Good days and bad.

It was December and our first parent teacher meeting at school for Pixie-Faith. She had just completed her first term in “big girl school” reception class. Some people hadn’t agreed with the decision not to tell the school that pixie had previously been observed at her nursery setting, This wasn’t done to delay things simply that we had changed local authorities during the process of going from nursery school to big school and 1: we would still have to have it all done again as the key stages are different from place to place so any observations that hadn’t been given a formal diagnoses were irrelevant, 2: I felt it was important that Pixie was evaluated on her own merit not just because the school knew that her brother had a diagnoses, and 3: because I trusted the school and reception staff  1000%and if there was something to observe they would see it almost immediately and address the right course of action with us.

And address it they did , as we sat down at the tiny tables we expected maybe to hear how pixie was a shy child that preferred to play alone and that she was still a little behind with her speech however doing well. What we actually got told hit home hard and had both myself and her teacher in tears as she knew the struggles to well that I had already faced with Alfie. She explained how although Pixie-faith was adorable, but developmentally she was still only meeting the mile stones of a 2 year old, and obviously she was now 4.5 years old . It was time to face the stark reality that Pixie-Faith was highly likely to be just like her brother Alfie and indeed autistic too.

Alfie , at this point was just finishing his first term in year 2 and had made a handful of friends and was extremely willing to try and learn and please his teachers. all providing the days plans hadn’t had to change unexpectedly and the lesson plan was “as it should be “. Alfie hearing had made small improvements in the past two years and this was made even better but yet again the constant support from his teachers. Alfie was at the front of the class and given very clear directions as to what was expected from him every day and how. This in turn gave him growing confidence to say when he hadn’t heard the teacher or his peers and the tools to use to grow academically.

We had decided to try Alfie with school dinners for the last week of term too, with the thoughts that if he saw his friends eating them maybe he would like to try the new foods too. Epic fail !! he absolutely refused to try any thing but the fresh bread that was there to add to each meal and would then become unsettled in class and hungry later in the day. So back to packed lunch we went. Did Alfie have an exciting lunch box full of colourful fruit and veg snacks with different fillings in his sandwiches every day ? absolutely not , He would have a bread and butter sandwiched, a few mini cocktail sausages, a bag of crisp and a drink and if I was really lucky he would ask for some dippers, but then leave the cheese and just eat the bread sticks !!. That said every day his lunch box would come home empty and his little tummy was well fed.

A few months down the line and countless appointments later Pixie was well on her way to having the perfect education worked out for her, An education that meet her needs with teachers that not only really understood how to work with her on a professional level but teachers that really did care about her emotionally. Pixie had her own butterfly spot on the carpet to begin with, for small group time and while this helped Pixie understand where she needed to be she couldn’t cope with the fact other children would want to sit in different places each day and therefore she would become anxious and distressed, she then progressed to having a special chair just for her to sit on. Cue “princess Pixie” Pixie had told the teacher that she was a princess as only princesses had special chairs nobody else can sit on.

By the end of Pixie-Faiths reception year she was really enjoying going to school, she had one friend and her speech was progressing in the right direction however still very delayed. Additionally she had taken on a coping strategy to help control her anxiety. she had began to become mute.

Just to explain: being selective mute is not as simple as deciding not to talk, the brain is an amazingly clever thing and to protect it becoming more damaged it shuts down, In pixie’s case it is her ability to speak or communicate effectively. The only way I can explain it is by giving the example of playing hide and seek with a toddle, when they put the hands over their eyes and because they cant see you, they believe you cant see them therefore they are invisible, you cant see them so they think you don’t know where they are hiding.

So in Pixies mind if she doesn’t speak to you, you wont talk to her and she become invisible,her anxiety levels drop and her ability to interact increases, this however can take a matter of minutes or sometimes she may go a few days with very limited words.

At home the bond between Alfie and Pixie is unbreakable and they may as well be twins. They bounce off each other constantly and although they don’t play together they play along side each other with a mutual respect for each others space and an unspoken understanding that they need their own space.

