Well, this month as John Motson would say has felt like a month of two halves for us , largely dominated by the weather. We started the new term resorting to the Wii for entertainment which only comes out in the Winter months in our house for several reasons , number one is that I would rather the kids were in the garden in the Summer but the real reason is that I cannot get over the fact that my disabled son can beat me hands down at Wii tennis , particularly as I paid to have lessons for two years . It may not come as such a surprise to my dear friends whom I had the lessons with but what annoys me more than anything is that he doesn’t even look at the TV half the time! If I could just remind you of some of the comments we have had from Occupational therapists over the years in their reports of Alexander, – "Alexander has visual perceptual difficulties which makes it very difficult to accurately place objects (ie raisins in an egg cup)", "Alexander’s pincer grip remains undeveloped", he has poor spacial awareness and has difficulties controlling his movement ". I could go on but the point is, if they had given him a Wii control instead of raisins he may have surprised them !!
Once back at school Alex’s teenage vanity has taken over again. Last term it was all about having two pockets on his school shirt ( please tell me anyone if you have ever found these ). I spent several evenings transferring pockets from one shirt to another so that he had two to fit his very specific requirements. My sewing skills held up for the first couple but after that I got carried away and thought I could manage it after a glass or two of Sauvignon and with half an eye on Desperate Housewives with what can only be described as disastrous results. This term so far it has been about hair gel (vastly over applied ), new glasses ( I caught him repeatedly throwing his old ones at the wall singing "glasses broken " to himself) and of course he still favours a coloured tie to match with T the driver’s tie of choice of a morning ! This trend took off with some others in his class last year, the boys must have looked as though they were auditioning for News at Ten .
Alex has a new teacher this year – his 3rd Mrs Smith of his academic career and I will not have a bad word spoken about them. We have not had a bad Mrs Smith yet and he is settling in well although it may bring a smile to those of you who read last month that Alex is studying Richard the Third this term. I was laughing to myself wondering what on earth he would be able to learn about this Monarch when I realised that I know nothing whatsoever myself ( I have tried several times to learn the Horrible Histories Kings and Queens song and still can’t remember it ! )
Apart from that, we have 2 new chickens , Lady Gaga and Snowie to keep Kelly , the last of the Charlies Angels company. Sadly, Sabrina recently passed away (the only way that Alex can understand this is that she was either "broken", or "finished"). I guess both are true really. We’ve also acquired an Ipad as you can now get a Makaton app which will be great.
So the second half of the month has been much more out doorsy and fun . I don’t know if it is just me but I have got the wrong date, for the wrong activity at the wrong location a few too many times this month and think that I may be overloading my tiny brain – how will I ever learn about Richard the Third when I have Guides, Netball, Basketball, Parents evenings, Dance , Cheerleading, Sailing, Oh and work to get right first !
Special Family - the funny side
Sunday 2 October 2011
Monday 5 September 2011
Summer Holidays
As the Summer Holidays draw to a close I have been reflecting on the reality of my experiences which as usual, are in sharp contrast with my expectations.
Of course we all share the disappointment that the endless Sunny days with happy children just enjoying the weather and playing for hours in the garden didn’t really happen and for at least the 3rd year in a row the bottles of sun tan lotion lay barely used. Despite this I have still managed to neglect the lotion on the one sunny day we did have and both Charlotte and Sophie have "strap marks" which did eventually fade from lobster to acceptable fudge.
Last night, on only my second "girls night" this Summer we were discussing the impression one gives when strangers look at you as a snapshot . When I am out shopping with my twins, apart from the occasional pre teen ‘you are the worst Mum in the world’ sulkiness, we could appear to many, to be the image of happiness. At this point I often feel like wearing a Tshirt that says ‘I have a disabled child at home’ as I cannot live the lie.
Alexander has Cerebral Palsy, Hearing Impairment, Severe Learning delay ( a funny phrase as it does give the impression that one day he may go from understanding Mr Tumble and his slapstick humour to reading Shakespeare ), and Autism. Of all of Alexander’s difficulties his Autism is by far the most challenging to deal with. This mainly displays itself by obsessive behaviour around some of his favourite DVD’s. At present Harry Potter is the number 1 obsession. Yes, I did spend 1.5 hours using an extended coat hanger to retrieve Philosophers Stone from under the decking , and also I have gone from being quite a fan to developing a slight hatred for poor Harry.
This Summer has been, as usual a logistical operation, planning almost every day of Alexander’s ‘break’, with play schemes , overnight respite, home Tutor and babysitters . He spent a week at Fairthorne Manor, a local activity play scheme run by YMCA that Alexander has gone to for the last 8 years. As usual not without incident Alex decided on day 2 that he had to be a tiger (based on some face painting he had seen) Not having a face painting kit to hand my Chanel bronzer and waterproof eyeliner came to the rescue - I can only now pay homage to the impressive lasting power of the eyeliner as the whiskers did me proud for 4 days!!
As usual Alex has tried to be ‘helpful’ around the house. One of the girls favourite stories about his creative streak revolves around him decorating a Cottage Pie I had left on the worktop whilst dashing out to the Brownie drop off, with sliced Mango that I had already cut ready for next day’s packed lunches. It was an amazing creation that looked like either the struts for the O2 Arena ,or a giant Orange monster claw reaching out through the potato topping of my pie. Needless to say, we were all hungry so the Mango was removed and we ate our slightly more exotic pie anyway.
