Having a child with special needs affects the whole family.

Having a child with additional needs changes a family.  I think you become more insular as no one can truly understand how much your life has changed.  We are not the same people, same couple, same family as we were before our special boy, Hugh, was born.  Our priorities have changed.  Our needs have changed.  Hell, even our political views have changed.  It’s not all bad though.  Yes, I am beginning to feel isolated from even my closest friends, but in turn, we have grown stronger as a couple, talk more openly and rely on each other more.



My overriding concern has always been though, the effect having a brother with special needs will have on my eldest son, Sean.  He is nearly three and I worry almost as much about his future as I do about his younger brother’s. Will he get bullied for having a brother that is so ‘different’?  Will he feel neglected because his brother demands so much care and attention?  Will he be embarrassed by a brother that can’t walk or talk?  Will he be jealous…

Bedtime


Bedtime.  All parents know the drill – a good structured bedtime routine pays dividends.  We’ve all heard about those angels that sleep right through the night from 5 weeks (lucky bastards).  Well, I read the books – The Baby Whisperer, Gina Ford and I even attempted it with Cheeky.  To be fair, he’s pretty good now – it didn’t go according to Gina Ford’s plan and it took him until he was about 6 months old to sleep through the night, but he got there.  His major issue was that the greedy little bugger was so hungry all the time.  You’ve never seen a baby eat like it, I swear.  By 6 months – the time you’re supposed to start weaning – he was polishing off a couple of weetabix for breakfast and chomping on spuds for lunch and dinner.  But nowhere, nowhere at all in the Gina Ford bible does it tell you how to establish any kind of bedtime routine or sleep pattern with a child like Little H.  I genuinely would LOVE Gina or flaming super nanny to come and have a go.  Come on – I dare you!!! 

First – how on earth are you supposed to teach a child the difference between night and day if they are so visually impaired they can not tell light from dark?  What if they have so little interest in others, including their parents, that it would be impossible to ‘overstimulate’ them by talking to them in the night?  Or how about if it is impossible to wake them?  I kid you not – Little H wouldn’t wake.  That child had no idea when he was hungry and in order to wake him long enough to get a bottle into him (pre tube-feeding days) I’d strip him naked and wash him in cold water.  Awful I know, but he’d genuinely have starved if I didn’t.  Even then he’d barely stay awake.  He slept for hours and hours and hours on end.  And then cry through the night.  And that mantra that new parents repeat to themselves and console themselves with – “they’ll grow out of it/it’s only for a short time” - well that didn’t apply in H’s case either.

Things changed eventually.  He began to distinguish light from dark at around a year old and I tried to get a bit of a routine going – bath, massage, chill out music, bed – not easy when you’re trying to put a toddler to bed also, but I swear I did try.  Yet every time I seemed to be getting somewhere and he’d have a good night’s sleep, he’d get ill and we’d be back to square one.  I soon came to realise that the only time he slept through the night was in fact when he was ill.

And then the fits started (or rather got much much worse).  And there was no sleep for anyone.  It is very hard to sleep when you are genuinely convinced that your child will stop breathing when you close your eyes; not an unsubstantiated fear either.  We fought tooth and nail to get an apnoea monitor which alleviated some of our fears but then the little bugger altered his seizures by moving during them.  So whilst not breathing, and rapidly turning a navy-er shade of blue, he could fool the apnoea monitor that he was still breathing by ever so slight contractions of his tummy muscles.  Pretty clever, huh?  So then came the battle with the powers-that-be for a SATS monitor – by now the only reliable tool that will tell us if he has stopped breathing.  But by then, peace of mind was out the window.  And with it went sleep.  And any need whatsoever to establish a healthy bed time routine. 

Little H goes to bed when we go to bed.  At over two years old he sleeps in a cot in our room.  He is too big for the cot but there is no room for anything else.  The cot is placed at the end of our bed.  And we sleep the wrong way round in the bed so that I can quite literally hold his hand while I sleep.  I don’t tend to do that mind – it would absolutely wreck my already near-knackered shoulder (two year olds with low muscle tone can be pretty damn heavy) – but it does mean that if he stirs, or his monitor goes off, he’s close enough to check on quickly.  Really quickly.

However, in the absence of the seizure monster, things are starting to change!  I recently started sleeping with my head by the headboard – a whole bed-length away from Little H.  Then, I moved his cot under the window – a whole two feet away from the edge of the bed.  This really is a major achievement for us, ridiculous as it sounds.  But these little steps mean we are slowly edging ever closer to some semblance of a “normal” life and a “normal” bed time routine.  I have, on occasion, even put him to bed and left him upstairs alone while I came down to prepare his medicines and his night feed.  He was attached to the SATS monitor and I could watch him on the baby video monitor and our house is so tiny I could practically reach him from the kitchen anyway, but all the same – it’s a big achievement.  I can only liken it, to those early days when you put your first child in their own room (I imagine most second children don’t get quite the same level of ridiculously, unnecessary, overprotective anxiety) and you walk around downstairs with the baby monitor at full volume, pressed to your ear, listening to every sound, turning down the TV just to be sure you don’t miss anything.  And then, when you hear nothing, you rush nervously upstairs to check they’re OK.  Or was that just me?  Assuming that’s not just me and it is a madness that manifests itself in many first time mothers; take that feeling of panic and anxiety and magnify it ten-fold and you’ll come somewhere close to what I’m feeling. 