However, Frustration levels are a huge challenge at home though as explained in an earlier blog Alfie’s hearing is very intermitted and sometimes he just can not hear at all and literally moments later the house is alive with noise and volume is a max.With this brings sensory overloud and the “classic” word meltdown is an understatement. With Alfie’s meltdown in full throw and lasting anywhere between 5 and 55 minutes this will trigger a sensory over load for Pixie too ! just to clarify I now have two very distressed autistic children in full blown sensory overload, a pre teen having a strop because he doesn’t want to do his homework an I’ve refused to allow him his x box until its done, so of course he feels like it would be fun to throw a tantrum at me to, oh and not forgetting this is after school most days and the dinner doesn’t cook itself !!

Do not get me wrong the house work would have been taken care of as if you remember from previous blog Steve and I reversed rolls in a bid for me to go back to college (almost finished that year whoop ) but he can not cook for love nor money and If I don’t get something on plates in front of these little ones soon I’m at risk of their sugar levels dropping through the floor, and bring a whole new meaning to the world “hangry”

Do I love my life of course I do but my god its stressful xxxx

(Alfie 6.5 Pixie 4.5, Tyler 11)

 

 

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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 .

Our first experience of terrible 2’s that turn into a 4 year long battle !

By the time Pixie-Faith had arrived Alfie was two and a half years old and growing more difficult by the day. I had never experienced the “terrible 2’s” to this extent before. Tyler had been by comparison a relatively easy baby, and as a toddler he would eat most things I made, and would play nicely with and alongside other children his age, loved going to nursery and could be left with any one just as long as they had access to either children’s TV or wanted to play with him, and sleep was never really an issue give or take the odd “bad night”. He would settle quickly when upset when given a cuddle or distraction and so having only Tyler to compare to I was very must mistaken if I was expecting the two boys to be the same .

By age two and a half I really believed my baby was broken! He didn’t sleep for more then an hour during the day and that was mainly what I called travel sleep, when we had to go out to do the school run he would be tucked up in his pram and moving, the minute I stopped or got back home ping eye open wide awake . Night time wasn’t much better either at a push we would get two maybe three hours solid sleep per night and no more then three nights out of seven !!!

If/when Alfie got upset/distressed/frustrated he wasn’t like other babies or toddlers where a quick cuddle would be all that is needed to sooth and settle or stop the screaming . The reason I use the word screaming here rather then crying is due to the fact that Alfie has two completely different noises. For example when a baby is in need of milk or comfort cuddle etc. you would get a cry or even a grizzle but when Alfie got upset or angry you would get an inconsolable scream that actually became worse if you tried to comfort him in any way. All I could do is move him into the middle of the room onto the floor for safety and just let him to take how ever long he needed to adjust to the situation in his own way in his own time. He would then either look at me completely oblivious to what he had been screaming for. yet still not want or enjoy a cuddle.

Alfie also hates food, I don’t just mean he is a “fussy” eater I mean he is terrified to try different food looking at new or “strange ” food can completely throw him into a frenzy. I breastfed Alfie for a year and by the time we were both done I felt like I had given a Jersey cow a run fir its money,and he was nothing less then my calf. I had a vision of breastfeeding for a while and then introducing all my own home cooked food like I had done previously with Tyler.

However if you could have seen or heard meal times at our house you would have though I was trying to commit murder not get Alfie to have something other then cereal or milk. To this day Alfie has a very limited and very beige diet. When I tell you I have tried everything to get Alfie to have more Varity I really do mean I have exhausted every trick in the book. One health visitor told me to give him smaller meals and if he doesn’t eat it take it away and offer it back again at the next meal time, telling me if he is hungry he will eat it !!! Nope not Alfie a full 5 days the health visitor got me to do that for and he is even more stubborn then me he simply went on hunger strike just living on his milk and cereal.

