Makaton Monday ~ Noise

NOISE!!! How is it that I have never shared this sign before?!!  Its one of the most used signs over the last few years and one of the first Bruiser ever used, self-taught from watching Mr Tumble no less! We all know the infamous ‘whats that noise?‘ line!

Noise is a big issue for Bruiser. It’s not a particular noise that bothers him per se, nor does it have to be particularly loud, it could be lots of quiet noises all happening at once. It all depends on his general mood, how the day is going, whats already happened. But ‘noise’ usually is the hair that broke the camels back when it comes to meltdowns.

I’m sure you’ve seen in previous posts pictures of the little man in his ear defenders doing the simplest of tasks. But just blocking out one sense when he’s concentrating or starting to show signs of distress helps make it all a little better for him.

The irony though that I have a child that hates noise yet, he’s the loudest child I know, is not lost on me!

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Noise

Noise

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Sign/Symbol used with the kind permission of the © The Makaton Charity 2012

For any help or advice in respect of Makaton, please contact the Makaton Charity directly.

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MAKATON MONDAY

Makaton Gave My Son A Voice

Talking, communication, gesturing, social interaction; all of them skills that come very easy to us and something that we all take for granted. But for Bruiser my youngest son, this has proved to be something of a challenge.

These difficulties didn’t take us completely by surprise however as Bruiser had a very difficult start in life. He was born very premature and suffered with various complications. We were advised he would encounter a lot of difficulties in his life most likely in the form of cerebral palsy and severe learning difficulties. Bruiser proved his Doctors and Consultants wrong though. Physically he hit all his milestones and although he seemed ‘odd / different’ to us at times he developed what we can only describe as normally.

Bruiser took a while but eventually started babbling when he was eleven months old. We along with his health professionals just put the delay down to his prematurity. Just after his 1st birthday, he said his first word. The words and sounds then came thick and fast and by the time he was fifteen months he could say ‘mam mam’ for mummy, ‘tsir’ for t-shirt, ‘bable’ for table and what was our favourite, ‘ibib ibi’ for iggle piggle to name just a few. In total he had a vocabulary of about 50+ words. He even knew the colours on the bottom of the sky menu which he obsessed over and would repeatedly say, boo (blue) bee (green) ded (red) eya (yellow) EVERYTIME the menu was on.

Then one day along with some of his physical abilities it all stopped… no words, no babbling, no sounds, nothing. Just nothing. It was like he suddenly just didn’t know how anymore. All he did was cry and scream. A LOT. He couldn’t communicate with us and he didn’t appear to understand us. Looking back now I know this was profound frustration with his sudden inability to communicate.

After numerous consultations with his paediatrician (thank fully because he was in the system due to his prematurity, we had someone to go to), he was referred to a Speech and Language Therapist (SALT) and also to the Community paediatricians as together with other behavioural problems that were starting to become very evident, it was believed he might be autistic.

Bruiser was on the waiting list almost a year before we got an appointment with a SALT. That was the longest most frustrating period of our lives and something that I wouldn’t wish on anyone. Bruiser couldn’t communicate and although we soon figured out he could understand us when we used visual clues ie pictures and physically showing him; he couldn’t tell us anything. He couldn’t even gesture. Every time he wanted something it was a process of elimination that got him what he finally wanted, if indeed we figured it out at all. It was awful. They say that parents know their children and their needs instinctively, but we didn’t, we couldn’t and I will tell you now, it’s absolutely heart wrenching.

A friend suggested one day that we try Makaton to help Bruiser interact and communicate. He already watched ‘something Special’ and tried to copy the signs so, I borrowed her books for a short time. Because we didn’t really ‘get it’ or know how to sign as such, disappointingly we never got off the ground with it. It was on one of the very initial appointments with Bruisers Speech and Language Therapist at our home (he was almost two and a half now), that she noticed how involved and interactive Bruiser was with the Something Special programme and in particular Mr Tumble. She decided there and then to try using Makaton as a form of communication.

I will admit that we were very hesitant to give it a go. We wanted our son to talk and we were of the opinion that he never would if he learnt to use sign language. The speech therapist though understood our concerns and immediately put them to rest. She made us understand that Bruiser may never talk again or at least for a long time. So we had to find a way for him to communicate, even at a very basic level to ease his frustration. She showed us how to use some basic signs over the course of several weeks and explained that we use the ones that will get him his needs and wants met first and foremost and see how we get on.

