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.