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.