Please let her be.

My daughter doesn’t show her emotions the same as most. When she is happy she screams, when she is mad she screams, when she is excited she screams, when she is anxious she screams,when she is angry she screams and when she is sad or hurting she screams. I am slowly learning to differentiate her screams and react as best I can. No my child is not a baby she is a beautiful, clever, loveable, funny, complex 5 year old girl.

Don’t tut when I let her shriek because she is happy. Her little head is full of so much anxiety and confusion that I let her grasp happiness and feel it as intensely as possible. She does many things to soothe herself, to intensify that happy feeling, to share it with me and others that you may find inappropriate. She loves to spin herself around and around, she loves to flap her hands or twist her wrists, she loves to bump into things (including people), she loves to stoke or lick things, she loves to bury herself under piles of teddies, she loves to talk, hum, sing and giggle.

Don’t shake your head when she shouts at me. I know she looks disrespectful but small noises you may not hear can hurt her head, smells you didn’t smell can make her feel unwell and sunshine can make her eyes sore. If you were made to listen to loud music that you despised while someone shone a torch in your eyes and waved a dirty nappy under your nose how long would you keep your cool?
She cannot always control her urge to do these things and sometimes I even encourage it. You see my daughter’s brain is not wired like everyone else. There are many things children her age instinctively know, that my daughter doesn’t she has to learn them like one might learn maths. When you frown she is fascinated by the wrinkles in your forehead, she doesn’t know they mean she has displeased you, when you smile she doesn’t always see it, so may not smile back, when you step back she may move closer, she doesn’t realise she is in your space. What she has learnt already is she is not like everyone else. She knows others can handle new things better than her, she knows others often see her as a nuisance and if only you knew what that has done to her fragile little heart.
The tears you would shed if you heard the child you adore tell you ‘this world is too hard I don’t want to be in it.’ ‘I wish I was like the others.’ As a human I ask for you to find somewhere in your heart to please just let her be. Don’t tut, don’t frown, don’t shake your head. Her world is hard enough don’t judge what you don’t fully understand, give my child a chance to enjoy her life.

Find Your Red Ball

A few days ago I overheard S talking to her nan. 'I wish I could do things like the other children. They do everything easy and I can't.' It broke my heart to hear her talking of herself as less than the other children. I spoke to her nan after S had gone to bed to find out what else had been said. S had been asked about school and the conversation was that S felt different to the other children and that she was frustrated that she couldn't do things other children in her class seemed to do with a lot more ease.

When tying to speak to S I told her Nanny had told me she felt sad about school and that she thought the other children could do things better than her. She simply replied 'yes' and her eyes started to dart around the room for something to distract from the conversation.I told her we had to talk about this and then she can do whatever she wants to. I asked S 'Do you think the other children are better because they can do new things easier.' her eyes dropped and she mumbled 'yes'. My heart was in my mouth but I kept my composure. I began to tell her that everybody has things they find hard and everyone has skills that are easier. I reminded her that her best skill was how many facts she can remember, and that I have never met anyone else with such a fantastic memory as her. I went on to show her that different people have different skills 'Mummy stays home and looks after you and E, while Daddy goes to work. Mummy would not be very good at being a security guard and Daddy wouldn't be as good as Mummy at cooking your meals and getting you ready for school and doing all the other things that Mummy does. When I was at school I was good at Maths but not good at reading and writing. Daddy was not so good at maths but very good at reading and writing. Do you see that Mummy and Daddy both have things they are good at and not so good at?' I went on to ask her if she could think of something she was good at the someone else isn't. She remembered that she had played a bowling game with her sister and was better at it than her. I agreed this was true and her sister even cheated a little.

The mention of bowling made me think and I started to speak again. 'S imagine you are bowling and you see someone throw a pink ball they knock all of the pins down. It's your turn and you decide to try the same pink ball, it feels a bit funny and then you throw it and miss all of the pins. You see a red ball and decide to try that one instead, it feels lots better and you knock every pin over with it. The pink ball is like the things you find hard and you must practice to get better at throwing the pink ball. The red ball is the things you are really good at, your skills. You have to remember that you will find lots of things like a pink ball but you must never forget how well you can do some things throwing  the red ball.

First Playdate.

It appears S may be taking some small steps in the making a friend department. C is a lovely little girl in her class, she seems to see right past her more challenging interactions to the lovely girl we see. I wonder if having an older sibling with AS is what makes C more tolerating of S's less desirable behaviour. Whatever it is I am so grateful that she was put in S's class, and hope that we can coach S in holding on to this one friend.

It all started earlier this year when, close to the end of the school year, C chose S as the one child to invite to her birthday trip to a local soft play. It filled me with so much hope that despite seeing her challenging behaviour and mood swings that one child still wanted to be around S. Despite the fact that after a short while S went off and did her own thing at the soft play C still appeared to enjoy her being there. It was during this time that I had a conversation with C's dad where he told me that when asked to describe S, C had said 'She has glasses and blonde hair and she is little. Oh and she has Autism.' I always found it fascinating that a 5 year old could recognise the traits S displays yet a 'trained' paediatrician fails to see it!
S and C have been asking for a playdate since the beginning of term but one thing or another has gotten in the way. On Wednesday I had just been talking to C's mum about whether or not S should go to the school disco the following day, given that when she goes to parties it's usually that she is drawn in by the party food, yet once there she doesn't want to join in. She just wants to sit and watch the others while climbing all over me or running around away from the activity while screeching. I stood waiting to talk to Mrs W after the class left when C's mum popped her head around the corner and said C didn't want to go to the disco and asked would S like to come around for a play. We accepted the lovely offer and both girls were very excited.
S spoke a lot about going to C's she started to ask me what toys she has, which I told her she was best to ask C the next day. The subject of food was bought up and I promised to ask C's mum the next day. The other thing S kept saying was 'I have never been to C's house. How will I know where it is?' To which I had told her it was very near her aunt's house. The next morning the playdate was again the hot topic of discussion  and I constantly reassured her that if she has any questions to ask me and I will try to find an answer and if while at C's house she felt worried she should go tell C's mum and I was only a text away should she need me to come back. As luck would have it I received a text that morning about food and that was sorted and S told the plan. After breakfast S became very excitable crashing into the sofa/ myself/ daddy. When asked to dress she climbed into bed and hid under her covers giggling and once coached out of there she soon retreated into her hide out (a pop up tent full of her favourite fiddly, squeezable, touchy-feely things). Having not slept very well the night before (thanks to CAMHS cancelling her next assessment, new blog on the way for that one) I could feel my tolerance levels reaching their limits. I know full well that this behaviour is how S exhibits anxiety so I decided to tag daddy in and busy myself elsewhere. On the way to school we talked playdate all the way to the gates where the ritual 'Guess who I am' game started (it usually starts a few steps from the house and of course we are guessing dinosaurs). When returning home daddy says he feels S may be worried about the exact location of C's house.

The end of the day comes and both girls leave the class really excited and it takes a bit of gentle and physical persuasion to get S to not follow C to pick her sibling up. We get home and I show S on Google maps where C's house is in relation to her aunts house and explain there will be a for sale sign outside (small things like that can set her anxiety off). She is then allowed to play on first daddy's and then my phone until it is time to leave. We leave the house and S seems quite relaxed. She keeps repeating a few questions 'So we are having the hot dogs like we got from town? I can talk to C's mum if I am worried can't I? She will text you if I need you to come back?' All the while I reassured her that I would stay for a cup of coffee to make sure she is happy and if at any point she wants to go home she can.
We arrive at C's house and ring the bell C answers and right away both girls ran upstairs. S reappears 20 minutes later with a toy she shows me what it does then goes to run off again. I try to get her to come back so I could talk and she shouts from the stairs 'I can hear you from here.' I go to her and tell her I will be popping home for a while and check that is ok, it is of course and I leave. I left feeling confident it would all go well.
When I return to get her from upstairs the children shout 'S doesn't want to go home.' ' Uh oh' I think 'time for battle of the wills'. After promises to come back another day and C to come to our house soon and the promise of a game on my phone we do manage to leave 15 minutes later. The excuses do amuse me though 'I want to watch their invention (C's sibling) ...I'm too tired to walk downstairs...I need to finish my juice...oh no I left piggle upstairs...I am too tired to go look for him...too tired to put my coat/shoes on/ walk to the car.. I wanted to see one more invention.' Whilst S dilly dallied I spoke to C's mum and it would appear that S did really well. She enjoyed tea and decorating biscuits afterwards (even one for me) then happily went off and played upstairs again. As we left there was a little bit of upset with S giving an unwanted kiss to C which lead to a little conversation in the car 'I am a bit sad I made C cry from my kiss, I only wanted to say bye bye.' Which in hindsight makes sense as S is usually only visiting family and enjoys the ritual of hugging and kissing as we leave, yes my child is very affectionate, however she struggles to understand when it's not appropriate to show affection to others. We're teaching her to ask before she hug/kisses but when she is rebuffed she struggles with how to react. I am sure in time we will get there and have told her, of this experience, 'It's ok. C knows you were just trying to be nice. Next time just try to remember C does not like kisses.'

