Adult Diagnosis

Also posted to Aspie Women Speak on 27th May 2014

A week ago I sat in a room with my Psychiatrist and listened to her tell me that she agrees that I fit the criteria for Aspergers Syndrome. I can’t remember much of what was said after that because all I wanted to hear were those words. I had spent months leading up to that day. From the moment I told my husband I was going to seek a diagnosis to the day I visited my GP to the day I had an assessment. I still thought I was wrong and I was somehow broken by a life of disappointment and rejection from others. Leading up to my feedback appointment my nights were filled with panic attacks and little sleep.

I was so full of panic thinking that I may be told that I am not an Aspie that I hadn’t prepared myself for being told that I am.  I thought I would feel a total wash of relief and vindication and that I would stop hating myself for all my flaws. Instead panic set in. I could only see all the mistakes I had made, all the misjudgements and all the time I had felt so totally alien to the rest of the world. I dreaded the rest of my life being just the same. I felt total despair at the sheer misery I feared lay ahead of me now that I realised I couldn’t be ‘fixed’.

One of the misconceptions of autistics is that they do not want friends and are happy alone, don’t get me wrong a lot of Aspies enjoy their own company and I do too, however that is not the same as the loneliness imposed on so many of us. The loneliness I feel when I sit in a busy room and I do not now how to join in or start a conversation, when I see others going to events I am not invited to, when others laugh and joke and I never seem to be in on the joke but worst of all the loneliness I have imposed on myself because years of rejection makes me back out of chances to make friends.  That loneliness is the thing I fear most for my future.

It is so hard to look ahead and not be afraid, yet to deal with fear I try to plan ahead. For now I have to try to live in the now and not allow my thoughts drift while I try to find where aspergers fits into my life.

Diagnosis, statements and finding the right school

     I have tried many times since the summer to blog about S's progress but have found it too painful to put it in words. Luckily things seem settled and positive right now so this is the perfect time to reflect on how far we have come in the last 7 months.

   
    In early June we were given a statement for S and we needed to pick a provision. We chose a school we thought could meet her behavioural needs (given that she didn't have a diagnosis). A few weeks later as we were due to sit down with her Psychologist and the deadline for the schools response had passed I chased the LEA. We were told the school could not make a decision without knowing if S had an ASD or not. Luckily we did not have to wait long as 2 days later we were told officially that S has Atypical Autism. We explained the situation to psychologist and the very next day we collected the report (almost a miracle for the NHS) and handed a copy to the LEA whom forwarded it to the school. Again we had to chase to discover that because the statement was amended the school could have a further 15 working days to reconsider. After some digging we realised the new diagnosis would mean the school would not accept S. I was sick of waiting knowing the school were just sitting on a question they knew the answer to. I tackled the matter head on and called the head teacher to get the no we knew was coming. We then named a second school which could most certainly meat S's emotional needs but we knew deep down may not challenge her academically. 2 days before the schools broke for summer we got our second rejection.

     My heart was in bits. How could so many people reject my daughter? Why could nobody educate our clever girl? I was also panicking because I knew she could not stay in the school she was in. Her self esteem was at rock bottom and the stress of back and forth to school (s had to come home for lunch) with a child who beat me and screamed while hundreds of parents and children stared at us was taking it's toll on the whole family. To add into the mix in year 2 not only would S have a new teacher to contend with but the children in the class would be different. I did not want to home school S as I found the prospect too daunting of a task and was still hopefully we would find a school.  Finally I spoke to someone at the LEA who had actually used their knowledge of local schools to try to find a suitable provision for S. I was given the name of a school about 10 miles away that may be able to meet her needs. I called full of hope and was told I would get a call back. Summer began with no reply. I had informed S's school that she would not be returning (despite being informed by the head that legislation was rather shakey as S had a statement). I didn't care I was willing to take on the LEA because it was unfair to expect S to stay in a school that could not meet her needs and cope with the huge transition into year 2 to be moved a short while later.

     We spent the whole summer in limbo we had no idea what was to come. Just before the schools re-opened we finally spoke to the potential school and arranged to go see it. It seemed right for S. She would be based in a unit within a mainstream school. Her class was made up of children with 'high functioning ' autism and she would have access to inclusion with year 2 children in mainstream. We took S to see the school and she seemed to love it.
Finally we had a place for S. On her first settling in session she read to her new teacher...something she refused to do at her former school! Her teacher was amazing with the settling in and eased my nerves about leaving S. When the day came for S to be picked up by a taxi for her first full day at school I was an emotional wreck but as the weeks and months have passed I have becoming more and more convinced that in the long run we got it right.

