Brainwave

Hiya, after another relaxing break at Naomi house (much easier the second time round) I have just got back from our trip to the Brainwave Centre with Patrick. What an experience. It's been an exhausting 2 days, especially for Patrick bless him, he's worked so so hard and was so well behaved and cooperative, I'm a very proud Mummy.

This was our first visit to the centre so we didn't know what to expect, we arrived on Monday (Me, my Mum and Patrick) and were shown to our Bungalow which was really nice, comfortable and well equipped. We had the rest of the day to chill out ready for the first day of the assessment on Tuesday. The day started at 9am with Music Therapy although true to form Patrick was asleep so missed that session. We did meet the therapist and she was able to show us what she would have done had he been awake and gave us some tips. I think Patrick would have enjoyed it really as he is very audibly aware and responds positively to anything that makes a good noise. The therapist recommended a book to us so we can practise Music therapy at home with him so I'll let you know how we get on (our neighbours are gonna love us!).

After this session we had to sit down and go over Patrick's history and answer questions on where we think his development is now. This was quite emotional really, I had prepared a timeline of events (I had to refer to the early posts of the blog for all the details) and whenever I'm forced to go over what happened in the beginning it just brings back lots of emotions and feels surreal. It's easy to forget that Patrick was in 'Status' for 12 days, that always gets me. It's a miracle he's even with us and although many would think he can't do much, I look at him and am amazed at how far he's come. Brainwave had received reports from his GP, Physios and his Neurologist and although I didn't read them all we were told that Fiona, his neuro had just written that they've ruled out any degenerative condition. Every time I hear that I feel a huge sense of relief, although as I've said before, I wont fully believe until he's had a few more scans. The physiotherapists were handed all his info before they met Patrick and even they said later that having read his history and known what he's been through in the past 18 months they couldn't believe they were meeting the same little boy.

In the afternoon Patrick had his main physical assessment. He was assigned two physiotherapists, Dawn and Margosha who put him through his paces for well over an hour, thankfully by this time Patrick was wide awake and on top form.

Although Patrick has regular physio sessions and Portage, this assessment was different mainly as we were given so much information and explanations as to why Patrick struggles with various things. Everything made complete sense too, it was a real eye opener really. An example is that although Patrick moves his arms and legs around quite freely, there is very little coordination and actually when you look at the way he kicks his legs about you can see that he really doesn't know they're his and although he can put his hands in his mouth, he can't really do too much else. He just isn't aware that his arms and legs are his or that he has this thing called a body. Normally a baby that is developing normally finds it's feet and has the strength to explore their own body and will naturally experiment and learn what to do with it. While Patrick was at the age when this should have happened he was too poorly and too weak so he missed a whole chunk out of his natural development. So, we have learnt that we need to go back a few paces with Patrick and basically introduce him to himself, until he can understand that his hands are is own we can't really expect him to be able to play with toys or try and reach out for things. There are various ways we can do this with exercises, the technical term for all this is 'spatial awareness' and is only one part of his programme. The rest of his tailored programme will work on improving his trunk control (his back) as this is really quite weak at the moment and there are exercises designed to improve the flexibility of his arms and legs.


After this long assessment we had a break and then Patrick had an assessment in the hydrotherapy pool. This session was brilliant, Patrick is such a water baby and is so relaxed in the water it's lovely to watch. He was put through his paces again and worked really hard but really enjoyed it too. We were shown lots of techniques and exercises to do with him, it's just a shame that at the moment we don't have access to a pool that is warm enough for him, only when we go to Naomi House. You can see that he would really benefit from regular hydro sessions but the provision just isn't there at Poole Hospital. He was in the pool for about half an hour then finished for the day, completely physically exhausted but you could tell his adrenalin was pumping and he had really enjoyed the day. Most children I'm sure would hate to be pulled about by strangers all day but as Patrick loves to be manhandled and thrown about he thought it was great fun!


So with assessment day over we went back to our bungalow and had a relaxed evening ready for an even more gruelling day 2.

The second day had a slightly delayed start as Patrick was asleep until 10:30 but thankfully because the physios were allocated to Patrick for the whole 2 days they could be flexible. They had taken all their findings from the assessment and created a programme of exercises and sensory activities for us to do at home. They have split the programme into 3 sections, 1to1 exercises that should take about 20 Min's daily, 2 person exercises using a therapy ball and roll that can be done every other day and a 10-15 Min's sensory section that Martin can do with Patrick while he is sat in his chair.

They spent nearly 2 hours going over the programme with Patrick and they videoed it and gave us a DVD to take home and refer to. Patrick was really worked hard as he had to do everything twice, once with Dawn and Margosha and again with Mum and I so they could see that we were doing it right. He was so relaxed and easy to work with so it all went smoothly. After lunch they took Patrick to the sensory room to practise his 'tracking' skills using lights. They noticed that Patrick is always distracted by lights and will always stare at the lights on the ceiling so they decided to use this for his advantage and in the darkened sensory room using different flashing toys his tracking and concentration improved straight away. We have used sensory rooms before but never in such a constructive way. They had a flashing tambourine at one stage and Patrick really responded well to that, bashing it with both hands and then turning round to me for reassurance. It was great to see his reactions to different things and spending 2 days just focused on Patrick really helped me see his potential and see that he really understands more than we give him credit for. After another session in the hydro pool after lunch we were finished. All 3 of us were totally shattered, Patrick must have felt so physically knackered but was on such a high that he sang for 2 hours solid all the way home (as did Mum and me!).


The tiredness has caught up with Patrick now and he had the best night sleep ever last night, slept from 8pm until 7am. He has had a couple of stronger seizures over the last 2 days but I was expecting that really considering how hard he's worked.


So, now we are all really excited about the programme and optimistic that it will work for Patrick. He has shown such strength over the past few days I'm sure that as long as we put the effort in and the time then he should really start seeing the benefits. We are booked in for his re-assessment in February and have full support from a regional coordinator until then.

Although Brainwave hasn't given us any big revelations, I had already heard of a lot of the techniques they used, what it has done is shown us how these techniques relate to Patrick. I have several books and catalogues that refer to 'spatial awareness' for example but I've always bypassed these sections as no one has really explained that Patrick would benefit from it. Now it seems obvious, it's just a shame that the NHS hasn't given us all this info before.