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!

ADOS test tomorrow

Tomorrow S has her ADOS (Autism Diagnostic Observation Schedule) test. We have been told it will take 45-60 mins and that Ed Psych and Paed will then discuss it and previous observations etc for an hour and we may well get feedback the same day. I'm still feeling really anxious about what will happen, how S will feel about doing the test and what the results will show. I have to prepare myself for a potential diagnosis but at the same time have to prepare for them deciding they need to do more observations. What a rollercoaster ride of emotions I have ridden this last year. We may well be about to start a whole new chapter in our  life.