Walls

I wrote this poem 4 years ago and just found it again. It describes for me almost perfectly how I often feel disconnected from the world then I thought I what I was describing was depression because I had very little understanding of autism and Aspergers.

Walls are closing all around, 

They make it difficult to see, 

Sunshine does not pass them, 

Soon all there is is me. 

You pushed aside a brick, 

I began to hope for sunlight, 

Peered inside and saw me, 

But all you had was torchlight. 

Now your torch is fading, 

Our love cannot survive, 

I can never share your daylight, 

These walls are far too high. 

Walls are closing all around, 

They make me hard to see, 

Alone inside forever, 

Alone inside with me. 

Whirling Thoughts

Last night I had a panic attack. As I started to loose control I decided to quickly type how I was feeling before I was overcome, what follows is likely to be far from grammatically perfect but I thought it would be interesting to read back later.

Today I have been processing the end of a friendship.

It was a very close friendship but I was betrayed in the worst possible way and then had my aspergers diagnosis attacked. I have been trying to work out how to end it for 3 months but finally did about 10 days ago.

Today reading Pretending to be Normal by Liane Holliday I read a chapter about the difficulties aspies face making and maintaining close friendships and it set me off. I have been swinging between fighting tears and numbness all day.

Now sat here at almost 1 AM rocking and twisting my hands, refreshing my facebook feed over and over. My head feel like when you stir liquid and stop and it continues to whoosh around and my chest feels tight. This means I am likely to end up having a panic attack if i try to sleep. Or I will shutdown. My vision keeps blurring and now my stomach hurts. My face is itching and I can feel blood rushing to my cheeks, similar feeling I get after a few alcoholic drinks but I haven't been drinking.

I hate this. I wish months ago I could have let go of that friendship. I wish I wasn't so scared of confronting those who I care about and feel loyalty to. I wish that when faced with a hurtful truth I didn't have to try to understand others appalling actions. I find it almost impossible to believe someone I adore could be so cold. I also can't understand how someone could break such awful moral codes especially because I myself never would. How could someone possibly betray someone as deeply as I have been. And then attack them when they back away? People are so confusing and trying to understand them hurts my head and my heart. I wish people could just be as loyal to me as I am to them. Is that really so much to ask?

Shortly after that my laptop battery died so I decided to try to sleep. I turned the light off and held my favourite soft toy close twisting it's 'hair' between my fingers. I remember feeling adrenaline rush through my body forcing me to sit up in bed and sit cross-legged rocking. The last thing I remember is desperately trying to breathe through the rushing thoughts and trying desperately to cling to something positive, trying not to be afraid of the dark and to stay laying down I remember I was loosing the battle. 

A few hours later I woke up feeling disorientated. I was almost sat up with my quilt bunched up behind me and my legs crossed under me. I was facing my window with the curtains open. I do not remember turning myself into this position nor do I remember opening the curtains. Today my head feels very confused and almost like I cannot focus on my thoughts. I know this is not over. When I feel this way I could shutdown. When I do I feel emotionless for a day or so and just about manage to get the vital tasks done (feeding the kids etc), I will not take in anything I read or watch on the TV and will feel almost like I am in a huge bubble. Either that or I will have a series of night time panic attacks. 

Whatever happens over the next few days I know that this will not be the last time I have to process what has happened. My mind seems incapable of fully processing events where I cannot ever get full closure because I can never fully understand the actions or thoughts of others. I will relive these thoughts time and time again luckily each time the processing will be less traumatic until I finally stop hurting which can take a long time. Moving on is so difficult when  you have an over active brain.

The Love of Dogs

Also posted to Aspie Women Speak on 15th June 2014

Time and time again I read about how much of a positive influence dogs have on those on the Autistic spectrum. There are charities who train service dogs to help make life easier for autistics and their families. A quick google search will lead you to glowing reports of how these dogs can dramatically change the behaviour by reducing bolting and repetitive behaviour and having a  therapeutic calming effect. Service dogs can also make unfamiliar surrounds easier to cope with. However even a typical family dog can have a wonderful effect on the lives of an aspie like me.

