Insomnia.. I can’t get no sleep

The ‘Faithless’ hit from the 90’s, the theme tune to my youth, made me jump up and down and dance like crazy.. Is now a reality..

I wonder what my twenty something self would say to me now..

When son No. 1 stopped sleeping, as I’ve previously talked about.. we thought it was a phase.. we thought he was being difficult.. naughty.

I gets no sleep

I can’t get no sleep

I can’t get no sleep

I can’t get no sleep

I need to sleep, I can’t get no sleep

I need to sleep, I can’t get no sleep

Insomnia by Faithless C1995

When son No. 1 stopped sleeping, as I’ve previously talked about.. we thought it was a phase.. we thought he was being difficult.. naughty..

After his diagnosis, we were surprised to find out insomnia or disturbed sleep was common in children with Autism.  We were advised to put in place a consistent bed time routine and come back after six months, if it was still an issue.
Seven months plus later, and the eye bags were noticeable on both of us. The desperation was palpable, the sleep issue was affecting everything.

Work was a challenge for both the Daddy and I, we found ourselves sleep walking through life.

Often we ended up falling asleep with son no.1 in his cramped bunk bed or lying on the carpeted floor next to him.

On the days when we’d really given up, we let him sleep in our bed.

If we wanted him to stay upstairs and rest.. not even sleep, then we had to stay with him.  Soothing, stroking, tickling his feet and his back.

Throughout Son. 2 was a dream sleeper – still is to a certain extent.

The Daddy worked shifts, and on his late shift I was alone with the task of pacifying, pleading, calming and absolutely pulling my hair out at my inability to get son no. 1 to sleep.

I really felt that I had failed in my ability to parent. In the age of the ‘Super Nanny’, I allowed my five year old to be in charge.  How silly of me to let him sleep in my bed.. How stupid to allow his lack of sleep to dictate my evening meal time. It was clearly down to my bad parenting.

My mealtimes became later and later, once son no. 1 finally closed his eyes, I was able to eat my evening meal sometimes at 10pm if I was lucky or on the evenings it was pushing midnight there was no point.

Those evenings, where not an episode of Eastenders or the latest police drama were watched – were hard. There was no me time. There was no work time. There was no energy.

On the evenings where the Daddy was at home, and on an early shift, he would often take control of bedtimes.  Still the meals were late, but at least I was able to cook whilst he lay upstairs tickling feet.

If I was meant to work on a report or catch up on the hundreds of work emails received daily, I struggled.

Sleep deprivation is an instrument of torture. Throw in two children, two dogs, a challenging job and running a family home and you’ve got the perfect recipe for depression, anxiety, fatigue, stress.

And still we battled on, until the tiredness and the depression took over.

Tiredness = Depression = Tiredness 

Marking time on the calendar, I made the call to the consultant’s secretary.  This is where we are at, it has been six months.  We have a routine (of sorts), I am unfit to work, I am sleep deprived… we all are… please help.

Eventually after some calls back and forth we were granted an appointment, another month down the line.  This time with our consultant’s registrar.

Picking through the notes and questioning me on my children’s bedtime routine, it became evident to the Doctor that help was needed.


And so we were prescribed Melatonin, not licenced for children in England, our health authority could only prescribe it via a consultant. And so repeat prescriptions were only given after a visit to the hospital.

NHS and Insomnia

Beautiful and asleep x


The initial effects of the drug were so effective I would of hopped, skipped and jumped through any hoop, to make sure we had enough!

Then it was time to move, another County, another health authority and another set of hoops..

Useful Links:

The National Autistic Society

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My Ausome Girl: The Phoenix Effect. 

This wonderful Mummy of two, shares her experiences of life as a mother to two children with additional needs – a much needed perspective on Autism in girls. Well done on putting yourself out there and sharing your experiences ūüėä

My Ausome Girl

‚ÄúDifferent not less‚ÄĚ.


Being a mum of an autistic girl is challenging, rewarding, devastating and an emotional rollercoaster. Their ability to mask, mimic and cope, holding it all in until they feel safe. It’s well documented but little understood. Unless you have experienced it , you can symphasise but not emphasise.

Continually self-defeated, trying, wanting, needing to get the right support yet constantly hitting a brick wall.This is the PhoenixEffect: the ability to rise again, stronger ready to battle, ‚ÄúI willbe heard‚ÄĚ.

As a parent of two children with additional and opposing needs, days are never the same. Getting the balance between the sensory seeker and the sensory avoider, finding my calm in the storm. Balancing the brook with the whirlwind swirling through, completely indifferent to the screams of ‚ÄúBe Quiet!, I‚Äôve had enough!‚ÄĚ. One of the hardest challenges is knowing how sensitive her hearing is‚Ķ

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Autism Awareness

Those of you that read my blogs know that I haven’t written in a while. Life is hectic, it always is, but I have found a few moments to write this short piece:Son No. one has Autism. Autism brings great joy – he is different and that’s a good thing.

