nil by mouth

31st January 2011.. my facebook status read, ” today will be remembered as the day I became mam mam 😀 (Bruiser’s first word) ” 

Talking is something that comes very easy to us all and something that we all take for granted. But, for Bruiser my youngest son, this is proving to be something of a challenge.  He can’t even communicate to us his basic needs, and then there is his lack of social skills that again come very natural to most children of his age and indeed any age.

For Bruiser, these are developmental delays that haven’t taken us by surprise given his very difficult start in life.

Bruiser was born by emergency section at 31weeks having suffered a massive feto-maternal haemorrhage, the biggest on record we were later told. He suffered with varying complications (bleeds on the brain, internal organ failure, heart stopping, to name a few) as a result of this he needed several life saving blood transfusions and then he had to fight for his life. Because of what happened to him he was starved of oxygen for going on 12 hours and possibly more while still in my womb. I only knew something was wrong and went to hospital when I hadn’t felt him move for about 6 hours.

In his very early hours when the doctors were asking us to seriously consider withdrawing his life support and prepare for the worst saying that they had done all that they could do for him, we were told that ‘IF’ he survived (which they put at less than 10%) there was every possibility that he would; worst case scenario; be mentally retarded and best case; have cerebral palsy. We were told that he would never walk or talk, he wouldn’t go to school, lead a normal life or anything that you naturally assume when you bring a child into the world.

Born Fighting… taking it one minute at a time

We CHOSE to keep him alive regardless of what ever his long-term prognosis would be and in the end Bruiser chose Life!  

As he survived, got stronger, came of his ventilator and his internal organs began to slowly come to life over the course of the next 7 days, we started to prepare ourselves mentally for the unknown future that was to come.

After 14 days in the NICU, Bruiser was moved to the SCBU.  At an astonishing 28 days old our little Bruiser left the SCBU and came home.

(i wonder if I’ll ever tell this story without crying)

Fast forward 2 years!!

Bruiser is now a very energetic life loving 2yr old,  he isn’t mentally retarded and he doesn’t have cerebral palsy. As he got older and stronger, he hit all his physical milestones showing no evidence of delayed development.

However, Bruiser never babbled as a baby, it was just before his first Christmas at 11mths old that he started babbling and just after his 1st birthday, he said his first word ‘Mam mam’ to me no less!! 🙂  But then words and sounds came think and fast and by the time he was 15mths he was saying ‘t-sir’ for t-shirt, ‘air’ for hair ‘bable’ for table ‘ibib ible’ for iggle piggle. Life was great for him and it seemed that he had overcome every obstacle in his way and was going to lead a normal life after all.

Then one day it all stopped… no words, no babbling, no sounds, (it was like he suddenly didn’t know how) just crying lots of crying and extreme frustration!

After numerous consultations with his pediatrician and health visitor, he was referred to speech therapist and also to the community pediatricians as together with other behavioural problems that were starting to become evident, he was suspected of having Autism.

Any sort of diagnosis in respect of Autism is a long way down the road for us if in fact we get one at all so in the meantime we are doing whatever we can for him to help him along.

Bruiser LOVES and I mean LOVES Mr Tumble and is so interactive with the Something Special programme that his speech therapist has introduced us to Makaton as a way of communicating with him… and its working 🙂 !!

Bruiser, Mr Tumble and that Spotty Bag

A whole new world has suddenly opened up for us all. On a very basic level, Bruiser can now tell us he wants a drink or something to eat, he can ask for a toy ie car, bus, rocket, he knows what he wants on tv and can tell us. When we are out and about, he points to things and tells us what they are, what colour they are, if its big or small.

It isn’t just Bruiser that is learning Makaton. Me, his Daddy and big brother Wriggler can all now do the basic signs to communicate meaningfully and effectively with Bruiser.

Life is suddenly no longer as frustrating, his ‘meltdowns’ are still there but have gone from hourly meltdowns whenever and where ever to occasional and they usually center around him trying to tell us something or he wants something and he just doesn’t know how.

Bruiser’s verbal communication is gradually getting better because of the Makaton! I think this comes down to him now associating sounds with the signs that he knows that get him what he needs. Unfortunately though, those initial words he could say at 15mths… mam mam, tsir, babble etc have never returned 😦 he now looks at you gone out when you ask him to say them verbally, almost like you are speaking a foreign language. He can sign them though!! But I do wonder if he will ever say them again.

I myself am about to embark on a course of Makaton to take our communication with Bruiser to another level. Who knows where this will then take us.

But i still long for the day that i will hear him say ‘Mam mam’ again!

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14 thoughts on “nil by mouth

  1. mrsgusto says:

    Lovely blog … my son adored Something Special and Justin Fletcher, we used Makaton and PECS in his Autism-specific school, he was completely speechless when he started there (3) but by the time he was 5, he was saying three/four word sentences. He’s now 9 and we can’t shut him up 🙂 … Keep the faith, speech and language therapists help but it’s definitely beneficial to use programmes that he loves to get him to copy those sounds/words.

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    • mummywifewoman says:

      thank you for your lovely comment. i will have to look at PECS to see how this can help Bruiser. Its lovely to hear that with the right help your son started talking, and more so that you cant shut him up. i long for the day that Bruiser is like that. Something Special have just released a range of toys including a spotty bag and interactive Mr Tumble cuddly which has got Bruiser imaginatively playing, something we have seen nothing of so far. Where would we be without Mr Tumble 🙂 x

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  2. Heather says:

    Oh Hon, you’ve just made me cry reading this. What a beautiful, touching account and such a love filled family. Your little man was born into the right family – he’s a credit to you. You reap what you sow xxx

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    • mummywifewoman says:

      Oh H. thank you for reading this and your lovely comment. It took me a long while to write this, it pulled on every heart string putting it in to words. Even Hunny cried when he read it, everything is still so raw to us even after all this time. xx

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    • Mummy Wife Woman says:

      Thank you for taking the time to read it. Its always lovely to hear from other parents who are in a similar situation. Sometimes just talking to someone who knows, understands and appreciates what you are going through and where you have been, makes a world of difference. thank you. x

      Like

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