Diva fever and the struggles with communication.

If you have read any of my previous blogs you will be aware that in my own opinion Pixie-Faith is a complete diva, Alfie is on the long rocky road to having been diagnosed with Autism and Tyler is doing ok and I still haven’t killed him off like I do all plants and he has got to 8 years old go me !!

Our life as a “normal” happy family is a mess and a muddle of getting to hospital appointments for Alfie, having a health visitor for Pixie that has absolutely no idea on how it feels to have not had a full nights sleep for the past three and a half years and who’s baby is now showing so many similar traits to her recently diagnosed autistic brother at the same age. Pixie-Faith wasn’t even a full year old when I was on the slippery slop of denial and sleep deprivation, telling myself and any one that dared to mention her “melt downs and dislike of close touch” that she was just  being a girl “moody” that’s girls ha, we are all a little moody doesn’t matter how old we are right ?

6 months on and Alfie was just about to start school reception class, we are still awaiting the letter from the paediatrician confirming all of the details but we were now between 1 and 1.5 years into all of the observations and questionnaires and the conclusion given in word was that Alfie was indeed on the Autistic spectrum.

I still to this day cannot believe we have managed to get the school that I truly believe is the best school I have ever know, without the letter of confirmation to accompany his online application, especially as the school isn’t just done the road from us.

This school is not one that is on the Ofsted hall of fame but honestly does that matter when this main stream school has a centre of autism attached? this school has a huge focus in inclusion therefore every single teacher , not just the ones inside the centre have to have experience of working and teaching children with additional needs. Further more, not only were the teachers great with autistic children, they understood Alfie’s communication needs too.

“Fact time” most children on the autistic spectrum have social communication disorder. Some do not talk using voice commands and some don’t communicate at all.

So the fact that the school’s use of gestures, small groups and picture boards to name just a few of the amazing adaptations they use everyday in the mainstream classes means that Alfie has no reason to feel any more anxious or scared to use his voice it means the Makaton sign language we have been using since he was a tiny baby was not an exclusion to his peers it means for the first time he was completely included in everything both at home and at school (never underestimate the power of Mr tumbles ).

The use of Makaton helped me understand what Alfie was trying to ask for at home for example if he wanted a drink he would gesture for cup and I would open the fridge and ask him to show me – “Alfie show me what drink you would like , orange , milk or water” he would then point or gesture to the drink he wanted , finally we had found a away. through school and practice we managed to start to read and have fun with rhymes songs and suddenly Alfie became alive, Who needs words when we had hands and eyes to have fun !!!

All of a sudden Alfie was not “odd” anymore he wasn’t “unable” any more he was just AUTISIC.

With gentle and often tearful parent teacher meetings and quite frankly unforgettable support from his reception teacher, for not only Alfie as a pupil but myself as his mummy we did it age 5 and going into year 1 Alfie was rocking school and thriving in his own “special way”. – #until the pieces fit

Back to Pixie pickle knickers as she is lovingly known.

For a time I simply ignored any advice or opinions people tried to give me about “sleep training” and the many months of “isn’t she to old to be breastfeeding now” Pixie was now almost 2 years old and still a breast feeding boobie  gobbler. I had been determined to get to 18 months with the feeding and then take it from there. the goals and reports for how long to breast feed your child were always changing and I simply wanted the best for my girl. In fact I wanted to do everything as naturally as possible with pixie, so welcomed the “new age hippy” making it’s come back around by the time she was born. Pixie-Faith was a extended breast fed, baby worn, cloth bummed and self lead weaned baby. Some would and did say she ruled the roost, I would say I allowed her to identify her needs and show me what she wanted in her own time.

In actual truth the reality was I tried to do it differently with my boys and did things by the book (the contented little baby book to be precise) and it didn’t work! I was exhausted and she was my 3rd child after all. So if having her strapped to me with free flowing boob juice at her disposal meant that I broke the mould but got the washing up done a dinner in the oven and the washing in the machine so bloody be it.