He sees things in a different way, he plays in his own unique way, he thinks about things on a different level. We truly need these special unique people in our world.

Life is often challenging, forming friendships and maintaining them is very difficult. You see he doesn’t understand the social intricacies of being a friend and he certainly isn’t able to understand when a friend says no, needs space, a break or time with others.

It’s hard for his friends too, some get it, some are trying and some have probably given up long ago.  I understand, they are young children, all under the age of nine. In a world where adults often don’t understand, how can we expect our children to.

Indeed I was a Mummy with two children, I admit that I found it difficult to understand, until I had to. And I’m still learning.

This is Autism awareness week. Please do what you can to learn about additional needs and Autism. And pass your knowledge on.

Don’t be afraid to ask questions. I’d rather you ask, than avoid a parent or child with Autism.

I am grateful, for being surrounded by a good community, great friends and an amazing family.  But in life there are times of painful loneliness, when you just don’t know what to do, or where to turn.

Be that person that reaches out, you never know the difference or impact you can make to an Autism Parent.

Autism is scary for me  and our family.  I try not to think too far into the future. Just focus on the here and now – fix each day as it comes – learn something new each day, to prepare you for the next.

It’s Ok to be afraid of what you don’t know or understand, but is not OK to be ignorant.

The Autism Mummy

The Bells

The Autism Mummy must plan, must prepare and must think ahead at all times.. And as much as I can plan, and can prepare and do think ahead.. I want my children to have the spontaneity of childhood, the freedom to try new things and the excitement of a surprise.

So sometimes I just take a chance, a whim, I am spontaneous, and sometimes it is wonderful and full of the joy of childhood.. ¬†And sometimes it’s a complete and utter bloody disaster.

And so it had been one of those mardy,¬†miserable days where the children didn’t want to go or do anything and the weather matched their moods. ¬†To be fair I wasn’t much better. ¬†The Daddy was working and going onto play football and so our Saturday pretty much sucked.

Apart from catching up on the housework and drinking copious amounts of tea with my lovely Mum, nothing much was happening.  But as the mardyness of the day continued, and the boys began to run around the house and fight each other Рenough was enough.

“Right we’re going out” – I announced to my miniature audience. ¬†No amount of questions and whining would cajole me into revealing our destination. ¬†And so packed up in the car we drove the short distance to Ottery St.Mary Church.

On arriving I announced that we were going up the clock tower! ¬†The boys were ¬†excited, the nanny not so.. Oops I had forgotten¬†the Nana’s fear of heights..

And so with the usual words of warning, along with a few threats before leaving the car, we made our way up the ancient steps and into the magnificent church at Ottery St. Mary.

Son No.1 went ahead, followed by me, son No. 2 and the Nana. ¬†50 ancient spiral steps, in a confined space – this surely couldn’t go wrong..

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And so at the top of the steps we entered¬†the clock tower; a¬†dusty old room with beautiful oak beams and the mechanism of the church clock and a massive trapdoor to lower the bells from up above. ¬†The boys were fascinated and asked questions ten to the dozen, my heart swelled with pride and I was so chuffed I’d decided to be spontaneous!¬† Next we were asked if we would like to go across to the other tower.

 

 

 

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Across wobbly planks we all trod a tightrope walk across the vaulted ceilings of the church, I tried  not to think too much about the age of the building and my own unfounded fears of falling through to the church below.

The boys loved the adventure and the sight of seeing the unseen.  This was a success!.. The Nana gritted her teeth and to her credit trooped on (she revealed later she was being brave for her grandsons).

And so with a wobbly turn around, we trooped back into the clock tower, before making our way up the next set of tight windy spiral steps to the room above, housing the bells. A small vertical ladder allowed access to a single plank with balustrade, to view the bells and to allow access to the next vertical ladder and up to the church roof.

And so Son No. 1 climbed the short ladder to the balustrade followed by me and Son No. 2.  It was then that it happened..The Bells..

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“Are they going to ring?” Son No. 1 asked – “Yes they’ll ring five times in about one minute’s time – it’s nearly five o’clock” answered the helpful curator. ¬†Cue meltdown in a confined place, in a holy place, with my eight year old son yelling “God damn it – get me out of here”.. Meanwhile Son No. 2 has made a break for it and can’t wait to get up the ladder and onto the church roof.

I was torn between both sons – do I go to help the meltdown and prevent him falling amongst the bells.. or do I go to Son No. 2 and help him see the church roof. ¬†Thank the lord for Nana’s (And that of one with a fear of heights) – without hesitation as the bells began to clang (and they are extremely loud when you stand next to them) – Nana said – “Don’t worry I’ll take him back down – you go back on up and see the roof”.