Today S tells me she played with C again which is 2 days running they have played together my baby maybe just maybe has made a friend. :D

Calm after the storm

As I stood in my living room listening to S and her daddy come home from the school run I could never have  guessed what I was about to see and hear. S came bursting through the door with huge smiles all over her face (OK I maybe could have got that bit, it is the last day of half term after all) I quickly noticed the stickers all over her school jumper. It turns out S had had a super day and Daddy had just 'stood listening to everyone talk about S, and how good she has been today.' The room was full of such excitement as I stood and listened to how the supply teacher (ST), teaching assistant (TA) and many children had been talking about what a great day it had been and how S had shared stickers with another child and impressed the ST so much she was going to go home and enjoy a glass of wine!
Stop, rewind to this morning and the smiley faces and positive energy was what I least expected. We had been warned ST would be taking the class today but decided it would be far easier and less stressful to withhold this information from S. We arrived our usual 5 minutes after the other children and knocked on the door, as we stood in the cold waiting for someone to let us in  S peered through the window. 'I can't see Mrs W. HEY who is that? Mummy I don't like the look of that teacher she has a mean face.' I told her then that Mrs W wouldn't be there today but it was OK because the TA is still there. She was just starting to loose composure when the door swings open and there stands the TA 'Good morning S.' Thankfully she went in all smiles for the familiar face.

As I walked home I started to replay the last 6 weeks in my head. 2 days into year 1 S started to refuse to enter her classroom, I would have to lift her through the door and make a swift exit before she followed me. A flash of inspiration had given me the idea to promise a dinosaur toy would accompany me to pick S up IF she went in no fighting, this hasn't stopped working, yet. l was soon told  she hides at the end of playtime and then I was called in by Mrs W one day, to be told that S had refused to do any work that day and had found herself at the head's office. I had gone home after this meeting feeling like this woman had just scolded me. It had felt like she was demanding I get my child in control as 'S needs to do as she is told in school.' I spent the afternoon holding back tears that had erupted from me the moment the girls were in bed. How could I be so useless? How could MY child be the 'naughty' disruptive one? Most importantly what could I do about it? Nothing! That is all I could come up with.
About a week later I was stopped by the SENCO who informed me they were really struggling to cope with S's behaviour, and how it was effecting hers and the other children's learning, 'oh no here we go again!' I had thought. However this time it wasn't a lecture she was telling me what they are about to do to help. They had contacted a behavioural specialist to come in and observe S and also wanted to start twice weekly social classes which I was informed was 'not a quick fix, but a long term support.' Finally! The school were doing SOMETHING more than an IEP. Other experts, I allowed myself to hope, meant a better understanding of S. The weeks trundled on and I noticed that each week a different teacher seem to let the class out, we'll call her Mrs A, on a Wednesday. On these days S was far more unsettled. Then just over a week ago I stood waiting and watching all the other children be let out by Mrs A but no S. I walked slowly over to the door, my stomach in a tight ball and then there she was. All full of life and, what I'd say is best described as hyper. I knew that meant I was just about to hear all about the chaos she had left in her wake. I was right, turns out she had hit Mrs A in the back, for no obvious reason.
The week pushed on and we had one of the worst weekends in a long time. S hit me twice in one day, this is rare S very often lashes out with a venom tongue but other than pushing people away to be struck by S just doesn't happen often. Parents evening loomed and I tied myself up in knots about how it was going to leave me feeling more drained, stressed and anxious than I already was.

Parents evening did not live up to my pessimistic predictions. It actually went very well. Mrs W told us all about how she has structured S's day into 'chunked' learning as she likes to call it. With the use of  'Golden time', which could range from dinosaur play to computer play and anything else that captured S for 5 minutes. S was allocated small chunks of work with the carrot of golden time to keep her motivated dangled in front of her. We also learned that S now has a small companion called fluffy who is kept in a special place in the classroom that S can access whenever she feels she needs him. Fluffy gives cuddles or gets stroked or just sits on S's lap whenever he is needed. S was even allowed to fetch him during assembly time one day and he sat in her lap while she sang along in 'her beautiful little singing voice'.We also learnt a spot is used for carpet times when S feels she can't remember where she should be or needs her space. Her reading is suddenly taking a leap and she has started to overcome her issues with words that do not read easily. She even worked well (with supervision) on a dance routine with another girl and in a classroom activity. We have agreed to meet again to discuss her IEP, and was informed that S's progress is only relevant when Mrs W is present as Mrs A finds her challenging but plans to persevere the one afternoon a week she takes the class to get to know and win S over. Also as S behaved so well on the day the specialist came to visit they had planned for her to go in and observe S on a day Mrs A was teaching (the very next morning as it so happens). With this information it confirmed that S was starting to thrive now she had a settled routine but lapses are expected when changes occur.
What bigger disruption to a child's school day is there than a ST? As surprised as I am it has been lovely to end half term on a high note. With the next stage of assessment by CAMHS and an additional 6 week course of OT next month I am allowing myself to start to feel some optimism that S can continue to improve in the school environment!

Summer Holidays and Back to School

It's been a very long time since my last post. So here is a quick catch up.
During the summer holidays S's dinosaur knowledge has grown rapidly. She has become a walking dinosaur encyclopedia. She can name all the dinosaurs everyone knows, you know the ones T-rex, Triceratops, Stegosaurus, Velociraptor...etc etc but she can also tell you the difference between a T-rex and an Allosaurus, what Triceratops' name means, what a Stegasaurus' plates are for and she'll tell you all about how a velociraptor has feathers. She can also name many more complex dinosaurs and often corrects me on my pronunciation. Words like Pachycephalosaurus and Euoplocephalus are often heard and other new names are added daily. I can just about keep up with her as I know where she  is learning from and can go there to find spellings to pop into google when she wants to know something. What I cannot do now is keep up with all the little facts linked to all the dinosaurs like, just for example, how many toes a triceratops has!

So where has all this come from?
Well you may have seen my blog back in July (All Wrapped up in Dinosaurs). S got up on her birthday and wearing her dinosaur nightie (which is actually a size 14 women's top her Aunt picked up at a car boot) she started unwrapping all those presents. She unwrapped all the dinosaur wrap first and was so happy with everything she got. She was bouncing around and smiling away. We then spent a day at Gulliver's Dinosaur and Farm Park. The weather was beautiful and we ALL had an amazing day. There is so much to see and do there and  for a dino lover like S (and secretly me) it was heaven. It was a so lovely to give her such a perfect birthday. She didn't get why all the other kids were having a party and not her but I know that this day out was definitely best for her (confirmed by her going to two parties in the holiday that she found very hard).
Throughout the rest of the holiday she spent hours playing her dinosaur game on the leapster and going through her dinosaur book finding the dinosaurs she has learnt about on there, asking me questions and watching dinosaur train. All learning at her own pace which seemed to suddenly snow ball.