The next piece of advice a new health visitor gave me about Alfie eating “habits”   has actually proved invaluable she told me ” as long as he is eating something what difference does it make if his sandwich was just two pieces of bread and butter, what mattered was he would eat it “. She also told me it didn’t matter if he used a knife and fork or his fingers as long as that food made its way into his mouth it really didn’t matter. To this day Alfie rarely used a knife and fork. (does it bother me ? not one tiny bit! ) Finishing a meal every time isn’t important either, would an adult eat more just because they are told to even if they were not enjoying the food you were given ? of course you wouldn’t you leave it, so why do we constantly expect our tiny little people to do just that.

Clothes are another issue in our house with both Alfie and Pixie-Faith and have been since Alfie was tiny, if you come to my house please expect half naked children all year round. However I didn’t realise this back then and yes I do feel guilty now. Basically different textures and materials feel different to people with sensory impairment, for example if something is “lovely” and soft to me or you it could feel itchy or feel like falling in a holly bush for Alfie and Pixie.

So all of the amazing hand knitted jumpers my mum and other family members made us were probably very painful on their skin, no wonder Alfie would scream, can you imagine being cuddled while wrapped in holly prickles you just wouldn’t do it would you. It is fine for me to write this now although the realisation is still hard to digest that again potentially something I had been dressing Alfie in was causing so much distress to him.

With this in mind and now that I understand what was going on you may think it shouldn’t be an issue and that it wasn’t any fault of my own it was just a sensory overload that I had no idea was going on, but this is me here and my mind just doesn’t work like that and the truth is I don’t except that it wasn’t my fault. why hadn’t I noticed this earlier, I still feel is should have done more.

On top of this I had a very new born Pixie-Faith to contend with, a baby with full blown reflux that wouldn’t take a bottle regardless of what milk I put into it or who I asked to feed her it was an absolute no go. If the milk didn’t come straight from breast to mouth she literally would not take it. she would feed for a full hour most of the time for me to put her down and then a few minutes later be cleaning it all back off the sofa walls and floor and anything that she managed to hit in between with her projectile vomiting, She didn’t sleep at night and still doesn’t now .

on the rare occasion I did  have her off the boob long enough to get her into her mosses basket to nap Alfie would inevitably go into meltdown mode and wake her up. These melt downs could be brought on by someone unexpectedly popping round to see us as those close to me could see the struggle and wanted to help, what they didn’t realise was that Alfie just couldn’t cope with things like this and so just like these days things have to be planned and organised in advance. Again this is something we now know and do our upper most to adhere to but back then I didn’t have a clue.

I was constantly told Alfie was spoilt and I gave in far to easily compared to how I was with Tyler, but as I said Tyler really was a relatively easy baby and toddler. With Alfie things had to be done his way or no way , I remember saying to family please don’t just go and pick Alfie up, let him come to you, don’t try and be his friend , let him be your friend first, it was becoming obvious that Alfie needed his own space.

I know people though I was just being difficult and to keep every one at arms length but I promise you I really am not that much of a cow! To a point I guess I would agree they may have had a point to why they felt like this as I completely blamed myself for everything that had gone on during the pregnancy and labour and delivery with Alfie and all that happened during his first few weeks of life, including the diagnosis of auditory neuropathy spectrum disorder.

I had fallen into a very dark place. I felt like I had already let my boy down and there was no way I would ever do that again, I wouldn’t let him out of my site, I felt I had to protect him, look after him care for him, and keep him safe. He was my son, my responsibility and I wanted and felt I had to prove not only to myself but every one that I wasn’t a failure. When I say everyone I literally mean everyone I wouldn’t even let Steve change his nappy or put him to bed. Alfie was mine and I was going to show him and the world that I was the best mum my boy could ever have.

But honestly I really didn’t mean to be such a cow. I could tell by now that Alfie didn’t like to be touched or crowded unexpectedly. I had been putting it down to the auditory neuropathy maybe he was becoming startled or made jump if he hadn’t heard someone coming to him and then reaching to touch or pick him up would scare him.