It wasnt easy by any stretch of the imagination, it was bloody hard work if im completely honest. We needed patience in bucket loads. Although he tried to copy the signs he saw on TV, we struggled to get him to give us any eye contact at all or even look at our hands to sign with him. In the end, we took the approach of sitting across from each other and we did role play while he played nearby. We kept it simple, one of us would sign and say ‘chocolate’ the other gave the chocolate. Chocolate is Bruisers vice, always has been, so we knew this would grab his attention, and that it did! He started watching us, watching our hands. It didn’t take him long to grasp that our little ‘hand movements’ got us chocolate. That was it, we had his attention and he wanted to have a go again and again and again. Because he struggled with his fine motor skills and refused to look at us, we helped Bruiser initially (when he allowed it) and we slowly guided his hands and asked for things like a drink, chocolate, car, food.

I will never forget the look on his little face when he started to realise that we understood him, instead of the frustrated ‘I’m going to scream really loud now’ look that we had come accustomed to. He smiled the biggest happiest smile that lit the whole room.

A whole new world had suddenly opened up for us all and most importantly Bruiser. On a very basic level, he could now tell us he wanted a drink or something to eat, he could ask for a toy car, chocolate, eventually something on TV. He could even tell us he wanted a bath…

Bruiser signing to bath

Bruiser signing ‘To Bath’

and a rocket on bonfire night…

bruiser signing rocket

Brusier signing Rocket (age 2yr 9mths)

He would point to the colours on the bottom of the Sky menu as before but this time instead of the silence waiting for us to tell him the colour, he would sign the colours repeatedly again and again.

The earliest signs we taught him were simple ones that’s didn’t require a great deal of skill on Bruisers part; drink, eat, car, ball, bath, chocolate, cake, then as his confidence and ability grew so did his need to learn and know more and more. His SALT loved working with him and coming to visit him, she even commented once that he was one of the most proficient signing children she had worked with. Now the foundations were in place we used SALT strategies to further his communication for example Match and Stretch, all the time using Makaton while talking.

A good six to eight months into using Makaton, his verbal communication started to re-emerge. He started to make sounds again, babbling to start with. Then the same sounds with the same signs again and again. He was associating the signs with sounds. Words albeit not very clear ones then began to come again thick and fast.

(This little video captured some of Bruiser’s early signing and words. If you can see past Wriggler flexing his pecs, Bruiser is in the background watching Something Special.)

It wasnt just Bruiser that was learning Makaton. Me, Hubby and big Brother Wriggler could all now do the basic signs to communicate meaningfully and effectively with him. Life was suddenly no longer as frustrating for any of us. It was happier. We were all happier.

Over the last two years, I have been on the Makaton beginners workshop and also the Enhancement training to further increase our ‘signabulary‘. This gave us the opportunity to take our communication with Bruiser to a whole new level. I was no longer just signing singular words, but several key words in a whole sentence but even by this point, I was still playing catch up with Bruiser. He signed instinctively for everything and it had become second nature to him. It was his first language.

Bruiser’s understanding was tested one particular day. His Daddy signed to him (without speaking) ‘Daddy going shops. Bruiser come? Buy sweets‘. Bruiser shot out of the room screaming and signing yes and came back with his shoes and coat 😀

Makaton has given Bruiser confidence. Confidence to communicate, confidence interact and confidence to be himself. When he meets someone new his initial reaction is to put his head down and turn away or just completely ignore them altogether. However, when he realises they can sign he wants to interact with them and on some level he comes across as sociable. This was particularly evident one day when he met his Communication and Interaction worker for the first time at a special stay and play session. (this was before my Makaton training). She is in fact a regional Makaton tutor. She knew so many more signs than we did at the time. Bruiser was feeding off her, taking in all the new signs and using them with her in context. On a few occasions that he met her again he would get very excited and sign to tell us it was the signing lady 🙂 When she started working with Bruiser in his nursery setting, she showed him some signs to We’re going On A Bear Hunt, one of his favourite books. He loves to share a book and now he could interact with one too.

He comes home from school now and before his coat and shoes are even off he’s telling us what he wants to do.

Makaton has brought Bruiser out of his quiet, frustrating, shell of a world to an interactive communicative environment. I know he is happy now, because he smiles a lot more and he signs to tell us that he’s happy all the time.

Seeing the difference Makaton has made to all our lives has made us realise how important communication is; something that we had never fully appreciated, something we had all previously taken for granted. It actually makes me quite emotional when I talk about the change Makaton has made to our lives. Its has changed all of our lives, for the better and forever. But first and foremost, Makaton has given my son a voice.