I had before wondered if dinosaurs was just a 'thing' like all kids have but the turning point for me was at 7.30am on 16th September (just a week after her birthday).S came into my bedroom and said 'Look mummy at this funny dinosaur.' she was flicking through her new dinosaur book, before I even had a chance to respond she started talking again 'oh look a paleontologist..oh and triceratops bones...where is the other triceratops? Ah there he is. Anyway I was looking for Oviraptor.' I had just woken up, had no idea what an Oviraptor was and was a little baffled but took the opportunity to fill the silence and say good morning. For a moment I didn't think I would get a response but she did finally say 'Good morning' without looking up from her book and a split second after 'here is the Oviraptor, he has a short beak and a bendy claw like Troodon and Velociraptor but he has little wings instead of arms.' She waffled non stop for the next 5 minutes and then started the same lecture for her dad and her little sister. 30 minutes later she was still flicking through the book getting excited and reeling off facts. Maybe just maybe this is one of these 'special interests' I have read about not just a childhood fad.

During the holidays we also visited the Natural history museum in London. Which was a very successful trip thanks to the help of two great friends (you know who you are!), lots of prep, ear defenders and plenty of distractions/ comforters. The museum was great and we are going to go back. The dinosaur display was a little difficult as it was so busy. We had to stand in a line that shuffled very slowly past two skeletons up some stairs and over a suspended walkway. Luckily there was plenty to look at and we managed to get across with her shoving through to see a display only once and narrowly missing a woman's face excitedly pointing at another. The moving very lifelike t-rex at the end was worth having to carry an excited 5 year old and once past that she could run around and enjoy the displays at her pace, which was pretty fast. She talked non stop all the way back so she definitely enjoyed it.

Now S is back at school and after 1 week I was beginning to panic. On day 2 of year 1 the fights to get her into the classroom began. After fighting this battle for 5 days trying all the old tactics I was starting to worry, that day I decided to pick S up with a dinosaur to keep her calmer on the way home. Bam it hit me. Bribery...or motivation is a better way to put it. That day we made a deal, S goes into school no fighting, no running away, no refusing to take her bags and then Mummy brings a toy to pick her up. We have only been doing this for 3 days and so far it has worked. I know it will at some point stop working as most things seem to with S, then we will move on find something else that works. Until then I'm going to keep at it and hope it lasts a while and enjoy hearing all about dinosaurs in the morning, evenings and all weekend.

Shopping Fun!

I got some vouchers, for a well known store with a image of being expensive and full of snooty shoppers. I decided I would use said vouchers to get S some much needed new clothes. I know from past experience she is more likely to wear clothes if she gets she choose them. I also knew a shopping trip would be hard work, however I decided preparation, incentives, 1:1 and only having to got to 1 shop could be managed.

I started preparing S a few days before that we would go into town, just the two of us and pick her some new clothes and she could pick what she likes. Friday morning I told her we would go do the clothes shop after lunch, S always copes better when not hungry. I told her that after we had finished she could have an ice cream this seemed to excite her. We left her sister at home with her Daddy and set off for town, with S's playlist of favorite songs playing in the car; Pink, Drowning Pool, Foo fighters, Black Label Society, you know the usual! We got from the car to the shop with very little comotion, a few wobbles over cars in the carpark moving, demands to sit on rides (not that she will let me put money in them) and an ice cream van distracted her a little. I made sure I didn't promise one from that very van just in case they went on a break or something.
As we got to the shop I told her we were going in and that we were going to get clothes and nothing else. I took a deep breath and told myself 'Ignore the snooty looks, you will get them. Just concentrate on keeping S's stress as low as possible.' She didn't like anything in the girls section but as soon as we ventured into boys clothes she was in her element, blues and reds, a dinosaur top, a Thomas hoody. I let her pick clothes she liked and feel them all. She kept running around the rails but always came back when I started to count. Once I found her hiding between 2 rails of clothes and laughed so loudly. The security was watching us so I made a point of asking where the changing rooms were, he got really flustered. I knew changing room would not be easy but I wasn't going to go without trying a few clothes on S as she has a tiny waist usually clothes that fit in the leg are too big around the waist.
In the changing room S blew lots of raspberries, screeched and ended up laying on the floor. We managed to try on 2 tops and two pairs of jeans which I think was a huge victory. We then headed for the tills. There was only about 3 people in front of us but the two women at the tills were working painfully slowly. I was aware I only had about 5 minutes left to get back to the car so would have to stop off for ice cream on the way home. S started asking
'Can we go home?' 
'Yes, as soon as we have paid'. 
'Can we get ice cream from the van?' 
'No baby we'll get it from a shop on way home. Need to get car.' 
'I want it from van'
'We have to get car or mummy will get a ticket.' 
Then she started touching every gift card on a display and screeching. I asked her to stop and then she asked again, 'Can we go home?...Can we get ice cream now? From the Van?' After that she touched the cards again and when asked not to she groaned and then started to sing 'I wanna buy your house. I wanna, I wanna buy your house riiiiiiiiiiiight now.' The woman in front turned and gave a snotty look so I smiled at my daughter and said 'Oh I love you S, you are so funny. Look it's nearly our turn.' Luckily both tills cleared almost right after that. Spying a nice wide space next to our till I told S she could spin there (something she has just started doing again) while I paid, this won me a huge smile from her.
The walk back through town was painful. I was aware I was already late for my parking but could not rush S. I made the mistake of saying 'quickly' once and she just rooted to the spot. I still do not understand why when rushed S just refuses to move but I do know that once she has it takes a lot of persuading to move her again and heaven forbid I should lightly touch her in an attempt to do so. As soon as I heard 'I can't go fast. You carry me.' I knew I had no choice than to pick her up. Now S is almost 5 and of average height she is very slim and doesn't weigh much but neither do I and lugging 1/3 of my body weight along with my large handbag and a bag full of clothes is no easy feat. However if I didn't I would have taken at least 5 minutes to get her walking again. I have to pick my battles and prepare to avoid them in the future (longer on parking next time). As we passed the ice cream van again she started asking for her promised ice cream luckily this once she accepted that I couldn't get a ticket so we'd get an ice cream after the car. Half way to the car I had to put her down and she walked well next to me at a steady, un-rushed pace. The whole time she was talking about her ice cream and I lost track of the amount of times I said 'As soon as we have the car we WILL get an ice cream.' I stayed calm and answered her every time. 
Out of the blue a lady smiled at me and said 'What a lovely mummy you are? You are so lucky to have such a lovely mummy. Be a good girl.' I was totally taken aback by this. Having a child like S who is very loud and often misconceived as 'naughty' I am just not used to compliments on my parenting skills. I'm used to tuts and disapproving looks. I flashed the lady a quick smile and then scooped up, an again wavering S, with just a set of traffic lights between us and the carpark. Typically the lights changed as we got to them. As we waited the lady caught up to us. 'I mean it' she said. 'You really are a lovely mummy. I am always seeing mums that shout, scream and hit their kids.' I thanked her and said 'Shouting gets you nowhere' As the lights changed she again said 'You are such a good mummy and you (to S) are a really good girl.' It really touched me and despite being 10 minutes late back to the car I felt a wash of calm. A ticket free windscreen was a very welcome sight. On the way home I asked S where we should get ice cream and she surprised me by asking if we had rocket ice lollies at home and could we just go home and get one. 
15 minutes later she was eating an ice lolly and pointing out where her daddy had missed while waxing his bike, attention to detail one of S's great talents. 

You are NOT Stupid.

I have just had to try to explain to S why she isn't stupid. I just had to remind her to keep her feet to herself and ask her to remember her sister needs her personal space. She got very upset saying 'I'm stupid. I'm stupid.' 'You're not stupid S.' 'I am stupid. You tell me lots, personal space.' Time to have that chat.

I know I can't tell her she has an ASD just yet as she has no diagnosis but scoring 5 on an ADOS test shows she must think differently to others. 

I turned off the music and sent her sister off with a toy and offered S a seat on my lap, facing away from me, as making her look at me would distract her, with her head near me so she could hear me. I told her this. 

'S you are clever. You are not stupid. You are so clever and have a special brain. Sometimes because you are so clever you forget some things. Like when you forget not to touch people. You are clever.' 

We stopped for a hug and I asked her 'Are you stupid?' She paused for a moment then said 'no mummy, but I forget.' She did her usual over exaggerated sad face. 

