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.

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. 

Trundling along

So since the ADOS test I have been finding it very difficult to get my head around what is next. We were very much left in limbo and it appears all support has just stopped. OT stopped seeing S end of term and no indication of if she plans to see S again or review her case at any time. No planned meetings/ assessments with Paed or EP have appeared and I believe S has been filed under 'done all we can be bothered to do for her so we'll just trail them along in our system a bit longer, until the parents get bored and drop it.' I have been feeling very glum about it all and mulled about knowing I will have to fight some how but totally unsure on how or where to even start. I even started to doubt S was ASD.

I shut off from the world and became encased in my own despair at what was happening. I suddenly didn't know how act around S again and got strict reprimanding her for things an NT child would know not to do and right on cue she rebelled and proved I was being silly to doubt my mothers instinct. In the week after the ADOS test I saw the most violent behaviour I have ever seen from her. The slightest knock or trip resulted in S screaming loudly, mouth wide she suddenly seemed to forget how to breathe and in a complete act of fear she would run to me throwing herself face first into my chest . On one occasion she scaled the sofa to get to me and was intercepted by hubby, who in the chaos received a set of teeth into his shoulder., then S threw her head back narrowly missing her little sister and head-butted him. I too got a set of teeth in my skin and many head-butts that week. It was awful to watch her this way and I tried desperately to drag myself out of this state of self pity and get on with helping my daughter, cabin fever wasn't helping! We went to visit my sister and S seemed so much happier to be out of the house. That day the over stimulation of two toddlers and the excitement of seeing her two aunts got S to a point where she was very hyper and needed to be calmed. Why I didn't just take her upstairs at the first signs of over stimulation I will never know, but after being kicked and hit over and over I scooped her up put her in her cousins room and gave her every soft toy in sight. She soon calmed down and even asked to stay there a while longer.

Easter sunday the rain poured and we decided a trip to the country park was no longer an option I dreaded telling S but had pre-warned her that we may not go if it rained. She sat sadly on the sofa totally uninterested I then clocked a leaflet for a steam railway nearby and after showing S the website and lots of youtube videos we were soon on are way for a ride on a steam engine. That grey day turned the holiday around and fun was had by all.

Tuesday I took S to a football course put on by surestart. We were going to go as a family but hubby was not so keen so I decided S would benefit more from it just me and her going. The group was small so it was ideal for S The instructor was really good.  He did not push her too much and gave a great amount of praise when she did something. S really struggles with her co-ordination and motor skills and often refuses to try new things for fear of being no good at it. She joined in happily for a good 15-20 mins. After this she had started to feel quite challenged by the activities and was no longer taking the gentle persuasion to carry on trying. I could see the stress building so asked if she would like to get a drink and sit and watch for a while. we sat and watched the other two children and the instructor did a few times ask if S wanted to try but got a firm NO. Towards the end S was becoming a little frustrated with herself and wanted to score a goal. The instructor turned towards her and asked if she would like to have a few shots at the goal and try to get a smiley stamp. After being told she could stand near the goal and that it was just her and the goal (no other children) she was encouraged to have a go. I felt a huge swell of pride for her as she kicked the ball into a net from about a metre away. We had a small wobble when she missed but instructor quickly got her back on track. She got her stamp and I watched her face light up when he put the backs of her hands together, said 'abracadabra' then pulled her and hands apart to revel she now magically had 2 happy stamps!

The rest of the week rattled on and we even managed a food shop as a whole family. It was not totally stress free but S managed pretty well thanks to being slim enough to still sit in the trolley (despite some dirty looks for doing so). Friday morning I left for the weekend and S even came to the platform to see me off she even coped well with the noise from the trains with Mummy cuddles and cupping her hands over her ears...maybe there is hope that one day she can get to this point with hand dryers. The break was nice and it sounds like S had a lovely time with her Daddy but I did miss her an awful lot.