And so with the sound of bells and my son screaming and shouting “Nana I’m having a heart attack!” fading below me.. I made my way up onto the roof with Son No.2. ¬†Wow what an experience and one that can only be repeated at the annual opening of the church tower. ¬†The view was stunning and the experience breath-taking, on the top of the roof the names of two evacuees are scratched into the lead along with the Year 1944. ¬†My youngest was in awe and I was so glad we’d been spontaneous.

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Climbing the ladder down it was not the bells I could hear – but the sound of Son No. 1 still screaming in the church below.. ¬†as quickly as I could I made it down both sets of spiral stairs and found Son No. 1 sobbing half way down the second set of stairs. ¬†“Mummy I was scared”. ¬†A big cuddle and I carried him as best I could down the remainder of the stairs and into the church.

Away from us the Nana is talking and explaining the situation to one of the church members¬†at the church. ¬†As I would hope in a church… but not from all people ¬†– there was no¬†judgement.. ¬†I was able to soothe and relax my son in peace. ¬†I later found out that my mother had been passed some details of someone who might help us – a lovely act of kindness from ¬†a stranger.

I spent another ten minutes or so hugging Son No.1 so hard and soothing him. ¬†You see,¬†towards the end of a meltdown as it begins to relent.. My son’s emotions have been so outwardly strong that they then¬†implode on him. ¬†His words are so downhearted, so sad “I’m so stupid, I want to kill myself, I wish I wasn’t your son”. ¬†Early on I’d been told by our paediactric consultant that Son No. 1 may suffer with anxiety and depression – I can see why.

I often cry silent tears with him, but today I soothed, I hugged, I promised there would be another day.. Because next year I’ll prepare like an army sergeant going to do battle. ¬†I’ll plan and I’ll ensure that we make it up that tower between the dongs of the bells. ¬†And if I have anything to do with it the Nana will be there too..

 

Dancing in the ocean…

Week four of the summer holidays and I have survived… Actually enjoyed my time so far.. Although thanks to my lovely Mum I have had some respite and some ‘Us time’ with the Daddy.
Reflecting this morning the Daddy comments on how well Son No. 1 has behaved this week…. Apart from calling me a ‘Fatty Jumbo’ 20 million times, pinching my bingo wings and biting my boob… Yes he has been GREAT!
However all minor indiscretions considered he has done remarkably well, (a lack of routine has quite an impact on life) However Son No. 2 is a different story..
Whilst attempting to bake a Victoria sponge for the village flower show.. I realised that it’s failure to change from yummy cake mix to a fully risen Mary Berry sponge was down to the inability of my oven to heat up at all… In fact the oven was cooler than my over stocked wine fridge (Us Autism Mummy’s need a fully stocked wine supply).
So the Daddy has to unfortunately forsake his weekly lie-in to unscrew the cooker housing and ascertain that it is indeed the element that is broken and not an entire cooker.. Thank the lord… I can still buy this months prosecco quota!
Son No. 2 has in the meantime turned into Damien and (possibly down to low blood sugar levels, because he won’t decide on what he wants for breakfast) is flinging himself around like a Diva. Pouting and stropping – the Daddy helpfully comments ‘I don’t know where he gets that from…’.
Two spells on the naughty step later, and he finally eats his breakfast (No. 2 son… Not the Daddy).
Pretty soon after, the Daddy and I decide that fresh air and the beach is called for and the garden trellis the Daddy has been threatening to finish for three weeks can wait..
And so, an hour later after the usual trials of leaving the house, I sit on our favourite beach, in our beloved East Devon and I think (not too hard you’ll understand)… For I am on the beach.
I am so lucky and so blessed that we have made it, and that we realised our dream probably thirty years earlier than we planned. And yet there are some that would say we are not blessed, that we are unlucky because of no. 1 son having Autism.
Yes there are times… In fact most days, when the enormity of the situation, the responsibility of getting it right, the hurt from the words he doesn’t mean and the cruelness of others insensitivity or ignorance – is just all too much.
Yet when I am watching him, dancing on the shore, he is at total peace and at one with the world; that I know we and the world are lucky to have him.
You see, he has total affinity with the water, he loves it. To others he may look like a flapping bird on the shore, his arms wildly twirling and flapping. To me he is dancing.
Today there is a chill in the air, like autumn is on it’s way… But I truly hope it isn’t… I’m not ready to give up the sun! And I pray for an Indian summer, to extend our carefree playtime.
No. 1 son does not notice the chill, instead he dances in the cold sea, he could be there hours. He does not notice hunger, thirst, the cold. He is happy with his own company and that of the sea.
Under the grey skies the reflection of No.1 son’s dancing form glistens on the wet sand. He’s skipping and jumping and leaping across the ripples of the outgoing tide. He’s so happy and any worries any anxieties have left his over thinking mind, whilst he enjoys his favourite place.

