10/03/12- Very public meltdown,

I went to a large park today and S wanted to play on a large climbing frame with slides on it. She cannot get up it alone so has to be helped. She knows people should wait their turn so was getting very flustered because other children were impatiently pushing past her. I helped her up while she loudly announced 'He cannot come up yet mummy, he has to wait.' She headed straight towards the way for the highest slides. I shouted up 'Try these slides first sweetheart because you might get stuck on that bit.' It fell on deaf ears. She tried to climb but due to her poor coordination and anxiety she was stuck and scared to move up or down. She started to shout and cry and when another child went past she hit out at them, not because she is naughty and wanted to hurt them but because her stress levels were so high she had lost all self control and could not longer cope with her surroundings. I had to leave her sister in her pram and climb up to get her.
You might think Mummy to the rescue problem solved. Right? Wrong! When in 'meltdown' she is very contrary, she did not want my help but couldn't do it alone! I was faced with trying to reason with a child who was on a ledge screaming and crying and repeating 'I can't get up there mummy' over and over again a child I knew would not happily fall into mummy's arms relieved to be rescued but would go rigid and kick and fight if touched. Unfortunately two children seeing a gap squeezed through it. This totally broke the 'wait your turn' rule we have had to embed into her and caused her to start lashing out! I had no choice but to lift her down knowing it would enrage her. Let me tell you now a 4 year old in meltdown is hard to carry on level ground let alone while trying to navigate a climbing frame. I had to move her for her own and other children's safety!
Once on solid ground I have to leave her to cry shout and scream until she had recollected herself, before I could even attempt to talk to her. I could see the glares and the head shakes, I could hear the tuts! I saw the look of horror on their faces when the mummy did not tell her child off for her 'naughty' behaviour but instead passed (this child clearly too old for preschool toys) an iggle piggle soft toy and encouraged her to rub it against her face to calm her down!

If only they went away and read about ASD instead of thinking how much of a better parent than me they are!

04/03/12- Realising she is different.

Every night after her bedtime story S quizzes me on what day it is tomorrow and what she has going on etc etc. Tonight's conversation totally shocked me. 

S: What day is it tomorrow?

Me: Monday

S:Do I have school tomorrow?

Me: Yes sweetie

S: Oh...but I don't like school.

Me: I know you don't baby but you have to go t....

S; But there are too many children there

Me: I know baby but you have to go to sch...

S; but I get so nervous

Me:it's ok to get nerrvous but think of all the fun you get to have.

S: but I don't...Not like the other children do.

Me: Oh....well...you like the dinosaurs there. Those dinosaurs are so cool at school aren't they? I wish we had some as good as those ones. Do you like the dinosaurs at school?

S;Yes mummy I do. (looking very glum)

Me: You like when you go to soft play too. And you get to pick a friend to take there with you when you get your happy stamps.

S: They are not my friends. Not like they are to the other children.

I was so stumped by this I told her that is because she is special and talks about all the special things she gets to do with some of the teachers and Ann (her OT). She was a mess for sometime after this conversation. Nothing I said comforted her. She was pleading and begging me not to leave her bedroom and when I told her I had housework to do she wanted to come downstairs with me. Had to physically peel her off of me. Which in hindsight I feel bad for doing but I needed to get out of the room she she didn't see me cry. It's at times like this I realise how important it is that we get a diagnosis soon as this time would have been the perfect opportunity  to give her a name to it not just say special. My heart is so heavy for her at times like these.

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.'  

Realising quirks may be something more.

I have decided to write this blog to give a Mum's view of the ups and downs of a child suspected of having ASD (Autism Spectrum Disorder). We are just 3 days away from an ADOS test (http://en.wikipedia.org/wiki/ADOS), for my 4 year old daughter, which I hope may give us a diagnosis and help ease some of the self doubt I feel. 

