Brilliance at Brainwave..

Now I know I left you all on a cliff hanger with how it all went at our Brainwave assessment, quite like the Eastender’s drums at the end of an episode. The reason for this was I had so much to say, I didn’t want people getting bored and stopping reading before they got to the meaty part of our actual assessment. I really want people to know just how impressed we were with Brainwave. I suppose I could have just concentrated on the actual assessment, but you know me I love a good waffle and I always love reliving our fun family days out again.

So here we go then. Now where were we? Yes. We all went to bed for a good night’s sleep. We were awake a little earlier than expected, as Isabella decided at 5:30 that she no needed no more sleep and was ready to start the day! Thankfully the programme didn’t start until 9:30, where we began with Music Therapy. Now, music is something that Isabella loves. She has been to lots of music groups but never had a one on one session (other than with me of course) The therapist was very sensitive to Isabella’s needs and listened to Isabella when she had enough of a particular instrument, which was quite frequent throughout the half hour session! She certainly kept the Therapist on her toes, as she moved quickly from one instrument to the next. There was one instrument she was extremely interested in though, it was a large drum (the name escapes me) It was so big in fact she was able to sit on it! She found it funny when she felt the banging vibrations. Isabella has an obsession with trying to flip things over; Books, mirrors, trays (full of rice !) you name it she wants to flip them over. She was determined to flip the drum over and with help when she did she loved looking inside it!

After the music session we had a break in the family room, so we could grab a drink and a snack.  The idea of this was great, we could have easily gone back to our bungalow, but they had a sofa, toys and a kitchen area so we were all set up. Having said that I did have to nip back for a caffeine hit. After a 5:30 am start and the soft sounds of a flute being played I was ready for a Diet Coke and it wasn’t even 11:30 yet!

20 minutes later, all feed and watered we got to meet our two therapists Dawn and Mervin. The first part of the assessment was an informal chat where they got to know more about Isabella’s birth and  history. They asked lots of questions about Isabella’s development and what she was able to do. We were sat on a sofa with Isabella and it was all very relaxed. It didn’t feel like they were just asking for the sake of it, they asked with purpose and were genuinely interested. With this information they would plot a graph on where Isabella was developmentally.

Feeling relaxed and at ease we had another quick break before we moved into the physical aspect of the assessment. They took us to a brightly coloured room, where there was an array of special needs equipment and toys. The purpose of this was so they could see what Isabella was able to do and plan and develop a tailored programme that would bring her on.

Now they always say never work with animals and children, never truer words spoken. We put Isabella on the floor and she laid still, normally she would be rolling and moving around in her own unique way, but she was on to us! Now most children have a favourite toy that they respond to. Isabella is not really interested in toys, but she loves woggles. The simple coloured foam tubes that you take swimming. She cannot get enough of them, she loves rolling and moving towards them and grappling with them once she has reached them. For this reason we have them in an assortment of colours at home! So when we saw Isabella was not playing ball we upped the ante and asked them if they had any woggles, no sooner had we said this Dawn was out the door and by the pool. On her return with a blue woggle, Isabella’s eyes lit up. As soon as it was placed next to her she rolled right over to reach it – success!

They watched her play and roll around with the woggle. We explained that she was only able to roll to the left, and that she struggles with rolling to the right. We had been previously shown to help her roll by moving her right arm up. This was always tricky due to her tense muscles and the resistance they give when you lift them. Then and there we were shown another strategy, a far simpler strategy, we were shown how to bend her leg and facilitate rolling through her hip. It was easier, much easier, and Isabella rolled with ease within seconds. We were impressed, as was Isabella. They also noticed how she really enjoyed playing with the woggle and got out a long vibrating tube. Isabella took an instant shine to it, it was like the woggle only better it vibrated and was easier to manipulate.  I was ecstatic. Now you make think this strange, why was I so excited? Finding things that interest and hold Isabella’s attention is a tough job and watching her laughing in delight at this vibrating snake was worth it’s weight in gold. The strange thing was just the previous month I had googled long tubes, to see if there was anything on the market like the woggle geared towards sensory needs, maybe with tactile items hanging off it. Let’s just say that my choice of words was not the best, as the search results horrified me!!