Meanwhile Son No.2 continues as he started the day.. Moody, Mardy anything but cooperative.
He’s not happy.. With the temperature, the lack of snacks, treats, the flavour of his fruit shoot…

And still when we get home he’s still not happy.. I think that sometimes Son No.2 uses any gap in proceedings to gain attention.. And who can blame him.. He so often has to be the ‘big brother’, ‘the peace keeper’; that there is no surprise when he reverts to ‘the baby’.
Tonight he has called the Daddy a ‘bugger’, it’s not a word we use.. And yet he’s delivered it with a smirk to the Daddy..

And so after tea, he’s missed out on pudding and gained an early bedtime.
An hour of crying and general grumpiness ensues and the Daddy manages to fall asleep before Son No.2 on the bottom bunk.
Once again at the end of the day, I find myself reflecting on the day and life in general.. And I know that our life is great… Not perfect.. But great.. It may be tough, but we’re twenty minutes from the sea.
And despite my wish for an Indian summer – we will be on the beach in sun, rain, snow, hail and gales.Whatever anyone says or thinks. I know, the Daddy knows, and our boys know that moving to Devon was the best thing that we could ever have done for our little family. 

A lack of sleep and a big idea…

We were living in a busy town with an even busier  work life and the social life that goes with it.  I worked, I was dedicated, I was doing the best for my family.. The Daddy worked, he worked hard.. Shifts in a local car manufacturer.

Like most hard-working families we towed the line, and did the best we could… Working all year for the two week holiday abroad or to our beloved Devon. ¬†But those two weeks never seemed enough.

Still we worked, still we juggled the hours.. and boy did we do the hours.. working from home and in the office..  We enjoyed a good standard of living, the nice things, the nice holidays, the beautiful home and the new cars, they all softened the blow of the hours..

My lovely Mum was often cross with me for being late home.. she could see it, even if I was blind to it… “These boys need you home.. They are your priority”… I thought I was being like my Dad, my late Dad (and no, I don’t mean in the timekeeping sense – although he was well known for that).

I’d always had a good work ethic, I always wanted to please others and I worked hard to be the best.. sometimes to my detriment and the detriment of my family.. I can see that now.

Without seeing it coming… it kind of crept up on me.. us…. our little family.. things started to change..

The signs had been there with No.1 Son.. but without being an expert… or indeed a paranoid mother.. they hadn’t all added up.. One of the major symptoms had been sleep and the lack of.

My once peaceful, sleepy boy, who slept through the night and was no trouble to get off to sleep.. suddenly started being ‘naughty’ at bedtime. We returned from a fortnight in Greece, and thought he was out of his usual bedtime ‘routine’… For weeks ¬†the stress levels at bedtime were raised and we all struggled to settle No. 1 Son back into a routine.

In fact he never settled back into any form of routine..And so for nearly eighteen months we struggled.. Up and down the stairs up to twenty times a night… sometimes sleep would allude hm until midnight and gone.

He was tired, we all were.

And yet we all carried on, with the hours… at least we tried.. working in the evenings was challenging to say the least. ¬†Sometimes we could do it… ¬†we’d tag team the Daddy would settle No. 1 Son, whilst I attempted to catch up on the reports due in or the emails that were threatening to explode my mailbox… It all seems so pointless now.

Other times we compared notes ‘I lost it today – I shouted at him’, I fell asleep in his bed, when I woke up, he was playing cars on the floor’.

We were zombies.. we were so tired and No. 1 Son was too. ¬†We even had reports of him falling asleep in class, the school was great – I explained… he just won’t sleep.

We sought advice from the Doctor and the Health Visitor – routine… he must have routine.. try lavender. try black out curtains.. try a warm bath.. try a milky drink.. ¬†Believe me it was all going on.

And so there came a point where something had to give… And I was the first to fall… The Mummy.. It all came tumbling down… I finally believed my suspicions, I finally took on board the schools observations.. And finally the Daddy and I started our journey to gain a diagnosis…

I took some time out from work… I needed my space to think..to do the best by me and my family.. I sought solace in the advice of my oldest and dearest friends.

It was during one incredibly open and frank conversation with one of my very best friends that a discussion took place that was to change everything…

The question was asked “If you could do anything – what would you do?”… It started with ‘I’d own and run my own cafe.. selling cakes and sandwiches… ideally in Devon..’..The conversation evolved and plans were laid bare..the idea formed and I thought.. “What if?”.

And so after a good nights sleep and a plan of sorts forming in my head I began the drive back to the town where I had grown up, the town where we lived, the town which was everything we’d ever really known..

