Autism, ASD, Asperger

You know

My daughter.  13years old and Perfect. 

Quirky, beautiful, caring, loyal, nervous, friendly, lonely, loving, unusual, thoughtful. PERFECT. 

I've always described my daughter as quirky, or her actions as a lizzisms. 

The start of our journey.

Lizzi had some unusual behaviour at infant school,  when she was about 5 years old, she rocked constantly on her chair "went off into her special place" unfortunately we didn't have a very knowledgeable teacher, she wanted to refer to camhs but made it sound as though we were in trouble, and to be honest we panicked. She said some things that shocked me and we moved her school.

Fast forward a few years to the last year of primary school where Lizzi anxieties started to manifest, particularly with bus journeys.  The first major problem was the school residential trip which she was really looking forward to. But a few days before she started getting very upset about the upcoming bus ride.  A few children had mentioned to her there wasn't a loo and she became fixated on she might have an accident on the bus. This was the first time she wouldn't  get on a bus, in the end I drove her wales myself.  She had an amazing time and came home on the bus.  

Worries 

Being around friends and family with other children, 'grow up lizzi'. ' don't do that' comman parent 

mumblings but I started to see more and more differences between lizzi and other children's behaviour. Her anxieties were getting worse, she stopped walking to school. If I didn't take her she wouldn't go! Wouldn't go on school trips. She has a massive fear of spiders, vomit, needles (I know these are common phobias but at Lizzi's worst she would put herself in danger to escape). I that worries me. Basic hygiene can be a challenge and don't get me started on internet safety! I was worried there was something I was missing.... 

Holiday the beginning.

Last summer 2016 was when it all came to ahead my Dad Liz myself and my niece headed of to Anglesey for 10 days caravanning. It was one of the best and worst holidays of my life, don't get me wrong I loved it.  Time with family is one of the most important things to me.  And to share that with my niece was lovely. 

However, it was on this holiday that the social diffences we so massively highlighted to me, I was on tender hooks a lot of the time. I hadn't realised how much I still do and how much energy I put into keeping her on track with day to day living.  Spending time with Martha and lizzi together made me realise this.  At the end of a particularly bad day I walked to the beach on my own and sobbed rang my sister. Talked through my worries and decided to book a gp appointment. 

Gp and beyond.

I went with my sister and armed with pages of info about lizzi.  I shed many tears and they agreed to  refer us to camhs we waited about 4 months for the first appointment with a psychiatric nurse who
agreed we needed to be looked at further, we have just waited 27 weeks to see a psychologist who is 

95% certain lizzi is on the autistic spectrum. We and he believes that she has high functioning autism, or ASD, this is what was formally called Asperger syndrome. Everyone is different for my daughter it seems to effect her social skills with her piers, she's currently 2-3 years behind her age, but, academically she's fine so getting school on board is tricky.... It also effects her anxiety where she worries and worries over things.  We are now waiting for a ADOS assessment but this could take up to 12 months. We've been marked as a priority though. 

Doesn't sound like much.

I know these do not  sound like much. But they effect us day to day. This morning going on a day trip with cousins and her grandad she started to panic. I took me time to get her to get dressed. To keep her calm. To go to my sisters and get into the car. At one point if I didn't have hold of her hand I think she'd have run off. Not because she didn't want to go, but because she'd started to work herself up over it.

We've had instances where she won't get out the car for school or at grandmas. It's easy to say "make her" but when you hear or see the reaction your understand it's just not that easy. She's ran away from home because I didn't tell her I was cooking tea! 

I worry daily, My daughter is a beautiful well behaved teenager who I believe will go very far in life. It IS more than normal hormonal teenager behaviour, I know because I'm her mum. At  times lizzi may needs a little more support and understanding, And too be honest I might do too....

Our Daughter is PERFECT!