Our story…just keep on keeping on…

Our Story

We brought Wee Man home from hospital when he was three days old.  I remember a very proud Monz Man turning up at the hospital with the car seat, nervously strapping Wee Man into it, then gingerly walking through the hospital to the car with our precious bundle.  I was waddling behind desperately trying to keep up, then quickly thought better of it when a stitch twanged – eek!!

Early days

We drove home feeling every single bump in the road and adhering to every speed limit for the first time ever quite possibly!  He was just too precious to take any risks with…still is.

The first week at home went relatively smoothly – well, I did get told off by the midwife on day four for letting Wee Man sleep for five hours straight and not waking him up to feed him.  However, he’d been awake for the previous eight hours screaming, feeding, screaming, feeding then screaming again…so my instincts kinda told me he was a bit tired and so the hell was I!!  But being a first time Mum, I thought I’d done something wrong so took to trying to *make* him feed, even when he didn’t want to.  Well, knowing what I know now, it’s no surprise that he found a way to tell me right where to put my attempts to force feed him – even baby gums hurt when they bite!

Feeding and sleeping were our early main issues with Wee Man.  I know this is very normal for newborns, but there was something different about all this – he was definitely in pain and very unhappy.  I took him to see five different GP’s from the age of four weeks to ten weeks.  Eventually we were given infant Gaviscon to try but this relied on him actually taking the stuff…which he didn’t!  I never realised such a small baby could be so wilful, determined and be able spit so far!

Every day became the same; feeding; screaming; feeding; screaming; thrashing; fighting; trying to get dressed; feeding; screaming; trying to feed myself; screaming; trying to get out the house; screaming; feeding; feeding; screaming; screaming; screaming…days merged into weeks into months.  All the same.  I knew something was wrong, but all the other new mums were complaining about lack of sleep and lots of crying, so why should I think that we were any different?  But we were; I’d watch in awe as their new babies would latch on to the breast, feed peacefully, then fall into a restful sleep…Wee Man was definitely different.

I spent hours and hours trying to console him.  Trying to exorcise whatever it was that was torturing him so.   Monz Man and I would take it in turns to hold Wee Man upright on our chests; this seemed to be the only thing that would soothe him and he could at last sleep.  Many days and nights were spent like this, just trying to help him rest and sleep.  We learned to do everything one handed and to sleep sitting up; hell, I think I even slept standing up swaying a few times!

I recall the moment I finally accepted that he was different to other babies; I’d enrolled us on a baby massage course.  On the first session, we all took up our spots, laid out our warm towels and gently placed our six week old little beauties on them.  Except my Wee Man didn’t want to lay there.  He started to howl.  And thrash. And fight.  The tutor told me to begin massaging him anyway as it would calm him.  Err…well, that didn’t quite work out.  Instead of calming him down, I instead sparked a spectacular sensory melt-down and it was scary…and long; four hours long to be precise!

baby massage

At twelve weeks we finally got to see a wonderful Paediatrician who diagnosed gastro-oesophageal reflux.  She described drugs that would help, but I insisted on a Barium X-Ray before introducing medication to my teeny tiny Wee Man.  Sure enough, the X-Ray showed severe reflux, so I gave up all dairy in my diet and we started on the meds.  They were fiddly and faffy and impossible to get him to take – remember he could spit!!  Eventually he was prescribed Omeprazole, which was far easier to administer, and within a few days, the painful screaming stopped.  But by then, the damage to his feeding patterns was done.  He would no longer take the breast; he would scratch and attack me if I tried to breast feed him.  So, I began a long and torturous nine months of expressing my milk for him.  I won’t lie; I hated every single second of it.  I was beyond tired, but the only time I could sit down long enough to express would be when Wee Man was asleep, and he only slept for an hour at a time.  I wanted to stop so, so many times, but I didn’t.  No one else was pressuring me to do it, but somehow I knew it was best for him and that drove me on.

With all this going on, we didn’t really notice that Wee Man was missing a few milestones.  He didn’t seem significantly delayed at the time, but things that stand out now are that he didn’t smile much as a baby (not really surprising to be honest!); it was difficult to gain his attention a lot of the time; he hated to be held; he was happiest standing and swaying in his playpen glued to the mesmerizing tunes and images of Baby Einstein; he detested being dressed or changed; he didn’t really babble; but he was always very, very active.  He was climbing up the slide in our garden by seven months old, despite not being able to walk until 12 months.  He quickly became known as ‘The Hurricane’ at our antenatal class gatherings due to his intense hyperactivity and general ‘getting everywhere-ness’.

I went back to work in London when Wee Man was 12 months old.  And I was pregnant again…alas that baby, my ‘Little Dot’, was never meant to be and I lost her (I like to think she was a girl) at 12 weeks.

I have to say that first year of Wee Man’s life was desperately difficult.  But in a way, we didn’t know how difficult it was until now, when we can look back on it from a safe distance and remember.  At the time, we thought everyone else was having just as tough a time, so didn’t really think much of it.  It was just a case of keep on keeping on…much like today really.

keep on keeping on

This entry was posted in Autism, Autistic Spectrum Disorder, Early symptoms of ASD, Our story. Bookmark the permalink.

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