Severe Autism and steps?

Thank you Nomad :) AV, you should have mail. :)

Also want to add that I too am amazed.....Both your posts brought me to tears,DR I could just see your young man growing up going about his day.You should really write a book,such a practical no nonsense approach. AV your love shines through in every word ,that and hopefully with help from DR there is light at the end of the tunnel. Bless you both. <em>edited by Nomad on 20/10/2013</em>

Ok AV, will be in touch later today - you can take your email address off the page now. Ive been thinking of you and I know there were times when I seriously underestimated how a slow a learner my son was because he was so smart in so many ways, or perhaps it was that I didn't know how long something could take to start happening if it was going to happen. Anyway, whatever it was, once I realized that things could take an age to start producing results a huge weight was lifted off my shoulders. I stopped thinking in terms of a few months and I used to base things on about 10 months. I would decide over the summer what we were going to try and achieve and come September when we were back from holidays Id start putting strategies into place, I would then continue them until we were going on holiday again the next year. It helped me to do it this way. As an example - toilet training was a must because how my son would go about mother nature was not anything anyone could live with, him or us, - we had daily art exhibitions on the wall. I knew the reasons why but it had to be worked on and taken to some kind of level that he could live with, as well as us. So we turned a bathroom into the most desirable residence in town for us given we were going to spend so much time in it, it was so awesome we could have rented it out and we practically moved into it for the duration which was toileting every 15 mins for a very long time before it became toileting every hour etc etc etc. Eventually my son was clean and dry and by the time he was about 15 he was totally independent to the extent of not needing any help at all with anything - we don't even think about his toileting and haven't done for years. He even leaves the lid down and cleans up splashes with his Clorox wipes. :D It took years but it all worked. He went through the same stages all children go through but he had to do it at his pace which was way way way slower than other children, autistic or not. I know its not a very nice subject but its a reality and shouldn't be something people don't talk about, granted some of our loved ones never get to this stage of toileting but for us it worked and in my mind it would have been progress even if we'd just got one stage along from the art exhibitions. I think how we measure progress is also important. :) <em>edited by DesertRose1958 on 20/10/2013</em>

There is a talk this Sat by Open Diversity (I am a member of this group): Exploring Autism Saturday October 26th (4-6pm) The Archive (Safa Park - Near Gate 1) RSVP on Facebook or just come: https://www.facebook.com/events/1421710464719654/ They may have good info and this could be chance to connect with others.

DR1958, I bow down to you. You are such an inspiration and I enjoy your wise posts immensely. I second this motion :) I'm in awe. I can hardly deal with my 'normal' 5 year old twins, but to do what DR has done. I take my hat off to you and to anyone dealing with Autistic children. AV, your love and determination will pay off in the end. You have lots of support even just here on this forum. Best wishes to you and your twins.

Thank you Nashwa :)

OK AV - let me know how to contact you and I'll get out my broomstick.

av1998 Unfortunately I do not have any advice for you on what you should do for your children, but can I just applaud you on being so determined to get the best for your children? Honestly, my heart just aches when I read of the struggles you and your family go through. Well done on not giving up and trying to find what works best for your boys. May Allah give you the right guidance as well as the strength you need to face your battles. DR1958, I bow down to you. You are such an inspiration and I enjoy your wise posts immensely.

Hi av1998, I am sure everyone who reads your post will be filled with awe and admiration of your strength and determination to do the best for both of your children. I have an OT background and although neither children nor autism are my specialisms, I just want to tell you about a book I'm currently reading, called "The Reason I Jump". It was written by an Autistic Japanese boy called Naoki Higashida at age 13 and has been translated into English this year by David Mitchell, who is an author and also the parent of an autistic child. It's written in quite an easy Q&A format and an incredible insight into the mind of an Autistic child. A very powerful book and if you do have the chance to read it, I hope it might help in some way. Wishing you all the best.