     S regularly comes home with prizes and certificates for her hard work and settling in so well into school. Just before Christmas I sat in a prize giving assembly and watched her new teacher and head talk about how much she has impressed them and how well she is liked by her new class. Even now I am welling with tears at how happy it made me to see her stood there looking so proud of herself.
She will soon begin to take numeracy classes with her year 2 link class and sometimes go out to play with the mainstream students her age, at her request (she told her teacher she misses girls as in her class she is the only girl). 

     It's so hard to stay optimistic as a parent as you win a battle just to be forced to begin another. All the fighting and waiting and uncertainty often brings me to my knees but I have no choice but to pull myself up and carry on. I am a mum and that is what we do for our children it is our job to help them get the best from life and if that involves a fight well then I have the greatest weapon at my side, the strength of love I have for my daughter, it's the strongest force I know.

Waiting...

As I look back on the journey we have travelled so far with S the thing that bothers me most is waiting. Much like S I cannot bare waiting. It does not matter if it's for something small or something huge, something good or bad but waiting is the thing that brings me closest to giving up. Parents of children with additional needs have to do so much waiting. Not only is it an inconvenience but it allows you time to think. You plan for the worst, and that can really get you down, then you try to hope for the best, but that too can bring great sorrow when those hopes again are dashed.

When S was first referred to a paediatrician we had our first wait. We had to wait for a panel of strangers to decide if our child deserved to see a paediatrician, if her problems were significant enough to need further investigation. As we waited I allowed myself to wonder 'What if they say no? Would that mean I am just a bad mum? What then? What do I do with my child who won't adjust her inappropriate behaviour no matter what I  try?' I also hoped they would say yes, because that would mean it isn't my fault, these people who will never meet my child think there may be a reason she acts how she does, and it isn't me. Then I got to thinking that if they say yes that means something is wrong with my daughter...something wrong with my baby? How did I miss that?

So she got a yes and we waited a few more months to see the paediatrician and then a few more after to see various professionals, the appointments dropped through the door and the months between did not seem to drag too much. As December snuck in I started to think more about S's behaviour and her little quirks and one day I googled 'Aspergers' and suddenly I started to see my daughter. I googled more and more, I even went to the library. The more I learned about not only Aspergers, but the Autism Spectrum, the more my world started to change. I started to realize S had more quirks that I had not even registered as a little odd. That month everything changed and suddenly waiting started to really pain me. I needed to know if my new found knowledge was giving me an insight into why my 'easy' toddler was becoming an awkward volatile preschooler. I needed to know if I had missed something that could potentially change our lives forever. I needed answers and I needed them now. 

Unfortunately the NHS does not cater for urgency as I was soon to discover. After meeting an Ed Psych in January, we learned of a test they could do that would help them to decide if S's traits pointed towards Autism. We waited to hear when this test would take place. I grew impatient with no contact from anyone and no idea who I was even going to hear from next. I started to look for knowledge and understanding elsewhere. I talked to other parents, in a similar situation. I continued to piece together what I understood about ASD and found more and more pieces that fit S. I asked questions on internet forums and joined Facebook support groups and it all seemed to fit. I tried to call the Ed psych to find out when this test would happen. I then read a post about an ADOS test, this sounded very familiar to what he had described and I was still waiting, by this point it was March and I was beginning to get very frustrated with the lack of contact. Waiting is hard enough but to not even know how long you will be waiting is just excruciating. I finally got a call just weeks before to say S would have her ADOS test on 2nd April 2012. 

I foolishly built high hopes this test would give us the answers we needed and I was wrong. Turns out the ADOS test and S's paediatrician were not at all helpful. We then complained about the test and paediatrician and got into CAMHS, unfortunately we were not seen again until June. As all of this happened some of S's behaviour was becoming harder to handle at home and school she had almost got through Reception year as all this happened and the help she could have had, SHOULD have had was about to set her up for a terrible fall when she left the comfort of reception year and the trusting relationship she and I had built with her teacher. 

As S stepped into year 1 (her 2nd year at school) we started to hit hurdles which I wrote about in an earlier blog, Calm After The Storm. By  Christmas S had started to become a real cause for concern in school and they had started to get others involved and looked to be headed towards a need to apply for a statutory assessment.  We were growing tired of the lack of communication with the school, CAMHS were trailing us along and I had really reached breaking point. Enough waiting for others to pull their fingers out. My daughter was in desperate need for help and everyone was failing her. As her mum I have a job to ensure that doesn't happen, so myself and daddy devised a plan. We got stern with CAMHS and were assigned a case worker, we made a parental statutory request and we wrote a letter of complaint to the school.

It is now March and despite various meetings and observations CAMHS have yet to give S any form of help with her anxiety. Just this week I had to put on my battle gear and fight for a planned meeting to not be cancelled due to one of two staff members being off sick.
On the school front I now have to bring S home for lunch but she has full 1:1 and despite a few wobbles she is starting to re access  the curriculum (after a few months of completely refusing to work) and her statutory request has been accepted.

