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Autism: Living in the CageAugust 25 To Sleep is to Dream Well, Asa does not dream much because Asa does not sleep much! I have
worked out the average hours of sleep I have had and it works out at
three hours a night for the past month. I am, I have to say, a little
tired. Of course, being the school holidays makes it harder as I have
more "incidents" to clear up as well as the constant supervision he
requires. Autism is a strange thing and Asa, although severely autistic, is growing rapidly into a beautiful young man. His behaviour does change, not always for the better, but I see in him the man he will become. This is not the man I would have wished him to become, an independent, confident, successful and, most of all, happy person. He will never be all those things but he will be happy and confident. He will enrich other peoples' lives as he has enriched ours. He has qualities that without his autism he would not have. The depth in his eyes, the creativeness in his floor art, even his ability to relieve the respite home of their medicine cups despite the fact that they watch him closeley, all this, and more, contributes to the amazing young person he is. Of course there are major problems with his care and our lives have changed beyond all recognition in a way I would not have anticipated but, I can see beyond all this. One day, my son will grow up into a handsome man, with people around him who live and care for him. His special qualities will touch other peoples' lives, hopefully, he will be an inspiration to other parents who are worried about the future for their child. He will be able to say to them (though not in words), "Look at me! I am happy, I am healthy, I have quality of life, I am loved." You see, I do not need to sleep to dream. I have my dreams without the need for sleep and I know my dreams will come true. I hope yours do too. Time Flies (written 24th July 2009) OK. Well it is now 24th July 2009. I am determined to add to this blog
on a regular basis. So much happens, we learn to deal with different
situations and problems but they can be forgotten. So a written record
is useful to us as well as being helpul to others, maybe. Asa is now 13, Bethany is 14. I cannot believe that the two "babies" of the family are now teenagers. We are at the end of the first week of the long summer holidays. Much as I love having my children with me, Asa is extremely hard work, constant supervision and cleaning are a normal part of my life and sleep is still infrequent. However, we are getting a lot of support and help, there are people here that really want to assist us with the difficulties we face. There is progress in some areas. I have had Asas' window open (on a restricter) and, to my knowledge, he has not thrown anything out. That was something he would do if there was the slightest gap. Whether he will start to do it again remains to be seen as his behaviour does go in cycles. I am on a constant watch for his undesirable behaviour, (smearing), and if I catch him in time it is much less mess to clear up. What I need is a mobile phone sized wireless monitor that is portable. I can then wear it round my neck as well as the bathroom key so wherevre I am in the house or garden I can see what he is doing. Yesterday we went to SPACE, a multi sensory building in Preston, with Tiggers. If anyone is looking for a charity to donate to you couldn't find a better cause. Tiggers provides out of hours sports and leisure provision for children and young people on the autistic spectrum, as well as their families. It is a small charity, doing invaluable work, with a wonderful team of volunteers. They certainly enable Asa to access activities he could not have done before. Now about food! Asa, as mentioned before, has a very limited diet and he loves cheddar biscuits which are a horrendous price in supermarkets. Last week I went to one of our local bargain shops and they were selling them for half the supermarket price, so Bruce went back today and bought 40 packets!! That should last a few days. Look at the picture of Asa in the hanging chair taken yesterday at Space. He was so relaxed and loved it. I wonder if we can get one? June 14 Did you think i had gone away?Well, I suppose I have in a way. Gone to the sunny? Northwest. The most popular resort in the UK. A very different place to live compared to the rather sleepy, tranquil village in Kent. It has been abit of a bodyshock really. And it has been months since I updated my blog. Well, I cant possibly relate all that has happened. We have been here seven months now and I would have to sit here for a further seven to enter everything.
So, a quick guide to how life for has changed for all of us. Changed for our three older children too, 2 in Kent and 1 in Hertfordshire (how much we miss them). One has his own flat now, one has another child, so we are grandparents twice over, and one is doing well in all areas where, perhaps, it was a struggle. We are so proud of them all and what they achieve and we think of them everyday. We talk to them all regularly, which is so important. Communication is a vital part of any relationship.