Earlier this year I had to make the heartbreaking decision to have my 13.5 year old dog put to sleep. Her poor heart and lungs were failing and surgery could not improve (and in fact risked) her life. She was in a lot of pain and clearly very scared. The days leading up to and after her death I felt grief so intense I feared I would never be happy again. Beatie had come into my life when I was 14 years old. I had no friends in school and spent my lunch breaks hiding in the library. I was desperately lonely and needed a friend. She became my best friend. I remember times when I would walk into the kitchen sit on the floor and sob and she would just climb into my lap and sit with me. She never asked for anything more than love and gave it back unconditionally. She was there through a bad relationship and break up. When I moved out at 21 she came with me. She was the only one there with me when I paced the floor in labour with my first child, she was there through the sleepless nights that followed and the long nights alone while my husband was at work. She was a constant in a world that was always changing and letting me down. To lose that and her did and always will leave a hole.

The timing for losing Beatie could not have been much worse as I was just beginning my assessments for aspergers and I felt that she had understood me without having to use words, something humans just cannot do. I realised I needed dogs in my life but I couldn’t bring myself to replace her and timing was not right to get a puppy. My solution was to look into volunteering at a local animal rescue and specifically work with the dogs. I went to visit the centre and decided to work one day a week. The following week I started my first day and cannot believe how quickly the day passed. I came home caked in mud, stinking of dogs with a huge grin plastered on my face. Being around those dogs and doing my bit for them while they waited to find someone who would love them forever is just what I needed. One dog though stood out and I spent the next 5 weeks desperate to see him again and couldn’t resist saying hello and stroking his ear every time I passed him.

When I first lay eyes on Amos something connected. I couldn’t resist his puppy dog eyes and how he leaned against the bars when I stroked him. Each week I headed to him first to say hello and hated saying goodbye. Now people often say to me ‘Don’t you want to take them all home?’ I can say with certainty that I don’t I think they are all great but I don’t become attached because I feel each dog will find a family right for them. As the weeks went by I became more and more attached to him I kept saying ‘If I could take him home I would, but not sure how he would be with the kids.’ After 5 weeks my husband decided to speak  to the rescue owner about meeting Amos himself and then him meeting the girls. I went into research mode and realised lurchers made great family pets due to their laid back nature and not needing huge long walks. Amos was still young so he would also enjoy playing with the girls. Turns out I was right his meeting with the girls went better than expected and he soon moved in.

11 weeks on and he has become a wonderful companion. I have found his calm, or perhaps lazy nature very settling and enjoy him lying with me in the evening and stroking his soft fur or floppy ears. I have had some really sad days recently and he still hasn’t failed to make me smile with a goofy sleepy face, trying to navigate his lanky legs at high-speed around the garden or just by knowing I found him when we needed each other. He has brought the family together and there is far more laughter in the house. We also go out every day because we have to, before I struggled to get up at weekends and was happy to not battle my daughter (who also has ASD) to get dressed. Being out in the fresh air is great for me and I enjoy walks with just the two of us and actually enjoy talking to other dog walkers, because they just want to talk about dogs and that I can handle. The thing I most enjoy about Amos being in my life is how he shows just how much he loves me without ever having to say so. He jumps up at the window to watch me leave he even cries a little. When I come home his tail is always wagging and he jumps up to greet me. Such simple easy signs that tell me ‘I love you, I am grateful to have you in my life, please don’t leave.’ Many times in my life I have felt so unwanted and rejected and I constantly fear that other people will desert me. Dogs don’t make me feel that way at all they give a companionship that is unconditional and selfless.    

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.

Connecting two sets of dots.

   Over the last few years I have spent countless hours reading books, articles and blogs about autism. I was looking for answers as to what was going on with my daughter. In those words I found more and more reassurance that I was right. S wasn't like the kids in her class or the other kids in the park, she wasn't a bad kid and we weren't bad parents in fact nobody is to blame, her differences were hard-wired into her brain. They are part of her neurology and that will never change. After finally getting a diagnosis I began to read for a different reason. I wasn't looking for similarities that I could arm myself  with to fight those who doubted me. I was reading for clues of how to cope as a family, how to make life easier for S and the rest of us and to get a deeper understanding of my daughter. What I started to find was that a niggling thought I had often pushed aside was beginning to become more of a reality.

 
I have a very dear friend, one of many I had not met in real life but had shared so much with via social media I felt very close to. This friend had waited patiently for me to approach her when it dawned on me that S may have autism. She answered all my questions and gave me invaluable advise on my rights within my battle to get S's needs met. One day we finally got to meet and we spoke just as easily as we had online. It was that day as I stood in her kitchen that the niggly thought, the one I had pushed to the back of my mind, the truth that I was denying myself of suddenly became a realisation. We stood talking about how I struggle to hear someone talking if there is a background noise and she said to me 'That is a sensory issue, we struggle with that sort of thing.' I thought by 'we' she meant those on the spectrum (which she herself had just discovered she was). I realised that another person could see that I myself had traits. It really made me finally begin to think about me and I will always be grateful for her comment. She may not realise how much of an effect it had on me but I want to say thank you, you know who you are. 

