other activities I’d learnt about. Even though my social skills were impaired, I was able to find a place within my community.

My parents lived through me banging my head violently into the pavement; biting my arm; slamming my arm into doors; yelling; screaming; having tantrums in the supermarket. And yet they continued to love me and accept me for who I was. They continued to fight for me, putting pressure on the local education authority to meet my needs.

Finally when I was 8 a teacher took my Mum to one side. She said that, although the other children my age had behavioural problems, such as faeces smearing, biting and breaking kids arms, they were fine. But me? I was the problem.

Mum thought maybe I had autism, so I was referred to CAMHS and it took 3 years to get a diagnosis. With my new found diagnosis you would have expected my parents to be able to rest. But no! I was mainstreamed, which was a disaster. I would bite my arm, tantrum, scream yell and be very upset generally.

My parents accepted me when I walked around backwards pretending I was on film or speaking into a Dictaphone. Or shouting loudly at night on holiday to process what had happened that day. They accepted this and then decided to go camping instead.

When I moved to high school I got bullied and my parents had to explain it wasn’t my fault and fight against teachers who didn't understand. Yet they continued to love me for who I was. No matter how challenging my behaviour got.

When I was 13, I moved school and my Mum had to stop work due to ill health. So my dad was the only one going out to work and picking me up from school. But no matter how many hospital appointments my mum had, or how bad things were at school, or how much I was angry at the world and them, they still loved me and accepted me for who I was.

No matter what scenarios have happened within my life, my parents have continued to support me and be there accepting and loving me for who I was. After all this love and dedication they then had to defend themselves when the school mislabelled self harm as abuse!

I don’t know if my parents have missed out on life because they have me...
I don’t know what it would have been like if I wasn't on the spectrum…
… But I know my mum and didn't ever give up on me.

My parents’ lives were based around me. They helped me take part in every imaginable activity to find something I as good at and encouraged me to pursue it. They weren't bothered about exam results or staying in school, but were bothered that I became as independent as possible.

For me everyday I’m thankful for my Mum.

I don’t know what will happen when they die. Like 61% of parents of people on the spectrum, I’m sure my parents worry about what will happen when they die.

If I may advise from a child perspective:

1. Love and accept your kids or who they are
2. Find what they are good at and encourage them
3. Academic achievement is not the same as happiness

(I had no GCSEs and have been very successful. I travel around the world and speak nationally, most recently chairing the NAS Professionals conference. I’m only 25 - if that’s not success I don’t know what is!)


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