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. 

All Wrapped up in Dinosaurs.

Last night I sat and wrapped some of S's birthday presents; A dinosaur book,  a dinosaur toy, a marble run, a slinky, rocket balloons, dinosaur Russian dolls, a liquid timer, a flashing foam baton, a gigglestick, a stretchy key chain, a dinosaur leapster game and a foaming dinosaur egg. All wrapped up in dinosaur wrapping paper. Once all the paper was gone I sat back and looked at the pile of presents in front of me and started to cry.

Why was I crying? For a few moments I am not sure I knew why. Then lots of unwanted thoughts came into my mind; 'These are not real toys!...Should I have got her all this dinosaur stuff?...Why am I wrapping it in dinosaur wrap? She's not a boy. ...This is not what I imagined I'd be buying my 5 year old daughter. ... What do normal 5 year old girls even play with or want for their birthday?'
It doesn't matter though does it? S loves dinosaurs and S doesn't enjoy 'real toys'. My daughter is a very unique little girl and I am proud she doesn't conform to what everyone else feels is 'normal.' I think the roller-coaster that is realising your child is on the spectrum has taken a new turn.

I've ridden the up of realising someone else feels my daughters behaviour is not my bad parenting. The down of others judging her, the up of maybe finding an answer that seems to fit, that the more I read made more sense. The down of long waits the up of getting appointment that's going to give me an answer then I soared down when that appointment didn't give us the answers, and left us feeling so confused and lost. I started to climb again as I found my strength to fight for the diagnosis she needs, to get a second opinion with someone who seems to be asking the right questions, who doesn't belittle my opinion on my daughter. Finally S's school are saying what they have been denying for months. You reach the top though, and you have to come back down. 
Suddenly seeing boxes ticked that say my daughter is 'a burden' on her teacher and classroom, that her behaviour effects her relationship with her peers and that the school feel they have run out of effective strategies. I know all these things I know she has 'difficulty sharing' and makes 'inappropriate verbal and physical contact.' with other children and can be 'very rude when reprimanded for behaviour.' To finally see all these things written down alongside boxes ticked that say she is 'Angry and resentful' and 'unhappy, sad or depressed' is a hard reality to have to face. Maybe a small part of me was still hoping I was wrong and she could be 'fixed'. Now however I can't deny that her behaviour screams ASD. 
On top of all of this S is now on her summer holidays and her behaviour is becoming really hard to handle she is stimming in ways I haven't seen in a long time (not that I mind stimming it looks like great fun) she is lashing out at her sister, hitting and throwing things at me and lashing out verbally. I know that it is just in the moment and that she is trying to express her anger but to hear your, almost 5 year old, daughter tell you she hates you and doesn't want to be in this family and she wants to kill you countless times through the day. Then to see your other child be hurt and your own self attacked is hard going. You have to bite your tongue and learn to not get angry and realise she is reacting to sensations, thoughts and feelings you may never fully understand. 

Being a parent is hard work, especially when your child has additional needs. I will continue to stay strong for her, to try to put all the pieces together to make sense of my daughter so I can embrace her quirks and all. That is what mum's do. So I'll wipe away my tears, love her differences, even wrap them in dinosaur paper. 

A Glimmer of Hope.

It has been a long time since my last blog. I have tried to type many times how I feel and everything going on, but the truth is I just haven't been coping. S has been unbelievably hard and I feel that doors are being slammed in our face. It just seems like the world is out to prove I am a paranoid mum. Ask any decent mum and they will tell you they would fight any fight for their child, if you're a mum you will understand. I cannot even begin to describe the heartache a mum feels when she has to fight to get people to see the negative things about her child. No mum wants their child to struggle in life, no mum wants to admit their child is behind with their development and no mum ever wants to have to deal with those things as well as prove to the world that it is true.

Recently I have to fight a lot of doubt, not only from others but from myself. 'Is she really ASD?...Is it just something I am doing wrong?...Maybe that is 'normal'?' Self doubt is not helpful, it tears you apart from the inside. I am so grateful that this week I have seen a glimmer of hope and am again beginning to shake off that self doubt and prepare myself to start battling once again.