 
Now it was time to research for me. To look for me among the words of others. It wasn't hard to find as I knew I had seen myself among the words of many adult aspies and I continued to find more and more. I finally realised why I had always felt like such and outsider, why I always failed to make and keep friends, why social occasions filled me with such dread and more importantly that I wasn't alone. At this stage it was nothing more than a thought maybe even a hope that I could begin to understand why I am so strange. 

I spoke to my husband and he told me he could see it in me as much as he could S which was a bit of a shock and set me back a little. I started to doubt my thoughts again just like I had with S only a few years earlier, I started to pick out all the things I did/didn't do which meant I had to be NT. I got all the way through school with nobody noticing I was odd (well the other kids did but not the teachers), I am all grown up with kids of my own and could pass as normal right?
 
Then something happened, something that upset me so deeply I realised just how differently I am wired. My husband finally talked me into joining a gym, well at least going for a trial. Before I could go to a gym though I needed to buy workout gear, the thought of having to do so caused me great panic. I had no idea how to dress at a gym and I was dreading how odd gym gear would feel. Off to a discount sport shop we went, as soon as I walked through the door I wanted to run back out. Clothes of all colours were hanging right to the ridiculously high ceilings greeted me. There are no aisles to wander up and down in this shop just clothes racks which appear to have no order and are haphazardly strewn around. I immediately felt disoriented and confused. When my husband lead me to the ladies clothes I flicked through the clothes trying to list what I needed and what I could afford and imagine how each item would feel. There was no way I would try anything on as by the time I had half heartedly picked some clothes I needed to find trainers...and that meant dealing with a pushy guy that wanted to try sell me more expensive shoes than the pairs I wanted to try. I finally found a pair that didn't make my feet feel strange and handed the others back. Pushy sales assistant was at it again, telling me about special soles and sports socks and I just snapped 'I just want the trainers, nothing else.' He scurried off to put them behind the till where yet another assistant tried to sell me a 'bag for life' which I bluntly turned down much to my husband's amusement. When I left my head was rushing and I wanted to scream and I was still yet to try on the clothes I had bought!! When I got home they didn't fit and my short fuse met it's end. I snapped at hubby to take it all back and use the money to get himself something because I was never going back to that shop and nor was I joining the gym! I had shouted and still felt uncontrollable emotions running through me, I ran to my bed  and hid under the blanket and as I wailed a cloudiness filled my head. I couldn't stop it or rid myself of it and it drained all of my energy. The next thing I knew I was waking up. I felt very lost and my head hurt but some of the raw emotion had settled and hubby suggested we go change the trousers and get some food. I re-entered the shop alone but this time I had one aim - find some trousers, exchange and leave and the thought of a meal I didn't have to cook got me through it. I was dazed for the rest of the day but the next day it clicked...the events had caused me to meltdown and then shut down. Something I had witnessed in S so many times and deep down knew I understood on a deeper level that just reading about it.

  My new thinking set me looking for more evidence and I stumbled across an online AQ (Autism quotient) test. I scored highly on this and I finally decided now was the time for me to get answers. I know many adults are happy to be what is referred to as self diagnosed but this would never be enough for me. After speaking to my husband and best friend I decided to visit my GP armed with my AQ score. It was very nerve racking but luckily my GP had known me all my life and knew of my history of depression and was more than happy to refer me to the adult ADHD and Aspergers team. About 3 months later I went for a screening appointment. It was a very nerve racking experience and I ended up crying and shaking as soon as my psychologist spoke to me but by the end I felt much better. I had enough indicators to warrant a full assessment and was told when that would be, how long it would be and was sent some more forms to fill in in the meantime.
I have my assessment in just over 3 weeks and I waiver sometimes and have moments of doubt but I will be happy when it is over and am hopeful for some answers. I have written some things down that I may not remember during a face to face appointment and am trying to stay optimistic that yet again my gut feeling will be right.

Hurt Pride

S travels by taxi to school. It was something I really struggled with but seeing how much the journey settles her and how amazing her relationship with her chaperone is those worries are long gone. S has the same driver each day and so far no issues. However sometimes she has to have a substitute driver. S is always pre-warned and still has her regular chaperone. Friday was one of these days S was to be bought home by a different driver (we'll call him Cabbie).