 Here is our story so far:  

S was born August 2007. Birth was normal, 4hours of labour no complications, just gas and air for pain relief. I developed PND and a lot of our life was spent inside just the two of us. I spoke to her all the time and she loved to sit in her rocking chair, from an early age I remember that when upset she found being sat in her chair being sang or spoken to much more soothing than cuddles. Everything seemed to be developing fine and the only thing raised at her 9month assessment was a slight turn in her eye, which was referred but could not be fully investigated until she was around 2 years old.

S did not start crawling until she was 11 months, we were not too concerned as she seemed advanced with her speech and had a huge vocabulary. By 18 months she was showing no interest in walking and started to knee walk. She was referred to have her legs and feet checked and found to be hyper-mobile and have flat feet. By 2 years she would only walk holding someone’s hand and resorted to knee-walking if let go. By this age I was saying 'It's not that she physically can't, something is scaring her.' A month after her 2^nd birthday she was diagnosed with astigmatism and given glasses. A week later she was happily walking alone. S is not a climber and really struggles with park equipment. It takes a lot of encouragement for her to try climb a new thing and a small set back can resort in meltdown and her refusal to try again for some time. Even when she has cracked something when we re-visit she may take a while to rebuild that skill and if it has been a long time we have to start all over again. This is true for many of her skills, not just climbing, she is very afraid of not doing something perfect the first time around and very reluctant to try new things.

S took a long time to potty train and was not fully toilet trained until she was 34 months old. She is still not dry at night (despite two lengthy and stressful attempts) as she sleeps too heavily to be awoken by a saturated bed! Training was not helped by her huge fear of hand-dryers, I try to use disabled toilets if they are unlocked and free as she gets very upset at even the thought of one going off. She will waffle on and on the whole time we are in the toilets about someone setting them off, and if they are set off she will cover her ears and it is very hard to get through to her, we have to stay in the cubicle until they have stopped. I carry hand gel now and always tell her we can use that and leave as soon as we are out of the cubicle but public toilets are still very stressful places for her. She is also scared of hair-dyers, vacuum cleaners and loud vehicles (including emergency vehicles).

S did not socialise much as a toddler. I did try to take her to see friends with children of similar age, but due to my on going battle with depression it was not as regular as it perhaps could have been. I did try a local mum's and tots but due to the cliquey nature and the mums not watching their children I stopped going. S displayed a few things that looking back could have been warning signs but I put down to her lack of social practice. She snatched things, would cuddle and not seem to understand when to let go, hated when another child hugged her. She would group toys and carry them around, for example all 3 of the fairys, both iggle piggle toys. If she put one of these down and someone picked it up it would cause mass upset. She wasn't happy with one each she needed all of those toys in the group. Her soft toy collection is where this behaviour showed most. An example of this is she has a lemur toy that when she chooses to have she has to have the smaller one too and will not settle until she has them both (she still does this today).

 Despite the things I have mentioned S did appear to be a very happy child and we often thought we got lucky as she seemed to miss 'the terrible twos'. She is also very bright and can talk very well, although her speeche seems very formal and almost too grown up for her. She knew all her colours by 2 (a skill not expected until 3) to name but one example.

In July 2010 I gave birth to my second daughter (E). S really struggled with her crying and stood holding her hands over her ears. She often asked if we could put her back in my tummy. She didn't seem too bothered at having a sister nor did she ask to hold her. S turned 3 that August and then started preschool 3 mornings a week in the September. It is around this time that her behaviour became challenging. Back chatting, hitting out, tantrums. She was also having problems with her peers and the preschool could not get her to sit for story time. She did not seem to make/ keep friends like the other children. She would hit out or touch other children, she did however really enjoy and look forward to preschool. We put her behaviour down to all the changes going on in her life and the settling issues down to her lack of social interaction prior to preschool.