'Mummy sometimes forget things. Do you remember when I went to get you a drink from the kitchen?' Yes ' I came back in without it didn't I?' Yes.'that is because I did something else and my brain forgot about your drink. Your brain is so busy being clever it forgets things like mummy did. Mummy is not stupid is she?' 

We agreed that we are both clever and I confirmed again with her that she is not stupid. 

I really hope that telling her every day that she is clever I can start to break down this mind set that she is stupid. If I can install this into her maybe she will be able to believe in herself, it's the one thing I feel is most important in life. 

All Wrapped up in Dinosaurs.

Last night I sat and wrapped some of S's birthday presents; A dinosaur book,  a dinosaur toy, a marble run, a slinky, rocket balloons, dinosaur Russian dolls, a liquid timer, a flashing foam baton, a gigglestick, a stretchy key chain, a dinosaur leapster game and a foaming dinosaur egg. All wrapped up in dinosaur wrapping paper. Once all the paper was gone I sat back and looked at the pile of presents in front of me and started to cry.

Why was I crying? For a few moments I am not sure I knew why. Then lots of unwanted thoughts came into my mind; 'These are not real toys!...Should I have got her all this dinosaur stuff?...Why am I wrapping it in dinosaur wrap? She's not a boy. ...This is not what I imagined I'd be buying my 5 year old daughter. ... What do normal 5 year old girls even play with or want for their birthday?'
It doesn't matter though does it? S loves dinosaurs and S doesn't enjoy 'real toys'. My daughter is a very unique little girl and I am proud she doesn't conform to what everyone else feels is 'normal.' I think the roller-coaster that is realising your child is on the spectrum has taken a new turn.

I've ridden the up of realising someone else feels my daughters behaviour is not my bad parenting. The down of others judging her, the up of maybe finding an answer that seems to fit, that the more I read made more sense. The down of long waits the up of getting appointment that's going to give me an answer then I soared down when that appointment didn't give us the answers, and left us feeling so confused and lost. I started to climb again as I found my strength to fight for the diagnosis she needs, to get a second opinion with someone who seems to be asking the right questions, who doesn't belittle my opinion on my daughter. Finally S's school are saying what they have been denying for months. You reach the top though, and you have to come back down. 
Suddenly seeing boxes ticked that say my daughter is 'a burden' on her teacher and classroom, that her behaviour effects her relationship with her peers and that the school feel they have run out of effective strategies. I know all these things I know she has 'difficulty sharing' and makes 'inappropriate verbal and physical contact.' with other children and can be 'very rude when reprimanded for behaviour.' To finally see all these things written down alongside boxes ticked that say she is 'Angry and resentful' and 'unhappy, sad or depressed' is a hard reality to have to face. Maybe a small part of me was still hoping I was wrong and she could be 'fixed'. Now however I can't deny that her behaviour screams ASD. 
On top of all of this S is now on her summer holidays and her behaviour is becoming really hard to handle she is stimming in ways I haven't seen in a long time (not that I mind stimming it looks like great fun) she is lashing out at her sister, hitting and throwing things at me and lashing out verbally. I know that it is just in the moment and that she is trying to express her anger but to hear your, almost 5 year old, daughter tell you she hates you and doesn't want to be in this family and she wants to kill you countless times through the day. Then to see your other child be hurt and your own self attacked is hard going. You have to bite your tongue and learn to not get angry and realise she is reacting to sensations, thoughts and feelings you may never fully understand. 

Being a parent is hard work, especially when your child has additional needs. I will continue to stay strong for her, to try to put all the pieces together to make sense of my daughter so I can embrace her quirks and all. That is what mum's do. So I'll wipe away my tears, love her differences, even wrap them in dinosaur paper. 

A Glimmer of Hope.

It has been a long time since my last blog. I have tried to type many times how I feel and everything going on, but the truth is I just haven't been coping. S has been unbelievably hard and I feel that doors are being slammed in our face. It just seems like the world is out to prove I am a paranoid mum. Ask any decent mum and they will tell you they would fight any fight for their child, if you're a mum you will understand. I cannot even begin to describe the heartache a mum feels when she has to fight to get people to see the negative things about her child. No mum wants their child to struggle in life, no mum wants to admit their child is behind with their development and no mum ever wants to have to deal with those things as well as prove to the world that it is true.

Recently I have to fight a lot of doubt, not only from others but from myself. 'Is she really ASD?...Is it just something I am doing wrong?...Maybe that is 'normal'?' Self doubt is not helpful, it tears you apart from the inside. I am so grateful that this week I have seen a glimmer of hope and am again beginning to shake off that self doubt and prepare myself to start battling once again.

Over the weekend we went to S's school summer fair and a small birthday party. Things other children of S's age seemed to have absolutely no issues with. On Saturday (the day of the summer fair) S refused to sing with her classmates but was happy to watch. What then followed was a 2 hour long meltdown! Screaming and crying. She wanted a cake, then an ice cream, didn't want to eat something hot before that, didn't like everyone, wanted to go say hello to her teacher (whom we couldn't see), the music was too loud, she wanted a drink, she didn't want a drink.....the list goes on. Half a burger and one hug from a teacher a few sweets later, Daddy bringing her ear defenders and the crowds easing a little the mood started to shift. We stuck around to actually enjoy ourselves. Even had a small trip to the park on the way home where S was in her element looking at leaves and sticks. Sunday was party day and given it was a 3 hour party she did well. I have to thank the child's mum (N) for this. Being an OT and having spoken a few times she had approached me about things she could do to help S enjoy the party. We arrived before the others and S was given a tour and shown a tent set up just for her if she needed it. S refused to join in with most party games, but N allocated her special jobs. S tended to stay away from the groups of children and sat alone in the kitchen for a lot of the time or disappeared upstairs. She did have a meltdown when she stepped into the garden as the other girls cheered and was startled tried to run away and tripped on the steps, other than that though it was a pleasant experience. On the way home S snapped and made rude remarks about 5 people so as soon as she got home I sent her to her hideout (pop up tent full of sensory toys, favourite books and soft toys) to calm down. She seemed happy to just retreat and be left alone so we allowed her to play on the computer before bed.

All of this helped to get myself into a better mindset, no longer doubting my concerns, for today's appointment at CAMHS (Child and adolescent mental health service). Given that we felt so let down by our paed I was very unsure what to expect so went with no expectations. We had sent in a copy of paed's report with our notes highlighting our concerns and issues with what had been written. We had also brought with us S's kind hands book to show the proof that S does lash out at others, contrary to what the paed says. On arrival we were told the consultant was running late and later told she could be up to an hour late due to delays. We were happy to wait. My phone is armed with games and animated re-tellings of Dr Suess stories also having an empty waiting room to ourselves we got through the wait. When Dr C came to fetch us I liked her immediately. She spoke to S first and led us out to the room. I cannot explain why I like her but I just got a good vibe. We were lead into a room with 4 seats sat in a circle around a table some toys in the corner and at the back of the room a small office area. Dr C started to apologise about the wait, when she mentioned she had got caught in traffic in Leicester S started talking at her about there being a dinosaur museum there that she wanted to go to, and that she is going to a dinosaur park for her birthday then wandered off to look at the toys. Dr C informed us that it was only yesterday they received the paed's report which they have been waiting about 5 weeks for. She also told us that she had not yet looked at it as she felt it important to speak to us first to give us a fairer second opinion. We were asked about S. We went through the issues she has, her anxiety, her confidence issues, social issues, outbursts etc etc. The Dr seemed very interested in what we had to say and was taking lots of notes. During the meeting the Dr asked S who myself and her dad where and she said 'Mummy and Daddy.' The Dr then said 'Do you know their other name?' 'Yes this is Auntie Kirsty and Uncle Frank.' Later the Dr attempted to get our names again and S said 'Mummy and Daddy' and didn't see an issue with 'So can I call her Mummy then?' S looked at a few toys spinning the propellers on a helicopter, surprising me as she does not often get to into spinning things. She played with a doctor set for a while offering us all injections and stickers, then rammed a toy car into another toy, she later ventured to the office chair and started to spin on it. S span on the chair for the rest of the meeting, except the few times she came and threw herself over myself or her dad pushing on my throat, sensory seeking just as we had described earlier on in the meeting.
The Dr spoke of a group observation, where various professionals observed groups of children, not all being observed for ASD. She told us we may have travel within the county to a group but we said this was no problem. We were given a questionnaire for ourselves and the school to fill in. She was very apologetic that it may be repetitive of one we have done before. However on seeing it she had no worries. The form is all tick and 'on a scale' type questions. It is clear they are far more geared up to diagnosing ASD than general questionnaire. Inside there is a questionnaire titled 'Garnett and Attwood rating Scale'. Finally they are asking the right questions arranging to see her in environment that may show her true issues.

