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!