Another thing I was also really struggling with was the fact that Pixie-Faith was indeed a little girl, I felt that I shouldn’t be allowed to keep her that some how by having another little girl after having our little angel was betraying her memory. Almost like I wasn’t good enough to keep her safe inside me so why should I be given the chance to have Pixie. needless to say by the time Alfie was three and pixie was six months I was a complete mess both emotionally and physically.

I reluctantly decided to get Alfie into pre school for 15 hours a week spread over 3 mornings, in a bid to go to baby group with pixie and maybe even grab a warm shower while pixie had some much needed undisturbed sleep with Alfie having fun and making friends. it felt like the perfect solution. However it soon became clear when Alfie did start pre school just how challenging and different his behaviour  was. Not just his faddy eating or his meltdowns it was the obsessing over certain toys or objects and how the slightest change in his routine would completely throw him into a frenzy and would result in a call for me to collect him early as his meltdowns were to distressing for both the staff and other children at the nursery.

AS bad as this may sound I was glad it wasn’t just me that got to experience these, maybe Alfie didn’t just hate me, maybe it was something more ? So when the nursery contacted me and express there concerns and requested I agree to a behaviour assessment and observation for Autism I was glad of the intervention, but the thought of someone else picking my child apart and my parenting skills apart was terrifying, but I owed this to Alfie, I owed it to him to be assessed I owed it to him to defend the fact that he wasn’t naughty or spoilt he was just “different”. and if there was any one going to be his voice when he couldn’t use his own that person was going to be me.

over the next year more observations, hospital appointments, audiology appointments and referrals came ad to be honest  they all rolled into one blur. Pixie-faith was growing fast and so were the concerns. I had somehow managed to realise that I did deserve to keep my baby girl and that no one was going to come and take her away, but wow she was a hot headed diva of a baby girl, or at least that’s what I wanted to believe. I didn’t want to believe that she was indeed displaying so many of the same traits as Alfie had done before, I didn’t want to feel that she could be anything less then perfect!

Yes I did just say less the perfect!!! and No I do not think that Alfie is not perfect in fact he is more then perfect he is amazing in every way but because we live in a society where if you have a “label” as being disabled regardless of what your disability is you are considered by many as LESS.

“Less abled, Less willing, Less competent”

My children are not any of these things they may be different but they are not Less !!

#different not less #look for the able not the label #differently able not disabled !! #autism rocks

Alfie and Pixie-faith I am your voice when you cannot use your own I will never change you for the world but I will try and make the world change towards you xxxxx

 

 

 

So where did it all begin ?

Alfie was born on the 29th December 2008 by emergency caesarean section(C-section) at 34 +4 weeks gestation. He was a 8lb1oz bundle of water filled and swollen gorgeousness. However this little man had tried to escape 3 times previously. At 19 weeks gestation I was in early labour and told that if things did progress there wouldn’t be anything that could be done to help or save the baby, If I were lucky I may have just a few minutes with him to say our goodbyes. My heart sank as just 7 months previously this exact thing happened to us as I gave birth to my second child a little girl born sleeping. How could this be happening again how could they not make it stop ? I was lucky this time thou as the medicine they gave me worked and my contractions stopped without causing to much of an issue.

24 weeks into my pregnancy strike 2 ! Operation escape mummies tummy had commenced, This time I was bleeding and contracting and although 24 weeks is considered the time when a foetus is viable for life in the UK, the likely hood of taking a healthy baby home without life long complications is still devastatingly low odds. I was given two steroid injections 12 hours apart in aid to assist with maturing the babies lungs should he be born this early he would need all the help he could get. I was also given the medication to stop or slow down my labour to help bide as much time with Alfie in side as we could. It was in the middle of the night when the consultant came to me and sat on the bed to tell me although the hospital can take “24 weekers”    they just did not have the cot available in the neonatal intensive care unit (NICU). this meant the reality was that if Alfie did make an appearance there was little the would be able to do.