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For any help or advice in respect of Makaton, please contact the Makaton Charity directly. They are an amazing charity and always willing to help in any way they can. You can also tweet with them here too.

World Prematurity Day – Our Story, Part 2 ~ Almost Home

Because of the strict rules due to the seriously poorly babies back in Calderdale Halifax, children were not allowed on the NICU. So although Wriggler had visited me, he had had never seen his little brother who was by now 12 days old. He had relied on photos and videos. But I still dont think it had seemed real to him.

Back home in our local hospital Bruiser was settled in his new incubator. It was time to meet his big brother Wriggler. We went to collect Wriggler from nursery together. It was overwhelming seeing him and he wasnt expecting to see me that evening because the excitement when he came running across the room to me said it all.

These moving pictures of my boys together for the first time speak for them selves. Wriggler couldn’t get close enough to him. It was so lovely to spend that night as a family together.

My Boy’s, together at last.

Wriggler would have laid in the incubator with Bruiser if it was an option.

I cant think where Bruiser’s love of cars came from 😉

Wriggler’s first cuddle

Our first family photo.

Holding Wriggler’s finger

The 7th February was Bruiser’s last day in his incubator… when we arrived the following morning, he was in the SCBU nursery in a cot. 🙂 The hard bit was over, he’d won his fight. He just needed to get stronger now!

First day in the nursery in a cot

From this moment on, Bruiser got even stronger. He started rooting around and crying when he was hungry. At 20 days old, he successfully fed from me for the first time and within a few days was demand breastfeeding during the day while we were at the hospital. It was such an amazing thing to be able to do. Something I didn’t think would ever happen. (I had visions of being hooked up to a breast pump for the foreseeable future) But the staff were so very supportive in my wish to do this and helped every step of the way.

He then started crying for me in the night too not wanting to be cup or tube fed (I absolutely refused to let the nurses bottle-feed or give him a dummy). This was when the nurses decided it was time to let me live on the unit in a parent room so I could demand feed him day and night. This was just the best time ever. We had our own space where we could be a family away from everyone else. I even dared to believe that we would soon be home.

More cuddles and kisses from big brother

Drunk as a skunk after his first proper breast feed

In our parent room

My first night alone with Bruiser

My tiny little baby

Daddy cuddles

Size comparison with a box of tissues.

On the 21st February, the nurse and his Dr came to check on Bruiser and did his weight, the usual daily round. Although he hadn’t gained any (he had in fact lost some weight) she announced that I should call Hubby and ask him to fetch the baby carrier…. We could take him home!

WHAT??!!!!!  🙂 🙂 🙂

This was totally unexpected after everything he had been through, he was only 28 days old, he was still 5 weeks short of what should have been his due date. But, he was going in the right direction and he was demand breast feeding round the clock. There wasn’t actually anything they were doing for him anymore.  As scary as the prospect was, I didn’t argue. We had nothing prepared at home. We didn’t have any clothes to fit him. We didn’t even have a mattress for the Moses basket. But none of that mattered. We could take him home and I wanted nothing more than to be at home with my family.

All good to go

Going Home

Bruiser’s FIRST bath

HOME SWEET HOME

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Bruiser’s 1st smile @ 30 days old

Our Story – Part One

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Thank you to everyone involved in Bruiser’s care.

The Neonatal team at the Calderdale Royal Hospital in Halifax, you saved his life. We are forever in your debt.

The Neonatal team at Barnsley Hospital who provided Bruiser’s continued care after he was transferred.

Thank you also to…

Our families for all your love and support through what was the worst time of our lives.

My Mum and Dad for coming to us on the day Bruiser was born and being our pillars of support.

Hubby’s Brother and Sister-in-law, for looking after Wriggler in the very early days when we both needed to be at the hospital. It meant to world to us knowing that he was safe and happy, while we concentrated our efforts with Bruiser.

My Brother and sister-in-law for looking after Wriggler and helping him maintain his normal nursery routine before Me and Bruiser came back to Barnsley.

To all our friends for your messages of love and support.

Everyone that contacted me via social networking and texts to talk to me. This kept me sane during the those first 12 days when I was with Bruiser in Halifax and Hubby had gone back home for the night.

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Thank you also to Bliss for all that you do to support the families and the babies in the NICU and SCBU. Without everything that you do, so many babies wouldn’t survive and I certainly wouldn’t be writing this post today

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Makaton Monday ~ Yorkshire Pudding

Little did I know when I asked the Makaton Charity if they had a sign for ‘Yorkshire pudding’ how much it would come to mean to us.