On the way, the Daddy rang to check in on my arrival time back to civilisation.. Only to be greeted with the bombshell “I’ve had an idea… what would you say to selling the house and moving to Devon…”.. And so the seed was sown…

 

Meltdowns and Ice-cream

I often find myself thinking about our social plans for today, tomorrow, next week.. Like most people, I like to have things to look forward to, for me and my family.

My eldest son has autism and sometimes it doesn’t matter what plans you make.. Autism has a way of changing things.

I try, I really do… So does the Daddy.. Not to let it take over, not to make it alter our plans.. But realistically it sometimes does.

A trip to a shopping centre with the promise of lunch is a no-no.. To be fair that’s probably the same for a lot of children.. With son No.1¬†no matter the preparation.. The promises.. Let’s face it.. The bribes.. It just doesn’t work.

So I had made some plans for the beach Рbut there were a few things I needed to do in town first.  If the Daddy had been there, we would have most definitely of tag-teamed and either split the boys up or he would of taken them to the beach.

It’s a 20 minute journey from home- no biggie – but far enough that you don’t want to make more trips than necessary (having said that I’m down there when ever I have an excuse)… Walking by the sea, sucking up the atmosphere.. anyway I digress.

So the trip around the shops was a little fractious – but I really (really, really) try not to let myself get too stressed in these situations… But sometimes it doesn’t matter how broad the smile is on my face or how positive I’m being sometimes the cracks show.

Returning an item to a small boutique, I gave the usual parent chatter “Don’t touch anything”… Only to spot No.2 Son’s little paws on an exquisite sparkling vase “This is pretty Mummy”.. “Yes it is… now don’t touch”. ¬†A little wander around the shop with them, hopefully to curb¬†their curiosity and to avoid the run-around that would have occurred without the pre-emptive walk, and I was satisfied that they had looked and touched everything they wanted to.

At the counter I exchanged my trinket and did the necessary signing, etc. ¬†Son No.2 was hovering nearby. But there was no sign of Son No.1. ¬†Now this shop is small, only the size of the average living room, there is one way in and out, and there is one of those old fashioned tinkly bells – so I would have heard him leave.. Excusing myself to the lady behind the till, I went to see what Son No.1 was up to… In a crate of cushions, – no larger than a baby crib.. I could see a pair of eyes amongst the luxury fabrics of the cushion and a pair of feet hanging over the edge. ¬†This isn’t T K Max… this is a flipping boutique, but it did look cosy and I could understand why he’d done it. ¬†Trying not to draw too much attention to the issue, (Difficult when Son No.2 is belly laughing next to me) ¬†I very quickly extracted him – sometimes I really don’t know my own strength.

You’d think that I would have done the sensible thing then and left.. But sometimes Mummy’s just want to shop.. In the end I extracted him twice more, and left without buying the gorgeous scented candles that I obviously wanted but did not need… ¬†(To the Daddy… there is obviously some advantages to me taking the boys shopping with me)..

Only a couple more errands to run, and I would be home and dry… Well on the glorious beach..

So with the promise of ice-cream.. I ambled on. ¬†We stopped by the waffle shop – so that No.1 Son could chat with the lady behind the counter – I do love the lady here.. she always takes a genuine interest in the children. ¬†She always takes the time to chat and calls them by their names. ¬†Still I detected a shift in No.1 Son’s mood… this can happen.. and it happens fast.. I don’t even know if mood is the right word…

No. 1 Son goes charging off, with the gritted teeth of determination..hands flapping around, he’s running like Phoebe from Friends. ¬†He’s also omitting this sound like a strained car engine.. He’s obviously a train driver or a formula one driver today..

When I catch up with him, he is literally bouncing up and down.. hitting the large beachballs hanging from a shop’s display. ¬†I’m stroking his arm, and he starts kicking out.. I really hate this. ¬†(This is my lovely sweet boy, that I have brought up to be gentle and kind… That I have raised with good manners..). ¬†His brother takes the full force of one kick.. Trying to prevent WW3, and keeping them both at arms length on opposite sides of me really takes some doing.

I console No. 2 Son, all too briefly Рas often the case, but he settles before going in for the punch and the whole situation erupts again.  Again taking the time to console him and tell him off for reacting РI calm him down and tell him to wait a couple of metres away from me, so I can get No.1 son away from the busyness of the beach shop and the massive hanging beachball display.

By now people are staring I ignore it – I often do, but I am human and I have a heart. ¬†I do unfortunately get embarrassed.. There’s not many things and all though I am a lioness when it comes to protecting my cubs, I sometimes forget as many parents do, to protect myself.

So by this point I am hot, rosy cheeked and holding tightly on to No.1 Son’s arm while trying to gently stroke his other arm and sooth him.. He needs to calm down.. ¬†Meanwhile No.2 Son is looking on, he does try to help .. saying to his brother “Calm down, calm down”.

