Archive for the 'A Parallel Universe' Category
Monday, September 3rd, 2007
This column has become rather sporadic. I’m sorry and I promise to try to do better from now on!
No excuse, I know, but we have been dealing with a lot of family issues. Ageing parents causing concern. M, with his own problems, who is psychologically up and down like a yoyo, so much so that I can’t keep up.
Then, of course, there was the summer holiday to contend with. Five weeks of it. Thank goodness for holiday playschemes. These are a must for children with special needs, they add some structure to the days and weeks and provide families with a little much needed respite.
Unfortunately many children with special needs cannot attend schemes designed for mainstream children for a variety of reasons…problems of physical access, schemes being too busy and noisy, lack of 1:1 support etc. There are specialist playschemes for children with special needs but they don’t come top of funding priorities, because intensive support is very expensive. There are just not enough holiday schemes or enough spaces on the ones that do exist.
I have been lucky this year, as we had at least two days a week on playschemes. Enough to keep S happy and me relatively sane. But he is a teenager now, albeit a very small one. Next year he will be too old for these schemes, yet he will never be able to go out independently as a normal teenager would. I don’t know what we will do in the summer, or indeed other school holidays.
I’d better start campaigning now…as soon as he goes back to school, that is!
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Sunday, June 24th, 2007
I’ve spent the last month in a haze of parental guilt and dealing with family crises. I am trying to juggle work and study with home and family and not doing so well, so this week I had an appointment with a family therapist. She helped with the guilt issues but thought I should make more ‘me time’. Good in theory, difficult in practice.
Especially when S has a new pastime of emptying any bottle of liquid he can lay his hands on. The toxic stuff…cleaning fluids and medicines…are all safely locked away, but over the last weeks he has been emptying shampoo, shower gel and skin care into his bath each night with abandon. Not to mention drinks and sauces over the kitchen floor.
Still, it saves me having to spring clean the bathroom shelf, I guess!
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Thursday, May 24th, 2007
Sorry about the long delay in posting. For the last few weeks my attention has been firmly focussed on M, who has growing-up issues of his own. S is currently the easier child, something I never thought I would hear myself say.
When you have a child with special needs, it is all too easy to let that child become the main focus of the family. Brothers and sisters grow up feeling that their needs have to come second, even though that obviously isn’t the case. We have tried to make sure that M does not miss out on the normal experiences of childhood, aided by good friends who would take him on their family outings as company for their own children and help out with the school run when needed.
But it is a delicate balancing act and I can’t help feeling that somewhere along the way we must have failed…
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Sunday, April 29th, 2007
I was looking back at our family photos recently.
Pictures of the boys when they were small. M sitting on a blanket under the fruit trees at the end of our garden, his face lit up with a smile as he plays with the colourful plastic toys surrounding him.
S at the same age with the blank stare of the child with autism, resolutely ignoring both people and toys. Children with autism have no imagination, so very limited play skills. They often only approach people as a means of getting what they want. Some do not even recognise their parents.
Yet they can change. As he grows older, we see pictures of S smiling broadly at the camera…a short phase, like most boys he now hates to have his picture taken! He can play, in a limited fashion, with things which interest him…these usually involve music and technology. He has a smile which melts the hardest heart and gets him his own way far more often than is good for him. He has even learned to say please using Makaton sign language in his own idiosyncratic way…he blows us a kiss.
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Monday, April 9th, 2007
What keeps your child happy in the school holidays? Theme parks? Movies? Football?
In the case of S it is quite simple. Lots of DVDs, CDs and videos ( he still loves the old technology.) The CBeebies website on his computer. Most importantly of all, a huge pile of Argos catalogues.
You are probably wondering about the Argos catalogues. Well he doesn’t just like to look at the pictures, he likes to tear them up. Every evening we have to clear up a huge pile of shredded paper from the floor. He chews on pieces of paper and occasionally swallows them by accident, he tightly twists up long shreds of paper and tries to poke them into his ears, as he often suffers from the pressure of mild glue ear. Thankfully he has finally stopped pushing the paper up his nose, after a nasty infection and the need for Mum and Dad to use tweezers on a regular basis! We have to keep an eye on him all the time.
If we can’t get Argos catalogues then glossy magazines, travel brochures and even telephone directories will do, the thicker the better. He is quite fussy.
Oh well, it’s cheaper than theme parks!
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Saturday, March 31st, 2007
School holidays are upon us once again. S will be going to a playscheme for four days and with the extended holiday weekend in the middle of the two week break, this time of year never seems too bad.
Yesterday S came home from school with a multitude of Easter goodies and his report. On it he had been given the chance to write about what he enjoys at school, by sticking on symbols to represent his favoured activities. He had ‘written’:
I enjoy music, cooking, shopping and videos.