Unfortunately the meeting and taking S out of her normal school routine came at a cost and she was very misbehaved n school the rest of the day, rolling around on the floor and putting beads in her mouth. At home she was very excitable and I haven't dared take my eyes off her. Luckily Thomas and the magic Railroad (oh how I hate that film) came to the rescue again! It appears chewing is becoming a new sensory preference so may have to look into things she can safely chew on. I'm none to keen on her choices,  being sleeves and foam bath letters. Despite a trying afternoon she fell to sleep within an hour and I am tonight feeling optimistic.

This glimmer of hope has changed my mind about what I am fighting for. I am not fighting to show the world my daughter has negatives. I am fighting to show the world just how well I know my daughter. Better than anyone!

Finding Support

One of the hardest things about having a child who is waiting on a diagnosis of ASD is finding people who truely understand. Over the last few weeks I have started to find support and people who understand what we are going through. Forums, facebook and twitter some of my favourite places online. I am lucky to have some very understanding friends who don't mind that I talk about Autism far too much but others I am sure must be bored to death of hearing about it (more fool them). However to talk to people that have been through/ are going through the diagnosis process is the greatest support I could find. They help me through the hard times with their stories of coming out of the other side and advise on how to get there myself. They also share the happy times. Those little triumphs that others do not quite understand.
This week I found a local support group that meets once a month. I don't like doing new things and despite being very nervous went along and met some lovely people and will definitely be going back.
S got invited to soft play by a friend this week. It was nice to talk to the friends parents as they understand S's quirks from having a child on the spectrum themselves. Also from speaking to them and S being the only friend invited I have realised that she may have actually be started to form a friendship.

This week I have also started to notice steam engines becoming a little more than an interest to S. She just loves them. We took her for a ride on a steam train at easter and she loved it, she watched Thomas and the Magic Railroad on Netflix and she loves that too. She keeps asking to watch it and to go see 'steamies', it was heartbreaking to have to tell her a local steam rally was cancelled due to bad weather. It took over half an hour to get her out of bed that morning and the rest of the day was hard work with lots of meltdowns and she even forgot all about needing to empty her bladder she got so into watching a Thomas toy that evening. That same Thomas toy is now on it's 3rd lot of batteries she watched it for a total of over 2.5 hours Sunday! However it did provide me with video footage of verbal stimming and rocking that I feel may be helpful to show CAMHS when we finally get to see them.

In other news after speaking to @AspergerSadie on twitter about S's fear of hand dryers and being told how they really hurt the ears I decided to buy S some ear defenders. When we go out anywhere I have to look out for signs of S needing the toilet as she will not tell me for fear of having to go somewhere with hand dryers. She freaks out if she sees anyone else in there or if she hears someone flush the chain as she knows they will use them. We get in and out as fast as possible and use hand gel, as she reacts so violently to hand dryers. The ear defenders turned up Friday and we took them with us Saturday S walked into some public  toilets with them on. She didn't mention the hand dryers nor did she reacted to them going off, she even walked passed them while they were being used! I was hoping they would help but had no idea they would have that much of a positive effect. Highly recommend them! Such a small thing can make such a huge difference to my little girls life and finding those small things (with a little help from the growing support network around me) makes life that little bit easier. 

Stop judging. Start understanding. to "I wish I didn't have Aspergers"- An AutismPositivity2012 Flash Blog Event

Dear 'I wish I didn't have aspergers',
     Just recently I have discovered my 4 year old daughter may have Aspergers. The more I read, the more I understand her and the more amazing I find my little girl. I do sometimes worry about the extra obstacles life will throw at her because of this. I know life will be harder for her and many people will sadly never know or even care why.
     Already in her short life there have been people who judge her and treat her badly because of her difference. Who refuse to see that she does not act in malice and is, if they cared to get to know her, one of the most loving loyal people they will ever know. I love how infectious her laughter is, how she can see wonderful things that others might miss (like reflections of light on a freshly mopped floor), how she can recall and has a hunger for facts, I love that she is not bound by social rules and does not hide who she is. She is who she is, quirks and all. I love her for that and I would not change her for the world. If someone told me they could take away what makes her do the things people sometimes don't like or look down on I wouldn't let them. Although it isn't all that she is, without it she would be like a jigsaw puzzle with a piece missing.
     This world would be such a boring place if everyone was just like the next person. A world full of copycats is no fun at all. Be proud you are different. You will find people who don't like who you are and the things that you do, people who do not understand you or even want to try, those people are not worth a second thought. There are also people who DO want to embrace you for all that you are and want to share all of your world with you. Let them ones in and never stop looking for them. Forums and support groups are good place to start that search. Chin up keep smiling and remember you are amazing.

A week in our life.

Lots to talk about this week so here goes.
On Saturday we received a letter from the chief exec at children's services. They acknowledged our letter and said they had passed it on to the Director of Operations and that he will advise us 'on the best way forward in your daughter's case.' This looked promising as it was a very fast reply compared to the 2 months it takes our paed to write and send a report!
Monday I got talking to another parent of a child in S's class. (Her older son is on the spectrum.) We have spoken before. I told her about what was happening and found she had the same Paed and had no problems but, has heard of a lot of people not getting on with her.

On Tuesday I got talking to another mum who is an OT. She asked how things were going so explained about the ADOS test and our concerns with paed. As soon as I told her our paed's name her face said it all. Her words were a little restricted by her profession. 'oh yes. I would say you are definitely doing the right thing. I don't know what it is with her, she is a lovely lady but many just don't seem to get on with her.' She they introduced me to another mum who's son is on the spectrum (the road S's school is on also has a special needs school  who they work with from time to time). Had a little chat with her and she told me she really had to fight for a diagnosis and it wasn't given until her son was 7, and finally seen by CAMHS (she had been told over and over he could not be seen by them before that). She gave me a good piece of advise 'Your daughter WILL get things, but ONLY because you have pushed for it. Nobody likes being a nuisance but it is the only way to be heard.' Words like that help keep that fight burning in me but also sadden me. Why should we have to fight so hard for what our children deserve? Regardless I will fight on for S no matter what it takes.

Wednesday I started to realise S may to be using her 'pretend, imaginary, horse. Strawberry' to help her cope with the stress of school mornings as when 'riding' her she is happy to skip along to school and it was Strawberry who wouldn't let Skye into school (a different teacher for the day). We did pass a car that put it's reversing lights on and revved loudly just as we stepped onto a road and this caused a little wobble. 'I hate that noise. I don't like noises like that.' but she quickly reverted to talking about Strawberry again.
When I went to pick S up I could see her spinning while stood in the line waiting to come out. She bumped into the boy behind her and I could see them bickering I watched on hoping teacher would notice (her inexperience with S showed as she didn't). S continued to spin until she reached the front of the line. Just lucky she didn't lash out in full view of all the parents. All the way home S kept pausing to spin and as soon as we got home she paced around in a tight circle in our kitchen. I came down to her level and asked her to come to me. She almost threw herself into my arms. Into her ear I said 'What is the matter sweetie?' no response. 'S did something happen at school? Something that made you sad?' 'Yes mummy I fell over and broke my leg.' she answered.  I just  said 'it's ok hunni.' and let her say over and a over 'I broke my leg and it really hurt.' I know she hadn't 'broken' it but does over react to little bumps and remembers them for a very long time. I encouraged her to head upstairs to change. When she got up there she just lay on her bed face down. I asked her to change but no response. After about 5 minutes she rolled onto her back, and just lay there rubbing her iggle piggle on her lip (as she always does). Hubby persuaded her to change for dinner after about 20 mins. It was hard to see that she was doing these things that showed her stress but it took the right questions to get answers. I guess I can be grateful I could pick up on the signs.