During their time on the floor with Isabella they saw how she sat, rolled, laid on her tummy and how she moved her arms and legs. Isabella responded well to them and it was a real pleasure to watch. They talked to Isabella and us both, telling us the types of techniques she would benefit from. They wrote this down as they went along, as this would be their guide which they would tweak the following day. It was refreshing, as we had never had anyone spend so much time getting to know Isabella. It is not the fault of any of the professionals we see, but the time they spend with Isabella is limited and in some cases rushed as more often than not they are late from their previous appointments. Here it was different, Dawn and Mervin had no-one else to see, their focus for two days was Isabella.

They showed us different methods of sitting and kneeling, Isabella adapted quickly to side sitting and did it very well, high kneeling was more difficult and will take some getting used to. They also showed us ways of using equipment to help with the strengthening of her trunk and weight bearing, using wedges and a peanut shaped physio ball. They also expanded on techniques that we already do, by introducing equipment, for example we practice four point kneeling at home, but they introduced her kneeling over a roll. All throughout Isabella was very patient with them, towards the end however when it came to standing she became distressed, as it was nearing lunch time. So rather than push on and upset her further they stopped the assessment for lunch.

We headed back to the bungalow, where Isabella was so exhausted she fell asleep during her pudding. They had explained that if she was still asleep they would come to us to discuss her graph and plan, which again was very accommodating, as they were putting Isabella first, which after she was the reason we had come.

So nice and relaxed in our bungalow, with Isabella soundly, asleep they discussed the results. They were not a surprise, as we already knew that physically Isabella was functioning around the age of a six month old, but it was nice to see that like we feel, they agreed that cognitively she is closer to her chronological age. They went through Isabella’s programme. They explained that, like we thought Isabella is not aware of her body, in particular her arms and legs. So with lots of different techniques including body brushing Isabella will hopefully become more body aware, which will in turn help her refine her movements. Now this was lovely to hear as some of her professionals had written off her hands and the fact she is unable to hold objects. These professionals had made suggestions of using her head or mouth as alternatives to her hands! I told them straight that we were not giving up on her hands!

Some of the things in the programme we do already, they just gave us different suggestions. They tailored the programme to Isabella, it was typed out with simple instructions and would be accompanied by a DVD which would be filmed the following day. When Isabella woke we went for a hydrotherapy session and they were very impressed with how calm and at ease she was in the water. Exhausted we all went to sleep early that night.

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The following day we went through the programme step by step. We were shown twice how to perform the exercises and then were given the opportunity to do them also, to make sure we were confident. This meant Isabella was working 4 x times harder, but she was amazing throughout. Each exercise was filmed so we had a point of reference should we forget. After a very mentally (for us) and physically exhausting session for Isabella, we broke for lunch. This time Isabella didn’t sleep which surprised us all.

We resumed the session and were given the opportunity throughout to ask any questions. Their way of working was different to anything we had seem on the NHS. They use a ‘holistic’ approach, they take into consideration all approaches. So where by trade they were Physios, they also knew approaches that Occupational Therapists and  Speech and Language therapists use. I remember having lots of questions when we first met the Physio, but she was unable to answer them as it wasn’t her department.

As a rewarding end to the day Isabella and I went in for another Hydrotherapy session, which she loved, this however did wipe her out and as lovely as the Sensory Room we went to after was, she sadly wasn’t bothered.

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So after a busy two days we began our journey home;  Armed with a folder containing her new programme,  a date booked in November for her reassessment, a car full of equipment and lots of hope for dramatic improvements.

Ten minutes into the journey Isabella was wiped out…

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If any of you are considering trying alternative therapies please consider Brainwave, although not cheap it is worth every penny.

http://www.brainwave.org.uk/

 

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Life’s a Beach…

It is a known fact that everyone wants to do the best for their children. Parents want to be able to provide the best that they possibly can for their child. Parents of disabled children are no different, in fact they are always looking at different ways in which they can help their children reach their potential, by looking into different equipment, alternative therapies and methods. Paul and I are no different. Several Mums on SWAN posted about their experience at Brainwave.

Brainwave is a charity that has been running for 30 years and their slogan is ‘Unlocking Children’s Potential.’ The slogan itself had engaged our interest immediately. The Brainwave Programme rests on the theory of neuroplasticity.          