Life skills are very important, of course, but could someone please tell that child that he also goes to school to learn!
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Tuesday, March 20th, 2007
It was Mother’s Day here on Sunday.
I didn’t get flowers. We don’t have them in the house because S will try to eat the flowers and drink the water.
S usually makes some sort of card at school but I searched his book bag in vain. I think they were too busy with Red Nose Day last week as I had earlier in the week been presented with a keyring with a very unflattering photo of S wearing his Red Nose! (For readers outside the UK , Red Nose Day is a bi-annual national fundraising day for the charity Comic Relief www.rednoseday.com)
I did, however, get a box of chocolates from M, together with a card which he forgot to also sign for his brother. S can only write his name with a lot of help. But it was special, because for the first time ever M had chosen and paid for the chocolates and card himself rather than rely on his father to get them.
The words on the card read:
‘A toast to you on Mother’s Day, the woman who taught me everything….call yourself a responsible parent?’
Says it all really!
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Friday, March 9th, 2007
Fast forward to the present. S attends a school for children with autism where he is doing well.
It is 3.30pm and I receive a call from his lovely class teacher. She sounds serious.
‘I’m sorry, S has just been beaten. I’ve given him first aid.’
Images of my immature, trusting son being beaten up by large thugs flash alarmingly through my brain. It is only as the conversation continues that I realise I have misunderstood, she must have said ’bitten’ not ‘beaten’. It was her Eastern European accent which momentarily confused me.
Most parents would be horrified to learn that their child had been bitten at school, but actually I did not stress. I know these things can happen in the blink of an eye when a child is distressed and are almost impossible to prevent. Not so many years ago it might well have been S doing the biting, in fact I still remember the embarassment of seeing the imprint of a perfectly formed set of tiny teeth in the arm of one of his classmates. It could only have been S as he was late losing his teeth and the others had gaps in their mouths. Luckily the child’s mother was a friend and shrugged it off just as I am doing today.
An hour later he arrives home in his taxi. He looks happy. I ask him where he was hurt and he ignores me. At the third attempt he casually points to his upper arm but won’t let me look. It is not until bedtime that I see the damage. A small deep bruise, but the skin is unbroken, thanks to the thick fleecy top he was wearing.
It could have been much worse.
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Monday, March 5th, 2007
When I had my first child, M, I had to learn about what was available locally for young children. I had just given up work and we had not been living in the area for long, so I also had to make new friends. Some of my best friends now were met in those mother and baby groups fifteen years ago.
When S arrived it should have been straightforward. The local pre-school playgroup was very popular so I put his name on the waiting list at birth. From the very beginning I took him along to mother and toddler groups with M. He had plenty of chances to socialise with babies his own age but he could not cope with it and would get very distressed. It became a struggle to take M out and cope with S.
Once he started to see the specialist speech therapist at the hospital his name was put down for an assessment and therapy group there each week. It was a lovely supportive small group for both kids and parents, but S hated that too. He had no idea how to play and would cling to my lap. He hated the noise. Instead of just feeling the dried pasta shapes he ate them and painted his face rather than the paper. He wouldn’t go on the climbing frame if any other child was on it and refused to wear an apron for art or water play.
I knew that he and the others were there to be assessed over a period of time for autism. But some of the parents were unaware of this fact, so the ‘A’ word was never used…
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Thursday, February 22nd, 2007
S is now two years old and we are paying our first visit to a speech therapist. He is not talking or understanding, but we don’t really know why, except that he does have glue ear. The paediatrician who tested him for the glue ear had mentioned the words developmental delay, but had not elaborated and I had been too stunned to ask.
I have been to this community clinic before and know that it is not child friendly. Parents are not allowed to take buggies inside and there is no parking on site, so it is a choice between finding some way to secure the buggy to the railings outside with a bicycle chain, or park in the street around the corner and carry or drag your toddler towards the clinic. I choose the latter.
The speech therapist works in a room on the first floor, with a small waiting area attached. S is even more impatient than your average toddler and I have, as always, bought a large bag of essentials, drinks and snacks. He starts to eat his way through a packet of custard cream biscuits, pulling them apart to bite out the cream and then discarding the biscuit on the floor.
The speech therapist is welcoming. It is a warm late spring day and the window is ajar to ventilate the room. As she tries in vain to attract the attention of a screaming S with toys, bubbles and shaving foam, he fights his way out of my arms and heads manically straight towards the open window. I catch him just in time and he sinks his teeth into my arm.
‘He must be very hard work for you,’ she says. ‘I think I need to refer him to a colleague at the hospital.’
We never see her again.
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