Looking for books or websites for parenting autistic child

Discussion in 'General Parenting' started by Hanging-On, Jul 28, 2010.

  1. Hanging-On

    Hanging-On New Member

    I'm pretty much over being in the so called "system". I have found that the "experts" given to us no nothing about children on the Autism Spectrum Disorders (ASD). They are "mental health" people, and frankly difficult child is not mentally I'll but PDF-not otherwise specified, ect.

    We have been in this system since fall of 2006, when difficult child freaked out after being put into a regular K classroom, and the school did not do the regular testing on him. He didn't understand what was going on in the classroom so he'd always walk out. So from that point on it's been testing, medications, Residential Treatment Center (RTC)'s, hospitals, BMS, therapy....on and on. Well I'm tired of living under a microscope. difficult child can't live up to my expectations, I can't live up to the providers expectations, and the providers don't live up to what they agree to and the level of skill set they agree to. So basically, nothing gets done. It's alot of talk about implementing things, but in the end they never do it.

    And for a long time I have know that we are no longer a family. We just "paticents" in a lying dysfunctional system. So, I removed us from the in-home provider system.

    So I'm taking my family back. difficult child has been on medications for years now, and I now feel we can try to step away. Anyway those people in the home everyday make the stress and tension in the house just being there.

    So I'm looking for good books on parenting a Autism Spectrum Disorders (ASD) child, not a baby like most resources. difficult child is 11 yrs old.

    I'm also looking for good parenting books, ideas, step by step how to do books etc.

    Also any websites or other forums specializing in those areas.


    Ps, typing this on my phone, so please excuse my typos.
  2. Marguerite

    Marguerite Active Member

    Hanging-On, you are beginning to realise that for your child, nobody has all the answers. On the one hand, I had bad and somewhat scary news for you - what you are looking for does not exist. There is no one manual or guide on how to parent children like ours.

    But now the good news - stop and think. YOU have all the knowledge of your child already. There has been a lot of testing etc. Even if you feel some of the reports were wrong or inaccurate, all have valid information you can use and all have some sort of snapshot of your child at a certain point in time (even if through a blurred, distorted lens). You are the expert, you have the knowledge, but you need to consolidate it and take control. YOU be the focus of it all, use what health professionals you need as tools, but you are the craftsman. You and the child himself. Never underestimate the determination of an autistic child, to "pretend to be normal", as difficult child 3 put it when he was your son's age.

    The child you thought you had never existed. The child you have now, needs your understanding but wants to become the child you want. Try to not make it too insurmountable a task.

    So what do you do? Where do you start?

    Start at the child. Keep a diary. If you already have been doing so, go through it and read back over all past entries. Allow other people to have input to the diary, it really can help. If you have emails to and from teachers, insert them into the diary chronologically also. As you do this, it will help set in your mind where the recurring problems are, as well as your child's strengths.

    Now look at the child. What are his strengths? Start there. Encourage him, support him, tell him he is the best in the world at this. Self-esteem is vital in order to make progress. Make it clear as far as he can understand, about his diagnosis.
    For example, at about age 8 we were finally able to tell difficult child 3 about his diagnosis of autism. We also told the whole class using the Sixth Sense program. I did this in conjunction with the Autism Association.

    How we told difficult child 3 -
    difficult child 3 is a computer nerd. He always has been. He began using a computer (Mac) as a baby. At school he learned how to adapt his skills to PCs. So we explained his autism thus:
    We are typing a document on the computer. A text file. We have put a central heading in, we have the author's name justified to the right and the rst of the text is double-spaced and justified across the page. Then we send it to the printer.
    But when we take that printed page and show it to someone, will they be able to tell if the document was done on a Mac or on a easy child? No. It is possible (easy) to do the same output on either kind of computer. BUT - the instructions to the computer, the programming language for each, that we need to produce this document is very different for a Mac than for a easy child.
    Some people have easy child brains and some people have Mac brains. All are equally capable, once we can identify the programming language and software that each type of brain needs.
    So the difference with autism, is a matter of helping the child find the way in which his brain learns best.
    [The beauty of this description is the child does not need to feel handicapped or inferior, he just is different, which is already obvious to all. He has to ry harder to find the right way for him, but he is allowed to keep trying in his own way because he just happens to have a brain that learns differently. It's OK.]

    Sixth Sense - it basically tells the class right at the beginning, "We have six senses. People talk about five senses but there are more. We will explore all six today and I want you to tell me if you think you have guessed what the sixth sense is."
    The first sense is sight. Students are asked what they think it is like to not be able to see. Would you need help? Would you help someone who couldn't see? How would you help? Do we need to learn how to see, or does it just happen automatically? The kids explore this, role-play it and then move to the next sense - hearing. Same questions.
    And so on, right through including touch, smell,taste (which is connected to smell). All the time little clues are being given - with out senses, we don't have to learn how to use them, it is automatic. If we lack that sense to any degree, we need help. It is nobody's fault if they lack that sense, it just IS. And there are often aids or alternatives you can use, such as a blind child being guided or using a cane; a deaf child using hearing aids or learning to lip-read.
    Finally the Sixth Sense. This is the social sense. The same questions are explored - what is is like to lack the social sense? When the social sense is working correctly, how does it help you? It helps you know how to talk to someone, it helps you understand how someone else is feeling by reading their body language and other subtle clues, it helps you know in return how to behave. How would you help someone who lacks the social sense? It is interesting to hear how kids respond to this. But the end result of this course for the class, is to understand that when the autistic child does or says something inappropriate, there is no need to take offence but instead calmly explain to them what they did wrong and how they could have done it better. There needs to be a prior agreement with the autistic child that this will happen, and is no need for offence or distress. Other kids also need to understand the anxiety - if you know that you lack social skills but still want to socialise (or need to interact even though you are afraid) then again, the child will be anxious. When other children understand this and have been primed, they can be very caring indeed.

