Psychological Cotton Wool - My Autism Mum First Aid Kit

I've found I'm defensive and sensitive, the smallest remark goes round my head for days, beating myself up about a comment from someone I barely know. Blame tiredness, loneliness, lack of self-esteem but sometimes I wish my brain would give me a break.

When I discovered I was expecting in my late 30's, along with all the excitement came the concerns of any mum to be, thoughts about Down's Syndrome and Spina Bifida as well as contemplating how I would cope as an older Mum.

However, it never occurred to me to even think about Autism, to be honest I didn't know much about it.

Morgan was born a healthy 8lb 10oz and perfectly well, all my concerns were laid to rest and I settled into the routine of being Mum. My health quickly deteriorated after I was rushed into hospital when he was nine weeks. Which left me with a lifelong health battle. However, I worry that my limitations affect my ability as a parent


As Morgan grew from baby to toddler we noticed his development wasn't 'age appropriate'. He was extremely bright and yet very behind. He knew his entire alphabet without us even knowing he was learning it at 18 months, could read at two but was still a baby. At three had to be withdrawn from nursery because he couldn't cope. We knew something wasn't right, we tried talking to his nursery teacher who said he wasn't intelligent he just had a good memory and wasn't ready for nursery, he wasn't mature enough!

He developed little obsessive routines that he'd go through every day, like tipping out every toy basket onto the floor in order, counting his teddies onto his bed and wearing a certain colour - which was turquoise and only eating finger food. I knew I was recognising something I saw in his older brother some 16 years earlier. Having tried to get help I'd been told by the Specialist we trusted with our child, that he bore no signs of diagnosis, only poor parenting. Looking back now, I realise whatever they did with him wasn't testing for diagnosis.

Ahead lay some very difficult years and a nearly broken family who struggled to cope, I was certain that Morgan was not going to be treated this way. I knew this wasn't my parenting.

Then one lunch time whilst walking home down the busy high street, some yellow flashing roadwork lights caught Morgan's attention. He went into a trance, wandering towards them right in front of a car. I grabbed his arm pulling him to safety, he snapped out of it and instantly panicked, realising what he'd done.

We made a GP appointment who suggested epilepsy. However, the neurologist stated that from the GP's report, Morgan showed autistic traits, and so began the process of diagnosis. Starting age three with diagnosis age five. We were told he was either a very capable child or autistic, it was a very fine line.

What nobody mentioned was something I'd never heard of - Asperger's Syndrome. So when a letter arrived saying Diagnosis Asperger's Syndrome - Discharged. They may as well have included a brick wall to bang my head off, a sound proof room to scream in, a permanent visual reminder of a disapproving parent tutting and a guide book full of blank pages because since that day, that's pretty much been my life!

So has being an Autism parent changed me? Well yes, to be frank I don't know who I am anymore.

I don't have mummy coffee mornings, or chats at the school gates, I get weird looks because I'm a mess. Yes, a mess because while other Mum's get their kids up, put breakfast out and get ready while their children do. I'm scraping my sobbing child up from the floor who's begging me not to make him go to school today, he can't bear it, he doesn't have any friends, the noise hurts and he just wants to hide. 'Please Mum I can't go there every day, it's like torture'. I try to tell him the law says he must go to school. My heart wants to keep him at home where he feels safe and not make him go through this each day of his young life.

I go home feeling like I've battled a tornado, an emotional wreck. Gripping a mug of tea with no-one to chat to, wondering what my child is dealing with today that all the children think is so funny and his teacher thinks is nothing. At 3.30pm the door bursts open, a school bag hurtles through it, closely followed by a coat and in comes Horrid Henry. No not really horrid, not at all horrid but his day was horrid so his mood is horrid therefore our evening is going to be horrid as will the next morning after very little sleep. But hey, it must be a problem at home, because he's fine in school - grrrrrrrr!

I've found I'm defensive and sensitive, the smallest remark goes round my head for days, beating myself up about a comment from someone I barely know. Blame tiredness, loneliness, lack of self-esteem but sometimes I wish my brain would give me a break.

My need to care for, understand and protect my children overrides everything. I know this isn't particular to autism parents but it's magnified when your child is vulnerable with extra needs. I have this psychological cotton wool I carry everywhere in case he needs me to wrap him in it. It's very easy to store but it's a bit of a burden at times.

When he goes to school and I don't know what the day will bring, or If he dares venture out to play and I'm not sure who'll be at the park. When he sits at the window waiting for that friend who promised to come play with him three hours ago, the cotton wool is always on standby.

You see as the parent of a child with autism my life isn't all rainbows and pretty colours, I'm lonely and isolated and I've developed a fear of people because they're either glaring at your child or judging, having helped many who have turned round and really hurt me, I question myself. I wonder every day if I'm a good enough parent and shy away from things that make me feel anxious or uncomfortable.

I used to be fashionable, slim, stylish, with a quick sense of humour and boundless energy, I had a social life! I never even thought twice about leaving the house, now it's a mammoth effort. I've lost myself amongst everything I am trying to hold together. I'd say I've lost friends too but real friends wouldn't be lost, they'd understand.

So where do rainbows and pretty colours come in to my life? My children fill my life with their humour, energy, games, music and love. The wonderful young people they're becoming, my home is full, my heart is full and my colour chart is full.

Being the parent of an Autistic child is a reward I feel honoured to receive.

But I always keep my first aid kit with me to soothe the way.

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