We went on to have a nicer afternoon S started to sing 'Does anybody care about us.' So I asked hubby if he knew where it was from, as I had heard her sing that one line a few times before, turns out it's from a The King Blues song. So she is developing a liking for punk rock as well as Metal and a loving for P!nk.
A few moments later E noticed some pigeons on a roof, there were 4 of them, so S declared 'They must be having a meeting.'
A short while later the two girls started throwing a small chick to each other  it was lovely to see them playing together as it always is, so I just sat back and watched. It got even nicer when E climbed up on the sofa and S moved closer and asked for a hug (something we have had to teach and still have to remind her of) then hugged her stroked her hair and kissed her on the head saying 'Aww you are so cute E' She then looked at me and said 'Mummy isn't she cute? Are you proud of me?' Not only did she look me in the eye as she began to talk she held my gaze the whole way through the sentence! This is a huge thing for us as S never gives eye contact. She tends to flick her eyes in my direction to see if I am looking and then look away or shift her eyes about a lot. I felt over come with pride. I got a huge lump in my throat and could feel my eyes watering. Not many will quite understand this but I can tell you it really was a lovely feeling to get that 2/3 seconds of eye contact.
Once E was in bed it was time to give homework a try (it had been unsuccessful the night before) As i went to fetch S's school bag I said 'Sit on the table.' She paused walked over to it and perched her bottom on the edge and said 'Do you mean like this?' 'No sorry at the table hunni on your chair.' I told her 'Well you said sit on the table.' she replied. After establishing I had said the wrong words we got homework done with only one tiny wobble and even had her read her book with no help.

Thursday we received a letter from the Director whom our letter had been passed to. In it he wrote he had spoken to the Clinical Director for Paediatrics and the Clinical Director for CAMHS, it has been agreed that CAMHS will offer S a second opinion and we will relieve an appointment from them. To say I was happy would be an understatement, I felt like doing summersaults and screaming the good news from the roof tops. I decided that on second thought this was perhaps not the best idea I had ever had, as I cannot even do a hand-stand never mind a summersault and I may well get sectioned for screaming babblings from a rooftop.
I went to collect S from school to find she had all her happy stamps (which means she hadn't pushed, pinched, hit, snatched or touch another child inappropriately ALL day). Which was another thing to keep the smile on my face.
As we walked home a council worker was driving his big tractor looking grass cutter along the path, towards us, cutting the grass along side it. Skye grabbed my hand and tensed. I told her it was ok because he had stopped to let us by. We just got past with ears held when she froze 'I don't like it mummy. It's scary mummy. Too loud, too loud.' I told her if we kept walking we'd soon be away from it. She kept looking back and then screamed 'MUMMY' she was rooted to the spot and grasping at me and looking very scared 'Mummy it's coming back.' I told her it wasn't. I was wrong as I looked back again it had turned around and was slowing coming back in our direction. 'Mummy it's coming back.' I tried in vein to get her to keep walking to get away from it but she wouldn't budge 'Mummy it's coming back'. I picked her up and walked as fast as I could with a 4 1/2 year old lanky 3 stone child scrambling up me. Crying and ranting on about the grass cutter. I sometimes amaze myself the distance I can walk like that as at the time I feel  so weak. We got over the main road and I noticed the grass had been cut and used this to explain they wouldn't need to cut that grass and she walked for the last minute home (after being carried for 5!) She was still talking about it when we got home and, as she always does, was looking around the kitchen and noticed the kiwis on the side. 'Why have you got plums? I don't like plums. Why do you keep buying plums?' I waited for her to stop to tell her. 'They are not plums. They are kiwis. You do not have to eat them. We have other fruit.' She then clapped eyes on a little chocolate egg I had got her to share with her sister and went on a rant about how she needed it (not even knowing what it was).
Again when upstairs S just lay on her bed staring. This time I just popped her clothes on her bed and left her alone. After 20 minutes she came downstairs and cuddled into me. I noticed she had raised skin that looked very red on her hip. I had noticed a tiny area of skin like this on her legs in the morning but thought nothing of it. I asked her if I could look at her stomach and she had the same rash on it and her legs were now covered in it. First thought was the glass test. I could still see the pattern of the raised skin and decided instead of consulting google I would go straight to the doctors and ask to see the nurse (I knew if I called I would be fobbed off and I was taking no risks). I asked S if the rash hurt and she said it was itchy so I said 'Well we are going to go for a little drive. We will go to the doctor. Get him to have a little look at it.' She seemed happy enough to do so, as long as iggle piggle could come.
We were sent to the nurses when we got there. I  had literally just sat down and warned S that the nurse may need to touch her to have a look when we were called in. The nurse looked at it and then went to get another nurse to have a look. They both said it looked like she had rolled in nettles and were really unsure what it was. They asked her Dr and when they saw he was no longer in the surgery my heart sunk a little. There is a doctor at our surgery notorious for brushing serious illnesses under the carpet (how he has not been struck off do not know). Luckily they said a different Dr and said they would go speak to him. We had a bit of a wait and S was beginning to get very fidgety and wanted to look at everything in the room luckily sitting on the observation bed had just held her concentration as he walked in. He was very lovely and apologised for the wait. He took one look at the rash and said 'Yes that is Urticaria.' (also known as hives) he asked the nurse if she had seen it before and then went on to explain it was an allergic reaction. We were sent home with a prescription. Luckily Piriton 'tastes like toothpaste' so we won't have a repeat of the performance we had last time she had antibiotics (yes I am aware piriton is not an antibiotic).
Later I let S pick something to watch, should have known it would be Thomas and the Magic Railroad! Just as I finished putting E to bed I heard the ending music and knew I would come down to find S upset. S never reacts to sad things happening in a film but, for as long as I can remember, she always cries when a film ends and it takes a long time to calm her down. She kept asking to watch it again and wailing when told no it was bed time. We finally reached and agreement that she could watch Thomas again on film night (which is every Saturday, where she gets to watch her latest favourite film AGAIN, and I get to have almost an hour of cuddles, until she starts to sensory seek on me and I have to be replaced by a large soft toy).

Today we have again had all 4 happy stamps in school.
S's rash comes back when near time to take meds but it is far better each time.
This afternoon we had to sit in half an hour of traffic to get S to Orthotics appointment, in and out in 5 mins and back into another half hour of traffic! Oh the things us mum's have to endure. S started to rock on me while at the appointment and do some loud throat stims, she didn't really speak in the car. As soon as we got home she was jumping about and charging into things so needed time in her room to unwind. Other than that not much to report today. S is happily settled in bed with far too many soft toys and Piggle and I am chilling with a cuppa and some lemon cake ready to take on the weekend.

Trundling along

So since the ADOS test I have been finding it very difficult to get my head around what is next. We were very much left in limbo and it appears all support has just stopped. OT stopped seeing S end of term and no indication of if she plans to see S again or review her case at any time. No planned meetings/ assessments with Paed or EP have appeared and I believe S has been filed under 'done all we can be bothered to do for her so we'll just trail them along in our system a bit longer, until the parents get bored and drop it.' I have been feeling very glum about it all and mulled about knowing I will have to fight some how but totally unsure on how or where to even start. I even started to doubt S was ASD.

I shut off from the world and became encased in my own despair at what was happening. I suddenly didn't know how act around S again and got strict reprimanding her for things an NT child would know not to do and right on cue she rebelled and proved I was being silly to doubt my mothers instinct. In the week after the ADOS test I saw the most violent behaviour I have ever seen from her. The slightest knock or trip resulted in S screaming loudly, mouth wide she suddenly seemed to forget how to breathe and in a complete act of fear she would run to me throwing herself face first into my chest . On one occasion she scaled the sofa to get to me and was intercepted by hubby, who in the chaos received a set of teeth into his shoulder., then S threw her head back narrowly missing her little sister and head-butted him. I too got a set of teeth in my skin and many head-butts that week. It was awful to watch her this way and I tried desperately to drag myself out of this state of self pity and get on with helping my daughter, cabin fever wasn't helping! We went to visit my sister and S seemed so much happier to be out of the house. That day the over stimulation of two toddlers and the excitement of seeing her two aunts got S to a point where she was very hyper and needed to be calmed. Why I didn't just take her upstairs at the first signs of over stimulation I will never know, but after being kicked and hit over and over I scooped her up put her in her cousins room and gave her every soft toy in sight. She soon calmed down and even asked to stay there a while longer.