S came home and as soon as she stepped through the door she started crying. She told me how Cabbie had told her dinosaurs never existed. This statement to S was devastating. Dinosaurs mean more to S than most could ever imagine so to have a grown man tell her they were never alive it broke her heart. It would have caused a deep confusion as S believes what she is told especially by adults. So how can someone say they didn't exist when there are so many books and facts about? How is it possible that palaeontologists dig up fossils if they didn't exist? After we managed to calm S and reassure her that this man was wrong we started to find out what had happened. 

S had asked Cabbie some dinosaur facts things like 'What does triceratops mean?' I can only assume this clever little girl made Mr Cabbie feel a little dumb so as an attempt to recover his damaged pride he said they never lived. S started to argue and despite her chaperone telling her not to listen to him, this man that called her a 'nasty little girl', really got to her. 

We made a complaint right away to the taxi company and were assure the manager would speak to Cabbie. If this man cannot get along with children he certainly should not be assigned to the school runs of sensitive special needs children. He would not have spoken to a child that way if their parents were present. I sinerly hope he is never sent to transport my daughter again because I will not be allowing him to do so. 

We have tried to use this experience to teach S that grown ups are not always right and that if one does upset her and she tells us we will try to sort it out. 

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.

Beautiful Imagination.

I'm about to bust open one of the many myths about autism that drive me crazy! One of the misconceptions that I have personally seen 'professionals' get hung up on. Imagination! Oh yes people with autism can have imagination and guess what? They can play imaginatively too! I have read so many times in so many different places that those on the spectrum lack social imagination, many times it is clear others have totally misread or misunderstood what this means.  Social imagination is far more about being able predict the actions of others. However time and time again I have heard 'Well S seems to be able to play imaginatively'. It makes me want to ask 'So? What is your point? Would you like me to tell you where she has picked up her story lines from? Which TV show or film that is from? Would you like to try change a character in the game she is playing see how "imaginative" her game is then?' It was a huge sticking point for both S's school and her Ed Psych and I lost count of how many times I tried to explain she was mostly copying TV shows or others games and felt I was not listened to. Luckily we found someone who could see past the surface of S's play to what lay underneath.

This is an example of how wonderful S's imagination is and  how I have leaned to enter her bubble where others can't. Firstly I have had to learn a lot about dinosaurs!
This is a Gallimimus:

On a recent trip to the park S decided she was going to spend the whole trip being one. This meant that she ran around stating 'I'm a gallimimus. I'm an omnivore that means I eat meat AND leaves.' She would have happily run around pretending to chase other dinosaurs and eat leaves from the trees, with her body in a similar stance to the picture above, holding the correct amount of fingers out. Sometimes she would run past telling me again that she was a gallimimus who happens to be an omnivore, however I wanted to play. I wanted to join in and I knew exactly how. I walked close to where S was playing with E (my 2 year old) at my heels and loudly announced 'ARGH quick E! There is a gallimimus on the loose! Run away!' Her head flicked around and she paused for a moment and watched as I scooped up her sister and ran away, then 'RARGH I'm an omnivore so I eat leaves AND meat and you are meat.' I had her! she was chasing me she was playing with me. We played this game for some time, we even managed to capture the rouge dinosaur! Once I tired of running S went off and played alone again happily in her little dinosaur bliss. There was another child in the park at this point who attempted to get S to play but she was not interested in being chased by a gallimimus and after answering a few questions very briefly (the girl knew S from school) S would again tell her 'I am a gallimimus. I'm an omnivore, that means I eat meat and leaves. RARGH.' The girl didn't realise that this meant S wanted to chase her and just looked on confused when S insisted she was off to eat some grass. 

It was a bit of a mixed trip I was given a little insight into how S interacts with other children and how her lack of social imagination made it difficult for her to realise the other little girl had no interest playing dinosaurs nor did she understand the game S was playing and S just didn't pick up on the subtle hints to play something else or talk about school (not something I wanted her to discuss with this particular child anyway). Sometimes it does make me feel sad to see S not having the same social development as children her age but S did not come away feeling sad as we had a wonderful time. Although she didn't tell me this I know she did too and am expecting the gallimimus to show up again next time we visit the park. 

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. 

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.

Please let her be.

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

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

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

Find Your Red Ball

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

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

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

First Playdate.

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

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

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

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

Calm after the storm

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

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

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

Summer Holidays and Back to School

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

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

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

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

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

Shopping Fun!

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

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

You are NOT Stupid.

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

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

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

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

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

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

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

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