Head banging

Today has been simply amazing. It's the last day of the Easter Holidays and as I was working Chloe spent the morning with Seth. Chloe is a support worker at Seth's school and she babysits for Seth. She doesn't work directly with Seth at school so he didn't really know her before she started babysitting and a lot of the time she comes in the evening and only gets to say 'goodnight'. However, Chloe told me this morning Seth now recognises her and responds to her at school. That makes me very happy.

Seth was in great spirits today and spent a lot of it laughing. He was happy in his stander, he was happy in his chair. The only time he got upset was late afternoon when he fell asleep on my lap. 20 minutes later he woke with a start and shrieked. It probably took me another 20 minutes to calm him down. This usually happens when he falls asleep on my lap and I keep him there for a cuddle. I don't know why waking up there freaks him out so much.

It all changed at bath time. Seth was still happy splashing his legs in the water when out of the blue he starts slamming his head down onto the base of the bath (he lies flat in shallow water). Then starts to properly sob which is no wonder because that would have hurt. Obviously I immediately scooped him up and dried and dressed him as quickly as I could. Then offered him a drink which he guzzled down. So presumably that's why he head banged?!! Good grief!!!

The holidays

Well Seth and I have survived the first week of Easter holidays.  Monday was good; Seth and I enjoyed our day together. Craig phoned a couple of times to make sure I was still sane and was pleasantly surprised to find that I still was. Tuesday was a different story! We had friends over in the morning which was fab; a very noisy, full living room of children and Seth seemed to enjoy the hubbub. After lunch, however, he didn't want to do anything. He moaned and cried his way through the afternoon. I tried to put him down for a nap but that did not go down well at all! So by the time Craig got home from work I was climbing the walls. As Seth is growing up, whilst he's still a child he's obviously no longer a baby and I can see glimpses of the young man he's going to become. That would normally make a parent feel proud but it just terrifies me that he still cries when he wants something and hasn't begun to communicate in other ways yet. I'm trying different techniques; signing,  reference objects, buttons that when depressed 'speak' prerecorded words, so I'm not relying on him learning to talk. & now, after advice from another 'special needs' mum I'm simply holding out my hand and asking Seth to touch it if he wants something I've offered. This last one seemed to be working but the minute he gets tired or stressed it all goes out of the window, the one time when I truly don't understand what it is he wants. I know I'm probably expecting too much and I shouldn't push too hard but then I get that glimpse again and I'm terrified again.

Wednesday was not the best of days either. Craig and I attended the funeral for Sean who had been a class mate of Seth's and, before that, Seth and Sean had worked hard together in Conductive Education classes when we attended School for Parents (School for Parents was music, swimming and Conductive Ed. classes for parents and their special needs pre-school kids). The service was packed full of people from school and nursery as well as family and friends. I would have liked to have gone onto the gathering afterwards as there was a memory book which people were invited to add to but we didn't feel emotionally resilient enough to go. It did end up being quite a nice day with Craig and I spending a rare afternoon in the pub just talking and enjoying each others company, despite the sadness that overlaid it.

Today has been awesome. Seth enjoyed having both of us around and I felt like we really connected with him and enjoyed his company as he enjoyed ours. Its days like this that make me feel so positive about Seth's development but also so frustrated when we don't connect at all, which feels like a lot. I've realised that I pretty much eat all the time when I'm home so it's a good job I'm back at work next week and Craig is covering the 2nd week of the holiday. And before that hopefully we'll continue to have a positive, long weekend together, the three of us.

Growing old disgracefully

Yesterday I turned 41. I'm not sure how I got to be so old and I certainly don't feel it (and according to everyone, luckily don't look it). I've only in the last 6 months joined a roller derby team which is a predominantly women's full contact sport; I start this now when my husband has stopped playing rugby because he felt he was getting too old (he's my age!). If you want to see what it's about watch this video (a random selection from You Tube). If you do watch it, a quick explanation: the girl with the star on her helment is a 'jammer', there are 2 teams on the track, each have one jammer who have to race each other and get past the opposing team who will try to block/hit her. The team scores points for each member of opposing team she skates past.


I celebrated my birthday by going to see Rammstein at Nottingham Arena. Rammstein are an industrial metal band from Germany and they were excellent. I've no idea what they are singing about but I was yelling along regardless! Again, I am so lucky that I have my parents to look after Seth overnight so we can still do this sort of thing (although we try to keep it to a minimum because I can't bear seeing how tired they usually look the following morning!!). Seth has just been full of giggles and bouncing today. We've also gotten through two weeks of new school term with no fits, which is a first since he started last January. He was great in trampolining on Thursday; he stayed sitting up on the trampoline for a couple of minutes whilst being bounced. Every time he started to fall, he'd correct himself and regain his balance, the whole time squealing with laughter.

It's all just pretty darn good. I wasn't too chuffed at being in my 40's but, I've never been one to do whatever is the 'social norm' so why should my age determine my behaviour any more than I've let anything else dictate my life. Craig bought me the graphic novel 'V for Vendetta' for my birthday. It's written by Alan Moore and whilst I've read, and enjoyed, some of his stuff I had only seen the film adaptation of this particular novel. It's the namesake of my roller derby team 'Vendetta Vixens' and I'm looking forward to reading it and being reminded to keep questioning, never simply accept what I'm told and keep striving for more for me and Seth.

We have a breakthrough!!