Neuroplasticity : the capacity of neurons and neural networks in the brain to change their connections and behaviour in response to new information, sensory stimulation, development, damage, or dysfunction. 

Neuroplasticity, another long medical term that we could add to the ever-growing list of words that we had heard and tried to digest. Medical science aside it was the rave reviews SWAN mums were giving it that led us to filling in an application. The posts and blogs we had read were all exciting and inspiring, we felt that we didn’t have anything to lose. So without a second thought we applied online.

From research and the feedback from other Mums we soon learnt that the staff at Brainwave were qualified and experienced in physiotherapy, psychology and education. Now Isabella, as you well know has an NHS Physiotherapist that visits once every six weeks, for a short 45 minute session. From the exercises we learnt, we had a daily exercise plan in place, which included sitting and standing practice, but we were open to new ideas, and were interested in learning different ways of moving Isabella forward.

Not long after submitting the brief online application we received a telephone call from one of our therapists. The lady on the other end of the phone was very lovely, we soon learnt that any interaction with the rest of staff at Brainwave would be the same.  She asked lots of questions about Isabella and her condition and really took a genuine interest. This can may a real difference when you are telling the same story for the umpteenth time. This was back in March and we were told due to the popularity of the place, our assessment wouldn’t take place until September, we said however, that we would be available for any last-minute cancellations.

As luck would have it, someone did cancel and we were pushed up to the 21st May. We were both so very excited. To add to the excitement the week before we were due to visit one our the SWANS that had visited just a few weeks previous had learnt to sit unaided! Tuesday 21st May for us now just couldn’t come quick enough.

It just so happened that the visit to Brainwave coincided with night out for me (a real rarity) It was double drink celebrations that night out; as I had been out wedding shopping with my Best Friend and seen her in her beautiful wedding dress, as well as choosing Isabella’s Flower girl dress and was also very excited for our impending trip to Brainwave.

So en route to the Brainwave Centre in Bridgwater, Monkey and Daddy picked a slightly tired and fuzzy Mummy up. With a brief stop first at MacDonald’s first to allow Mummy to refuel, we arrived at our accommodation. For just £50 a night you can stay on site at Brainwave, in a fully equipped bungalow. It was perfect, they provided a cot, a highchair and a bath seat. It was two bedroomed, so it meant we could relax in the evening and put Isabella to bed without disturbing her when we went later that night. I say later it wasn’t much later, as I was desperate to sleep as I hadn’t gone to bed until 3:30 am that morning!

After a good night’s sleep, in fact a full night for me as Isabella slept through, we all woke feeling fresh as daisies.  We decided to take the opportunity to make the most of our family family day together, as it isn’t often that Daddy is off in the week (well except for hospital appointments) and the assessment wasn’t due to start until the following day. We headed off in the direction of the beach, stopping briefly at St Audries Park, my best friend’s stunning wedding location.

Everything thing was perfect. Our little family was together and we were all very happy. It felt like we were on holiday, it really was lovely. We also stopped at Williton, just 5 minutes away from St Audries, where we saw a real steam train. Isabella was very excited by the noise it made. We did some research and found that they do special Father Christmas train rides in the winter. So depending on the soreness of heads after the wedding Mummy and Daddy may or may not be joining Isabella and Nuna & Pops on board the train, as it is very, very loud!

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We continued our drive to the seaside resort of Minehead where we enjoyed a pub lunch, collected shells on the beach and made very bad attempts at flying a kite. Unlike the song in Mary Poppins, we most certainly didn’t send it up to the highest height nor did we send it soaring, nevertheless we had lots of fun trying.

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After a day of fun we got back to our Bungalow and gave Isabella her dinner. Afterwards we met up with another SWAN family, who I had never met but had chatted to on the group. It was a real added bonus getting to meet up with another family. Meeting other families is always nice, as we can share stories knowing that they completely understand where you are coming from. It was lovely seeing the girls together and finally meeting in person. It was refreshing to see that we also had more in common than just our children. Sadly we couldn’t stay long too long as the sea air had really wiped Isabella out. So we all got an early night in preparation for our big day tomorrow…