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