new dx and some questions: Monologues, IEP, Tantrums

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Hi everyone. I'm copying this from the general autism forum so I can specifically get the parents' perspective:

I posted here a while ago with the concern that my son (7) might have Asperger's and last week we received a diagnosis from a developmental pediatrician. I would really like some opinions from you guys who have been there...

1. The constant talking. My son doesn't have any idea that I'm not enthralled with his repeated descriptions of... whatever, but it seems rude to cut him off. On the other hand, I really do want him to be able to function as well as is possible, and of course, to be happy--which I think means he needs to learn to stop talking so much. And then again, when he's at home I want him to be comfortable to be himself, and I am usually capable of zoning it out. Thoughts?

2. I haven't told him. I think it would not be traumatizing to him or anything, but he does tend to latch on to things and I fear it would be his new excuse for not doing things that make him nervous. Schoolwork in particular, since we homeschool at present. On the other hand, I have told other adults who are in charge of him throughout the week for Sunday School or Cub Scouts for example, as well as immediate family and a friend of mine who I consider a great source of support. It does feel somehow wrong for all these people to know this fact about him that he does not know himself. But he's only 7. You can see how these thoughts circle in my brain all day every day.

3. We have our first IEP meeting coming up next week and I would like to know what you guys consider your best and most necessary accommodations, resources, and adaptations at school. I think we will be trying just a few hours a day starting in the fall. He very much wants to go to school now, so it will be an easy start, but mostly our problems are with not wanting to do work unless it is to his liking. He is also very sensitive to being made to do things he already knows how to do (or THINKS he already knows how to do).

4. I need ideas for how to deal with violent meltdowns. He's getting pretty strong and I Hate holding him down, but I can't have him following me around the house shouting and hitting things, especially not with his 2 younger sibs watching and learning. Would ABA type therapy help with such things? He has no idea when he's getting worked up and I can see he feels out of control at that point, but he does need to learn what's acceptable so he doesn't end up going postal on someone someday, right?

I have never felt so clueless before. It turns out everything I used to do that I thought was good parenting was the exact wrong thing for him. I also feel a lot of pressure to ACT right now since he's 7 and it seems that early intervention is key.

I know that's a lot, but feel free to just choose one or two...
Thanks,
Amanda

I posted in the General thread. I hope it helps...

Do lots of research. I found the more I "understood" my son, the better life got. This is not a "behavior issue" this is a neurological condition. While he will learn better social skills and how to be a responsible person in time, he will need lots of help, support, consistancy and love to do so.

Yes, AS children can have behaivor issues, and they need to be delt with, but with everyone, ask yourself "is this behavior only? How is the As playing into this?"

Generally, AS children have a strong sense of justice, and of right and wrong. They like to follow rules, (although not always societies rules ) You can use this to your advantage.

Hello and welcome to the exciting rollercoaster of Asperger's! We also have a 7 year old son who was diagnosed about a few months ago (although we had known there was something different about him for a while)

Here is what I would suggest:

Read as much as possible! Go to your local library and borrow anything/everything with 'Asperger's or ASD in the title.

To find out more about what is it you could try Tony Attwood's latest book. Can't think of the title. His website has some good resources. http://www.tonyattwood.com.au/index.htm

We found we were being told by professionals what we should do, but had now idea of 'how' to do it. So I bought a couple of books that were quite expensive but worth every penny! I refer to them everyday. They are:
- 'Navigating the Social World - A Curriculum for Individuals with Asperger's SYndrome, High Functioning Autism and Related Disorders' by Jeanette McAfee.
- 'Asperger's - What Does It Mean To Me? by Catherine Faherty

We use social stories and comic strips a lot. To find out more, a good website is http://www.thegraycenter.org/socialstoryquarterly.cfm

Re: The constant talking.
Your son will need to learn social skills including conversational skills. This will take time. The books I referred to above have activities to improve conversational skills

Re: Revealing his diagnosis to him

We told our son about his diagnosis a few weeks ago. The psychologist had told us when and how to tell him. We told him because he had been so depressed - 'why am I different', 'I'm stupid' and 'I'm a bad person'.

We told him in the following way. We said: everybody is different. People are good at some things, and struggle with other things. We then went through every member of the family - what they're good at, and what they struggle at. We left him last.

We wrote a long list of what he's good at, then a short list of what he struggles with. We said, 'when people struggle with the following ....' it is called 'Asperger Syndrome'.

He was upset and cried for a little bit. We bought him a book called 'Different like me: My book of autism heroes' which outlined people like Albert Einstein, Hans Christain Anderson and Isaac Newton who had Asperger's. He loves this book.

