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August 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! January 02 A bit of a catch upWell, I started this back in December, but life with Asa is and other fsmily members is so hectic I have not found the time or the energy to do this. So, I started writing about a visit to a bookshop just before Christmas.
We had taken Asa and Bethany to Lakeside shopping centre, somewhere that is fairly easy in respect to taking Asa out. We had had a fairly good day, bought them some toys, (asa had a light sabre and it is one of the few toys we have bought him that he seemed to like enough to sort of play with it). Bethany had been a little darling.
Before coming home, we decided to visit a rather large bookstore. They have a coffee shop upstairs and we thought we could walk Asa through the store, uo the stairs and sit with him. No problem, he sat with his bottle and cup and his bowl of crisps, being very noisy but behaving himself. Bruce and Beth went ot browse through the books. After some time Bruce came to sit with Asa and I took the books he had bought, spent some time with Beth choosing some books for her and picked some books for my beautiful grandson.
We went to pay, after which I turned to find Bruce and Asa in a sort of tussle. It turned out that Asa had done a runner through the store after spotting something he had taken a shine to. He had hid it in his favourite place, his nappy. This was a difficult situation. we could not start pulling his pants down in the middle of the store, but we had to get whatever it was off him. I went looking for something we could give him in exchange. ( He is working on the PECS system at school and is learning to exchange objects. I found a box containg silver baubles, similar to some he had taken a liking to, so I gave him one and went to pay, yet again for some thing i didnt want but Asa had to have. This often happens. We find ourselves spending money on things we dont want to buy.
Anyway, we managed to get the items off him, 2 plastic crystal type keyrings and made a quick exit out the store. We are practised in the art of quick getaways!
December 06 In sickness and in health.Now we are in to December, we have had cold days and nights, I am sure we have much colder to come. Asa has been busy being Asa. I have been busy being Mum, not just to Asa but to all five children. It is something I am always aware of, that the other children are not pushed out because Asa is so demanding. Admittedly, everything has to revolve around him or our lives would be more chaotic than it is already. In particular Bethany is a worry. Finding things she can do is hard. Playing board games is not possible because Asa runs off with the dice or figures. Doing arty stuff is hard as he runs off with that. Having her friends round is hard because you try to focus on what they are doing and thats when Asa can do his worst. He knows you are not watching him so he will get up to all sorts.
But our older children are important too. Although all are in their twenties, they each have their own problems thay are trying to deal with. They all need Mum and Dad, and the day that stops I shall be very sad, but we are so proud of them all. They are finding their way in a difficult world and each of them have personal difficulties (which I wont go into in fairness to them).
Asa was sick last week, a very rare occurrence as, despite his limited diet and lack of sleep he is very fit and healthy. We were shopping over in Lakeside for a bed for bethany when my phone rang and the dreaded, "hello Mrs Ainge, It's Abbey Court here." Now, much as I enjoy having Asa around, when he is at school is the only time we can get certain things done, like shopping for beds! She said he was under the weather but agreed to keep him at school as we were a fair drive away. Minutes later the phone went again and it was the school again. No, he had to come home, he was being sick.
We got to the school in record time, somehow. And he looked awful, green. He collapsed on the floor and was sick. We got him home and he seemed fine for about an hour but that didnt last. That night I washed FOUR quilts.
The following morning he was much better, but as I went to get his school bag out, he pushed it back in the cupboard. He did this 3 times, bearing in mind Asa does not talk, he used very effective body language to tell me, in no uncertain terms, that there was no way he was going to school! I was so pleased. He had found a way to tell me he didnt want to go to school, despite his lack of communication.Excellent job Asa.
He was soon back to his usual self, jumping singing and generally being loud.
We would love Asa to talk but although we have tried intensive play therapy with him which is the b st way to get through to him, he wont talk. He understands so much of what we say but he cant respond.
As all parents in our position, we worry about his future, what will happen when we can care for him no more? Who can possibly care for him better than us? Not a soul in the world. November 23 Bubbles and giggles23rd November 2005. Cold and foggy here on the North Downs in Kent. They say snow is on the way. One problem we have is that Asa will not wear clothes in the house. He runs around in nappy and pants(when he keeps THEM on) so consequently our heating has to be on high all the time he is here. Big bills! I dread them. I think OAPs get a heating allowance, so do disabled householders but because Asa is not a householder we dont qualify. Is there any justice in the world?
I have had to remove all shampoos from our bathroom. Asa was emptying half the contents from each bottle into the bath and then topping it up with water, placing it back on the shelf then jumping back in the bath so Mum would not know, but I caught him in the act. Clever, huh? Because he doesnt talk and makes strange noises, people think he is stupid. Definately not, in fact he displays very high levels of intelligence. He can work out a situation and very quickly use it ti his advantage. This morning it was the bubble baths turn to undergo the Asa treatment, so all such items have now been removed.
One distinct advantage of having an Asa is that you end up with a clutter free house!
