ASD - A difficult post to write...............................

This post is difficult for me to write. I've contemplated whether or not to write it or not. Whether or not to share this raw side of our life. But after much contemplation I decided to share this. To put it out there for one reason -  to bring awareness to more people in society about autism.

One of my daughters has Aspergers Syndrome. Date of 'official' diagnosis was the 1st June 2012.  I remember it as if it were yesterday.
As my husband and I walked out of the psychologists office after the 'official' diagnosis in the cold dark of night [it was after 6pm] we hugged. Finally someone confirmed our suspicions and finally we could work on helping our daughter with her daily struggles.

We knew, long before then that she had Aspergers. I, an Early Childhood Educator, since 1998, knew the signs from when she was 18 months old. I was always able to deal with the behaviour up until school age. 0-5 year age was my speciality and I seemed to manage well with her. 
During her school years her behaviour got worse.We knew we needed expert help. So we didn't get a diagnosis until she was almost 10 years old.
To this day, I regret not going down the diagnosis path sooner but I can't change what is, or has been.
I'm not mentioning my daughters name but will refer to her as She or her. I hope that doesn't sound bad :(


So what is Aspergers Syndrome?

 

Aspergers Syndrome  is a neurological condition. The pathways between the front and middle lobes of the brain are muddled up and don’t work properly. It is on the autism spectrum.

Some of the signs we noticed with our daughter were : 

She has always been advanced and smart for her age. She is above average in class and her teachers all say she gets on well with her peers. However we know she struggles and struggles a LOT . She just appears to be on a totally different wave length to her friends and can't quite 'fit in'.She has always been like this, it’s like she is so much older than her peers and just can’t relate to them.  It has always been that way however the older she gets it has been becoming more obvious.

 She can't maintain friendships at all. Every single day of school she complains of having no friends and she has never had a ‘close friend’ that she can connect with. In a group situation when she is trying to ‘fit in’ it’s very much “her  way or the highway”. She constantly wants to organise them, their play and only wants them to play her way.

She doesn’t have any current ‘trends’ like most children her age do. Occasionally she will say she likes ‘Bratz’ etc but really shows no interest and seems to just pretend she is interested to fit in with her peers. She will often just line them all up and not know how to socially interact with them.

She has never been very touchy feely, cuddly even towards us almost to the point that she is rigid when she hugs and it's like she hugs because she has too, it's like it's just not natural for her and she does it because others do. When she does it’s very half hearted and not a normal hug.

She is very intense and will just talk and talk to strangers to the point they don't even know what she is going on about and she doesn't let them speak, she just keeps going. She doesn't seem to pick up when others may have had enough. She talks at them rather than in a conversation with them. She relates well to adults but not so much children her own age. She can be quite blunt and even insulting and blurt things out and not really care or look concerned if it upsets anyone.

She has never engaged in make believe play. She lines all her beanie kids up, or gomu rubbers or mighty beans etc and organises them but doesn’t actually play with them. If her and her sister are playing ‘shops’ or something like that that involves make believe play she will have to organise it and tell her sister how to play. If her sister doesn’t play her way she gets angry and upset. She does not like playdough, clay, goop, finger painting etc and never has. She has very poor handwriting [Which has only just begun to improve after lots of practice from us at home ] and hates gross motor activities and still refuses and can't ride a bike. She wasn’t able to jump from the ground up with both feet until almost 3.5 years of age. She has an obsession with animals and has a way with them, she has to watch every animal show she knows will be on tv. She is apparently really well behaved at school and eager to please but at home her temper is wild, she is very short tempered and just explodes over the most simple things.     She has no self care or personal pride. She only showers because we make her, she doesn’t care if her hair is not done and is messy, refuses to wash it for days and days etc.   She has no idea how to behave in public. She will have a melt down and not care if it’s in the middle of the supermarket. She seems to be in a bubble and just not notice or care that people are looking at her, it’s like she is in her own little world. She can also be very full on with people [at appointments etc where she is very familiar] interrupting adults to voice her opinion on a topic and just keep going on and on not recognising they are losing interest.   She constantly says “No one understands her” No one likes her etc.   She takes jokes and sayings literally all the time. She only copes with routine, if something changes it will almost always end up in a melt down. She has to write lists and routines down in order so she is comfortable with what is going to happen. She is very much a perfectionist. If anyone [like me] for example , makes a mistake when writing a note, shopping list etc She will pick out the error even down to the very finest details.   She loves repetition so she will copy novels straight from the book, will get her maths book and just copy page after page after page.   So where does this leave us????????????? It leaves us with a pretty stressed household almost 90 % of the time. It leaves us with numerous visits to a clinical psychologist for both her and us. It leaves us judged by many members of society who see her as badly behaved when she is having a sensory overwhelm meltdown. It leaves me wondering how on earth some days I manage to make it to work on time after meltdowns all morning. It leaves me mentally drained and exhausted at least 98% of the time. It leaves me feeling guilty I have to work 36 hours a week out of the home and bring my work stresses home and create an even more stressful home. It leaves me wondering how to help her cope and how she will function as an adult. It leaves me feeling guilty that my other daughter is often left out as this behaviour attracts so much attention. It also leaves me feeling like the proudest mum in the world. For while this is all stressful on me, it is on her too. And at the end of the day I wouldn't change her quirkiness for the world. I love her more than life itself and always will.   Autism makes our life difficult at times but being on this journey has also enriched our lives in so many ways too.........................................   Many Blessings.