The sweetness of this gesture from No.2 Son is too much, but I suck it up and continue to try and calm No. 1 Son down. ¬†Then out of no where an older lady with a severe grey bob and sturdy walking boots, struts up to us.. My defences are instantly up.. But it’s not what I think..

“Have you had a diagnosis? – You know your overstimulating him by stroking him.. He needs pressure and lots of it” – I look blank and taken aback, before she explains that she’s an occupational therapist and that this is her passion.

Now I’ve been told several times, in fact I’ve lost count of the people who’ve said you wouldn’t know… He doesn’t look Autistic.. (Goodness only knows what that meant to mean). ¬†But part of me in the early days was glad.. I know that sounds wrong.. but I’m being honest.. I didn’t want him to be wearing a label.. I didn’t want people to know.. I didn’t want anyone to judge him.. because people are cruel, and they do.

So back to the lady.. I began nodding and my voice breaking from the kindness shown by a stranger, I whispered a yes.. we’ve had a diagnosis. ¬†In the middle of this seaside town, a lady was giving me advice – welcome advice. ¬†“He need’s pressure, either a tight hug, or pushing down on him, a weighted backpack could help, get him up on monkey bars and get his body weight to do the work” ¬†She then proceeded to scribble her name and a colleagues name down along with phone numbers…

… I was in shock.. because I had learnt something.. something nobody else had told me.. Autism is a constant journey.. By this point he’d started to calm.. it was only me now that wasn’t so calm.. emotion brimming under the surface, we set off for our last shop.. The giant ice-cream shop.

It’s always busy at the giant ice-cream shop – often there are queues out the door. ¬†Both boys went charging in there, the counter was crowded, but there wasn’t the usual queue. ¬†Still their eyes were on stalks and they stood on tiptoe trying to get a glimpse of the flavours.. I was barged out the way then, by a baseball capped pensioner, with Simon Cowell Trousers “Can you please get out the way.. to my boys”.. The chinks in my armour were definitely getting bigger.. But I managed a “I think the words you’re looking for are Excuse me please!”. ¬†He left, but I was upset that he felt the need to speak to us like that..

Eventually we got to the front, but No.1 Son was starting to ‘go’ again.. the shop was crowded and noisy, ¬†the queue had formed out onto the street, as it so often does..

No.2 Son is easy.. Vanilla – he always has vanilla.. He wanted a flake.. stupidly I refused.. why did I refuse?? – so he starts crying – I can handle this – we just need to get the ice creams, pay and get out.. SIMPLE..

No. 2 Son says he wants two flavours and a sugar cone.. Uh No… you can have a child’s cone – the sugar cones are too big.. (And too much money..). ¬†So I ask the lady behind the counter can he have two flavours – to which she tells me no, sorry just one..

..Queue meltdown.. When they come, they are hideous, but I am trapped in a small shop with a crowd of captive onlookers all waiting for their ice creams and my son is being ‘naughty’.. ¬†He’s jumping up and down and shouting “I hate you – she’s a stupid lady”.. She looks agog, and before anything further is said I look at her with glistening eyes and meaningfully say “I’m really sorry, but he’s not being naughty”.. she says Ok, and that he can have two flavours, only she gets them wrong.. twice.. (The Meltdown continues) I guess she was starting to feel the stress of the whole situation too.. ¬†In the end she says “I tell you what you can have a sugar cone and a flake on me.. and a flake for your brother”.

Normally I would have refused – this behaviour shouldn’t be rewarded, but at the same time, I hadn’t prepared him for the situation.. normally we would have had a chat before going in there about boundaries and what he could or couldn’t have. ¬†But that didn’t happen, and I’m not sure that that would have prevented the situation with the mood that No.1 Son was in.

And so the situation calmed down; the lady now told me – don’t worry they’re the normal price.. the rest is on me. ¬†That was it.. I was gone. ¬†Bending down to the floor, with the guise of hunting out my purse from my back pack, I tried to disguise the tears that were brimming, but that’s a challenge when you have no tissues and you’re in a crowded and now hot room. ¬†A hand on my shoulder and another mum bent down “You’re doing a good job..”. ¬†And so I paid with an all too brief thank you and I was out..

Across the road the children sheltered under a canopy, I did not want a seagull to pinch their gargantuan ice creams.. Can you imagine.. I certainly could and I couldn’t deal with anymore today..

We made it to the beach.. No.1 Son has always had an affinity with the water.. It’s where he is at his best.

Sometimes we have days like this – they’re hard..

Sometimes the kindness of strangers exceeds anything and everything I expect.. Who would of thought that during a short shopping trip, that three people would have reached out to our family and made such a difference to our day.

 

28 Months to walk

The fall out from my baby being sick for the first 20 months of his life was that everything physical was delayed.