Now, yesterday evening we went to asda in Gravesend, we had a lot of posting to do (Ebay stuff) and we usually use the post office in Asda. The staff know us, they are always friendly and helpful. Usually we go when the children are ay school but we had to wait in today. After, we we sat in their Mcdonalds and had a coffee, bought Bethany a happy meal and Asa had his usual. We always take some crsips, smarties and his bottle of choclate shake and baby drinking cup with blackcurrant juice.
I sat with him while Bruce (hubby) and Beth went to get a few bits of shopping. At the table behind us sat two little girls aged about 5 and 7. Mum had gone to the cash machine so they were on their own. They were giggling and making silly comments at Asa, calling him baby, and other things. This continued for some time till Mum came back and they were as good as gold. She went for something else and once again they started.
This is something I never get used to. It doesnt bother me as much as it used to. There is obviously something wrong with Asa, he is very noisy and does a lot of strange things with his hands and face, and he doesnt care what people say about hm. But as a parent it is so hard to describe the hurt you feel when some one is staring or having a laugh at your childs expense. It cuts right through you and there is little you can do to respond.
So, please, it is so much better to ask what the problem is, get the children to ask so it can be explained. We love it when people do that, it shows an interest in Asa rather than treating him as some freak show.
Enough said, I think! November 20 Here we go and what a beginning.OK. Let's start. I aim to keep a daily log about what it is like to live with a child with severe autism. It can be fun, it can be fraught, it can be many things, so: some background info:
Asa is nine years old, born 29.06.1996 and diagnosed age 2 years 7 months as severely autistic. The last of 5 children, ages 27, 25, 24, 10 and 9. Life is never boring with so many children, all with different personalities and hopes and aspirations. All much loved and cherished.
Right, so day to day life in the Ainge household will be shared with the whole world. Be prepared.
Today, Sunday 20th November 2005, Very cold and frosty here in Kent. I had a lie in! At 7.05 am I was woken by Asa's television, volume at maximum playing a Barney the Dinosaur tape. I must explain, at this stage, that Asa has a special room, a conservatory type room that is his special "place". We built it, with the help of many kind and generous people, and he had therapy in there for a while, Asa very much took to this room. Over the years it has changed according to his needs and he now has a large trampoline, (which he sleeps on) a computer, a TV and video plus large excercise balls and a variety of small "toys". At night, he is locked in and monitered via CCTV.
So, anyway, this very loud awakening had me quickly dressing and running downstairs to turn the volume down, so the neighbours would not be disturbed any longer. Ths is so difficult as , although he does not speak he is a very loud child. He had also removed his nappy, (he is doubly incontinent) which is a new thing for him. He has to be watched constantly, take your eyes or your mind off him for a moment and he knows and will do things he should not.
I had the usual, bottle and drink to do and smartie time, he is allowed two small boxes of smarties a day, although sometimes he has more. All his fodd, which consists of crisps, sheese biscuits and smarties have to be put in a plastic bowl which we try to restrict to the table, but he does escape with them and they end up on the floor or stuck into his latest project. ( he builds structures using elastic bands and whatever he can find to stick together. Some are quite amazing.)
To continue, my eldest son was coming over to lunch so I was making a roast and some mince pies, the phone rang and it was he, Joseph. Joseph is a frontman, singer for an up and coming Rockband, (www.opusbridge.co.uk .) They are really good and have just been signed and begin touring America next year. So I took the call, then Matthew, son no. 2 (aka Darth Vader) (http://spaces.msn.com/members/recurring ) saw Asa had red all over him. We thought he had cut himself, but no!. In the shortr time I had been on the phone, he had climbed on a chair in the kitchen and got some food colouring. It was everywhere, the floor, the chairs, the settee and him! In the bath he went and a big cleanup oeration began.
Back to the cooking, till once again, he came into the kitchen covered in, well lets just say, he didnt smell very nice. Once again all over the floor, chair, computer desk in his room so up to the bath yet again. This time Bethany, his 10 year old sister watched to make sure he behaved in the bath while I cleaned up.
He had a major screaming session this afternoon out of pure frustration but now, 4.50pm all is calm, he is under his blanket that he lives under, but he is being watched as always . Full of beans as usual, now climbing on the furniture, one minute to the next, you never know.
Sometimes it is too much, but that feeling doesnt last long. He is so adorable, but we are no fools, we get oler, he gets bigger and cleverer.
Oh for bedtime, but that wont be till gone midnight probably, when he finally goes to sleep.
But tomorrow is Monday and the fantastic taximan arrives at 8.10 am to take Asa to school for the day. How I love that man.
Update: 6pm. Asa sneaks his bottle of chocolate shake into his room, something that isnt allowed as you will see. I go in to turn his Tv down and AAARRRGH! Chocolate shake allover the place, on his trampoline, under the trampoline. Out comes the bucket again. Picture this, me under the tramplone with numerous cloths and hot soapy water with a nine year old laughing his head off and bouncing up and down on the trampoline and on MY head.
So today, I have had red food dye, chocolate milk shake and the unmentionable all over my clothes.
Question: Why do I not wear designer clothes? Answer: All of the above. |
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