Over the weekend we went to S's school summer fair and a small birthday party. Things other children of S's age seemed to have absolutely no issues with. On Saturday (the day of the summer fair) S refused to sing with her classmates but was happy to watch. What then followed was a 2 hour long meltdown! Screaming and crying. She wanted a cake, then an ice cream, didn't want to eat something hot before that, didn't like everyone, wanted to go say hello to her teacher (whom we couldn't see), the music was too loud, she wanted a drink, she didn't want a drink.....the list goes on. Half a burger and one hug from a teacher a few sweets later, Daddy bringing her ear defenders and the crowds easing a little the mood started to shift. We stuck around to actually enjoy ourselves. Even had a small trip to the park on the way home where S was in her element looking at leaves and sticks. Sunday was party day and given it was a 3 hour party she did well. I have to thank the child's mum (N) for this. Being an OT and having spoken a few times she had approached me about things she could do to help S enjoy the party. We arrived before the others and S was given a tour and shown a tent set up just for her if she needed it. S refused to join in with most party games, but N allocated her special jobs. S tended to stay away from the groups of children and sat alone in the kitchen for a lot of the time or disappeared upstairs. She did have a meltdown when she stepped into the garden as the other girls cheered and was startled tried to run away and tripped on the steps, other than that though it was a pleasant experience. On the way home S snapped and made rude remarks about 5 people so as soon as she got home I sent her to her hideout (pop up tent full of sensory toys, favourite books and soft toys) to calm down. She seemed happy to just retreat and be left alone so we allowed her to play on the computer before bed.

All of this helped to get myself into a better mindset, no longer doubting my concerns, for today's appointment at CAMHS (Child and adolescent mental health service). Given that we felt so let down by our paed I was very unsure what to expect so went with no expectations. We had sent in a copy of paed's report with our notes highlighting our concerns and issues with what had been written. We had also brought with us S's kind hands book to show the proof that S does lash out at others, contrary to what the paed says. On arrival we were told the consultant was running late and later told she could be up to an hour late due to delays. We were happy to wait. My phone is armed with games and animated re-tellings of Dr Suess stories also having an empty waiting room to ourselves we got through the wait. When Dr C came to fetch us I liked her immediately. She spoke to S first and led us out to the room. I cannot explain why I like her but I just got a good vibe. We were lead into a room with 4 seats sat in a circle around a table some toys in the corner and at the back of the room a small office area. Dr C started to apologise about the wait, when she mentioned she had got caught in traffic in Leicester S started talking at her about there being a dinosaur museum there that she wanted to go to, and that she is going to a dinosaur park for her birthday then wandered off to look at the toys. Dr C informed us that it was only yesterday they received the paed's report which they have been waiting about 5 weeks for. She also told us that she had not yet looked at it as she felt it important to speak to us first to give us a fairer second opinion. We were asked about S. We went through the issues she has, her anxiety, her confidence issues, social issues, outbursts etc etc. The Dr seemed very interested in what we had to say and was taking lots of notes. During the meeting the Dr asked S who myself and her dad where and she said 'Mummy and Daddy.' The Dr then said 'Do you know their other name?' 'Yes this is Auntie Kirsty and Uncle Frank.' Later the Dr attempted to get our names again and S said 'Mummy and Daddy' and didn't see an issue with 'So can I call her Mummy then?' S looked at a few toys spinning the propellers on a helicopter, surprising me as she does not often get to into spinning things. She played with a doctor set for a while offering us all injections and stickers, then rammed a toy car into another toy, she later ventured to the office chair and started to spin on it. S span on the chair for the rest of the meeting, except the few times she came and threw herself over myself or her dad pushing on my throat, sensory seeking just as we had described earlier on in the meeting.
The Dr spoke of a group observation, where various professionals observed groups of children, not all being observed for ASD. She told us we may have travel within the county to a group but we said this was no problem. We were given a questionnaire for ourselves and the school to fill in. She was very apologetic that it may be repetitive of one we have done before. However on seeing it she had no worries. The form is all tick and 'on a scale' type questions. It is clear they are far more geared up to diagnosing ASD than general questionnaire. Inside there is a questionnaire titled 'Garnett and Attwood rating Scale'. Finally they are asking the right questions arranging to see her in environment that may show her true issues.

Unfortunately the meeting and taking S out of her normal school routine came at a cost and she was very misbehaved n school the rest of the day, rolling around on the floor and putting beads in her mouth. At home she was very excitable and I haven't dared take my eyes off her. Luckily Thomas and the magic Railroad (oh how I hate that film) came to the rescue again! It appears chewing is becoming a new sensory preference so may have to look into things she can safely chew on. I'm none to keen on her choices,  being sleeves and foam bath letters. Despite a trying afternoon she fell to sleep within an hour and I am tonight feeling optimistic.