I'm now feeling a little more at ease with what is going on and doing as much research as I can. I am am now certain S has Aspergers (AS) which is harder to diagnose as many with the syndrome can appear so 'normal'. It is also far harder to diagnose in girls as it presents itself so different. Many girls fly under the radar until teen years, well into their adult years and in many cases go completely undiagnosed. Statistics related to diagnosis show the ratio of boy to girls with AS are 10:1 yet researchers have found these to be more likely 4:1 due to under-diagnosis in girls. Dr Tony Attwood even believes the ratio is more like 2:1 (see video linked at the end of blog). Armed with this knowledge we now understand it is time to roll up our sleeves get ready to fight for the diagnosis that will give us extra help for S, will mean we can stop having to analyse our daughter all the time and to give us an explanation the next time S queries why she is different. I'll keep researching and am eagerly awaiting the delivery of 'Aspergirls; Empowering Females with Aspergers Syndrome' hoping it will be as good a read as reviews say.

It is sad to read that so many families get fobbed off by professionals for years but I am determined this is NOT happening not to MY child we will not sit at home and quietly await another appointment where we are talked down to and made to feel like we don't know our own daughter. We have already sent the first, in no doubt a long list of letters, to insist our Paed is changed and we get a referral to CAMHS.

S is back at school this week and seems really quite content. When I picked her up wednesday teacher told me her coat was soaked as she had stood under a dripping drain pipe. When I asked why I got 'I was having an outside shower.' On seeing a sad face in her kind-hands book with the words 'throwing sand' I  decided to try explain, yet again, why she shouldn't.. I was met with 'but it is all sparkly'...'yes but it could get in someone's eyes and hurt them. You could try running it through your hands like this.' ...'but it's rubbish that way, it doesn't look like fireworks.' How do you argue with that logic? I just grinned to myself and ended the conversation with 'I know it looks good honey but you really can't do it in case it hurts someone. Look at that flower can you remember it's name?'

Dr Tony Attwood on aspergers in girls.

28/01/12- A day or finding strategies.

Today has been a good one for us. Had to return some books to the library. Was a bit unsure about taking both girls alone but, took a deep breath and went for it. I showed S a tin of krispy squares I had made right before we left and told her if she didn't run off or shout in the library she could have one when we got home. She seemed excited but calm, she loves books and our library has a lovely relaxed children's area. She spotted 'Daddy's work car' (his boss was out in it) in the car park and because she was talking at me about that she remained by my side all the way through the carpark. We headed towards the library, feeling pretty happy, and suddenly realised something I had massively overlooked. 'DONG DONG DONG...the church bells, we were about to walk right past it. I looked at her and her face said it all. Right away I stopped and said 'Skye shall we wait here untill those bells stop?' 'Yes mummy...do we have to walk past that church?' I told her not untill the noise stopped. I decided to try distract from the noise and tell her about how her grandad used to ring church bells (she loves little facts like this and as expected repeated it to her Dad later, and most likely everyone she sees for a week). We got to the library and had a lovely time reading a few books on the sofa (we only left because E was being a menace). As we were checking out the bells started again (church is very close to library). We waited for them to stop, left and they started again (not sure why they were going off so much). 

I remembered there was a shop nearby that sold wool and thought we could go there and let her pick some for a scarf, I had promised to make her. Offered this plan to her, I normally avoid taking her near town but was feeling brave as she was doing so well, she was very happy at this idea. She picked a ball of red wool (her favourite colour) and was happily talking about it when we left the shop. As we started heading towards the car the bells started again. I quickly said 'Shall we have a look in here?', pointing to a shop that sold incense stick, candles, jewellery, chimes (you know the sort) She was happy to take sanctuary in that shop. She calmed as soon as we stepped inside and commented on the smells. I let her smell some sticks and pick some out to buy. I had this brainwave that maybe if she picks some she likes maybe those smells would soothe her (has to be worth a try).

Time was pressing as I was aware we HAD to get back to the car or face a hefty fine! As we left I told her we had to go near to the church but we would go the way so we were not right next to the wall, and we may even see some squirrels! As we headed towards the church the bells started again! She stopped and started repeating 'I don't like the bells, too noisy!' Second brainwave of the day happened. She loves her iggle piggle as she rubs the felt bit on his head on her lip. Maybe the soft wool would feel similar, maybe it'd help. I grabbed it out of my bag and said 'Skye feel how soft this is. Feel it on your face.' It worked! ( got some funny looks and was tempted to give them the middle finger, but restrained myself!) She was still anxious and rambling about wanting her aunties ear defenders and the noise but was able to guide her and get her to the car relatively easily. I put her favourite p!nk track on loudly and shut doors to drown out the noise, breathed a huge sigh of relief, smiled and thought to myself 'Well done, you did good.'