Bruiser LOVES Yorkshire Puddings. He has a very limited diet and can be fussy with those few foods but Yorkshire Puddings, he could eat till the cows come home.

Back in January we had a difficult period with our communication with Bruiser. He was getting very upset at mealtimes. Initially, we couldn’t figure out why. He was upset with what he had on his plate and refused to eat it some of the time. We quickly realised that he wasn’t being his usual fussy self, he was asking for a certain food. But what? We went through all his foods and was met with frustration and anger from Bruiser that we didn’t understand. This obviously got very upsetting for us all.

One particular day I asked the boys what they’d like for their dinner and Bruiser attempted to tell me. After a huge meltdown about it, I offered my hand and asked him to show me. He led me to kitchen and looked bewildered around the room. I started his search off by opening the freezer and getting all the draws out and asked him to find it and show me.

That he did. After only a few minutes he lifted out the frozen Yorkshire Puddings (yes I’m ashamed to say I’m a Yorkshire lass that doesn’t cook her own!). This was what he wanted and proceeded to tell me ‘I wuv vem’. I told him they were Yorkshire Puddings. He tried to say it but couldn’t and got quite upset and frustrated with himself. (Bruiser is very much aware that he has a communication difficulty, but that’s a story for another day).

I assured him it was okay and that I would find a sign. I searched through all our books and believe me we have a lot now, but couldn’t find one. I tweeted the  and asked for their help.

Unfortunately they replied to say that after looking through all their word lists they didn’t have one. However, they said that they would send a request to the sign team to create one. Now I know they are making and creating new signs all the time but this was still a bit WOW, they were making a sign for us!!

As with all the signs Bruiser has learnt over the last two years, the words usually come when he has a sign to use. As we had neither, I needed to help ease his frustration while we waited. I made the decision to use existing Makaton signs for him to communicate Yorkshire Puddings that we (his family) would understand. I used the finger spelling for Y to represent Yorkshire with the sign for Cake. Obviously you really can’t just go making up your own signs, but these were well-practiced, existing signs that he knew very well that I knew wouldn’t confuse him.

Like I said when he uses a sign, the sound/word eventually comes and this instance wasnt any different. Bruiser has started to say Yorkshire Pudding in his own little way 🙂

A week or so ago though, I got a lovely email from the Makaton team with the sign. I told Bruiser there was a new sign for Yorkshire Pudding and he got very excited. (he loves learning new signs!) Initially he refused to try it as he said it was ‘too difficoo’ (too difficult). But after a few days of watching me demonstrate it to him, he was more willing to try. He now loves asking and signing for ‘orksa pudiiiiiin’. The sign is also getting more and more accurate every time he tries it.

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The first part of the sign represents creating the batter and the second part is showing the raised edge of the pudding.

 yorkshire pudding

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Symbol used with the kind permission of the © The Makaton Charity 2012

For any help or advice in respect of Makaton, please contact the Makaton Charity directly.

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MAKATON MONDAY

Autism Awareness Day

Today is Autism Awareness Day at the beginning of what is Autism Awareness Month.

Today is also the three-year anniversary of when I officially gave up work to be a full-time mummy to my boys and also full-time carer (to want for a better word) to Bruiser.

It’s not something that we planned on happening. I was all set to go back to work, just like I did after having Wriggler. I was currently on sabbatical as maternity leave had finished and I had a few issues about my days and hours to confirm with my employer while I awaited extra hours in our local nursery for Bruiser.

Obviously I was filled with dread about my impending return, I was also filled with a lot anxiety about whether or not this was the right decision to make. Bruiser had just started showing more signs that something wasnt right. He’d always been a different baby compared to Wriggler and other children that we knew but we couldn’t quite put our finger on it. Autism had been mentioned on occasion but, we were ignorant to what Autism really was and what these odd behaviours really meant. But just before I was to make a final decision about work, Bruiser stopped talking. He stopped walking. He stopped crawling. He couldn’t do anything. Our days were filled with worry, frustration, screaming and crying amongst the various calls to his consultant and trips to A&E thinking something was wrong with his arms and legs.

I didn’t go back to work. We made the decision that Bruiser needed me at home every day. The whole family needed me to be at home. Everything was stressful enough without throwing my work into the equation too. So on Friday 2nd April 2011, I made called work and told them that I wouldn’t be returning…

So began a new era, one that would change us all, as individual people and as a family unit.