We also got him started on WP. There are 2 thread in the 'Getting to know you' forum called 'Some words of support for my 7 year old aspie would be good' and 'Hi. I"m 7. KBABZ is my friend'. We got a fantastic response. My son's nickname is UbbyUbbyUbby. His 8 year old brother gets on a lot. His nickname is AussieBoy.

Only you will know when he's ready. But at some stage he's going to realise he's different and it will destroy his self esteem. If you read a lot of posts on this website, people with Asperger's say they wished they'd known at a young age that they had it. Or if there parents knew and hid it from them they were very angry.

Re: First IEP meeting

We have our first IEP meeting tomorrow. I got lots of great advice from WrongPlanet people. EarthCalling was very helpful.

We have decided we want them to focus on managing his anxiety, increasing his social skills, and increasing his motivation by using his special interest (dinosaurs) in the curriculum. Also he is extremely bright and bored, bored, bored with the school work, so we want to challenge him a little more (well, he wants to be challenged more - he loves doing his older brother's homework, who is 2 grades ahead of him).

Do as much research as possible before the IEP. Remember, as the mother you will be driving everything. Be prepared to do battle for your child!

I made a timetable for Daniel for school. It has laminated bits that can be pulled on and off with velcro dots. It outlines what he's doing eg maths, sport, art and craft. If there are any last minute changes, the teacher makes changes to his timetable.

He has a cue card for when he needs time out.

Re: I need ideas for how to deal with violent meltdowns.

Prevention is better than dealing with a meltdown. You need to work out what's causing the meltdowns and try to prevent them. Dealing with his anxieties will help.

On Tony Attwood's website it has a good handout on dealing with meltdowns. It's in the resources section. http://www.tonyattwood.com.au/index.htm

It's amazing how quickly you'll learn. The pscyhologist told us you have to parent these kids differently and a lot of rules go out the window. DOn't worry or feel guilty, you were doing the best you knew.

You are obviously a very caring mother and that makes all the difference to your sonl

Early intervention is the key, it's fantastic that he got diagnosed so young.

Feel free to PM me anytime.

Regards
Smelena

welcome to WP !
1. talking~ it takes a long time to get the talking under control....my hubby who's aspie still has moments when he doesn't realize that he is perseverating on a topic & talking non-stop.....working with a professional can help you decipher when to interrupt & how to interrupt.
2. telling him~ i don't think there's anything wrong with telling his support providers about the aspergers. far better for them to know about his difficulties, than to assume that he's just a spoiled brat....as far as telling him goes~you'll have to judge how much you think he can handle. it's generally better to focus on all of the positives rather than the negatives. there are alot of books out there~some of them more concrete than others. again, alot depends on his functional level. some of the kids books that we read were: A porcupine named Fluffy, and Oliver Onion...both of these books are about characters who are different, and how they try to fit in to the world in which they live. the moral of each story is that being different is ok.
3. IEP~ i'd start with making a list of the specific issues which your son has. i could tell you a 1000 accomodations the school *could* make for your son, but the reality is~without knowing what exactly the issues are, you could be setting him up for disaster. some kids need a whole lot more supports than others..............another book/website that no one's listed yet is: Wrightslaw
4. tantrums~ again, like someone above me posted...do your research. learn as much as you can. one of the hardest things for me was learning to switch from the attitude of : "he's just trying to get away with something" to " this is how aspergers effects him" was a difficult one.....it is sometimes difficult to decipher where the behavior comes from.we found many behaviors became diminished once we understood what upset son, and then worked to make those scenarios better ( ie; loud, crowded places upset our son greatly...if we have to go to a place that is loud and crowded, we either don't bring him or we tell him exactly what to expect & talk about what he can do to comfort himself, and what we can do to comfort him)
it's not an easy journey. the folks here are wonderful, and have offered tons of great advice & empathy...good luck!

Welcome to WP!

My son who is 8 at present isn't fully dx yet. But, after everything I have recently, if this dr says no he IS getting a 2nd opinon. He too, is homeschooled. I have used a wonderful curiculm that works well with his learning style. Fast paced, and don't spend to much time on a topic for a long time. He loves to have the learning coming at him fast and keep it moving. We have had a hard time getting through school work. Only because he has decided that it is useless. He told him that until he finishes high school that he has to do it. Not because we are the parents but the law says he has to complete high school. He finally does it, some days take longer than others.

I have found a book that I skimmed through over the weekend but have since started reading and highlighting things. I have found this book an absolut God send. It is titled: The Complete Guide to Asperger's Syndrome by Tony Attwood.
This book has helped me understand that so many things that have annoyed me for years are actually atribuated to AS. I have found explanations as to why he does certain things. Thus, being able to explain things better. Today was an awesome day. We only had 2 near meltdowns, and got ALL school work done in under 3 hours.

But, the more information that you can read the more you will understand your son better and be able to help him cope better with everyday life.

Hope that helps.