Seth has successfully drank from a cup with a hard spout. He closes his mouth round the spout (not a complete seal but I'm not asking for miracles!) and sucks. This is because I am adding thickening powder to the drink so that he can control the flow better. Using thickening powder was suggested to us a long time ago by our lovely private speech & language therapist we had for a short time which we were able to get through Cerebra vouchers. She suggested it at the time because Seth tended to cough when he drank. After using the powder for a while Seth stopped coughing so in my wisdom I thought he didn't need it anymore so I stopped using it. However, the speech & language therapists at Seth's school recommended it again and lo and behold he's finally using a more grown up cup and he's not getting stressed about drinking. Yeah! I have confidently moved his bottles to the back of the cupboard.`

Seth's school gets a new sensory room

No trampolining this week because Seth is full of cold and feeling pretty poorly. I kept him home on Friday and he actually let me make a nest on the sofa for him which he never does. He looked so cute wrapped up in his pyjamas and dressing gown covered in a blanket, full of calpol.

I saw this video on Facebook. You may have already seen it but it made me tearful, in a hopeful way. Its about a girl with autism who uses a keyboard to articulate what it is like for her and is now able to 'talk' via instant message with her dad.


At Seth's school I went to the official opening ceremony for a new sensory room. We have been fundraising for new equipment in the existing sensory room and the grandma of a child who attends the school got in touch with a friend who works for DHL. Reps came to the school and liked the project so much they decided to fund a second brand new room. A scant 2 months later and it was built. Seth's class were the first children to use it and it is very very lovely. DHL have now offered to pay for the remainder of the planned improvements to the old sensory room. With 2 fab sensory rooms the children will be able to use them loads more. Thank you DHL!!!

Trampolining

I got a flyer about trampolining for disabled kids about 6 months ago and last week we finally went. There's actually a trampolining centre in a leisure centre across town, something I didn't know until last Thursday. They have a number of trampolines and have different groups attending. They offer 2 hourly sessions for children with disabilities, the trampoline is set in the floor so they simply walk or carry the child onto it. They also have a big mat which they lay on it so if they child lies down it's more comfortable.

Seth had fallen asleep in the car so was very unhappy when he woke up being moved into his chair. He screamed his displeasure for about 15 minutes as we walked through the leisure centre, waited with other parents and kids for our time slot to go in and then as I completed the form filling, explanation of Seth's mobility and payment for our 2 taster sessions. I was beginning to think that it was going to be a complete waste of time. However, I got Seth out of his chair and let him lie down on the floor; he began to relax. It turns out that one of Seth's class mates has been going trampolining for several months and so I started to natter with her mum. There were about 4 other children there and they took turns on the trampoline. Seth went crazy with glee when it was his turn; he lay on the mat whilst the guy in charge bounced springing Seth up and down. We're definitely going next week!

We can't take photos in the centre (children's privacy issues) but Seth's face was very similar to when he is on the swing:

(thanks to Gill for the photo :) )

Seth calls me mummy

Recently I've been thinking about how ambidextrous I'm getting. I eat breakfast with one hand whilst feeding Seth his with the other. If I got up earlier I could have my breakfast in peace first but that rarely happens so I end up with this juggling act. Sometimes I prefer it because Seth will often let his head fall forward and let the cereal dribble out. He does that a lot and sometimes I think he does it just for a laugh. Like sometimes he'll giggle and then deliberately drop his head forward and other times when my voice starts getting louder and probably shriller as I'm telling him off for doing it, he'll get a glint in his eye and do it again. Because whilst his head does tend to drop forward, he struggles to chew and he hasn't learnt to keep his mouth closed there are times when he eats perfectly. Little bugger! & if I'm shovelling food into my own mouth my full concentration isn't on him and I'm not being wound up by his terrible eating habits. Nonetheless sometimes I suddenly become aware of what I'm doing and how weird it is that I'm juggling these 2 spoons of porridge.

Times when we got out for a coffee or even a meal I'll often choose something I can eat one handed and I'll be feeding Seth a sandwich whilst spearing something with a fork with the other. Once I got out of sync and tried to give Seth the wrong thing and I stopped, confused, for a moment before swapping hands. Craig and I have got it down to a fine art now, I think. One of us will start chopping Seth's meal up whilst the other begins to eat and then we'll swap back and forth so that we both get to eat before it's all completely cold. Weirdly it's still worth the treat of going out to eat. I do sometimes wonder what we look like but not for long because I don't really care.

Oh, and Seth called me mummy for the very first time today. Normally Craig picks Seth up from my parents but he had to work late so I did it tonight. I was buckling Seth into his car seat and he looked at me and said 'mum' with an elongated 'u' and then after a very brief pause 'mummy'. Naturally I was a bit shocked, questioning that I had heard correctly but there was no doubt. It just tops off a weekend of cleverness where he sat on the floor, unsupported, for at least half an hour and then started lifting his legs up together and dropping them back to the floor with a bang and a giggle. He repeated this for several minutes thoroughly enjoying this new game. Firstly he's playing!!!! And secondly the control and strength he has gained to be able to do that is so cool. As if that wasn't enough on Saturday I was sitting playing with a friend's daughter on the floor and Seth was sitting with us. Although he was simply sitting and hadn't shown any interest in the other kids, Seth started laughing. When our game moved away from him he started to get upset. Again on Sunday, when Seth was sitting on the floor and myself and Seth's cousins were sitting with him as they played with some lego. Seth was obviously gaining enjoyment from being with them as they played. I wish I could get Seth to show more outward interest in other children as after they have said 'hello' and got nothing back they tend to ignore him and yet he obviously is really enjoying their company.