 By April 2011 preschool was becoming really difficult, S was still hitting out and the preschool described her behaviour like a switch clicked and that was it they could not reign her behaviour in. Parents would stand around gossiping about her (within my earshot) and the general atmosphere was awful and very distressing for myself (I have since learnt all the mum's had a meal and Skye was brought up in a very negative conversation, how mature of them!). After speaking to the preschool and discussing how we were talking to S about her behaviour and doing all we possibly could that it was decided it was best we go speak to the Health Visitor. The HV agreed to go and observe her in preschool. She told us she found S 'fascinating'. The way she spoke was very interesting and her interaction with others was enough to want to come and do an assessment at home. This assessment scored Skye at 3years 10 months (her age at the time) however when looking the areas it showed that intellectual areas such as language she scored 5 years! However she only scored 2.5 years for social and self care! She was then refereed to the community paediatrician. The way it is done here all referrals are sent to a panel who then decide if it needs further investigation. This wait was extremely hard and I worried that if they threw it out it would mean I was failing as a mum. She got through and was seen in September 2011. Below are a few things the paediatrician reported:

• Says she doesn't have any friends (she had just started school then, but she still says this now).
• 'Has well developed receptive and expressive language skills, often using quite formal and advanced vocabulary.'
• was keen to talk but mostly about her own activity.
• Did not ask questions or show things to adults
• reluctant to engage in eye contact
• 'tone of voice was rather flat and lacked variation.'
• 'gross motor skills are immature'
• 'appears to have motor coordination problems, some sensory issues and some rigidity'.

 S was then refereed to physiotherapy, an occupational therapist and an educational psychologist. She saw the physio beginning of December 2011. They were generally happy. Have given a few exercises to help her balance and coordination, they have asked to see her again in 6 months and referred to Orthotics. (who have given her insoles to stop her rolling her feet inwards).

We saw Occupational therapist in January 2011 who decided to start 1 x45 minute session once a week in school to help with S's bilateral and upper limb coordination and her fine motor skills.  .

Educational Psychologist met with us at the school in January 2011 and we sat with him and the school SENCO. As soon as we sat down he started talking about autism assessments. At this point no professional had mentioned the word Autism so it was a bit surprising to hear, relieving all the same. From what he had already read he was thinking that is what they are expecting to find, talking to us very much cemented his suspicions. He then went into S's classroom and observed her for 2 hours. 8 weeks later after calls to get an update we were informed S would get an ADOS test 2nd April 2011. 

In school S snatches and has problems sharing. The school are using a 'kind hands' book with rewards all her stamps in the morning and again for the afternoon.This is working some days but not others. They have her holding a weighted ball when standing in lines to stop her fidgeting and hitting/ touching others. This is very effective. She also does sensory activities with the TA.

A few other things that I feel may be indicators.

• Lack of concentration
• She still very attached to her iggle piggle toy rubs the felt bits on his head against her lip as a comfort.
• She doesn't sit still.
• Often makes a groaning type noises.
• Will grab someone’s face to get them to look at her and interrupt conversation.
• She 'gets' that hitting means time out but now exactly why the time out happens.
• Finds it hard to deal with change of plans
• Is scared of the wind and rain .
• Sometimes switches off and cannot seem to get her to listen
• Reacts to sudden noise (an example of this being banging noises from next room made her freeze and cover ears at the OT).
• Tendancy to go into what I refer to as meltdown over rather minor things.
• She plays differently to other children, grouping toys for example.
• Repeats things she has heard on films a particular favourite was saying 'Hey lazer lips. Your mama was a snow blower.' (short circuit) She remembers song lyrics after only hearing the song once or twice.
• She can remember minute details from some time ago yet not remember her actions from that day! For example seemed to forget she had hit out loads of times one day at school. But could remember not only that she had a kitkat in her lunch while on holiday 9 months ago but that it was the same day we visited the dinosaur park! 
• She 'sensory seeks' by leaning and climbing on people, likes to touch things, 'shouts' and hums and just recently bites strange things...like flannels, the kitchen surface, tops.
• Anxiety over very minor things.

So yeah that's S's background story.