The sickness was hideous, projectile and there didn’t ever seen to be any break from it.

As first time parents, it was difficult to know what was normal and what was not. My gut said we will be fine. We’re living in a first world country, with a first class National Health Service, our son will be fine.

Our little boy was sleeping lots – through the night and long naps through the day. ¬†Everybody said ‘Aren’t you lucky! Isn’t he good’…We thought so too. ¬†Reflecting now, I know this was because he had so little energy.

We started to worry when we were asked to bring him every week to be weighed. ¬†I remember the concern and the suggestions from the health visitors.. But mostly I remember the comment written in his little red book (child health record) “Failure to thrive”.

I referred myself to the doctor and we were very soon sent on to a dietitian to look at whether we could do anything to keep the milk down and get our son to put on weight.

There was some trial and error, but eventually we found a milk that No.1 son could tolerate.  It was thickened and seemed to sit in his tummy rather than being projectiled everywhere.

In addition No.1 son was prescribed ranitidine to settle his tummy and Duocal to increase his calorie intake.

It worked!! And so we persevered and No. 1 son started to put on weight.. But Everything else was still delayed..

There was no crawling milestone, and barely a standing milestone.. Eventually as I was nearing the time to give birth to No. 2 son, our darling No. 1 son went from bottom shuffling to walking at the age of 2 years and 4 months.

He was on the move and the reflux had eased.

We were of course delighted; the months of worry, the support from family, friends, medical staff and nursery had finally paid off.

There was one small thing niggling away though.. Son No.1 had always ‘hand twirled’ ¬†his arms out stretched and his wrists and fingers dancing in the air. ¬†I briefly mentioned it to the nursery…

…I even asked if it could be Autism – “No look how well he talks”.. He ¬†was exceptional with his speech.. Which we’d put down to me… I do like to talk.. And children with Autism don’t communicate well – do they?

The Daddy and I were not and are not experts.. So how were we to know?

  • Did reflux cause his autism?
  • Did it play a part?
  • Should we have shouted louder and got some help earlier?
  • Could we have known ? – NO

I’ve wondered – I often have… but it won’t change anything for No.1 son will it?

 

 

 

Pregnancy – The Un-Glow

I was lucky – very lucky I fell almost immediately and only managed to spend about ¬£100 on pregnancy tests… Due to extreme excitement tinged with paranoia.

Pregnancy was horrendous and I did not sail through it like some luxury yacht, with a shiny exterior and gorgeous smooth lines..

…No I was more like an overladen passenger ferry full of sea-sick¬†passengers struggling through a choppy sea.

I threw up from the day I found out the joyful news, until delivery day waiting to go back in the delivery suite after a waddle around the hospital ‘to get things going’.

As well as the attractiveness of being sick, (and doing it very publicly), I also had swollen feet, that looked the size of a baby elephant’s. ¬†I developed carpal tunnel syndrome in both wrists, so the wearing of attractive beige coloured wrist splints was obligatory for the last three months or so.

I carried on working throughout the pregnancy and that brought some cringe worthy moments in itself. ¬†Like the day fairly early on, when I found myself dry heaving in the work car-park.. Unfortunately I didn’t look like a pregnant lady radiantly glowing with a tiny little bump. ¬†No the bump merged with the cake – and I just looked slightly fatter than usual.

So dry retching – looking slightly fatter than usual and very green – I got some very odd stares – many – to me seemed that they were in disgust .. Then somebody kind said “Are you quite alright?”. ¬†Yes I’m fine I’m just pregnant. – and no it doesn’t suit me.

Along with the various pregnancy related illnesses the biggest trauma for the Daddy and I was when we were informed that I had received a high risk triple test result back for Downs Syndrome. ¬†I was in total shock – as at the age of¬†29 I hadn’t even thought that I would be at risk. ¬†We barely had enough time to let the gravity of the situation settle in (although it doesn’t settle, does it?) – We then had to face the next¬†decision –¬†amniocentesis or not.

Just the description of the procedure was enough to make me run for the hills, then there were the risks, a 1:100 chance of a miscarriage… this particular hospital had a better success rate and the odds were 1:200.. ¬†It’s then that you really can’t help but compare the whole thing to a lottery. ¬†And I really didn’t want to gamble with my unborn baby’s life.

Still advice was sought from those closest to us and unsolicited advice was received (some welcome Рsome not).  The decision and the gamble was finally down to the Daddy and I.

On the day we decided to go ahead and have the test – I was still not 100% that I would go through with it. ¬†With two medical staff in the ultrasound room, the procedure was explained. ¬†I knew afterwards that I was a bit sore and uncomfortable. ¬†The size of the needle would have been scary to anyone – but at that moment I didn’t care about anybody else except for the little human growing inside me.