Which leads rather nicely to the subject of Asa. So much has changed for him. He has a new house and is in a becdroom now. He adapted to this well except for his sleeping pattern, such as it is, was thrown way out. For the 1st six weeks I had very little sleep and that was hard, particularly as we were trying to furnsih an almost bare house and sort out schools for both him and Bethany. And trying to adapt to the northern way of life.
We obtained a place for him at the local school for children with severe learning and physical difficulties and, I have to say, he has progressed so well. He settled in very quickly and the school took to him straight away. That was a huge relief. the school has an excellent reputation and rightly so.
Bethany has settled well too. She can now walk to school and she has made a good circle of friends. She is settled and happy at school (particularly as they seem to get very little homework).
The big change really is that Asa has stopped drinking milk!! From 8 pints + a day to nothing. It wasnt a gradual thing. He just stopped! Now he is becoming very responsive and he is starting to say words! I never thought he would talk, we had tried so hard using all sorts of methods to no avail but now he happily repeats words.... Bethany is Be'a'my. It is wonderful. He says Mummy so clearly, daddy not quite so clearly but it will come.
On the downside perhaps, he is getting very clever at "stealing" things from rooms he shouldnt be in. He has cracked the special lock we put on the bathroom door, raids Bethanys' room when she forgets to lock it, (she has a coded lock on her door) and has stolen some of my treasured crystal collection.
His temper is fierce now too and his tolerance level is less forgiving. If I tidy and clean his room, which I have to do at least once a week for hygeine reasons, he goes ballistic!!!
We do not attempt a supermarket shop with him anymore, it is too hard to deal with. I shop on-line in the school holidays.
Life has changed radically, although we still have the everchanging challenges facing us as a family, that all other families that have a child with autism have to face. These challenges change constantly and there are unknown experiences ahead, some good, some bad.
But we have much to be thankful for. we have a close loving family, those near and those far away, which is more than a lot of people have.
I promise to update this blog regularly, hopefully to show how life with autism is hard, but is interesting and can be fun.
Talking of fun, amid all the chaos, our cat had five kittens.They are now seven weeks old and at this very moment in time they are tearing around getting up to all sorts of mischief! Chewing my stairs at the minute. (Aaargh)
Hurry up Matthew, Come and get your two Little bundles of fun!
February 19 Round and Round We Go.Its been half term this week and I have to say, it has gone very quickly. We have had so much clearing up to do, with Asa throwing drinks and unmentionable other things all over his room. He tipped his bottle of chocolate shake over his trampoline last night. It went up the doors, walls, well everywhere really. So there I was again, crawling around the floor with bucket and cloth in hand. I am getting to old for this, (groan).
Asa has so much energy, we timed him the other night, doing his gymnastic routines. he launches himself from the top of the PC monitor, (yes, he stands on the top of the monitor) and throws himself on to his trampoline with such style he could win gold in the olympics. He then somersaults backwards and ends in a standing position. Then this is repeated whilst he runs a certain barney video footage over and over again. Thursday night, 7.45pm till 12.15am without a break. this has become a regular nightly occurence and last night I took the monitor out for his safety. He now uses the desk to jump off. And last night it was 1.30am.
On Monday Asa had a 9am till 2pm session at the new respite centre. So we had some time alone with Bethany to enjoy. We dropped him off, got back home and discovered a death in the family! Bethanys' hamster, Laura was dead. I have always said, no more pets once these go. She has a cat, a rabbit and the hamster and they all need looking after, feeding, cleaning etc. And guess who has the pkeasure of caring for a small number of Gods' creatures? Yes, you guessed correct. So, no more pets! I stand my ground! Hmmmm. Bethany was distraught, so upset. I couldn't take it. So, off we went to Pet City (or whatever they are called these days). Not one but two hamsters were purchased, along with a new cool cage! Me? Soft? What makes you think that? The two new Chinese hamsters are settled in well in their purple and flourescent green cage with all sorts of exciting things for them to do. Well, at least they entertain the cat.
Today, Asa went to respite again, 9am till 2pm. Bethany stayed with her sister and beautiful son last night and wanted to stay tonight, no school tomorrow, staff training day. We were on our own! No kids! What did we do?