OVER MY DEAD BODY !!! was I remaining in that hospital a minute longer then I had to, now with my contractions between 7 and 10 minutes apart but still only 2cm dilated my fears of having to say goodbye before we even had chance to say hello were flooding me. It left me no choice I would fight with all that I had to get me and my baby out to a hospital that did have a incubator ready to save my baby or at least give him a chance of life on the outside, so with the help of my husband and a midwife that simply went above the call of duty calls were made to friends and family that were near hospitals with the facilities we needed ( unfair or cheating the system maybe but if your unborn babies life literally depending on it I’m guessing you would do the same). basically we had to say we were temporally able to move back into the catchment area of the hospital to be excepted into there care, I wasn’t about to play postcode lottery with my babies life. So blue lights blazing a midwife and ambulance crew I was off back to surrey to the hospital I was born in just five minutes away from my mum and das house.

Two weeks later after I don’t know how much IV fluid and antibiotics bed rest was ordered and I was allowed home to be monitored and Alfie was still inside. Although the nightmare was to be continued at 32 weeks gestation we were back again in hospital, It was there that we found out I had a urinary track infection (UTI) that had been laying masked by the other bouts of antibiotics but never really completely treated. this was causing my uterus to become irritated and in turn go into spontaneous premature labour. A further 10 days of treatment and I made it home.

Just under 34 week in fact the 23rd December 2008 it was decided that following a scan that now showed Alfie to have growth complications, (He was measuring big around the tummy and small everywhere else) to book a  C-section was the best way to get him here safely. Little did we know that a safe delivery was not on the cards.

On the antenatal ward I was placed on a monitor blood pressure taken and all vitals recorded told not to eat or drink any thing and someone would come and see me soon. The doctor and surgeon popped to see me within the hour and checked the trace from the monitor, I was told they needed to keep me on it for a while longer and they would keep an eye on it from the nurses station, they muted the noise so not to disturb other patients and away they went. I was told to get some rest as when baby came it would be all feeding changing and sleepless nights, Thank god I wasn’t a first time mum and this didn’t vase me.

A few hours passed and I dozed off waking to be surrounded by a team of surgeons midwifes and the on call paediatrician, Steve was given scrubs I was literally striped and put in an open gown and put on a trolley were I was wheeled to theatre (or should that be run to theatre) I was told they had one chance to get the epidural in or I would be put under general anaesthetic to deliver the baby. I have never sat so still or been so scared in my whole life. What I hadn’t realised is that the trace on the baby heart rate monitor had been dangerously low and although a baby having dips or decelerations can be quite normal they are expected to return to normal almost as quickly as they drop. Alfie’s on the other hand had never quite got back up to any where near the normal range  and in fact had been continuing to drop.

“My little boy had been in real danger and I hadn’t even realised !! what type of mother did this make me ”

Alfie was born just minutes after we arrived in theatre born blue floppy and lifeless without taking a breath or that all important first cry, instead he was resuscitated immediately and ventilated in theatre, before being whisked away to NICU. I didn’t even get to see him, I begged Steve to go with him but the doctors told him they would come and get him once Alfie was settled. They needed to do their jobs but I didn’t want my baby to be alone.

Later that day I was given a picture but still not allowed to go to be with Alfie. Steve had seen him but had simply been told he was a very poorly boy and the next 24 hours would be critical. It was 36 hours before I was well enough to be wheeled into see Alfie I had lost a lot of blood and still couldn’t pass urine, but enough was enough I Needed to see my boy.

Alfie had a lack of oxygen and had needed to be resuscitated 3 times in total in the first 36 hours of life and I hadn’t been able to be there, I could even hold his hand . We were finally all allowed home 4 and a half weeks later having been seen by the consultant and briefed a little on what to expect with Alfie. He had failed his hearing test 3 times and was likely to be profoundly deaf. A follow up was arranged in clinic for around 8 weeks. Because of the lack of oxygen he would have learning and developmental needs and we shouldn’t expect him to reach all of his milestones and communication would be a challenge. (good job I like a challenge then ).