Dear AV Do you get some support from groups like SFS? You have my utmost respect. Caring from one child with autism must be so challenging but to have to try to meet the needs of two very different boys must be impossible. His challenging behaviours are obviously an attempt to communicate something but what??? Does he have any functional means of communication (signs or pictures)? I think 7 years is very young to give up on an educational programme but maybe the programme needs a change of focus. Are they using the right motivators to get him to participate in the programme? I always think of that quote that says something like " if a child appears unable to learn we should assume that we have not, as yet, found the right way to teach them". Hoping you find another way to reach Ishaan. Av, Plum has said everything I was going to say. Re the therapies - my son is 22 and has never had any apart from a listening therapy about 3 years ago and very intensive professional sensory therapy about 3 years ago, the therapists actually moved in with us, but even those were just done when his mental health went wrong for other reasons and we were doing a process of elimination in order to get the right diagnosis for the additional mental health problems he'd developed. So what did my son have? Well a life at home being a big baby till he was ready to be a big toddler, then a big boy when he was actually a hairy teenager. He was still doing a very basic nursery style education when he was about 9 and beyond. He really was just taught how to live a day, how to clean teeth, go to the loo, shower, make a drink, that kind of thing. My son didn't even know what a person did when they woke up, he would wake up in the morning and just stand in his room so we had to teach him what a day was, we had to teach him how to be a person living a day. I had online friends who's children couldn't even do the most basic of personal care, who weren't toilet trained, but they all went to school and did things that I felt were totally irrelevant if they'd had to have there pants put on for them that day, then rushed through being dressed by mum because the school bus would be there at a certain time. Its just seemed to me that by sending my son to school a huge chunk of his development would be missed because that's what development is - a pile of bricks that become a wall when laid on top of each other properly. As it is my son can read fluently at a high level, better than one of his siblings who's dyslexic and in a professional job as it happens :D, he can work with numbers, add, subtract, multiply, divide, tell the time, find his way round google like a bloodhound, he can also cook and makes his lunch every day, make his bed, tidy his room, his bathroom, clean his 'office', do his shopping when he's taken to the supermarket with his wee list, write his list for the shops and that's quite a big thing to do because he has to see what he has already then judge if its enough to the next trip, he does his laundry, sometimes even his ironing :D, folds his socks and pants, tells us where he wants to go, excercises 3 times a week with a personal trainer at home but he will soon start going out to do that, he washes his dishes and its also his job to check before bed if there's anything needing washed in the upstairs pantry - maybe a cup Ive used and deliberately left for him to wash. He makes sure the water coolers in the house always have water - he carries those huge bottles around better than any of us can. He helps unload the cars when there's things to be unloaded - he's our muscle truth be told :) He bathes the dogs and keeps them in clean water. and last but not least - he has interests, steam trains and old forms of transport, but mostly steam trains. He loves to travel and currently wants to go on the Orient Express in Europe, then he wants to travel across Russia to Japan I think it is on a train, it wont happen because we have sadly we have had to decide his travelling days are over due of his mental health. There's more but the point Im really trying to make is that for our very low functioning children, even the very smart ones like my son :), ( low functioning and being smart can and do go hand in hand) , this is their life and it can be achieved without 'therapies' as we know them because believe it or not - anything you do with your child is a therapy. Love and patience are a therapy, but for me 'therapy' was learning about autism inside out and applying it to me son by looking at him and thinking - what does that mean, what is it saying, which of the triad of impairments could it apply to, how can it be dealt with, what is it doing to other parts of him, what knock on effect is it having on him? Even to this day I have flow chart of the triad that runs through my head when Im trying to work my son out because something new is occurring, and if you knew what goes on in my head when Im running through the flowchart you'd think I was bonkers - its like a superhighway of fireworks, I actually see fireworks and neon arrows pointing to a different train of thought. :D :D :D And of course there is his scheduling, even tho its not set in stone because the fact there is scheduling means my son now feels safe enough in a day to sometimes change his schedule just because he wants to - he is entitled to that freedom but he needed the schedules to feel safe enough to do it. A day in the world can be really bewildering for our people. For me therapies were just common sense parenting in a lot of instances and I think the average parent would be surprised at how many therapies they carry out in a day without actually knowing they are doing it. Would you still like me to come and see you? What is a good day for you, a weekday or a weekend? edited by DesertRose1958 on 20/10/2013 <em>edited by DesertRose1958 on 20/10/2013</em>