It was only on this day last year when I realised the ironic significance of the anniversary.

We don’t have a definitive diagnosis yet for Bruiser. We are getting closer. When we started this journey we were told that we might not get one if at all before he was four to five years old. Things have progressed though.

Obviously TAC meetings, Speech and Language Therapy, Messy Food play therapy and more recently Occupational Therapy and Communication and Interaction Therapy to name only a few have helped Bruiser. First and foremost though, it has been our patience and dedication as parents that has made the changes to our lives for the better to help him.

I have spent countless hours on Makaton training courses and practising at home teaching Bruiser Makaton. Together with the knowledge I have gained on Speech Therapy courses, Bruiser can now communicate (to an extent)!!

It can take Bruiser over an hour to eat two chicken nuggets and five chips, or one yorkshire pudding for a meal but we sit with him and stick it out every meal time so he eats ‘something’. That’s an improvement on one chip in an hour over a year ago!

We’ve spent countless nights sitting by Bruisers bed for hours at a time getting him to sleep, only for him to wake half hour later so we have to do it all again. I can honestly say I got more sleep when Bruiser was a new-born baby, feeding every two hours day and night than I have in the last eighteen months! I have almost perfected the art of falling asleep while walking 🙂

Our lives are governed by routine, preparation and careful planning, always being five steps ahead all of the time.

We spend time making sure his drinks have no bubbles in them, his cups aren’t wet, his toys are in their places, his bed teddys are in the right order, that he doesn’t get wrinkly in the bath. We make sure its not too noisy for him, that’s it’s never too light or too dark, too hot or too cold.

Yes, today is Autism Awareness Day, and April is Autism Awareness Month. But for us EVERYDAY is Autism Awareness in our house.

 

 

The Impossible Hug

Have you seen the wonderful video Bliss have produced to mark World Prematurity Day? 

It’s such a simple video but yet it speaks a thousand words, stirs up a million emotions and pulls on every heart string. You see, for the 15 million babies born prematurely across the whole world each year, this is the heart ache experienced by those parents. They cant hug their babies for days, weeks, some even months! Can you even begin to imagine how that feels?

Hugs are something that we all take for granted, especially those first hugs with our new-born babies.

I remember when Wriggler was born, he was placed onto me straight away, I got immediate skin to skin contact, he was cleaned and swaddled and given straight back to me to hold and cuddle. I didn’t want to let him go for even a second.

When Bruiser was born however, it couldn’t have been anymore different. He was delivered very early at 31 weeks and it was an emergency c-section. I didn’t even get to see him, never mind hug him. He was so poorly that he was whisked away to the NICU where the doctors spent the next 48 hours trying to stabilise him. When I did eventually get to see him something like half a day later, I wasnt even allowed to touch him. All I could do was sit next to his incubator and talk to him and look at him… that first hug felt like it was a life time away.

During the days that followed his birth, I got some contact. I got to hold his tiny fingers and tiny toes. I got to put my hand on his head. But because he was ventilated, I wasn’t able to do much more than that. I couldn’t even do his cares because his skin was so very fragile and sensitive. The nurses were great though and they showed me how to touch him and how to comfort him without causing him any pain through two hand-sized holes of the incubator that surrounded him.

(facebook status 29.Jan.2010 3.am)

“I’ve just shared a magical moment with Bruiser. I can’t cuddle you or hold you close to me, but I can scoop you up in both hands while the nurse changes your cot sheet cos you wee’d on it while mummy changed your 2nd poopy nappy of the night!”

I‘ll never forget the day I got my hug though. Bruiser was 5 days old. The day preceding it he had been taken off the ventilator and was now breathing on cpap. He had also done his first wee (this was HUGE, it meant his internal organs which were in failure were now showing signs of functioning) and he had his first taste of my liquid gold through a tube into his tummy (which made him do his first poopy nappy that night). I went into the NICU that day to do Bruisers morning cares (clean his face, eyes and mouth, change his nappy). His nurse that day had a little more in store for me…

1st mummy cuddles

My 1st Hug

In that moment my life was perfect. The previous 5 days seemed but a blur. Bruiser still had a long way to go but, it made me realise that the impossible is possible, you just have to believe!

You can get involved in Bliss’s Impossible Hug campaign for World Prematurity Day by sharing a photo of you, your friends and family and little ones giving a hug on their Facebook, twitter and Pinterest, or email your photos to mediateam@bliss.org.uk and they’ll share them on their special World Prematurity Day Flickr page.