At 8 weeks we had the audiology appointment where the outcome was bittersweet. On one hand we were told Alfie had a diagnosis of auditory neuropathy spectrum disorder in short means the auditory never running from brain to ear that transmits sound waves has not matured in time for delivery, but this also means there is a chance that It could mature over a period of time. If this happened then the nerve may well begin to have a more normal function. however this was likely to take up to 18 months and would mean a lot of lost first sounds and communication in speech and language were going to be inevitable. Equally likely was the chance that Alfie may never hear and never learn to speak a recognisable word.

Leaving us in limbo of course we asked all of the usual questions :

“how about hearing aids?”

“how about grommets?”

“how about cochlea implants?”

and to each question we had the answer, “due to auditory neuropathy being a spectrum disorder and Alfie young age all we could do is wait and see”. The team asked me about my pregnancy and labour my own personal health and genetics and the links between them all pointed to me , the premature birth, the premature labour and the amount of strong medications that were needed to stop these progressing were all down to my body not keeping him safe. down to my body doing what it was meant to do.  (cue self blaming). It had to be my fault after all I had already had one premature baby and his dad was different therefore it couldn’t be genetics on Steve’s part. And it certainly couldn’t be the amazing team of NHS staff that if it wasn’t for many of them Alfie and I wouldn’t be here now.

Fast forward 2 years :

***SUPRISE*** Cant quite believe that I’m being talked into peeing on a stick ! yep its a pregnancy test and ping the clearest two pink lines have appeared and its not even sitting on the side of the sink yet! Oh my god I’m pregnant ! I cant be though surely its a false positive, a dodgy packet. I mean I cant have children naturally. both the boys were assisted conception. And following the internal mess I was left with after Alfie’s delivery I was  told that I would need further assistance to have more children in the future.  That must have been some good champagne new years eve 2010/2011!!

so at 9.5 weeks and 7 more pregnancy tests later we attend our first scan to officially confirm that we are indeed having another baby. The scan showed an even bigger surprise and how we didn’t literally fall on the floor I really don’t know, there was two babies there. however another bitter sweet day approached us 2 weeks later when stood at the kitchen sink I felt a sudden gush between my legs. As I look down the floor was covered in fresh red blood, with no sign of it stopping we went to the hospital and had a scan. There  it clearly showed one good sized baby with a lovely flickering heart beating strong and another area full of emptiness and blood, this was the area that baby two had once been. It was confirmed that the twin pregnancy had come to an end and was now a single pregnancy. although devastated by the loss of one of the babies we clung to the hope and faith that we wouldn’t lose the other. (Pixie-Faith’s name is a constant reminder that we will always remember that there were once two babies )  Surprisingly the next few months of my pregnancy with pixie went smoothly, that was until around 24 weeks gestation, This appears to be when my body decides it doesn’t like growing a tiny human.

With premature labour starting we were going through an all to familiar process to slow things down and prevent another early delivery the steroid and antibiotics IV fluids and a 5 day stay in hospital before I was allowed home again. This time I was booked for an elective C-Section on the 13th September at 38.5 weeks to try and prevent the challenges we faced with Alfie. However little miss had other idea’s at 35+6 days gestation my waters went pop and Pixie-Faith was on her way, I had decided that if I went into natural labour around my section date I would try for a V bac (virginal birth after C-section). I had never really got over the fears that something would go wrong again if we did have the section as planned, even though I was assured that there really was no reason to feel scared. Nevertheless, My birth with Tyler was amazing, it was quick and painful but I did it I was a bloody trouper. In just 2 hours and 20 minutes pushing I went from 5cm dilated to having delivered a baby . Even having to have a blood transfusion and internal and external stiches didn’t scare me as much as not realising my babies heart rate was in immediate danger. One full day of labour and finally getting to the point of wanting to push my body has other ideas, it decided it really didn’t want to play this game any more.