This glimmer of hope has changed my mind about what I am fighting for. I am not fighting to show the world my daughter has negatives. I am fighting to show the world just how well I know my daughter. Better than anyone!

Finding Support

One of the hardest things about having a child who is waiting on a diagnosis of ASD is finding people who truely understand. Over the last few weeks I have started to find support and people who understand what we are going through. Forums, facebook and twitter some of my favourite places online. I am lucky to have some very understanding friends who don't mind that I talk about Autism far too much but others I am sure must be bored to death of hearing about it (more fool them). However to talk to people that have been through/ are going through the diagnosis process is the greatest support I could find. They help me through the hard times with their stories of coming out of the other side and advise on how to get there myself. They also share the happy times. Those little triumphs that others do not quite understand.
This week I found a local support group that meets once a month. I don't like doing new things and despite being very nervous went along and met some lovely people and will definitely be going back.
S got invited to soft play by a friend this week. It was nice to talk to the friends parents as they understand S's quirks from having a child on the spectrum themselves. Also from speaking to them and S being the only friend invited I have realised that she may have actually be started to form a friendship.

This week I have also started to notice steam engines becoming a little more than an interest to S. She just loves them. We took her for a ride on a steam train at easter and she loved it, she watched Thomas and the Magic Railroad on Netflix and she loves that too. She keeps asking to watch it and to go see 'steamies', it was heartbreaking to have to tell her a local steam rally was cancelled due to bad weather. It took over half an hour to get her out of bed that morning and the rest of the day was hard work with lots of meltdowns and she even forgot all about needing to empty her bladder she got so into watching a Thomas toy that evening. That same Thomas toy is now on it's 3rd lot of batteries she watched it for a total of over 2.5 hours Sunday! However it did provide me with video footage of verbal stimming and rocking that I feel may be helpful to show CAMHS when we finally get to see them.

In other news after speaking to @AspergerSadie on twitter about S's fear of hand dryers and being told how they really hurt the ears I decided to buy S some ear defenders. When we go out anywhere I have to look out for signs of S needing the toilet as she will not tell me for fear of having to go somewhere with hand dryers. She freaks out if she sees anyone else in there or if she hears someone flush the chain as she knows they will use them. We get in and out as fast as possible and use hand gel, as she reacts so violently to hand dryers. The ear defenders turned up Friday and we took them with us Saturday S walked into some public  toilets with them on. She didn't mention the hand dryers nor did she reacted to them going off, she even walked passed them while they were being used! I was hoping they would help but had no idea they would have that much of a positive effect. Highly recommend them! Such a small thing can make such a huge difference to my little girls life and finding those small things (with a little help from the growing support network around me) makes life that little bit easier. 

Stop judging. Start understanding. to "I wish I didn't have Aspergers"- An AutismPositivity2012 Flash Blog Event

Dear 'I wish I didn't have aspergers',
     Just recently I have discovered my 4 year old daughter may have Aspergers. The more I read, the more I understand her and the more amazing I find my little girl. I do sometimes worry about the extra obstacles life will throw at her because of this. I know life will be harder for her and many people will sadly never know or even care why.
     Already in her short life there have been people who judge her and treat her badly because of her difference. Who refuse to see that she does not act in malice and is, if they cared to get to know her, one of the most loving loyal people they will ever know. I love how infectious her laughter is, how she can see wonderful things that others might miss (like reflections of light on a freshly mopped floor), how she can recall and has a hunger for facts, I love that she is not bound by social rules and does not hide who she is. She is who she is, quirks and all. I love her for that and I would not change her for the world. If someone told me they could take away what makes her do the things people sometimes don't like or look down on I wouldn't let them. Although it isn't all that she is, without it she would be like a jigsaw puzzle with a piece missing.
     This world would be such a boring place if everyone was just like the next person. A world full of copycats is no fun at all. Be proud you are different. You will find people who don't like who you are and the things that you do, people who do not understand you or even want to try, those people are not worth a second thought. There are also people who DO want to embrace you for all that you are and want to share all of your world with you. Let them ones in and never stop looking for them. Forums and support groups are good place to start that search. Chin up keep smiling and remember you are amazing.