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

Mr Independent

Personal grooming has always been an issue for Bruiser. He’s never liked it. But, its fair to say that a lot of children don’t when they are very little. I can remember that Wriggler didn’t like it at all. Bruiser however, it isn’t just for instance, the hair washing. It starts before he even has to get in the bath. It’s not something we can just spring on him. Like most things, he needs to be prepared for it and it has to be when he agrees to it.

Over the last two years we have worked tirelessly trying to desensitise Bruiser to being wet, touching bubbles, cleaning himself. Whilst we have made great progress, nothing much seems to have worked in relation to the personal grooming aspect. Recently his Daddy managed to get somewhere with him and started counting him down to hair washing once he was in the bath and counting him down to the last jug of water over his head. Although it hasn’t taken away all the anguish, it’s helping.

Bruisers Occupational Therapist (OT) has advised that part of the problem is Bruiser not being in control, not knowing when something is going to happen. In essence its the unpredictability of certain situations that he doesn’t like and this in turn causes him a great deal of anxiety (ie how many times will we pour water on his head, how hard soft will the pressure from our fingers be on his head), which is why he resists.

As part of the process towards getting a diagnosis, Bruiser underwent a sensory profiling with his Occupational Therapist (OT). The sensory profile report didn’t tell us anything we didn’t already know but it did confirm things. As a result of the profiling report though, his OT was able to put in place some strategies to help Bruiser in his everyday tasks. We are now using the stickids programme which his OT has tailored just for him.

mr independent

One of the strategies she talked us through is teaching him the skills to do things for himself sooner than most children would ordinarily do them. This will give Bruiser the confidence to do things for himself and be more independent and thus reduce the anxiety that he feels during these tasks.

As a result; recently we got our first tears free, stress free bath time. Bruiser CHOSE to go in the bath one afternoon. He CHOSE to wash his hair on his own (I helped on his instruction a teeny tiny bit).

Mr Independant

He CHOSE to tip jugs of water over his head.

Mr Independant

He CHOSE to clean himself.

Mr Independant

He CHOSE to use the blow dryer after!!

Mr Independant

Whilst this isn’t always the case, his confidence to do things for himself is growing. I have to admit *sniff sniff* that im starting to feel more and more redundant in some areas. He has even started taking himself to bed. He brushes his own teeth, gets into bed, reads himself a story (now he can’t read but he knows the stories in his books to heart so uses the pictures as prompts to tell him whats happening as he turns each page). Then he goes to sleep.

Now he doesn’t seem to have a problem with any of this. Its his choice. I do find it quite upsetting that he doesn’t need/want a big cuddle at bedtime, Wriggler at 8 still wants the comfort of bedtime snuggles with a book. I’m sure in time I will get used to his increased independence but for now I just need to cheer him on from the sidelines because he’s doing an amazing job!

 

 

 

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.

It Started With A Pea!

You might remember my post a few weeks ago ‘Taking It One Nibble At A Time‘ about Bruiser trying new foods, even if it was the smallest nibble imaginable. Those tiny nibbles have progressed to bigger nibbles and in some cases spoon full. Spoon full of vegetables no less!

It’s not that Bruiser disliked vegetables, quite the opposite. He was weaned onto them all and loved eating them all. That was until his sensory difficulties took over and eating became problematic. Since then he hasn’t touched anything other than banana and occasionally a small slice of apple.

It all started a few weeks after the nibble of those cheese on toast stars. I did the unimaginable and put peas on his plate along with the cheesy mashed potato balls. I was pushing my luck here, normally he would reject the whole meal when something unfamiliar was put on his plate and more so because the colour wasnt in keeping with his beige/yellow/orange food preferences. After psyching the plate of food out for a few minutes though, he sat down to the table. He kept touching them and then quickly withdrawing his fingers and then going back to them. Before I knew it he was trying them only one a time and it appeared that he liked them! He gave up after a bit and sat back. I asked if he was going to eat the other food and he signed NO! quite assertively. Pushing my luck again, I put a few of the peas on a spoon and proceeded to put them to his mouth and he ate them. In the end, he ate every pea!! He left everything else on his plate on this occasion but he ate the peas. I wasnt about to push it any further though. He had done great and I was very proud of him.

Since then he’s tried Strawberrys! and Apples… whole (but the apples have to be red!)!

Sunday lunch the other day was quite comical. I was serving the food out on the kitchen side and he was taking food off his plate and eating it. It’s such a joy to see him tucking into food at the moment and more so enjoy it, even if his diet still remains very limited in colour and texture.

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Ethans Escapades