I focused on the flickering black and white image on the portable screen, and before I knew it – it was over (I didn’t feel anything). ¬†Accept it wasn’t – at the time the NHS in my area could only get the results back within 6 weeks, we paid and got them back within the week.

The results came back negative and we decided to find out at that point what we were having Рour first born; a little boy! РWe were over the moon!

It later became clear that the triple test result was skewed, due to undiagnosed gestational diabetes… I was a trainee midwife’s dream – I literally had everything going!

And so began the regime of blood tests and four injections a day – as well as watching what I ate – really difficult when I was feeling constantly sick (it was like a permanent hangover, without the fun from the night before).

I also developed the mask of pregnancy Рa beautiful condition that along with the stretch marks has never completely gone away.  Basically I have patches on my face that are light and dark Рnot obvious unless I have a tan.

Arriving at my mother’s one day my sister-in-law asked “Have you been Gardening?”- Thinking “Yes, finally I am starting to look healthy – maybe even developing a slight glow!!” I answered “Yes – Can you tell”… before she answered “You’ve got mud on your face…”… “No…. That’s my skin… I am a pregnancy babe!”.

I think the final thing was a positive Strep B result – which basically means that ¬†I carry a natural bacteria in my body’s ‘flora’ – on one hand sounds beautiful, almost like a bouquet of flowers – but yes it is a ‘germ’ – gross.

This positive result meant that I would need antibiotics immediately and during labour – as there was a risk to the baby developing respiratory distress as a result of the bacteria.

I think that’s it:

  • Gestational Diabetes
  • Carpal Tunnel Syndrome
  • Streptococcus B Positive
  • Swelling
  • Stretch Marks
  • Melasma (Mask of Pregnancy)
  • Hyperemesis Gravidarum (Severe Morning Sickness)

Happy Days! – So yes I was a non-glowing pregnant lady – and of course the end result was totally worth it. – But I still have the question in the back of my mind, did any of this contribute? – I guess I’ll never know and I don’t need to know…

 

 

The Dentist

So, as you may have read a new dentist, in a new town… ¬†Both with a potential to cause issue with No. 1 son. ¬†We rocked up a good ten minutes early, which for anybody that knows me is a cause for celebration,¬†popping of champagne corks and gasps of amazement!

Then proceeded ten minutes of form filling and questions on how happy I was with my smile… Well when I’m smiling I’m happy… does that count?

Children relatively well behaved Рonly a glance at the box of toothpaste samples, in the child attracting mini-tubes.  Even I would have been tempted to fill my pockets Рbut no we all resisted.

Once again this was a “Going it alone” trip as the Daddy was working and he’s actually a child when it comes to the dentist – so it’s always best that he goes by himself or with his own Mother.

We entered the dentist’s room, full of the stuff of nightmares – I always think it’s a bit like the scene from an alien movie when you wake up and realise you’ve been abducted… Don’t worry I don’t share this nightmarish vision with my own children!

Still No. 1 son amazed me – (he does this often, and I have to remind myself during the dark moments of these amazing moments) – No.1 son had declared that he was going first! Up he hopped onto the Dentist’s chair – there was a moment where I thought he was going to do a runner, when he leapt out and declared “I’ve changed my mind”. ¬†But with some gentle persuasion from the dentist, he sat back down.

I have to say the Dentist was amazing – patient and kind, I had explained – as I do. ¬†But nothing seemed to phase her – even when No.1 son asked what country was she from (she had a beautiful Spanish accent). ¬†My worries about his teeth were soothed and his big teeth are coming , they’re just a bit delayed (one less thing I have to worry about).

No. 2 son also sat down like a little dream and then it was me… ¬†First there were the x-rays and the boys stood outside and watched in awe – lots of questions – all good ¬†– we had this nailed…

Then there was my descale and polish that awful winey, screeching sound. Nope No.1 son was having none of it. Hands over ears a childish “la,la,la,la I’m not listening” and he was out the door. ¬†No. 2 son (he’s only five) is soon on his tail with a “Don’t worry Mum I’ll get him”. ¬†My mouth still full of equipment and my face covered in those attractive dark safety glasses reserved for American octogenarians, welders and apparently dentist patients; the dentist asked me “Is he OK?”, I managed a thumbs up.. thinking just get this over with, so I don’t have to come back and so I can stop holding my breath and praying that No. 1 son hasn’t actually done a full runner.. down to the sea..

She opened the door and No. 2 son appeared “It’s OK Mummy he’s on the stairs”. Another thumbs up from me and soon the job was done. ¬†No.1 son appeared “Mum did it hurt”.. I’m always honest with him but sometimes you have to filter. ¬†So I simply answered “A little, but I’m OK”.

Downstairs the bill paid and a relieved Mummy is out the door, the three of us with healthy teeth. ¬†Off to the giant ice-cream shop for our reward… and that’s a tale for another time!