We cleaned Asas' room, dusted the walls, cleaned off sticky tape where had had had pictures stuck up and other things that really needed doing. After, we had time for a quick cup of coffee before we had to leave to get him. But we did spend time doing something together, on our own. Quality time.
We have been trying for a long time to get some help in the home with Asa. He is very tiring & has to be watched ALL the time. We had our contact with the disabilities team trying to get us help through a charity that helps carers. We used to have two wonderful ladies come in before he went to school and they were brilliant but since he started school we have had nothing. The respite that has just started is the first we have had for five years.
Our contact said he would try to get us extra help, bearing in mind, we get no help from extended family, no neighbours and we are both in our fifties now and asa is so active.We received a letter, saying that poliicies had changed and if we wanted help we would have to pay for it out of Asas' disability allowance.
We were under the impression that this allowance is given to those with severe disabilities to help with the added cost of caring for someone with many problems. Asa costs us a small fortune, in replacement items that he regularly destroys, extra laundry for his bedding that he is always messing up and because he wont wear clothes our heating has to be on all the time when its cold. Our combined power bill last month was £190.Just one months bill.
So Asa costs us considerably. This is a vicious circle. We are limited to the amount we can earn as Bruce has to be here to help take care of Asa, and he is so exhausting and demanding. We refuse to claim income support and rely totally on the state, we have our pride. It is a struggle to cope and I have read that famiies with disabled children are often in debt due to the extra burden placed on them. We can identify with this.
If we want more help, it has to be paid for from our resources. Here is the circle we are forever on. We cant put in the effort and time in employment, so we cant afford to pay for help. If we had more help, maybe we could earn more which would enable us to pay for the help, but we cant afford to because we cant get the help. Do you see the problem?
I am being perhaps too negative. Asa is a beautiful, bright and fun child, full of suprises and a blessing, despite his problems.
But.........
We love all our children very much and want the best for all of them. We want the best for Asa and we want the time and energy to give back to our children the best we can. Is that too much to ask?
Answers please, on a postcard.
February 05 Time waits for no man.How true that is. Another few weeks have gone by. Life is so hectic, when Asa is home it is a constant battle to keep an eye on him. he is so quick, so clever and very crafty. I spend most weekends watching, here at my kitchen table, because that is the place he causes havoc most of all. He will go to the fridge and take the plastic tops of milk bottle containers. NEVER MIND IF THE MILK IS STORED ON ITS SIDE. As we found out to our cost the other day when we opened the fridge and a waterfall of milk cascaded out.
Finally we are getting some respite. Asa has been having taster sessions at a new respite centre. He has been twice now. Once after school for 4 hours and yesterday, 3pm till 8pm. It is strange, not having to think, "where is Asa" all the time as we usually do. Early days but we will see. he goes again on Wednesday and this time he will go straight from school and we will pick him up at 8pm.
But it is in the home we need help. Asa has been so energetic lately. not sleeping till 1-1.30 sometimes later. And he is bouncing around all over the place. I am so tired, beacuse I still have to get up to get the children out to school. Thank heaven for the trampoline. My advice to anyone with an autistic child is, if possible, get a trampoline. It enable sthem to get rid of some of the boundless energy they have.
We have been doing a lot of work in the house, which can only be done when Asa is at school, but it is looking good. Mind you, Asa can detsroy doors, floors, you name it, he can damage it!
For example, in his room, which is like a conservatory, we put up drapes across the ceiling. They served several purposes.
1. To keep the heat out in the summer.
2. To keep the cold out in the winter.
3. To deaden the noise a bit. (asa is very noisy)
4. To make it look more attractive.
We put them up in the summer, no problem. They did the job well, but one day, a few weeks ago, I couldnt find his sleeping bag. This goes everywhere. He wears it round the house like a cloak. I turned the place upside down but it was no where.
Then I happened to glance up in his room. My lovely drapes were all sagging and bulging. I got Bethany to climb on the trampoline to see what was there. Asa had found a new place to store his toys and blankets AND discarded nappies, (sometimes he strips). We persevered for a few days, removing his hidden stash, telling him no, but it was no use. So, the drapes came down, Another failed idea. Beaten by Asa.
Its half term the week after next. I wonder what he has up his sleeve for then. Watch this space! |
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