Oh and another thing when I say we did baby lead weaning what I actually mean is, if it was my plate and pixie could reach it and get it into her mouth without choking  while I struggled to get Alfie to stop lobbing his plate at Tyler because he had wanted square shaped bread and I had done triangles by mistake. Hell I was winning , I was all out trendy mum keeping up with the latest faze whoop go me !!.

We began to realise the Pixie-Faith’s communication milestones were a little, nope a lot to be desired. she hadn’t yet got the hang of simple words such as MUM, DAD , NO or Ta, like many of my online mum friends and birth buddies babies had done . however we had mastered food. Pixie was and still is my little dustbin. she would happily try any thing new including dog biscuits (remember 3rd child ), she doesn’t stop eating or grazing all day.

Another difference with other children compared to pixie yet identical to Alfie was her inability to be close to others when playing, she would love to sit and line thing up or be in “her own little world”. It was obvious her socialisation skills were delayed too. We decided that maybe nursery would be a good idea.

I also felt like nursery would give me some much needed time to see other adults. I had spent the last 2.5 years with Pixie attached to my chest, while Alfie was being poked prodded left right and centre, dropping both the boys at school and anything else that happened in between.

Tyler had also started to change a lot by this point asking many questions about me and his father why we split up and why Alfie was different to his friend little brothers and sisters, I not sure if this was something out of the ordinary or just natural progression that comes with “growing up” . Tyler  was by this point in the upper end of primary school and seeing much more of his farther then in previous years. It had become inevitable the I was the disciplinarian, the home work matron, and the clean your bed room nag.

So with the nursery place confirmed roll reversal complete between me and Steve, I was going back to college! I was so worried that people would think badly of me for doing this but honestly if I hadn’t I’m not sure I would still be here .

I had lost a lot of “real” friends the ones that you have been friends with for like forever but all of a sudden when you really need them they are to busy for you or your child is just to “strange ” for there child as they don’t “like” the same things as their child does. however I did find so many new ones in on line baby groups.some I’m still yet to meet in person but feel like I’ve known them a life time .

My days at college were a welcome new distraction to my daily struggles at being a mum, for the first time in a long time I felt I was worth something more then just a mum (yes selfish I know, but I did say this would be honest).

However one nursery collection just under a year later brought me crashing back to reality. On picking up Pixie-Faith one afternoon  her key worker approached me and Boom there it was the dreaded question ” have you noticed how Pixie doesn’t like to be held when distressed, or how she would rather play alone then with other children, additionally they told me how they felt her speech was extremely delayed, and then right there the words Have you ever considered that she may be autistic ?”

Like a bolt of lightening straight to then heart, I simply replied ” No not really but my husband has oh and most of my family tell me she is so much like Alfie was at that age” I lied and told them it hadn’t really crossed my mind!!! Scooping Pixie-Faith up I turned and legged it to the door putting Pixie into her car seat I sobbed. Steve asked me what on earth had happened, for me to relay what they had asked what their opinion on her speech. His reply was a simple ” yeah I know she is ” and we drove home and carried on regardless. – that what we do you see we carry on.

A few tense talks later we had decided not to go and push for appointments right there ad then ( I was completely ignoring everything ) as having gone threw this with Alfie we knew we would have to have more evidence then just what we said to get a professional diagnosis.

Pixie was due to be starting reception in the same school as Alfie in the September so we just waited to see what happened from there. However, the next few months gave me time to realise that if we wanted Pixie to have the right support we really needed to allow the ball to get rolling with the initial observations at nursery. It was reviled that Pixie really hadn’t made much progress with her mile stone at the next health visitor check, but she had found a new love of messy play and being outside.

But along came the obsession with hand washing. Pixie would literally wash her hands at any given opportunity and for what ever reason imaginable. She still obsesses over water and washing her hands now, however hand driers are an absolute trigger and are to be avoided at all cost.

Alfie on the other hand (no pun intended) will do anything not to get messy hands and cannot bare to get something wet on his clothes. I often think its strange how they both have the same condition yet dislike different things. in fact other then their lining and colour coding things they are polar opposite ends of the spectrum .

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