Lonely Caterpillar
 

She is simply incredible.

Ten years ago our beautiful little princess Megan burst into our lives. She arrived quickly, (after a few false starts) and surrounded by drama. She has been our little princess ever since!

Megan had the ability from day one to be able to keep us on our toes. Initially she struggled with reflux but after 8weeks settled into a lovely routine and was very content. We instantly knew how blessed we where to have her. Then we got the extra blessing, the whirlwind that is Elijah.

My children couldn’t be more different. Megan was diligent and calm and sociable, Elijah was excitable and anxious and accident prone. With Elijah’s medical needs and subsequent ASD diagnosis along with multiple A&E trips we often counted our blessings to have such an easy going daughter who took everything in her stride.

We noticed from a very early age that Megan struggled with co-ordination, her nursery and early primary school teachers picked up on it but referrals to professionals where subsequently knocked back and her difficulties simply put down to her being a little ‘clumsy’. When it’s your first child and you have very little experience of these things you don’t know that ‘clumsy’ isn’t an acceptable response from a qualified paediatrician.

Megan continued on at school, her coordination causing her very few problems that we could see. She worked extremely hard and had excellent reports, she was popular with all the other children.

Then this year Megan transformed. She was struggling in school, she couldn’t find a way to mix with her friends and she was angry all the time. The every day struggles that come with hurtling towards adolescence became unbearable for her and she began to say she didn’t want to have any friends. She shut herself off from everyone and very quickly became unrecognisable as the carefree little girl we knew so well. Along with these social issues, Megan began to prepare for her AQE exam. Megan has always had extremely positive school reports and meeting with teachers have always resulted in us leaving school, beaming with pride. However at the start of this year Megan started to wobble with some of her work and once she started doing practice papers for her exam, a mask that had been put up rapidly fell away. It was apparent Megan had big gaps in her knowledge. This was in no way schools fault, they had been supportive to her right the way through. But Megan has a large class with lot of children who have needs of their own and therefore it had possibly been even easier for her to create an illusion of what was going on within herself.

School very quickly realised all was not well with Megan, more quickly than we did in fact. They quickly got support in place and kept us updated on how Megan was doing. In ourselves, we already knew there was more to this than meets the eye.

Its worth stating that Ben, has been mentioning Megan having an educational psychologist assessment for the past four years. Pretty much as soon as Elijah was diagnosed Ben said he could see traits of either ADHD or ASD. I put these traits down to learned behaviour from Elijah and Ben.

Here’s were I need to be honest. I didn’t want Megan to have any of these conditions. I didn’t want it for her,Ii didn’t want the difficulties she would face, the social issues or the battles thatIi know that come with these diagnosis. As much as I know that  diagnosis opens doors and that these conditions are as positive as negative I honestly just wanted an easy life for her, and to be honest maybe I wanted an easy life for me too.

So this is where we are at, Two weeks ago after two months of multidisciplinary private assessments (yes they are accepted by the EA and the NHS). We were handed a report detailing our little girls ASD, PDA, ADHD and Dyspraxia.

Megan is the prime example of how girls mask autism. The majority of girls are diagnosed at secondary school as this is when the social issues become too much to mask. Girls are often misdiagnosed with anxiety or eating disorders – Megan has had both of these issues flagged by different bodies this year. Girls can be viewed as moody or hormonal and left to their own devices.

I am filled with guilt that I have missed so many of Megan’s needs, I know girls mask but I am her mother and i know her. I live with a husband and a son who have ASD and I have almost finished a psychology degree. Yet I buried my head in the sand over this. I wanted my princess to have the perfect school life, to be top of the class, to have all the friends and to be musical and arty and academic (i never pushed her these where simply ideas in my own mind). Megan saw what was expected of her, or expected of everyone, in a round about way, and she moulded herself to that as far as she could. She put that mask on and she pretended to be whoever she needed to be for whichever situation she was in. When she couldn’t hold that any more she had no idea who she was underneath it all and its been painful to watch her try to navigate that.

The positives, however far outweigh the negatives. Our major positive in this is that we have the most wonderful SENCO in school. This woman took the time to know my daughter as her teacher, she saw signs of issues before we did and she has been Megan’s greatest champion. We where given a diagnosis for Megan the week before she finished school (but the report was only two weeks ago). Initially Megan didn’t want people to know, however she was adamant that she would be telling the SENCO. I’ll be honest I was really nervous. Private diagnosis have to be accepted but they’re not always welcomed. Lets face it a child with additional needs means more cost for a school, more paperwork and more red tape. I needed have worried Megan was offered the kindest words, some amazing support and practical help straight away.

(Megan has now told several people and asked me to write this blog)

Since receiving the full report Megan has already been like a new girl, its as if she’s been given permission to be who she really is. She understands more about herself and her feelings. She knows that help is on its way in the form of OT and hopefully some courses and therapy. We’ve reminded ourselves as a family that this is diagnosis not labelling. Megan is the same girl she’s always been, just now with access to any help she might need.

Elijah’s response to his sisters Diagnosis was ‘you stole my super power’ all three then proceeded to go about arguing over ‘who had it first’. A fairly surreal moment I must admit.

So the Clarke’s are now a family of which three have ASD. We are still the same, we are happy. We are ready for this adventure, and the battles and the laughter and the tears. These three will always have each other to understand what they’re going through and they will always have me in their corner ready to fight for understanding and acceptance.

My family are simply Incredible.