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.

Im Soooooo Tired!

Actually, I’M EXHAUSTED!

After a bad nights sleep, I always jokingly update Facebook or Twitter with ‘sleep is for losers’, ‘sleep is over rated’. But you know what, I have to laugh about it because if I didn’t, i’d cry, lots!!

The truth is though, I want some sleep. I. REALLY. NEED. SOME. SLEEP!

I wish I could compare my lack of sleep and exhaustion to that of looking after a new-born or teething baby. The reality is, that was the easy bit! My body and hormones made it easier. It felt normal and it was acceptable. But for a 3yr old?? Its most definitely is not.

Bruiser had always been such a good sleeper too. From six months old, the 4am feed aside, he slept through.  He would settle himself to sleep at bedtime and nap time. He would only sleep in his cot though, but that worked for us. He would always get his 12 hours and would regularly put in 13 hour stints at the weekend when there was no alarms going off and still grab a couple of hours in the day.

Six months ago though, just before Christmas he started waking in the night. Screaming out for us, for absolutely no reason that we could make out. We just thought he was going through a stage of separation anxiety and that it would go away. It didn’t!

To start with he was easily settled back to sleep with a little reassurance and the odd cuddle but, a pattern was already forming. He was waking up at the same times every night and he was becoming increasingly difficult to settle again. It got to the point where we were having full on meltdowns in the night. It was like he suddenly didn’t know how to settle himself anymore and he was frustrated with himself because of that. He’d reject any attempt from us to settle him or cuddle him and would push us away and simply cry and scream into his hands in bed.

Apart from the odd occasion before we went to bed, it was always in the early hours that he was waking; 1am, 2am, 2.30am, 3.30am, 4am, 5.30am. Some nights he just stayed awake. Any attempts to settle him were failing. Whenever we thought he was finally asleep, we’d creep out of the room and climb back into our bed only for him to wake up again and it would start all over again!

Eventually, against all our principles we started getting him into our bed to sleep. We’d had enough. We were exhausted and needed our sleep to function in the day and it wasnt fair on his brother with whom he shared a bedroom. He had school and the lack of sleep was making Wriggler tired and emotional.

Bruiser would eventually settle and sleep in our bed although he still woke at the same times crying and screaming. But he was easier to settle back down. After a few days though we knew it couldn’t continue. We did not want sleeping in our bed to become routine, he was already saying ‘memee’s bed’ in the night, he had to sleep in his bed but, all the usual settling rituals that he had always enjoyed since being a baby weren’t working. So began the ‘sitting next to his cot till he fell asleep and stay a little longer to be sure’ routine!! It took that long sometimes, I’d wake up sat on his floor with dead legs and a dead arm from leaning over his cot side. Id creep back to my bed to realise that id been in their room for over an hour!!

In the midst of all this going off, he had also started refusing to sleep in an evening when we put him and his brother to bed. We had hours and hours of crying, screaming and meltdowns attempting to settle him to sleep. We’d eat our tea at gone 11 o’clock some nights and literally go straight to bed to be awake only an hour later with Bruiser and pretty much stay awake from thereon!

Things have gotten a little better in the last few months. Plenty of milk at bedtime and no major upset and he will now settle and go to sleep on his own. But that was after we spent a few weeks of sitting next to his bed till he did sleep every night.  We probably spend a night or two a week now sitting in their room. But it only take about 20 minutes now!

The night-time waking remains unchanged and continues to this day. It starts at 1am then usually 2.30-3ish again at 4am and lastly about 5.30, but we have managed to avert the meltdowns and we sit in his room near to his bed while he settles back to sleep. It takes about 20 minutes each time!

Unfortunately though, all this has taken its toll. I’m exhausted and spend most days downing pro plus with strong coffee. We occasionally get a night where he does sleep through all night. However these are very few and far between and im now that conditioned to waking up at certain times that I still do regardless.

I’ve read recently via the NAS website that Autism and sleep disorders pretty much come hand in hand. This was new information. We had no idea. Whilst there are some great ideas on there to try, including keeping a sleep diary which we are doing, I cant help but think that we now doomed to spend every night like this. Will it get any better? Will it get any worse more to the point??

I used to love 7.30 you know… bedtime. Once the boys were settled I knew that was it for the night and I could relax and unwind, switch off and me and the Hubby got some quality time together. Now I dread it, the not knowing if he’s actually going to settle at all when we take him to bed, what times in the night he’s going to wake up or if he’ll sleep through. There is no switching off any more. I can’t let my guard down.