And the sleeping through the night?  Well that’s a bit hit and miss.  He can sleep through on occasion (10pm until about 6am) but there is no rhyme or reason to it or any element of predictability.  Most nights he wakes between 2:30 and 4am and can stay awake for any length of time.  Sleeps during the day appear to have no bearing on how well he will/won’t sleep at night.  Last night he woke at 4:30am and stayed awake until he nodded off in the car at 11am!  I have no idea what tonight will bring.  If he is happy when he wakes, it’s easy enough though he wriggles so much that the SATS monitor doesn’t work as effectively and can alarm repeatedly.  He’ll happily lie in the cot and play with his hands and make noises to himself.  If he is upset though that can be harder to deal with and exhaustion usually leads me to the quickest way to calm him down which is to stick him in the bed with us.  Yes – I realise I am making a rod for my own back here but tiredness won’t allow me to go through rituals of ‘controlled crying’ or calmly telling him that it’s ‘sleepy time’ and walking away or  whatever it is I’m supposed to do.  And to be honest, I don’t think they’d work anyway.  Not with Little H.  Someone forgot to tell him about those rules.  He makes up his own as he goes along.

This is our version of ‘normal’ and it works OK for now.  It’ll probably be less acceptable when he’s 15 but I’ll cross that bridge when I come to it.  There’s no point worrying about it now.  H’s overall development is somewhere around the 3 month mark and I wonder if I look back at the bounty/baby centre emails that I deleted without reading (“your one year old should be doing ... blah ... blah .... blah ... sob”) if his sleep pattern roughly fits with this too.  I’d genuinely be interested to know about everyone else’s bed time routines and rituals, so please do comment and share your quirks and foibles.  If, however, your little angel goes to bed at 7 and sleeps for 12 hours (without the aid of medication) then don’t bother!  Just kidding.  Kind of.  


And I couldn't resist adding this video (don't watch if you are offended by bad language):








This post is written as part of the #definenormal blogging challenge courtesy of the lovely RenataBplus3 from Just bring the chocolate. 


Why not join in?  Define your 'normal' and get a fancy badge, like the one on the right, to add to your blog.


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Comments

  1. Everything has to be done in order... But F has to control the choices. He won't settles at all until you have done what a day, what a morrow, and religiously tells you to keep the door and gate open followed by 5 minutes if shouting love you mum.

    However... If the days adventures are new then there is no bedtime, his brain can't cope with the change and takes a long time to file stuff and n doubt we all end up bundled in our bed watching TV till he crashes.

    Bedtime is a funny time isn't it... And a wonderful blog! So excited you are able to make those steps to have H sleeping more independently. X

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  2. Your post inspired me to blog about our bedtime routine:

    http://trickycustomer.wordpress.com/2012/05/31/zzzz/

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  3. I'll pop along an read itz Zoe.

    Phew, Katie, that's some routine. From a lack of routine like ours to a full on structured routine like yours- it's both extremes! Heaven forbid if you miss anything out I bet. X

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  4. I think that every family has to do what works best for them, it was years before I was confident enough to leave my special girl to sleep without her apnoea monitor ((hugs))

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  5. Sometimes we have a routine, other times he stays up late and hangs out with us. Lots of times I get into bed with him (I even bought a double for him so I could!). It makes the difficult nights much less draining!

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  6. It's definitely not just you. I was like that too, if theres a noise, panic, if its too quiet panic.
    For many years (babyhood, toddlerdom and beyond) he would only go to sleep if I was sitting there with him. Often I'd fall asleep on his bedroom floor while he carried on babbling in his cot. Or when he was bigger (and I was single) he'd often end up sleeping in with me. I'd had it so easy with my older child, who accepted the bedtime regime almost from day one - I just didn't know what had hit me with him. Then it settled, but now, aged 10 and with his ability to articulate himself moving forward, he's regressing. He doesn't want to go to bed knowing we're awake downstairs, but he needs sleep and is awful in the days if he hasn't had enough, but there are all sorts of excuses, questions and delaying tactics now when I try to put him to bed.
    I love the video :)

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  7. Sorry for the delay in replying - not sure how I missed these.

    Blue Sky - I think you're right, we all need to do what's best for us. I'm glad you got there in the end and thanks for the hugs.

    Renata - yes sometimes it is just easier to have them in bed rather than keep getting up and down. Good thinking about the double bed!!

    Oh Sally - that sounds difficult. If it's not one thing its another eh?

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