Monday, 21 April 2014

My son the musician

Seth likes his music. He loves listening to it and making musical sounds. Seth sits in a supportive chair with an attachable tray, or at a table, so we can put his toys within easy reach. Whilst he enjoys free sitting on the floor he doesn't have the control over his hands to play when he does this. Plus he's always rocking or moving so most things we put on his lap fall off pretty quickly.

I used to get frustrated that I couldn't get a toy to stay on his lap, however, I do use it as an opportunity for him to use his feet and legs. In fact more recently, we've come to realise that a lot of his movement is quite deliberate. So we bought him a roll out keyboard which he plays with his feet. And he drums with his feet, too. Especially in the car. The other day we were driving and we had The Who playing. Seth went crazy. All I could hear was a very excited boy and feet drumming against the passenger seat in front of him. Next time I'll pull over and video him!

If Seth is sitting on the floor and we put a toy on his lap he will wriggle and bounce until the toy is under his legs. Some lovely friends of ours bought Seth a toy guitar for Christmas. Whilst we've had fun playing with it, we hadn't had much luck getting Seth to play it. However, I was giving it to him with the expectation that he would use his hands. Last week I adjusted my thinking. Seth was sitting on the floor and after watching him wriggle a keyboard-type toy off his lap and under his thighs to play it, I put the guitar under his legs:

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

Sunday, 2 February 2014

We lose one lot of medicine, and gain another

It's been a good weekend. I've given up using Seth's constipation medicine because I couldn't get a happy balance; he spent most of his time with painful wind and when it came to 'number 2s' we either had a 'drought' or a 'flood'. So, the past few weeks I've been concentrating on his diet. We keep a diary of everything he eats, any time he has a lot of pain and every time he poos. Plus how he sleeps. That way we can see what might be triggering the problems. I found out that bananas are not good for someone who is constipated, which was a shock because Seth ate a lot of those. And this weekend he seemed more relaxed and happy than for a while, so maybe it's working.

I also started an epilepsy diary before Christmas. For the last few months of last year we had seen a few seizures and a couple even at night. They were also lasting up to 2 minutes. I've posted before about Seth's epilepsy; over the last few years it has been sporadical and it's un-medicated. I wasn't overly concerned about these new incidents, but they were not connected to him being particularly ill and I wanted to keep a track of them. I mentioned it Seth's consultant and he set us up with an another ambulatory EEG. I was happy about this but as I had not had anything to put in the diary since I started using it I was worried about crying wolf. However, the report from the 24-hour monitoring came back last week and apparently Seth is having 'many unwitnessed seizures, in wake and sleep'. It informed us that during the night Seth woke up about midnight, a minute later had a seizure lasting over a minute and then remained awake until 5. So not only did he have a seizure we had no idea about but he was awake for over 4 hours! Having finally fallen asleep he woke up again at 5.20. However, I think this was only briefly because the report then says he woke again at 7. But then comes the real kicker. Seth then had 3 further seizures each lasting between 1 and 2 minutes between 7 and 7.30.

And there was further brain activity later during that day that could have been seizure related. And we had no idea. No wonder he is so tired and grumpy if this is happening regularly! So, the upshot it he is going on medication. It's a worry, but he's still being very clever..

Saturday, 25 January 2014

The talking point this week is working mums, but what about the dads?

I posted earlier this week about a mum of a child with additional needs being interviewed on Radio 4's 'Woman's Hour'. Well, being a working mum, I missed it but looked on the BBC iPlayer and discovered that the programme actually featured a working mum on the Tuesday and Wednesday shows as well. So I listened to all three:

On Monday Hannah talked about her daughter Rosie who has autism and how she had to start her own business Rosie and Bo because she could not find an employer to accommodate the flexible working she needed. On Tuesday Gill explained how she set up the Pulp Friction Smoothie Bar with her daughter Jess, who has Downs Syndrome, to give her work experience. Finally, on Wednesday, Linda talked about her experiences, having a celebrated paralympic athlete for a son and her work at the Papworth Trust. In addition Chris who has cerebral palsy talked about being given the opportunity to go to college and become independent. I heartily recommend you listen for yourselves; it's not often we get to hear our experiences in the mainstream media. Two quotes stand out for me: that employment and disabled children are like oil and water. The other was a comment about how charities tend to promote images that engender sympathy in order to fundraise but that we don't want sympathy for our child or for ourselves.

