My 13 year old is autistic... So much hard work but worth it. What area are you from? I hate filling out DLA forms for my son as it's not until you start on them that you realize how much extra help they need, we just do it!
The best bit of advice anyone gave me is to pick my battles. I'm quite a strict mum and everything was a battle when my son was younger but I learnt to chill out a bit and things calmed down a lot. Don't get me wrong i'm still just as strict just in a different way. Concentrate on the important things. stick to one or two things at a time and once you have them nailed go on to the next.
Good luck hun and keep up the good work
I have previously spent 13 years working with autism in adults as well as having a 9 year old son with it.
Every person with austism has different aspects to their personalities, and you cannot set standard rules for how to care for them. I personally had a terrible experience with the so called professionals at my local hospital. In the end I gave up using all their ideas and stopped going. My son is in main strean school and doing very well A/B grade student. The only issus he has is concentration, where he needs constant prodding to get on with his work.
You are the only person who knows your childrens behaviour, and what is likely to be good or bad for them. Standard methods cannot be applied, and I am appalled that hospitals try and practise them with autism.
Remember autism is mainly about how a persons brain processes information. You cannot forget that as a young child you will also get the usual bad behaviour, which is a normal part of growing up and testing the boundaries to see what happens. The main way a young child learns anything is by experience. Therefore if you mistake bad behaviour for autism, you could be creating more problems for yourself.
The main thing about dealing with your childs autism is how you communicate with him. Think about how he does things, ie repetitive operations, structured methods etc. I personally found that if I clearly explained everything in advance to my son then things went a lot better, ie what we were going to do and when. or why we were shopping. One of the most important things I did not do is maintain routine with the exception of bedtime, and even then I often had him sleeping in different houses just to change that. Routing is extremely difficult to maintain, therefore it is easier to constantly change things, but always remeber to clearly communicate in advance the change. Sudden change is always bad.
We were always very strict with our son, bad behaviour was never tolerated, therefore he never had a chance to develop into very bad behaviour. We did not allow autism to excuse bad behaviour, he spent plenty of time on the naughty step thats for sure. Bad behaviour caused by autism is usually triggered by something, and ive no doubt that you know what those triggers are, and you probably already work on diverting his attention before it becomes an issue.
As for sleeping in your bed, i gurantee you that its not an autism problem. You should explain to them that they are from now on going to be sleeping in their own beds. Remember to always remain calm, because this is going to be a battle. I have no doubt that when you put them in their own beds, that they will get up lots of times. For the first time they get up, just calmly say no, and put them back into their own bed. Every time they get up after that, do not say a word, just take them back to their beds, no speaking. You may have have to do this 20 times for 2/3 nights, but i promise you it will work. Remain CALM at all times.
Always be consistent, if you give a warning about something, always, always follow through. This is espcially important with autism, otherwise he will get confusing messages from you about what he can / cannot do. Remember he is always listening and learning, he just may not show it.
Remember you know your children best, not the doctors or specialist. Consistency/Love and patience will win through.
Coping with a child with aspergers is tough during the day without having to do it with sleep deprivation also. When I was sleep deprived things seemed so bleak and I would start to cry so easily. You will be able to cope when you get some sleep and allow your mind to come up with coping strategies to make it through the day-thats what I did and things did get better!
she is now receaving DLA on the high level they will be reassessing when she turns 5 on the mobility
this has allowed us to get several things that have calmed her down
she has got season passes for a place called snibston this is currently her favorite place in the world
the other thing we are looking at is talking to TTS supplies they are an education supplier and we are going to talk about equiping a foam room in the home this is something that has calmed her down considrably in the past, i mean foam shapes and safe flooring so if she throws herself around and wont hurt herself (it does help that we can get a staff discount from a friend)
they have back dated this around 4 months and between DLA and raised tax credits it has paid around 1,500 in two months
we have used this to get
season passes for snibston (very helpful)
season passes for the zoo (helping with speach and walking as its the only place she will walk and she now talks, albeit about animals, alot better)
safety gates on stairs (fell down twice previosuly)
sensory equipment for rear room
treats to calm down, (this sounds bad until you realise that a 4 year old punched holes in a door by using a coke bottle as a battering ram)
apart from that the moneys in the account as we are worried they will ask for it back
You should get a letter off DLA with a breakdown of what you have been paid and your new weekly amount, and you should get a tax credit letter with a new disability element and severe disability element added on. You can also claim carers allowance as long as you don't earn over £100 a week - regardless of whether your partner is working and you can apply for the family fund for something for the child once a year (means tested charity but dla and tax credits are non taxable so do not count) holidays or computers for example! I know it can be daunting but the amount of money reflects the amount of work! Get in contact with your local social services and ask for a carers assessment - they will assess your needs as well as the childs and can provide respite for you to get a well earned break - my 7 year old gets 2 and a half hours a week and it leaves me time to spend with the other 2! I wish I could tell you it gets better but I cant, what it does is get different, at the moment the tantrums and meltdowns are not quite so bad as he has realised people are watching but when he refuses to move it is getting really hard as he's almost at my shoulder and before long I'm not going to be able to move him manually (then the fun will start!). And after many parenting classes I am happy to tell you it is not bribary if you give for good behaviour it is a reward it's only a bribe if you give before the good behaviour with the intention of good behaviour! Good Luck and btw we all have our days where we want to run for the hills its only natural!