Easter sunday the rain poured and we decided a trip to the country park was no longer an option I dreaded telling S but had pre-warned her that we may not go if it rained. She sat sadly on the sofa totally uninterested I then clocked a leaflet for a steam railway nearby and after showing S the website and lots of youtube videos we were soon on are way for a ride on a steam engine. That grey day turned the holiday around and fun was had by all.

Tuesday I took S to a football course put on by surestart. We were going to go as a family but hubby was not so keen so I decided S would benefit more from it just me and her going. The group was small so it was ideal for S The instructor was really good.  He did not push her too much and gave a great amount of praise when she did something. S really struggles with her co-ordination and motor skills and often refuses to try new things for fear of being no good at it. She joined in happily for a good 15-20 mins. After this she had started to feel quite challenged by the activities and was no longer taking the gentle persuasion to carry on trying. I could see the stress building so asked if she would like to get a drink and sit and watch for a while. we sat and watched the other two children and the instructor did a few times ask if S wanted to try but got a firm NO. Towards the end S was becoming a little frustrated with herself and wanted to score a goal. The instructor turned towards her and asked if she would like to have a few shots at the goal and try to get a smiley stamp. After being told she could stand near the goal and that it was just her and the goal (no other children) she was encouraged to have a go. I felt a huge swell of pride for her as she kicked the ball into a net from about a metre away. We had a small wobble when she missed but instructor quickly got her back on track. She got her stamp and I watched her face light up when he put the backs of her hands together, said 'abracadabra' then pulled her and hands apart to revel she now magically had 2 happy stamps!

The rest of the week rattled on and we even managed a food shop as a whole family. It was not totally stress free but S managed pretty well thanks to being slim enough to still sit in the trolley (despite some dirty looks for doing so). Friday morning I left for the weekend and S even came to the platform to see me off she even coped well with the noise from the trains with Mummy cuddles and cupping her hands over her ears...maybe there is hope that one day she can get to this point with hand dryers. The break was nice and it sounds like S had a lovely time with her Daddy but I did miss her an awful lot.


I'm now feeling a little more at ease with what is going on and doing as much research as I can. I am am now certain S has Aspergers (AS) which is harder to diagnose as many with the syndrome can appear so 'normal'. It is also far harder to diagnose in girls as it presents itself so different. Many girls fly under the radar until teen years, well into their adult years and in many cases go completely undiagnosed. Statistics related to diagnosis show the ratio of boy to girls with AS are 10:1 yet researchers have found these to be more likely 4:1 due to under-diagnosis in girls. Dr Tony Attwood even believes the ratio is more like 2:1 (see video linked at the end of blog). Armed with this knowledge we now understand it is time to roll up our sleeves get ready to fight for the diagnosis that will give us extra help for S, will mean we can stop having to analyse our daughter all the time and to give us an explanation the next time S queries why she is different. I'll keep researching and am eagerly awaiting the delivery of 'Aspergirls; Empowering Females with Aspergers Syndrome' hoping it will be as good a read as reviews say.

It is sad to read that so many families get fobbed off by professionals for years but I am determined this is NOT happening not to MY child we will not sit at home and quietly await another appointment where we are talked down to and made to feel like we don't know our own daughter. We have already sent the first, in no doubt a long list of letters, to insist our Paed is changed and we get a referral to CAMHS.

S is back at school this week and seems really quite content. When I picked her up wednesday teacher told me her coat was soaked as she had stood under a dripping drain pipe. When I asked why I got 'I was having an outside shower.' On seeing a sad face in her kind-hands book with the words 'throwing sand' I  decided to try explain, yet again, why she shouldn't.. I was met with 'but it is all sparkly'...'yes but it could get in someone's eyes and hurt them. You could try running it through your hands like this.' ...'but it's rubbish that way, it doesn't look like fireworks.' How do you argue with that logic? I just grinned to myself and ended the conversation with 'I know it looks good honey but you really can't do it in case it hurts someone. Look at that flower can you remember it's name?'

Dr Tony Attwood on aspergers in girls.

Coming back fighting.

S had her ADOS test on Monday. When we arrived paediatrician told us that after the test they would discuss the results for approx 30-40 mins and call us back in. She asked if I would be in the room and I insisted I should be as on preparing S for the day, which in hindsight may have not helped the results, she had got a bit worried about me leaving her alone. The Educational Psychologist (EP) was just behind us. We went into the assessment room and I took a seat in a corner as far away from the table with all the toys as possible. Paed said something about a trainee. I said I didn't mind her sitting in.  She glared at me, as much to say I wasn't asking your permission, mumbled something then wandered off to get her. S kept asking when can we play wit the toys (which I had told her we would). Finally everyone was in place the test was set to begin.

The Assessment (may not be in the exact order the test was in.)

EP asked S to come sit at the table with him. He tested a toy rabbit that jumped when a button was pressed by foot. S jumped up to go have a go EP said they would play with it later, S had gotten on the floor and was trying to press the button so EP moved the rabbit to the other side of his leg and asked her to sit at the table. 
S started rocking her chair and did this all the way through the test. EP reached for a bag with a piece of cardboard and some foam pieces. He placed the card in front of S and told her they were doing a puzzle. He handed her a few pieces and put the others just out of reach and placed his arm in front of them. S started placing the bits on the card self narrating, when she needed more she just said  'I need more!' She did not directly ask for more, make eye contact or reach for them. She was handed a few more and the same thing happened again. She reached a point where she said she needed more but there where none left. EP rearranged a few pieces and allowed S to do the last piece. This activity was packed away. 

   As S did this EP discreetly moved the rabbit and then said her name. He then looked down at the rabbit and S did nothing just stared blankly in his direction. He then did it again with a slight head tilt still nothing. When he said 'look' and pointed she finally looked down and saw the toy bunny. S got down on the floor and was straight away trying to touch the button (attached to the rabbit by a wire). She did ask 'How do you make it go?' but did not ask if she could or look at EP. He left her to play for a few minutes while he wrote. S loved the rabbit and was reluctant to move onto next game but did so. 

EP set the scene he used his fingers to 'draw out' a sink taps and pointed to where a tooth brush and paste would be. Asked S to pretend to brush her teeth. She pretended to hold the brush and mentioned washing face after but forgot tooth paste use of taps etc. EP then got a towel and soap out lay them at the fake sink, reminding where taps and sink are, and asked S to pretend to wash her face. She pretended to wash her face and then picked the towel up and wiped on her face. Again didn't 'use' taps or soap. EP asked if she had missed anything and she had no idea. That whole part of test seemed to make S uneasy. She did not talk much was very hesitant and seemed very unsure of what to do.

There was a picture with lots of things on it put in front of S and she was touching things and saying some of the things that were there. I could see EP was trying to engage in conversation with her but mostly her reply was 'When can we play?' Throughout the assessment to EP tried to have conversations with S which she did seem to reciprocate but I feel mostly it was just when she could talk about herself. I don't personally feel if it wasn't so led he would have got as much 'chit chat' from her. 

EP handed S a bag with wooden doll house furniture in and asked her to take them out. S found a hole is side of bag and pulled them out when she came across a piece too big she said 'I can't get them out' EP helped to open top of bag and took several attempts to get S to use the top rather than the hole. He asked S about the various things and helped her lay them into a 'home scene' which she could do with a little help. He then took the 3 dolls (Mummy, Daddy and little boy), a dog, a miniature football, a silver disk (s called a DVD player) a fire truck, a rocket and another ball that was about the size of a ping pong ball that S said was a planet ball. EP engaged S in a little role play very lead by him but she did play along. She did however cling on to the dog and planet ball. When the EP wasn't telling her to do something that meant she couldn't physically do so she was pushing the dog against the ball squashing it into the table. S again seemed uncomfortable and a bit unsure of this activity. Despite playing along it did seem that she was very led by the EP. While packing this away EP put a shiny disk (S had called a DVD player) in front of S and said 'look at this and spun it' S response was wow and she spun it herself and was putting her face close to it as it spun moving away moving close etc. Until EP asked her to put it away. 