If you go to the Woman's Hour website you can select the episodes in turn. I got confused by the description of the show because it doesn't mention anything about special needs but you just have to select 20th, 21st and 22nd then trust me the interviews are part of the show.

For myself, I work 26 hours a week. 3 days I'm in the office which is an hours drive from home. Then I work 2 mornings from home. I can do this because I have a job that I can do from home but more importantly because I have an employer that has tried to accommodate my needs every since I came back from maternity leave. They have been incredible and I know just how lucky I am. I can also do this because I have very supportive parents who look after Seth 3 days a week after school. The level of support I get is not the typical situation for any parent, let alone a parent of a child with additional needs.

The main difficulty is the distance from home. When Seth threw himself backwards at school, slamming his head and ending up in hospital I was over an hour away from him. Craig works just 15 minutes from home and school but finds it difficult getting the time off. Being closer it would make more sense for him to take more appointments, and be able to be more involved. However, his employer seems to have no understanding of the impact of having a child with additional needs has on him and whilst my job actually gives me some respite from being a carer Craig is now off with depression due to the stress of trying to juggle both roles. Is the only solution for one parent to give up work entirely and take the 'carer' role and the other to just bring in the money? A 'standard' modern family can expect to make a choice about this. But in our cases, unless you are very lucky, its pretty much enforced. Even with Seth being as healthy as he is the number of appointments we still attend is very awkward to juggle even with the understanding employer, and manager, that I've got.

Going back to Hannah from the interview on Monday, she also has a guest post on Special Needs Jungle in which she continues on the subject of working and how the tendency is for the mum to become the stay at home parent/carer and the dad has to work, often long hours. Whilst I applaud the subject of working mums, whose going to interview the dads?

Thursday, 23 January 2014

You mean shopping with a disabled child doesn't have to be a nightmare?!

I've just read a post from one of my favourite blogs 'Love That Max' written by Max's mum, Ellen.

The post shares the story of a mum in Winsconsin who wrote to her local stores telling them how difficult it was to shop with her one and a half year old son who has cerebal palsy and asked if they could purchase a Carolines Cart which is an adapted shopping trolley developed by another ingenious mum of a child with additional needs. The cart costs just $850 (about £515) . Within a week one store had simply bought one. Talk about ensuring customer loyalty! You can read the whole post here.

Well I think we should take a lesson from Sandy and so here's my open letter to Tesco, Sainsburys, Morrisons and ASDA (feel free to copy):

"Dear Sir/Madam

My son (Seth) is 6 years old and is physically disabled. He has needed to use supportive seating from birth and so was never able to use the child seats you fit onto your shopping trollies. Shopping became extremely difficult as I have to push him in his wheelchair with one hand and pull the trolley with the other. I tried using the wheelchair adapted trolleys but they are designed for adults in wheelchairs and don't fit.

Yes, I could get my shopping delivered but my son actually loves shopping; the bright lights, the food smells and especially the checkout beeps. Plus, as a parent of a child with additional needs I can sometimes feel isolated enough without another reason to keep me indoors. I have also tried asking for assistance with my shopping but I'm uncomfortable having a stranger trailing around after me.

The reason for this letter is to ask if you could provide adaptive seating in your shopping trolleys. One has been developed called the GoTo Seat. It fits into your existing shopping trolley child seat offering that vital extra support for disabled children. This only goes up to 2yrs old, however, so maybe you could provide some R&D support to produce your own adapted trolleys like Carolines Cart?

Yours faithfully

Jo Cousins (Ms)"