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.

When the Future Seems Terrifying.

I have always been so proud of how intelligent S is. She is one of those children that once you engage with you can see she has the brains to go far. What happens though when something stands in the way of that potential? This is something that is becoming more and more of and ongoing worry for me. S is 5 years old she is in her second year in school. S was following her classmates progress wonderfully and even showing that beautiful intelligence  Just recently though something has stopped that progress. S appears to have just lost the ability to learn.  She clearly has fine motor difficulties and the ever increasing amount of written work is no doubt a great cause for anxiety but this is just one thing among many others, some of which even I as her mother do not fully understand.
S has always been a perfectionist. If she tries something and it isn't perfect she cannot seem to grasp that it is ok. It's not ok in her world, if she didn't do it right she has failed! That is it, a simple right or wrong. S hates to be wrong so increasingly she refuses to try. She is so scared of not meeting her own high standards that she just cannot try. This is so frustrating to everyone around her. This is also where S's intelligence becomes her worst enemy. S at 5 has become the queen of avoidance. She has one strategy that seems to send everyone reeling and leaves a huge group of adults feeling helpless and very worried for what the future holds, if they cannot find away around it. What S does is she simply shuts down. What others may see is a very different picture, it is what is making the fight for diagnosis so much harder. Before I describe what happens I want to say this is a very hard subject to write about because as a mother this is the time I feel completely helpless. I feel helpless because despite knowing that my child is in fight or flight mode (that adrenaline feeling you may get when faced with real danger), despite knowing my child's behaviour is screaming 'I cannot take any more', despite knowing this is nobodies fault and blame and judgement will only worsen things I cannot help but live the negatives. My child is out of control, my child may hurt someone, my child may lose more of her education, my child may stop learning all together, my child is suffering and I do not know how to help her. I am failing my child.

Screaming, repetitive noises, humming, growling, coughing, words that make no sense repeated again and again, giggling, 'I won't do it' 'NO' 'Shut up'. These are just some of the things you may hear. If you were to look you would see is a flash of blonde hair running back and forth, spinning around and around, people and things being crashed into, things being thrown, knocked or pulled down. You may see one or two maybe even 3 people trying to contain this whirlwind. If you watch them closely you will not see anger you will see confusion in the looks passed between them, begging each other for an answer. You may hear the odd few words but they know they cannot bargain because they will not be heard. Once that chaos stops it just stops. There is no slowing down it just stops. All is calm and you may wonder what stopped it, as too will those who were trying to contain it. What you just witnessed is my daughter shutting down. Her ability to function was totally lost, and that is exactly how she copes with the stress of things she cannot control.
That is not a 'naughty girl'. She is not wanting something in particular quite the contrary she just needed something to stop.

Recently it also become apparent S suffers from her senses not working like most and not just the 5 you learn about at school. Her proprioceptive system is not working correctly. You may not have heard that word before so I will explain briefly, a better explanation can be found here, this is the sense of where your body is in relation to the rest of the world. Think of when the dentist numbs your mouth and you poke and prod it because the sensation of numbness really bothers you, this is what S's body is going through a lot of the time. This is why she can't sit still, why she touches things, bounces and spins. She needs to feel her body is there.
Add all of this into the pot and you are left with a child so overwhelmed it is no surprise she becomes this whirlwind.

All of this and still everyone battles to understand her and we struggle to get definitive answers. Answers that could be our passport to help and a little more understanding. While I battle that helpless feeling I have to constantly tell myself that I cannot get bogged down with a multitude of worries. I cannot look to the future with despair tinted glasses, because if I do I will lose the fight. I have to take each day as it comes. Celebrate each little victory and be thankful I got through another day. I shall tonight for the first time go to sleep proud of how strong I have become and how much I have learned. Tell myself I won another battle and not allow myself to be afraid of tomorrow.

Calm after the storm

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

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

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

Summer Holidays and Back to School

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

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

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

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

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

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.

04/03/12- Realising she is different.

Every night after her bedtime story S quizzes me on what day it is tomorrow and what she has going on etc etc. Tonight's conversation totally shocked me. 

S: What day is it tomorrow?

Me: Monday

S:Do I have school tomorrow?

Me: Yes sweetie

S: Oh...but I don't like school.

Me: I know you don't baby but you have to go t....

S; But there are too many children there

Me: I know baby but you have to go to sch...

S; but I get so nervous

Me:it's ok to get nerrvous but think of all the fun you get to have.

S: but I don't...Not like the other children do.

Me: Oh....well...you like the dinosaurs there. Those dinosaurs are so cool at school aren't they? I wish we had some as good as those ones. Do you like the dinosaurs at school?

S;Yes mummy I do. (looking very glum)

Me: You like when you go to soft play too. And you get to pick a friend to take there with you when you get your happy stamps.

S: They are not my friends. Not like they are to the other children.

I was so stumped by this I told her that is because she is special and talks about all the special things she gets to do with some of the teachers and Ann (her OT). She was a mess for sometime after this conversation. Nothing I said comforted her. She was pleading and begging me not to leave her bedroom and when I told her I had housework to do she wanted to come downstairs with me. Had to physically peel her off of me. Which in hindsight I feel bad for doing but I needed to get out of the room she she didn't see me cry. It's at times like this I realise how important it is that we get a diagnosis soon as this time would have been the perfect opportunity  to give her a name to it not just say special. My heart is so heavy for her at times like these.