S had a bag of items tipped in front of her. Which included some blocks a few pieces of string (cannot remember what else was in the bag. .S kept picking things up and saying 'What do I do with this?' she started stacking the blocks, she made sure they were perfectly aligned. The side facing her were all white with a yellow border and yellow letter or simple line picture in them. S made sure each was the right way up. I do not think from where they were sitting EP or Paed could see this.S picked up the string and again asked 'What do I do with this?' she then placed it around the blocks and started twisting the string around itself over and over saying 'I'm tying a knot. I'm tying a knot.' EP placed a doll on the table made a noise so S looked up and looked at doll, again S didn't respond to this non verbal cue. 

EP then suggested it was babies birthday and they should have a party for her. The play, again, needed a lot of prompting from EP. They pretended to make a cake (went a little wrong as the dough had gone hard) and light candles etc. When asked S didn't know how many plates they would need once cake was cut. EP said baby needed feeding as she was only little and asked who should do it S replied 'I don't know.' He told her he had to do his notes and she still said she didn't know so he had to say she should feed her (S has never liked or really bothered with dolls). He sad baby needed to sleep but again S didn't really know what to do and just did as instructed. 

S was next offered a snack and a drink. The drink, to my surprised, was a fruit shoot which I was not too keen on but now she had seen it could not say no. S was offered a purple or orange bottle and touched the purple stating 'That's my favourite .'(we usually buy her purple ones if out for a meal out of habit). EP then placed the orange one in front of her saying 'Well I am going to give you this one then.' he swapped the drinks, smiled and said 'I was just doing a little trick there.' S did not react at all to this little joke.

Finally EP took out a plastic tub with some bubble solution in and a bubble gun. He did some bubbles and S was up hitting at them etc she did not seem to care one jot for his enjoyment of the bubbles. When he paused she would sit back down and carry on with her snack and ask 'Can I have a go?'. He kept saying no. After this happening about 5 times he answered 'No way.' S then said 'Why not?' EP replied 'Cause it's too much fun making the bubbles.' S just carried on with her snack. EP did let her have one turn. When she had her go she did bubbles right in front of her  not towards EP or anyone else in the room. That was the end of  the assessment. 

Throughout the whole test S looked towards me 3 times but did not try to engage at all, even when she was faced with free play and asking 'what shall I do with this?'

Feedback.

After about 30 minutes we were called back into room to discuss how it went. I was asked how I felt it went but feel it was more a polite question than them really wanting an answer. There was a short bit of small talk but I cannot really remember much that was said here. Except that the Paed was already beginning to ruffle my feathers by cutting me off. The EP told us that S had scored low and that we 'would not get a diagnosis today'. The rest of what was said is still very hazy as I was so shocked at being told she has scored so low. The EP talked us through S's scores. They were; 1 for communication (ASD cut off 2) and 3 for social interaction (ASD cut off 4). The EP seemed to talk about her traits but the paed seemed to try explain them away. One example of this was S's non existent eye contact, looking at EP through corner of eye and not responding to him looking towards objects, which the paed said may have something to do with her vision. Which is total rubbish. S has astigmatism and her vision is fine with her glasses on. Also her eye sight has improved over the last 2 years but her eye contact hasn't. When talking to them about things happening at home the paed kept talking about it being caused by her anxiety, no mention of why they feel she has anxiety so bad it effects every aspect of her life! I would also argue that aspects of her life cause her anxiety not the other way around! I did try to argue some points but got the general impression (as I have from S's initial paed assessment) that the paed is out to prove she is not ASD and seemed to be trying to dismiss a lot of what we said as 'normal' or with this daft explanations.  I do feel perhaps the Ed Psych is still open to it. Both myself and my husband feel the paed's decisions and opinions over rode the EP, just from sitting in the room with them for that short time. It was mentioned that S is very active a few times. My husband tells me that while I was taking S to the toilet they mentioned her flitting between actvities, to which he told them she does but can sit and play on a computer, her leapster or her dinosaurs for hours and be totally unaware of her surroundings when she does so. The paed changed the conversation very abruptly. To how 'He looks like he has just woken up' pointing to E sat on hubby's lap, whom I had already said had just woken when we first entered the room and who is in fact a SHE and was wearing a very flowery blouse and girly shoes grrr! (sorry off at a slight tangent there). 

The meeting ended after the paed had talked about things that could be done and rattled my cage some more. Things like 'Stop think do' (which the school already do). She mentioned a kind of place for S to sit with some sort of walls despite both us and EP saying this would hinder her social development, she brought it up again right before we left. She spoke about having firm boundaries for S the way in which she delivered, and in fact that it was even bought up, came across that she thought S must not have these. Which I can only take as my parenting skills being questioned or S perhaps being thought of as a misbehaved child. My husband asked what next and EP assured us they were not going to just disappear. EP would still be working with the school and paed wants to see us again in September although gave no indication as to what for.

No mention was made of the repetitively squeezing the ball with the dog. Nor was her rocking of the chair throughout the whole assessment mentioned. EP did touch on this being one to one with an adult not with children. I feel Skye can interact far better in a quiet room, one on one with and adult (rather than a child) which all screams aspergers to me. This way of assessment (the only way paed has EVER seen her) does not show a clear picture of Skye.

Feelings After the ADOS test.

I was left feeling very upset, confused and negative. I found it hard to take in all that was said and still cannot remember the exact flow of conversation 2 days later. The paed talking on and on about how we need to make sure she knows her boundaries really stuck in my head. It left me thinking 'Great! Even the Dr thinks my child is just naughty what hope do I have now?' I felt a lot that was said was wrong and very frustrated that I have a lot I wish I had said but didn't. I felt the test would have shown totally different results if S had not been having a really good day. I felt like the last year of assessing my child has all been in vain as every time I argued things that I felt were wrong, they seemed to try to write it off. I was very distant and short tempered for the rest of the day and once the kids were in bed and my husband was at work I cried. Why was I crying? Surely I should be happy my child is not ASD? I would be if I wasn't so sure that she was. So I started research.

My Plan of Action

• Try to get a different Paediatrician as I genuinely feel she is no good for S. Because 

1. She seems to always be asking questions then disregarding my answers. 
2. Thinks isolating my child is some sort of solution to behaviour problems at school. 
3. Clearly over rides the EP's opinion of anything. A 'team' of two professionals where one very much out weighs the other is not the best way forward.
4. Has never seen S in any other setting than the room in which she saw her today.
5. Makes assumptions based on medical conditions of S's she has not sought further information about. (ie her eyesight).

• Build proof, by specific examples, of Skye struggling with communication. Which they say she did well on! Despite her sometimes conversing with the EP during the test I feel it was very led and only when he mentioned something she had done and could remember that she cared to interact and ever then was not interested in his side of the conversation just talking about herself. 
• Find proof S is not ADHD which due to mention of over-activity I researched and am very sure does not fit her at all.
• Compile a list of other odd characteristics. 
• Prove use of delayed echolalia. 
• Try to get back-up from school where possible. 
• Generally keep notes on anything else that may help prove what I, S's mother, have felt is going on with my child is real and not just in my head. 

I know it is going to be a long hard fight. I know there will be days like Monday that crush my heart. S cannot fight this battle. I have to do it for her. I love her so much and want so desperately for the world to stop seeing that naughty label they like to slap on her. I want them to see the beautiful, clever, amazing, fascinating, funny, bubbly, quirky and most of all totally loveable little girl that I see.

From now on I have a new motto in life (courtesy of the wonderful Dr Seuss) .  

I have heard there are troubles of more than one kind.

Some come from ahead and some come from behind. 

But I've bought a big bat, I'm ready you see.

Now my troubles are going to have trouble with me!