Do it for all the families across the whole world that can’t share a hug with their babies.

This Is My Child… This Is Bruiser

Bruiser is our beautiful 3yr old son and little brother to Wriggler (age 7). He has the most gorgeous auburn hair and hazel brown eyes. He loves playing with toy cars and rockets in fact most transport vehicles. He is one very happy cheeky little chappy but he also knows his own mind too and this comes across in stubborness. From the outside he appears perfectly normal.

In a nutshell, Bruiser was born 10 weeks early after suffering a near fatal feto-maternal haemorrhage in the womb. He was starved of oxygen during this time and also suffered bleeds on the brain. He did eventually survive the fight for life but we were left with the devastating news that because of the oxygen starvation and bleeds on his brain, he would more than likely be mentally retarded or suffer with cerebral palsy. He would never walk or talk or go to school and would require round the clock care. Bruiser stunned us and his consultants with his development though and to date we have no such diagnosis. However, he does have other difficulties. Ones we weren’t expecting or even remotely prepared for. 

We don’t have a diagnosis at this stage but he is currently been screened for Autism. He has a lot of other difficulties too… delayed development, a severe speech and language disorder, social communication and interaction difficulties, sensory processing disorder, sleep disorder and eating difficulties. Up to a year ago, he was non verbal and even now still has a very limited vocabulary but his talking is coming. He uses Makaton as his primary method of communication, this was in fact his first language! and I have to say, he is a terrific little signer and can boast over 500 signs to his ‘signabulory‘.

From the outside it looks like we just get on with it, which we do we have to. But, I don’t think outside people quite grasp the enormity of the struggle it can be sometimes. Dont get me wrong bringing up children is hard bloody work at the best of times for everyone. But for us life predominantly revolves around Bruiser and his difficulties. It shouldnt, but it does. It has to be planned around him, planned five steps ahead of him all of the time. We have to prepare him for everything even every day things like bedtime, bathtime, mealtimes. There is no spontaneity. A simple trip to the shops can result in full on meltdowns because we pick up more than the loaf of bread we told him we were going for.  

Dont even get me started on the people who stare and pass judgement at our apparent inability to control our child and total lack of parenting capability when Bruiser is having a moment. 

Id like to say we have a support network of people, family around us to help us out but, unfortunately we don’t. Me and Hubby do this all by ourselves, 24/7, 365 days a year. We’ve never had a day or night off! Life for us is very emotionally and physically draining, including big brother Wriggler who I feel like I have neglected over the last couple of years. So much attention and focus is on Bruiser that he doesn’t always get what he needs from me and his Daddy. Quality time is what he craves and it’s so difficult sometimes. He gets dragged around with us to Bruisers regular appointments, therapy sessions and meetings. Even something as simple as listening to him read his school book at night is an impossibility some days. He has recently started attending his own groups though to help him better understand Bruisers difficulties. He attends a Sibling Support Group run by Barnardos. He has loved going to this and meeting new friends who have siblings with similar difficulties. He’s learnt loads and although he has always been brilliant where his brother is concerned and never complained about anything ever, he is now even more caring and understanding with Bruiser when they play. He helps him so much. He gets him talking and copying his imaginative play. A lot of credit for Bruisers recent explosion of development can be given Wriggler. He is an amazing big brother and they have a wonderful relationship.

It is our experience as a family of a child with additional and special needs that I am supporting the Mumsnet ‘This is My Child‘ Campaign for children with all difficulties. The aim of the campaign is support the parents of children with additional needs and to inform others by busting the unhelpful myths about special needs.

This campaign needs everyone’s support so please contribute where you can and join the online forums, blog about it, tweet, goggle+ and facebook your support. It all helps to make a difference. If just one person did this after reading our story we would be forever thankful.

World Prematurity Day ~ Our Story and What It Means To Us – Part One

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Saturday 23rd January 2010. A normal day. I was 31+1 into my pregnancy with our second little boy. Everything was going brilliantly. We were about to spend the day with Wriggler our 3yr old son and his friends and their mummy’s for a play-date. Little did we know that it was going to turn out being the worst weekend of our entire lives.

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It was 6pm in the evening and I was starting to become very worried about my baby not moving. We had spent all afternoon out and I hadn’t felt him move even once. I knew his movement pattern to heart and I just knew something wasn’t right. I called the maternity unit at our hospital and they told me to come in. Hubby stayed home with Wriggler as it was getting towards his bedtime. I shakily drove to the hospital in tears hoping and praying everything would be okay but, deep down something was telling me it was really serious.