My heart wasn’t coping well with the labour and before I knew it I was flat on my back Steve back in scrubs and heading to theatre for the dreaded emergency section.  but then She was here weighing a tiny 6lb4oz and screaming. She was brought straight to me and then for daddy cuddles while he took her back to my room I was stitched back together and could hardly believe she was waiting for me to come to my room. Placed on my chest ready to try feeding I was on cloud nine, our beautiful baby girl was here safe and sound. it was a little while later when I began to notice Pixie wasn’t breathing well and her colour was a blueish tinge and only pinked up when she was being rubbed (stimulated) by me, we buzzed the emergency bell and off she went to NICU again my world fell apart. She was kept in NICU for 48 hours with C-PAP to assist her oxygen levels and kept under blue UV lights to help with her jaundice levels then back with me ready to go home, Feeding issues due to a tongue tie were resolved by ten days old and finally we could start to get on and live life as a family of 5. What could possibly go wrong ? !

just a mum doing what mothers do or am I?

When I became a parent for the 2nd and 3rd time I already knew that sometimes things don’t work out as you plan. Tyler (14) was 5 years old when Alfie(9) came along I was divorced from his farther by the time he was just 18 months old. Tyler was born at 30 weeks gestation and so I am no stranger to the shocks that parent hood brings. Tyler remarkably has no additional needs and is fighting fit taller then me teenager. Nevertheless, in a different relationship stable and now living in a different county I decided next time it would be different, next time it should, could and would go to plan, wouldn’t it ????? .

So when I stumbled across a post on social media I was surprised and emotional to say the least at how much truth there was staring at me, this is an adapted version of what I read.

“When I first became a mother I had a clear vision for the future, and what type of family we would be. How I would teach my children to say their first words and listen to them read stories together every nigh before bed, we would enjoy the most amazing days out, we would go to the park all of the time, visit play centres and make lots of same age friends, visit museums and be tourist in London.

I’d teach then how to play football (like I had done with Tyler), or watch at dancing class and our weekends would be filled with visits to friends and catching up with family, our social lives would be hectic. But so far being a parent to Alfie and Pixie-Faith has been quite different.

The first words didn’t come easily and were much later then most, and reading out loud the bedtime (or anytime) stories are still a long way off. There hasn’t been a museum trips and a London tourist is not ok. There hasn’t been football matches and dance classes with sparkles and pretties everywhere. Visits to  friends and family are always minimal and our social lives are low key.

Instead ; AUTISM has taught me to become a different parent.

Autism has taught me to be a parent who will: bounce on the trampoline, sing songs loudly and make up all the words, to massage feet, squeeze, rock, blow bubbles, rip paper just to watch it fall and jump in puddles and splash all day.

Autism has taught me to become non- judgmental of other parents, to be more accepting and to develop a level of patience that I never knew existed.

Autism has taught me to be a parent that will do anything whatever it takes to ensure my children get the right support to live the best life possible.

I may not be the parent I had once had a vision of being,  but Autism has taught me to be the parent my children needs me to be !!

So here it is my first blog from my “little book of Autism” here to share my experiences, the highs and the lows (and wow there are a few) the Challenges, heart break and happiness that follow the tiny steps to reaching the mountain of milestones but most of all I wanted to share the unconditional love that autism and being a parent to a children with additional needs brings.

if you chose to journey with me and my little book there will be both good and bad things that you read, and I wont promise it will be captivating bedtime reading. But what I can promise is real life, raw emotion and true honest accounts of living with autism and auditory neuropathy spectrum disorder, This is purely my own account and point of view and is not meant to be a medical recommendation in any way. It is in fact most of the time trial and error   or if we are being really honest error and more error!!  But what ever is written be sure that it comes from the heart .

some of my favourite quotes to date and ones I will probably repeat many many times:

“different NOT less”

“until the pieces fit”

” A walk down autism lane ”

 

If you have got this far thank you for reading and I hope this will somehow be the start of something special xxx