Sunday, 30 March 2014

What a mothers day!

Today I was watching my son with the awe, pride and joy of a parent with a newborn.

I don't often get the chance to really watch Seth. I'm usually to busy 'doing'. We spent the morning with my parents and then, on a whim, we decided to all go to lunch together as the local indian restaurant was doing a buffet lunch and surprisingly it wasn't packed with families celebrating mothers day. Seth had already had a carpet picnic (what I call feeding him a sandwich while he free sits on the floor) but I gave him some of the milder food from my plate and, as expected, he wolfed it down. I gave him the food because when we sat down at the table he immediately looked up at the lights in the ceiling and then around him, taking him the noise of people eating and talking. He then began sucking on his finger. I tried offering him a drink but he was in a place of eating and he wanted a part of it!

Whilst I then anticipated his expectation for a desert, I didn't order it quite soon enough because as we sat eating and talking, Seth started banging his head back against the head rest of his wheelchair. This is the behaviour that upsets me the most; it's Seth's 'no'. He does it when his meal is over, when he's in pain, when he is frustrated, you get the idea. He will continue to bang his head onto whatever is behind him, until he starts really crying because he's hurt himself. However, today whilst he was hitting his head, it wasn't very hard and there was a glimmer of a smile on his face. It reminded me of a friend's 3 year old I saw recently who misbehaved because we were talking and she wasn't the centre of attention. My mum went to Seth, crouched down next to him to talk to him softly. He kept his head down, listening, and then when she walked back to her seat he lifted his head to track her movements. It was pretty magical to watch. Then ice cream arrived and Seth was kept amused for a while.

Tonight when I undressed Seth for his bath, he started to wee. This happens every so often and I quickly scooped him into the bath. But instead of letting me sit him down he started to get upset. Not crying but his expression whilst he stood there made me transfer him to the toilet. With his slim hips he needs a lot of support or he slips straight in so I wrapped my arms around his torso and held him and he did a little wee and laughed. We stayed for a few minutes before I returned him to the bath where he lay back and enjoyed splashing in the shallow water. He's got a cold and his ears were bothering him (presumably itching) so, in turn, he lifted his hands and rubbed his ears. I realised that I don't think I'd seen him do it with both hands before and that his control of his hands and his manual dexterity was really improving. As well as his obvious awareness that he should wee in a toilet and his desire to do so.

All that in a day! Seth has gradually been increasing the epilepsy medicine he was prescribed last month. Craig has a review with the doctor about the meds tomorrow and he'll be reporting that things are definitely improving!

Wednesday, 19 March 2014

Shopping trolley wars

A couple of months ago I posted about adapted shopping trolleys and wrote an open letter to the major UK supermarkets. I got a response. Tesco replied to my tweet, asking for the details of my local Tesco so that they could pass on my plea for a shopping trolley that is adapted for disabled children. They did say they couldn't promise anything and, indeed, I have yet to hear from my local store. However, I was impressed that they replied; I heard nothing from the others (Morrisons, Sainsburys and ASDA).

I also got a response from Leckey, the manufacturer who created the amazing walker that Seth uses and the new Firefly range of supportive seating that they have produced in conjunction with Cerebra, that I just can't stop going on about. Leckey told me that they are talking with Tesco about a new trolley solution. Very exciting!

And then earlier this week it was discussed on the BBC Radio 4 programme You and Yours. The interview goes shopping with Stacey Lewis, mum of disabled child May and fellow blogger (I'm not jealous in the least ;) ). Stacey discusses the difficulties she experiences shopping with May and the responses she got when she contacted the major supermarkets. It seems, in the most part, supermarkets respond to individual requests if you make enough fuss. The response is then tailored to your individual need but that seems a pretty shortsighted response by supermarkets. I think our aim should be to make it standard across the UK. According to Scope, 1 in 400 children are affected by cerebral palsy alone. In addition, to this are children with an undiagnosed disorder (SWAN) and the children with a diagnosed genetic disorder. I'm confident that the majority of these parents, if not all, would have found an adaptive shopping trolley useful at some point.

So come on supermarkets, make it happen!

Thursday, 6 March 2014

This is my duck

Today is World Book Day and the children at Seth's school were invited to come in dressed as a character from their favourite book. I would say that Seth's favourite book is 'This is my duck'. It has featured on this blog at least once in the past. It's a touchy-feely book with a button that you press to hear the duck say 'quack quack' before turning each page. Seth has had it for years and because the button is too difficult for him to press we now use a recordable switch alongside the button. Seth gets great delight from pressing the switch to contribute the 'quack quack' as I read him the story.
Seth reads with mummy

I'm not traditionally a very 'crafty' person but I was determined to make Seth a duck costume. I hadn't realised til this morning how much it made me feel like a normal mum. To simplify things Craig cut up an old towel and dyed it yellow (oh yes, it was a team effort!). Then last night I sewed on the 2 wings, a fluffy tummy and cut out orange felt for the webbed feet and beak. We even had a couple of yellow feathers for the tail. I didn't think Seth would tolerate his new beak but he thought it was all very funny.

daddy and Seth dressed as a duck

Seth in class showing off his wings and tail

Seth 'the duck' sits down in class