Dear AV Do you get some support from groups like SFS? You have my utmost respect. Caring from one child with autism must be so challenging but to have to try to meet the needs of two very different boys must be impossible. His challenging behaviours are obviously an attempt to communicate something but what??? Does he have any functional means of communication (signs or pictures)? I think 7 years is very young to give up on an educational programme but maybe the programme needs a change of focus. Are they using the right motivators to get him to participate in the programme? I always think of that quote that says something like " if a child appears unable to learn we should assume that we have not, as yet, found the right way to teach them". Hoping you find another way to reach Ishaan. Av, Plum has said everything I was going to say. Re the therapies - my son is 22 and has never had any apart from a listening therapy about 3 years ago and sensory therapy about 3 years ago also and even those were just done when his mental health went wrong for other reasons. What did my son have? Well a life at home being a big baby till he was ready to be a big toddler, then a big boy when he was actually a hairy teenager. He was still doing a very basic nursery style education when he was about 9 and beyond. He really was just taught how to live a day, how to clean teeth, go to the loo, shower, make a drink, that kind of thing. My son didn't even know what a person did when they woke up, he would wake up in the morning and just stand in his room so we had to teach him what a day was, we had to teach him how to be a person living a day. I had online friends who's children couldn't even do the most basic of personal care, who weren't toilet trained, but they all went to school and did things that I felt were totally irrelevant if they'd had to have there pants put on for them that day, then rushed through being dressed by mum because the school bus would be there at a certain time. Its just seemed to me that by sending my son to school a huge chunk of his development would be missed because that's what development is - a pile of bricks that become a wall when laid on top of each other properly. As it is my son can read, better than one of his siblings who's dyslexic and in a professional job as it happens :D, he can work with numbers, add, subtract, multiply, divide, tell the time, find his way round google like a bloodhound, he can also cook and makes his lunch every day, make his bed, tidy his room, his bathroom, clean his 'office', do his shopping when he's taken to the supermarket with his wee list, write his list for the shops and that's quite a big thing to do because he has to see what he has already then judge if its enough to the next trip, he does his laundry, sometimes even his ironing :D, folds his socks and pants, tells us where he wants to go, excercises 3 times a week with a personal trainer at home but he will soon start going out to do that, he washes his dishes and its also his job to check before bed if there's anything needing washed in the upstairs pantry - maybe a cup Ive used and deliberately left for him to wash. He makes sure the water coolers in the house always have water - he carries those huge bottles around better than any of us can. He helps unload the cars when there's things to be unloaded - he's our muscle truth be told :) He bathes the dogs and keeps them in clean water. There's more but the point Im really trying to make is that for our very low functioning children, even the very smart ones like my son :), this is their life and it can be achieved without 'therapies'. Would you still like me to come and see you? What is a good day for you, a weekday or a weekend?

Hello AV, your child is in my prayers. I believe in miracles. I have heard therapeutic listening helps with the condition. http://www.pulselisteningcenter.com/ is a good place for it. I hope this helps.

Hello AV I can understand your feeling...my son is 14 years old and has autism... you mentioned your son Ishaan is not interested in studying.... did you try online teaching... basic reading and math....if you want website for that...i will be happy to share with you. my son now goes to Oasis School this was previously know as universal school of academy. regards

Dear AV Do you get some support from groups like SFS? You have my utmost respect. Caring from one child with autism must be so challenging but to have to try to meet the needs of two very different boys must be impossible. His challenging behaviours are obviously an attempt to communicate something but what??? Does he have any functional means of communication (signs or pictures)? I think 7 years is very young to give up on an educational programme but maybe the programme needs a change of focus. Are they using the right motivators to get him to participate in the programme? I always think of that quote that says something like " if a child appears unable to learn we should assume that we have not, as yet, found the right way to teach them". Hoping you find another way to reach Ishaan.

H Av, I don't have any advice but just wanted to say that your post touched my heart. I hope you find the right advice and support to help your son. You are doing a terrific job with your boys x x