Just recently one nights memories are merging with others. Even the Hubby will say I got up with him last night, or was that the night before? i cant remember! I’ve had days when ive felt like my eyes were going to shut while driving, so now I avoid having the car as much as I can at the moment. I can be sat playing with boys and my eyes start shutting. I’m struggling to stay awake most days. Tuesday this week, I was walking home from school and I felt my eyes shutting. I was walking!! Throw into the mix three school runs a day, the usual household duties of an average family of four, entertaining kids, preparing meals, a very energetic 7yr old spiderman and a more than likely autistic 3yr old with all the trials and tribulations that come with that. I’m beat!! I’m done in!!

I don’t suppose any one knows where I can get a holiday form do they??

Wrigglers First Residential

I’m writing this post with a heavy heart this morning. My little boy, my baby went on his first over night school trip only hours ago *sobs very loudly*

Apart from one sleepover with some close friends, he has never slept away from home ever and apart from when I was in hospital with Bruiser, I’ve never spent a night without him.

From the moment the trip was announced though he wanted to go and as the time drew nearer the excitement increased. Last night it was over flowing! He could barely eat his tea. Once he was bathed and ready for bed I helped him pack his case.

As expected he was up VERY early this morning. He came bouncing into our room before 6am saying ‘ITS TODAY!!, can I go down and get ready?’ After a quick cuddle, he did just that. In the time it took me to get up and come down stairs, he was dressed and sat with his case and bags waiting for breakfast! He barely ate anything though.

Before long he was good to go… excitement bursting out of him!

Off to school we went 🙂

wrigglers residential

It was an emotional farewell waving him off on the coach with his friends.

wrigglers residential

I know he’s going to have a wonderful time. He will be taking part in Archery, Zip Lining, Orienteering, Treasure Hunts and he will be having his first Campfire in the evening!! I’m actually really excited for him. But im going to miss him soooo very much!

~

Im linking this post up from last week for #magicmoments

Bruisers New Bed

Last weekend marked the end of a HUGE era in our house. The end of our baby era…. Bruiser got a big boy bed! :”(

Despite him been over 3yrs old, he has always loved the safeness and familiarity of his cot. It was a huge part of his bedtime routine. He’s always slept so well too so we were loathed to make any changes that would interrupt that. However these last few months have seen Bruiser refusing to go to sleep, waking-up up to ten times a night screaming for us and refusing to go back to sleep. If we are lucky we get 2 straight hours all night! So, now seemed like the perfect time to make that change, bedtime couldn’t get any worse could it?!

Usually when something is going to change, we have to prepare Bruiser beforehand to help him adjust. But, because Bruiser takes things very literally too, if we told him he was getting a new bed, he’d expect there and then! So, we didn’t tell him he was getting a new bed until the afternoon we collected it.

He seemed very excited about it though. He was enthusiastic and happy when his Daddy came home with it. So much so, he wanted to help!

Before that though, it was time for last lie down in his cot! *sniff sniff*

Before that though, it was time for last lie down in his cot! *sniff sniff*

~

Bedtime went wonderfully. As wonderfully as it could anyway… He still refused to go to sleep and he still woke what seemed like a hundred times that night but he loved his bed and was happy to be in it and sleep in it!

#magicmoments

#magicmoments

~

Wriggler’s First Sleepover

So Wriggler has gone on his very first sleep over!! Its not something that i envisaged happening any time soon given that he is only 6 but, hes with our oldest friends and he gets on so well with their lads, its like they’re brothers!

He was so excited and has been all week, he couldn’t even eat this morning because of his excitement. We’ve counted down sleeps, we’ve talked about what they’ll do a hundred times and he’s planned what toys he wants to take too many times to remember!

For me and his daddy however, this isnt just something new and strange, we are full of mixed emotions. This is the first time he has ever slept away from home period and, apart from when Bruiser was born, this is the first time we have spent a night without him.  Hes had no sleepovers with grandparents or the like, we don’t have that kind of support network around us.

So what does a 6yr old lad take on a sleepover??

  • Frank, Monkey and Spotty Dog
  • his blanket
  • midnight feast food… mini cereals, a large bag of haribos and a large bag of lollys
  • a rucksack full of toys

what does a mummy pack her 6yr old for a sleepover??

  • pillow and sleeping bag
  • clothes for the next day
  • spare clothes
  • inhaler
  • his antibiotics
  • suncream
  • car booster seat for his journey home

I think between me and Wriggler we just about got everything covered.

We left him with a big kiss and cuddle and said our goodbyes…. ok so he shouted bye to us from over his shoulder as he raced down the road on his bike… Gutted 😦

***My one bit of advice that i cant emphasise enough is… if your little one goes on a sleepover remember to pack them some PJ’s… cos i forgot!!***

Night Night Sweetheart