This month we have plenty of meetings to attend but where they will lead is anyone's guess. Will the next meeting with the Dr at CAMHS mean a diagnosis? I highly doubt it! Will it even go ahead? It has already been postponed once and it wouldn't be the first one to be cancelled last minute. If it is not a diagnosis? Where will we go from there? How long will we be waiting for that?
Despite a yes to statutory assessment we could still get a no to a statement, or a statement we are not happy with, which we would have to appeal! We have to decide where S should be educated. Can her needs be met where she is? If not where?
On top of all that, despite it being glaringly obvious S needs a lot more care than your average 5 1/2 year old, we have to wait for someone sat in an office to decide if we can have DLA to help us provide S with more of the things that could improve her life.

Some of these waits will bring even more waiting, some may bring good results some bad but in the meantime we have to trundle along and try to stop anyone making our waits longer, all the while doing everything we can to fight S's corner so she gets the help and support she needs as soon as possible to prevent her needing more and more later on in life. 

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!

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.

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.

Realising quirks may be something more.

I have decided to write this blog to give a Mum's view of the ups and downs of a child suspected of having ASD (Autism Spectrum Disorder). We are just 3 days away from an ADOS test (http://en.wikipedia.org/wiki/ADOS), for my 4 year old daughter, which I hope may give us a diagnosis and help ease some of the self doubt I feel. 

 Here is our story so far:  

S was born August 2007. Birth was normal, 4hours of labour no complications, just gas and air for pain relief. I developed PND and a lot of our life was spent inside just the two of us. I spoke to her all the time and she loved to sit in her rocking chair, from an early age I remember that when upset she found being sat in her chair being sang or spoken to much more soothing than cuddles. Everything seemed to be developing fine and the only thing raised at her 9month assessment was a slight turn in her eye, which was referred but could not be fully investigated until she was around 2 years old.

S did not start crawling until she was 11 months, we were not too concerned as she seemed advanced with her speech and had a huge vocabulary. By 18 months she was showing no interest in walking and started to knee walk. She was referred to have her legs and feet checked and found to be hyper-mobile and have flat feet. By 2 years she would only walk holding someone’s hand and resorted to knee-walking if let go. By this age I was saying 'It's not that she physically can't, something is scaring her.' A month after her 2^nd birthday she was diagnosed with astigmatism and given glasses. A week later she was happily walking alone. S is not a climber and really struggles with park equipment. It takes a lot of encouragement for her to try climb a new thing and a small set back can resort in meltdown and her refusal to try again for some time. Even when she has cracked something when we re-visit she may take a while to rebuild that skill and if it has been a long time we have to start all over again. This is true for many of her skills, not just climbing, she is very afraid of not doing something perfect the first time around and very reluctant to try new things.

S took a long time to potty train and was not fully toilet trained until she was 34 months old. She is still not dry at night (despite two lengthy and stressful attempts) as she sleeps too heavily to be awoken by a saturated bed! Training was not helped by her huge fear of hand-dryers, I try to use disabled toilets if they are unlocked and free as she gets very upset at even the thought of one going off. She will waffle on and on the whole time we are in the toilets about someone setting them off, and if they are set off she will cover her ears and it is very hard to get through to her, we have to stay in the cubicle until they have stopped. I carry hand gel now and always tell her we can use that and leave as soon as we are out of the cubicle but public toilets are still very stressful places for her. She is also scared of hair-dyers, vacuum cleaners and loud vehicles (including emergency vehicles).

S did not socialise much as a toddler. I did try to take her to see friends with children of similar age, but due to my on going battle with depression it was not as regular as it perhaps could have been. I did try a local mum's and tots but due to the cliquey nature and the mums not watching their children I stopped going. S displayed a few things that looking back could have been warning signs but I put down to her lack of social practice. She snatched things, would cuddle and not seem to understand when to let go, hated when another child hugged her. She would group toys and carry them around, for example all 3 of the fairys, both iggle piggle toys. If she put one of these down and someone picked it up it would cause mass upset. She wasn't happy with one each she needed all of those toys in the group. Her soft toy collection is where this behaviour showed most. An example of this is she has a lemur toy that when she chooses to have she has to have the smaller one too and will not settle until she has them both (she still does this today).

 Despite the things I have mentioned S did appear to be a very happy child and we often thought we got lucky as she seemed to miss 'the terrible twos'. She is also very bright and can talk very well, although her speeche seems very formal and almost too grown up for her. She knew all her colours by 2 (a skill not expected until 3) to name but one example.

