Farted on with glitter

Zack and his pals (Harry and Cameron) went to The Lowry on Saturday to watch Home. It promised to be a show that incorporated sensory interaction created especially for audiences with PMLD (Profound and Multiple Learning Disabilities). We were not disappointed.

We had an absolute ball. What a fully interactive, immersive, engaging performance from Frozen Light Theatre. You can read all about them on their website, it is clear to me that they have a very good understanding of how to engage with people who have PMLD.

I am still gobsmacked at how good they were, it's the first time I have been to an event that completely and utterly captured what it means to reach out to someone like my son. The performance blended all five senses, we didn't just watch we felt it, we heard it, we could smell it and we could touch it. To Zack that is conversation, that is interaction and that is bringing the world to him. 

The story follows two characters stranded within a desolate world ravaged by sand storms left behind to fend for themselves. It touches upon fear, hope, survival, friendship. I mean if I wanted to deeply explore these themes that's possibly the life span of a special needs parent.

We move through their journey and in a variety of creative mediums we become part of the performance. Within the first two minutes we looked like we had been farted on with glitter by Guy Diamond. Then we got to sniff some rather pleasant smelling clothing items. Lovely.

There were bubbles, more smells, flavoured water sprayed on tongues, some weird contraption that made massive long foam bubbles. Zack loved it all. 

The best part was when they came round and asked each child their name incorporating it into song. Repeating their name over and over again. In fact, can I point out that not only were the cast talented but they also managed to memorise each child's name throughout the time we were there. I mean I can just about remember my name at the best of times. 

And lets not forget the talented chap who played a plethora of instruments. He came round with guitars and saxophones and gongs. Again a massive tick in the box for engagement. 

You see what they set out to achieve is to reach those who don't ordinarily get to see or experience live theatre and they did it and then some. 

To me they are leaders in their field. Massive standing ovation. Loved it.

By the way, Zack's wheelchair still looks like it's gone ten rounds with a gold glitter gun but we don't mind it was totally worth it. 

Wake up theatre world, take note, we need more of this. 

*Special thank you to Yasha and Sarah for letting me steal their photographs.

Zack is definitely an under responsive child

Zack went to play group on Monday. They had a seaside/beach theme. Zack wasn't too impressed with the sand or the stones or the fact that he sat in a chair and couldn't reach the table. It was quite busy with some new children and parents. 


His physio came in for a visit which he gratefully received by leaving a bit of spit/puke on her hand. Well, she had been moving him about and he just wasn't in the mood for it. As usual Zack was more interested in scanning the room and taking in the situation rather that playing with any toys. He was particularly interested in some young dad who had brought his son along. Not sure why but he wouldn't stop looking at him. Perhaps it was the shellsuit he was wearing, the dad that is, not Zack.


Zack wasn't that responsive in the playgroup, he seemed to be having one of his switched off days. He has them from time to time. It used to bother me that not every day was one filled with him taking things in and responding but now I understand that for Zack some days are just off days or duvet days. When he's like that we just do nice things like cuddles and sleeping.


After the playgroup we had a dietician appointment. Zack, amazingly has grown 4cm in six weeks yet not really gained any weight. The dietician (a new lady the other one has disappeared) isn't concerned as he is growing so we are going to see what he is like in five weeks time. She suggested that because he was poorly a month or so ago he may have lost weight then so it is better to wait and see how he is in a few weeks and then make a decision as to calorie in-take. I personally think we should have increased it a little but I am willing to wait and see.


I went to a seminar today about sensory integration. It wasn't bad, I came away with a good understanding of what it's all about but I would have liked more information on what type of things you can do for your child. However I did clarify that Zack is definitely an under responsive child. That is, he needs a lot of forceful stimuli to get through to him. Some children are very over-responsive and the slightest thing will set them off and make them highly anxious. Zack is the opposite, which is why he likes loud noises, rubbing his arms and legs, rough and tumble, jigging up and down. I think they key is to just choose one sensory input, for example, his hearing and make a huge increase in the stimulation you give in this area. If you included all the other sensory areas at the same time, this would just over-load him and he would find it too confusing and would be unable to comprehend what was going on.


I also discovered how important vestibular activity is (movement and body awareness in space) as it is strongly linked to visual and auditory pathways. I guess this means more swinging in the garden for the Pants.


Had a chat with the epilepsy nurse today about Zack getting this new medication. He had a day or two with increased seizures, yet today he has only had a few. As it is up and down at the moment we agreed that I will keep a diary of them over the rest of this week and call her on Monday to discuss it further. I think if they remain increased then we will definitely be giving him the new drug. 


Oh and finally not sure if I have mentioned this previously but Zack has two teeth popping through. At bloody last. Two little ones on the bottom. They didn't half take their time, mind you, Zack takes his time with everything but then what's the rush? He has all the time in the world.

Zack went to Space

Zack went to Space. No, not space, space but Space a fantastic soft-play multi-sensory centre in Preston.

It was arranged via our lovely friends on the Special Kids in the UK forum so there was about four families who went along. There was a ball pool that Zack enjoyed sitting up in whilst taking in the light show on the walls, a sensory wall, water bed and bubble lamps. Best of all was a huge soft slide which I think I enjoyed more than Zack. Here take a look.


Space Videos




Dan decided to let Zack try and bounce up the big steps which he though was very amusing before flying down to the bottom, which I think he was a little unsure about.


We loved it there and I think that Warrington are converting an old Playbarn in Woolston into a sensory play centre so soon we shall have our very own little bit of Space.