Not all hilarious though. On the first day of the holidays Hubby was to receive his long service and Good Conduct Medal at Police HQ. Admirably he wanted Alex there as family photo’s were to be had with the Chief Constable. He had prepared as best he could by arranging to be the first to collect his medal. Those of you with toddlers will relate to the short window of time you can rely on them to possibly conform and behave and sadly Hubby had misread the arrival time. We were an hour early. Alexander had other ideas though. He does not enjoy formality so decided to let out a few of his shrieks that make heads turn. (My heart goes out to the Mother who was asked to leave the West End production of Shrek with her autistic son this week). By this time, sat in a packed lecture theatre we tried to placate with a biscuit. This was deliberately eaten in a style that any ogre would be proud of. At this point I decided to remove my ogre before anything worse happened. Out in the atrium he swung for me in front of the Head of HR (at least she understands my application for flexible working now!) and made our way home. You see, had I allowed him to go to the ceremony with painted nails things may have been so different but we will never know!
So, as the new term begins what challenges will we be facing, a 30 mile round trip to collect "Woody" who has been left at school again ?, a trip to the local Superstore at 2am to find the right Teletubbies DVD that will bring sleep to our house – learning the hard way in lane 3 of the M3 that if your child doesn’t want to go to his hospital appointment that he may try and open the door. All this and more I’m sure
X
Of course we all share the disappointment that the endless Sunny days with happy children just enjoying the weather and playing for hours in the garden didn’t really happen and for at least the 3rd year in a row the bottles of sun tan lotion lay barely used. Despite this I have still managed to neglect the lotion on the one sunny day we did have and both Charlotte and Sophie have "strap marks" which did eventually fade from lobster to acceptable fudge.
Last night, on only my second "girls night" this Summer we were discussing the impression one gives when strangers look at you as a snapshot . When I am out shopping with my twins, apart from the occasional pre teen ‘you are the worst Mum in the world’ sulkiness, we could appear to many, to be the image of happiness. At this point I often feel like wearing a Tshirt that says ‘I have a disabled child at home’ as I cannot live the lie.
Alexander has Cerebral Palsy, Hearing Impairment, Severe Learning delay ( a funny phrase as it does give the impression that one day he may go from understanding Mr Tumble and his slapstick humour to reading Shakespeare ), and Autism. Of all of Alexander’s difficulties his Autism is by far the most challenging to deal with. This mainly displays itself by obsessive behaviour around some of his favourite DVD’s. At present Harry Potter is the number 1 obsession. Yes, I did spend 1.5 hours using an extended coat hanger to retrieve Philosophers Stone from under the decking , and also I have gone from being quite a fan to developing a slight hatred for poor Harry.
This Summer has been, as usual a logistical operation, planning almost every day of Alexander’s ‘break’, with play schemes , overnight respite, home Tutor and babysitters . He spent a week at Fairthorne Manor, a local activity play scheme run by YMCA that Alexander has gone to for the last 8 years. As usual not without incident Alex decided on day 2 that he had to be a tiger (based on some face painting he had seen) Not having a face painting kit to hand my Chanel bronzer and waterproof eyeliner came to the rescue - I can only now pay homage to the impressive lasting power of the eyeliner as the whiskers did me proud for 4 days!!
As usual Alex has tried to be ‘helpful’ around the house. One of the girls favourite stories about his creative streak revolves around him decorating a Cottage Pie I had left on the worktop whilst dashing out to the Brownie drop off, with sliced Mango that I had already cut ready for next day’s packed lunches. It was an amazing creation that looked like either the struts for the O2 Arena ,or a giant Orange monster claw reaching out through the potato topping of my pie. Needless to say, we were all hungry so the Mango was removed and we ate our slightly more exotic pie anyway.
Not all hilarious though. On the first day of the holidays Hubby was to receive his long service and Good Conduct Medal at Police HQ. Admirably he wanted Alex there as family photo’s were to be had with the Chief Constable. He had prepared as best he could by arranging to be the first to collect his medal. Those of you with toddlers will relate to the short window of time you can rely on them to possibly conform and behave and sadly Hubby had misread the arrival time. We were an hour early. Alexander had other ideas though. He does not enjoy formality so decided to let out a few of his shrieks that make heads turn. (My heart goes out to the Mother who was asked to leave the West End production of Shrek with her autistic son this week). By this time, sat in a packed lecture theatre we tried to placate with a biscuit. This was deliberately eaten in a style that any ogre would be proud of. At this point I decided to remove my ogre before anything worse happened. Out in the atrium he swung for me in front of the Head of HR (at least she understands my application for flexible working now!) and made our way home. You see, had I allowed him to go to the ceremony with painted nails things may have been so different but we will never know!
So, as the new term begins what challenges will we be facing, a 30 mile round trip to collect "Woody" who has been left at school again ?, a trip to the local Superstore at 2am to find the right Teletubbies DVD that will bring sleep to our house – learning the hard way in lane 3 of the M3 that if your child doesn’t want to go to his hospital appointment that he may try and open the door. All this and more I’m sure
X
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