When I arrived, a midwife took all the details, checked my notes and got me hooked up to the monitors and left me for ten minutes. She came back to check on me and I immediately saw the concern etched across her face when she looked at my baby’s heart monitor trace.  She double checked the monitors were positioned correctly on my bump and pressed the buzzer for assistance. Another midwife arrived and again the concern was immediately apparent in her face when she saw the monitor trace. One of them then explained that my baby’s heart beat trace wasn’t normal and showed signs of being in great distress. She showed me what she would expect to see in a normal heart beat trace against what she was seeing from my baby’s trace.  She said that she was going to call for the consultant to come and check me and my baby out and advised that she would be admitting me from this moment on. Hubby was then called and I was given a steroid injection which the midwife explained was to mature my baby’s lungs should they need to deliver him. When the consultant arrived she immediately agreed that my baby needed delivering as soon as possible.

My world was now beginning to fall apart and there was nothing I could do.

In the next few hours, it quickly became apparent that our hospital and all the maternity units in our local area did not have a Neonatal Intensive Care bed for my baby when he was born. Eventually though an ambulance arrived and I was very, very quickly taken to the Calderdale Royal Hospital in Halifax, an hours drive away.

On arrival I was again hooked up to monitors to check my baby and admitted. Within 30 minutes the room was filled with consultants, midwives and a neonatal paediatrician who advised that the monitors were picking up a very weak distressed heart beat from our baby which suggested to them that he was very very poorly. They further explained that it was also showing (although I couldn’t feel them) contractions from me which said that my body was preparing for a miscarriage. They said a normal delivery wasn’t an option as our baby’s heat beat was dropping to below 50 beats whenever a contraction was happening and as such, he wouldn’t survive a normal delivery. They were going to deliver our baby by emergency c-section immediately.  Ten minutes later, we were both dressed in scrubs and i was being given a spinal block.

At 03.59 on Sunday 24th January, 9weeks early, Bruiser was born weighing 4lb 3oz.

He was immediately taken away to the other side of the room where the neonatal team took over. They didn’t show him to us, not a glimpse. All we could do was watch from afar as they all got to work on him. He didn’t cry, moan or whimper. There was no movement from him, he did nothing. The midwife assigned to me kept reassuring us that everything was normal and that they would try to stabilise him and get him breathing. Eventually after what seemed like forever, above all the talking and commotion I heard the smallest faintest whimper when they got him breathing but that was it, he was immediately ventilated. The midwife attempted to take Hubby over to see him but they refused to let him. Hubby saw though that he looked very poorly, ‘he looked dead’ were his words. He was the purest white transparent colour, something that Hubby wishes he hadn’t seen and an imagine that still haunts him today. Bruiser was very quickly taken away to the Neonatal Intensive Care Unit. I got a very very brief glimpse through my tear filled eyes as they rushed him past me and out of the theatre.

The next 5 hours went by in a blur. They did loads of tests on me to help them establish what had happened. We didn’t know what was happening. We couldn’t go and see him. We just waited and waited for news. I was absolutely devastated but I couldn’t even cry, I just felt numb. It was a nightmare that I just couldn’t wake up from.

Eventually we got a message that we could go to see him. I was only just regaining feeling back in my lower body, and so Hubby went alone. It was a very brief visit as he came back with the news that Bruiser’s Doctor wanted to speak with us both and was coming to see us. He told us that Bruiser was fighting for his life. They were struggling to stabilise him. He told us that Bruiser had suffered a massive feto-maternal haemorrhage. He was born with a blood count of 2.2 (the lowest on record we later found out). They had given him several blood transfusions. He was ventilated and sedated. He said that ‘IF’ he survived (which he put at less than 10%) there was every possibility that he would; worst case scenario; be mentally retarded and best case; have cerebral palsy. He had already suffered a significant brain injury due to lack of oxygen while he was still my womb and a bleed on the brain after birth. Acidity was building up in his blood stream (acidemia), as his internal organs primarily his liver and Kidneys were in failure. They had done everything that could possibly be done.  It was put to us that we should seriously consider withdrawing his life support and prepare for the worst.

In that moment my world stopped. I hadn’t even seen my baby boy and they wanted me, us, to decide if we wanted to keep him alive.