In July 2010 I gave birth to my second daughter (E). S really struggled with her crying and stood holding her hands over her ears. She often asked if we could put her back in my tummy. She didn't seem too bothered at having a sister nor did she ask to hold her. S turned 3 that August and then started preschool 3 mornings a week in the September. It is around this time that her behaviour became challenging. Back chatting, hitting out, tantrums. She was also having problems with her peers and the preschool could not get her to sit for story time. She did not seem to make/ keep friends like the other children. She would hit out or touch other children, she did however really enjoy and look forward to preschool. We put her behaviour down to all the changes going on in her life and the settling issues down to her lack of social interaction prior to preschool.

 By April 2011 preschool was becoming really difficult, S was still hitting out and the preschool described her behaviour like a switch clicked and that was it they could not reign her behaviour in. Parents would stand around gossiping about her (within my earshot) and the general atmosphere was awful and very distressing for myself (I have since learnt all the mum's had a meal and Skye was brought up in a very negative conversation, how mature of them!). After speaking to the preschool and discussing how we were talking to S about her behaviour and doing all we possibly could that it was decided it was best we go speak to the Health Visitor. The HV agreed to go and observe her in preschool. She told us she found S 'fascinating'. The way she spoke was very interesting and her interaction with others was enough to want to come and do an assessment at home. This assessment scored Skye at 3years 10 months (her age at the time) however when looking the areas it showed that intellectual areas such as language she scored 5 years! However she only scored 2.5 years for social and self care! She was then refereed to the community paediatrician. The way it is done here all referrals are sent to a panel who then decide if it needs further investigation. This wait was extremely hard and I worried that if they threw it out it would mean I was failing as a mum. She got through and was seen in September 2011. Below are a few things the paediatrician reported:

• Says she doesn't have any friends (she had just started school then, but she still says this now).
• 'Has well developed receptive and expressive language skills, often using quite formal and advanced vocabulary.'
• was keen to talk but mostly about her own activity.
• Did not ask questions or show things to adults
• reluctant to engage in eye contact
• 'tone of voice was rather flat and lacked variation.'
• 'gross motor skills are immature'
• 'appears to have motor coordination problems, some sensory issues and some rigidity'.

 S was then refereed to physiotherapy, an occupational therapist and an educational psychologist. She saw the physio beginning of December 2011. They were generally happy. Have given a few exercises to help her balance and coordination, they have asked to see her again in 6 months and referred to Orthotics. (who have given her insoles to stop her rolling her feet inwards).

We saw Occupational therapist in January 2011 who decided to start 1 x45 minute session once a week in school to help with S's bilateral and upper limb coordination and her fine motor skills.  .

Educational Psychologist met with us at the school in January 2011 and we sat with him and the school SENCO. As soon as we sat down he started talking about autism assessments. At this point no professional had mentioned the word Autism so it was a bit surprising to hear, relieving all the same. From what he had already read he was thinking that is what they are expecting to find, talking to us very much cemented his suspicions. He then went into S's classroom and observed her for 2 hours. 8 weeks later after calls to get an update we were informed S would get an ADOS test 2nd April 2011. 

In school S snatches and has problems sharing. The school are using a 'kind hands' book with rewards all her stamps in the morning and again for the afternoon.This is working some days but not others. They have her holding a weighted ball when standing in lines to stop her fidgeting and hitting/ touching others. This is very effective. She also does sensory activities with the TA.

A few other things that I feel may be indicators.

• Lack of concentration
• She still very attached to her iggle piggle toy rubs the felt bits on his head against her lip as a comfort.
• She doesn't sit still.
• Often makes a groaning type noises.
• Will grab someone’s face to get them to look at her and interrupt conversation.
• She 'gets' that hitting means time out but now exactly why the time out happens.
• Finds it hard to deal with change of plans
• Is scared of the wind and rain .
• Sometimes switches off and cannot seem to get her to listen
• Reacts to sudden noise (an example of this being banging noises from next room made her freeze and cover ears at the OT).
• Tendancy to go into what I refer to as meltdown over rather minor things.
• She plays differently to other children, grouping toys for example.
• Repeats things she has heard on films a particular favourite was saying 'Hey lazer lips. Your mama was a snow blower.' (short circuit) She remembers song lyrics after only hearing the song once or twice.
• She can remember minute details from some time ago yet not remember her actions from that day! For example seemed to forget she had hit out loads of times one day at school. But could remember not only that she had a kitkat in her lunch while on holiday 9 months ago but that it was the same day we visited the dinosaur park! 
• She 'sensory seeks' by leaning and climbing on people, likes to touch things, 'shouts' and hums and just recently bites strange things...like flannels, the kitchen surface, tops.
• Anxiety over very minor things.

So yeah that's S's background story.