    We still had problems with bullies despite this. The bullies had already worked out how to push difficult child 3's buttons, this program did not give bullies more ammunition. If anything, it made it more unacceptable socially for the bullying to happen.

    The next stage of the Sixth Sense program was me alone, answering questions specifically about difficult child 3. He was absent for this part, so the other kids would feel free to ask anything they wanted. The first question was, "Is difficult child 3 retarded?"
    The teacher was horrified and began to apologise to me while squashing the questioner, but I stopped him. "THat's a good question. We don't use the term 'retarded' these days, but in some areas difficult child 3 struggles but in others, he's very smart. You know he was reading probably before any of you were. We're not sure how old he was, but he was reading numbers and letters aloud when he was 1. He was reading whole words before he was 2. But you will remember, some of you, that when he started school at 5, he still couldn't talk properly."
    Someone said, "He sure can now!" and the teacher hushed them, but the ice had been broken. I had explained that difficult child 3 understood what he heard on TV if we had the subtitles on, because it seems his eyes are so very important for his communication. Then came a question (from the brightest boy in the class) that blew me away. "So do you think difficult child 3 can lipread?"
    I didn't know and had never thought about it. But what a brilliant question!

    These days our NSW education system has taken over Sixth Sense and does not mention autism nor does it identify the student, even if you ask them to. Which has totally devalued the course, the kids can't find any relevance in the course.

    When you begin to take control, your child feels more secure and slowly you gain the confidence to know you are doing a good job. It won't be perfect, but it will be a lot better. It also becomes easier to identify the problem areas.

    Things that have helped us -

    1) Keeping difficult child 3 calm, keeping him positive, supporting him and encouraging him.

    2) Not being an obstacle for difficult child 3 when he is being very determined and apparent;y stubborn. Don't engage in battles. Instead, lead as best you can.

    3) Avoid blame issues. Sometimes bad things just happen.

    4) Avoid punishment. Instead, focus on natural consequences and again, support and teach gently. Encourage.

    5) Share your child's interests as much as you can, even if it means you have to grit your teeth and play Mario Party endlessly. Use your involvement with him in his favourite things, as reward time for his good behaviour. Do this formally.

    6) Never believe the IQ tests that say your child is not bright. Instead, look at the sub-scores in the tests and use this information. The high score areas show what your child's true IQ probably should be. Use this knowledge to encourage him and raise your own (and his) expectations. Now look at the low score areas. They indicate the boundaries of his disability, areas where he needs help. For example, difficult child 1 scored badly in Coding. Further more detailed testing showed that his vision was not the best, and prescribing glasses greatly changed his Coding score.

    7) Think outside the square. Read, learn, listen to experts and if you get ideas, trust them and use them. For example, difficult child 3's language delay has been caught up, his vocabulary is now in the superior range. But the Speech Pathology assessment shows that the word retrieval is always going to be a problem. Mental processing when abstract language is needed, is a lot slower for him. Because he was older when language was learned, he has far fewer mental pathways between ideas in his head. We were given an exercise to do with him, where we say a word (say, apple) and he has to come up with as many words and ideas associated with that word as he can think of (apple tree, apple juice, apple peel, apple core, apple pie, worm in the apple). Simply kicking this around makes more brain pathways and speeds up word retrieval.
    Then we were in a store (one of those hobby/science toy stores you get in museum lobbies) and I saw a hand-held game called "20Q". It looked like fun and we bought it, then realised that this game was also forcing mental links between words. So we got difficult child 3 playing this a lot.

    Books to read -
    1) "Son Rise". Can't remember who wrote it. Some aspects of this book annoy me (very arty, waffly) but I think it is a really good book to help you understand just how much you can do for your child, on your own. I think you need this to give you courage.

    2) "The Explosive Child" by Ross Greene. It deals with problem behaviours for a range of reasons, but simply sets up some different ways of helping the child learn self-control. It's perhaps the best parenting manual I could ever recommend, for any children but especially for those who have "different brains" (Mac vs easy child)

    3) "The Curious Incident of the Dog in the Night-Time" by Mark Haddon. This is a novel, not a self-help book. But it is written as if form the point of view of a child with autism. Clearly the author does not have autism, because there are subtleties written in to the story, but it is brilliant. A useful book to share with family and friends who don't quite get it.

    4) Anything by Temple Grandin and Professor Tony Attwood. Encouraging, positive, informative. Also look up James Williams online. I Google "James Williams" and "autism" and read everything on his website.

    Once you have covered all this, there is more but you will be well informed enough to take it from there without my help.

    You can do this. So many of us have found our courage and in doing so, have found the joy in our autistic children. They in turn have found life and independence to varying degrees.

    Your child's capabilities are an unknown quantity. But if you have faith in him and teach him as much as he can take in, then you will be giving him the best chance possible, and undoubtedly exceeding all expectations previously expressed.

    I have a lot more for you, but this should help get you started.

  3. Hanging-On

    Hanging-On New Member

    Thank you Marg, that is a wonderful post. I really needed to hear all of that.