But of course we did. We couldn’t give up on him so soon. He hadn’t been in the world more than 6 hours. It was a decision that we didn’t even need to discuss. We both knew in that instant what the other wanted to do. We chose to keep Bruiser alive.

I demanded to see Bruiser at this point and my wish was immediately granted. I was still laid flat in bed, but we were taken through to the NICU.

I’ll never forget the moment I laid eyes on him. He was so very very small. But, he had 10 fingers 10 toes, 2 eyes and a nose. I didn’t see all the machines and wires and tubes keeping him alive. I didn’t hear all the different beeps they were making, I didn’t even see the incubator. I just saw Bruiser, our baby, our little boy… and he was Perfect.

We barely had a moment with him before reality hit us like a ton of bricks… loud beeping kicked in, nurses and Dr’s came running in, someone began to take me and Hubby away from his bedside and that was when I noticed that they were pressing on his little chest again and again, attempting to bring him back to life… again.

Back in our room, we prayed. Never in our lives had we prayed but we prayed, we hoped and we cried like our lives depended on it. Good news eventually came that their attempts to restart his heart had been successful. It was at this moment I said that I would like Bruiser to be Christened.

Born Fighting

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The rest of that day went by so very slowly. Bruiser was alive and taking it one minute at a time. On a visit to see Bruiser later on that day, we received the great news that he had a last stabilised for now, although he remained very very poorly. We were advised not to get our hopes up as despite his progress so far, he could so quickly deteriorate and if he did, they wouldn’t be able to bring him back again, they had done everything they could do for him now. The fight was all his.

Stable at last

For the next few days we lived on tenter-hooks waiting and hoping that his internal organs would ‘come to life’ or show us signs that they were working. Bruiser spent the best part of two days having phototherapy too and the wait was also on for his 1st wee.

On our first visit onto the NICU on the morning of the 27th, we were absolutely overjoyed to see Bruiser off the ventilator. Over night not only had Bruiser been taken off the ventilator in the early hours of that morning and was now breathing with cpap, he had also done his first wee 🙂 This was monumental. He was three and a half days old.

1st pic off the ventilator

From this moment on Bruiser continued to grow stronger and stronger.  He opened his eyes and looked at us when we talked to him for the first time. We heard him properly cry for the first time.

and the best bit…. at 5 days old, we got our first cuddle, the impossible hug.

My first cuddle

Daddy’s first cuddle

First picture with Mummy and Daddy

It was on this day that Bruiser was given his first milk from me through a tube into his tummy. It obviously agreed with him because this prompted his first poo and subsequently an opportunity to change his nappy for the first time 🙂

Mummy’s Liquid Gold

Daddy’s first dirty nappy

All these things might seem so insignificant to any parent of a normal full term baby but for any parent with a baby in the NICU or SCBU, these are pinnacle moments in their recovery and also a chance for some precious bonding time with our baby. These were the moments I would set my alarm for and get up in the middle of the night to do (the 3-hourly breast pumping aside).

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Contentment

A rare moment off the cpap while he was cleaned and cuddled.

Cuddling Daddy’s finger

A smile if ever I saw one

On the morning of the 4th February, Bruiser was 12 days old, he had gone his first 24hrs off the cpap. This meant he was now able to be transferred closer to our home town to continue the rest of his recovery.

All set for the journey home

In the Ambulance

Part 2 ~ Almost Home – Our story continues when we arrive at our local NICU.

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Thank you to everyone involved in Bruiser’s care.

The Neonatal team at the Calderdale Royal Hospital in Halifax, you saved his life. We are forever in your debt.

The Neonatal team at Barnsley Hospital who provided Bruiser’s continued care after he was transferred.

Thank you also to…

Our families for all your love and support through what was the worst time of our lives.

My Mum and Dad for coming to us on the day Bruiser was born and being our pillars of support.

Hubby’s Brother and Sister-in-law, for looking after Wriggler in the very early days when we both needed to be at the hospital. It meant to world to us knowing that he was safe and happy, while we concentrated our efforts with Bruiser.

My Brother and sister-in-law for looking after Wriggler and helping him maintain his normal nursery routine before Me and Bruiser came back to Barnsley.

To all our friends for your messages of love and support.

Everyone that contacted me via social networking and texts to talk to me. This kept me sane during the those first 12 days when I was with Bruiser in Halifax and Hubby had gone back home for the night.

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Thank you also to Bliss for all that you do to support the families and the babies in the NICU and SCBU. Without everything that you do, so many babies wouldn’t survive and I certainly wouldn’t be writing this post today

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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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