Well, on Saturday, I finally told my son he has autism. He has never asked any questions that gave me a teachable moment, so I made a book for him. It was very successful. He took the initiative to read it 3 more times during the course of the day, and it was the first thing he grabbed when he woke up in the morning.
We had Grandpa babysit his little brother, so we could read the book alone with him Saturday morning. We told him it was about him, a true story, and he talked about being a hero both before and after we read the book, even though the word hero isn't mentioned in the book. The book did contain a lot of positive things -- his strengths, praise for always trying his best, fun photos of himself, anecdotes he likes to hear, etc. He was practically on a hero-high when we finished the book!
The book also contained some negatives. He prefers to skip past the page about not being able to decide for himself all the time -- he still doesn't accept in his heart that he can't decide all the time, and it was unpleasant to hear about times that he has gotten mad at his assistant and his little brother for not letting him decide. If I were to do anything different, I would have told him briefly that he has autism and then said let's read more about it in the book. Letting the book reveal it felt a little awkward. I'll put the book text on a separate post under this topic. P.S. I don't have any proof that the man behind Pokemon is autistic (aspergers?) but I've read it on the Internet and I used it to show my son that people with autism can accomplish great things, too. After all, Pokemon means something to him, but Temple Grandin does not (yet). Title page: "My very own book about autism" Page 1: Text for the adult to read out loud: You have lots something in common with the man who created Pokemon. You’re both smart. You both have great imaginations. And you both have a special DNA-code called autism. People with autism have a special way of thinking. This special thinking makes you extra good at some things, but sometimes it gives you extra stress. Text for my son to read himself (translated from Norwegian): I have a lot in common with the man who created Pokemon. We're both smart, we have good imaginations, and we have autism. That means that we think differently and have a little extra stress. Page 2: Mamma, Pappa, and your teachers know about autism. We work as a team to help you feel good, learn, and do all the things that kids like to do. Now that you’re old enough to read and ride a bike, you’re also old enough to start learning what it means to have autism. That way you can be on our team and help us figure out what you need to feel good, learn, and do all the things that kids like to do. I'm a big boy. I can learn about autism. I can talk to the grown-ups about what I need to learn and feel good. Page 3: You’re going to learn some things that people with autism have in common, but it’s important to remember that each person is different. In the whole wide world, there’s never been anyone quite like you. You’re our very own special edition, more precious than gold. Everyone's different, whether they have autism or not. No one in the world is quite like me. I'm worth more than gold! Page 4: People with autism are often extra good at some things, like computers. You’re good at computers, aren’t you? You enjoy exploring websites, mastering games, and sharing them with your friends. Many people with autism are good at computers. I'm also good at that. It's fun to play alone or with others. Page 5: People with autism can often see in their head how things fit together. Remember when we were building your Lego castle? Mom was struggling to make a piece fit, but you knew that it was wrong without even looking at the instructions. Some people with autism like to figure out how things fit together. I'm good at that. Page 6: People with autism pay attention to details. Your drawings are full of fascinating details! You have a style all your own. No one in the world draws quite like you. People with autism are good with details. My drawings have lots of exciting details. I have my own style. Page 7: People with autism also have good memories. They love to learn more and more about their interests, and can stay focused a long time. That makes them experts! You’re an expert on Bionicles. People with autism are often experts at things. I'm a Bionicle expert. That's a cool hobby. Page 8: People with autism like to make their own decisions. You’re proud of your decisions, like when you choose healthy food like carrots, nuts, and yogurt. And remember the day when you decided to hold [little brother] for the first time? That was such a good idea! Just look at the proud look on your face! I like to decide myself. I'm proud when I make good choices. Page 9: But sometimes it’s not your turn to decide. This makes you stressed. Like when you get mad at [assistant's name] for trying to help you follow the teacher’s idea for art projects at school. Or when you scream at [little brother's name] because he doesn’t want to follow your idea for playing together. Sometimes you get so stressed and frustrated that you even have a meltdown. That’s no fun. Autism means that you have to work a little harder than the other kids at letting other people decide sometimes. The important thing is that you always do your best. Sometimes it's not my turn to decide. That can be hard for me since I have autism. I try my best to cooperate. Page 10: People with autism get stressed when there’s a lot going on around them. So do you. You notice noises more, and it bothers you. You notice more details with your eyes, which makes you feel overwhelmed. Sometimes the smells are so strong that you feel like barfing. We grown-ups will always help you in challenging situations, so you can have interesting and fun experiences without getting too stressed. I get stressed when too much is going on around me. With a little help I can join in on the fun. Page 11: Kids with autism have heads full of ideas, sights, sounds, smells and other sensations. Sometimes it feels like there’s no room left for words. When you were little, this made it hard for you to catch what people were saying and answer their questions. Remember the time when you escaped from the fence and lost your boot on the neighbor’s porch? When you finally noticed me yelling “[Name], where are you?,” you were too overwhelmed to know what to say. Luckily a nice man noticed your footprints in the snow, and helped me find you. You’re big now, but it’s still sometimes hard for you to catch what people say if they’re not talking to you directly. And it’s still sometimes hard to talk when you’re feeling overwhelmed. But we know you always try your best, and that makes us proud. Sometimes it feels like my head is full. I don't notice what people say. I don't know what to say to them. That's because of autism. Page 12: You once said something very wise. You said that people don’t have computer screens on their heads, so you can’t see what thoughts they have inside. You’re absolutely right. It’s hard to guess what people are thinking! People with autism have an extra hard time with that, but they can figure out special tricks to help them. You already figured out the trick of looking at people’s faces. You spy through your hat so you can see if the girls look like they might be interested in playing chase. People-watching is good, and you don’t even need a hat to do it! Autism makes it hard to guess what people think but I can learn some good tips.
Page 13:
Now you know a lot about autism. You know that it makes some things easier for you – like computer skills and details, becoming an expert and understanding how things fit together.
You also know that it makes some things harder for you – like letting other people decide, talking to them, and guessing what they think. These things are extra hard when there are a lot of other things going on around you.
Now I know a lot about autism.
Autism makes some things easier for me,
and some things harder for me.
Page 14:
A man called Satoshi Tajiri learned to handle the challenges of autism, so he could use his strengths and talents to come up with Pokemon.
You can learn to deal with those challenges, too. And who knows what great things you’ll accomplish!
Autism is a challenge, but the man who created
Pokemon handled that challenge and I can too!
Who knows how much I can accomplish!
Back cover:
This book was written by Mom in May 2007,
because we have so much to learn from each other.
I got tear-eyed reading it to -- EXCELLENT job!
your son is so lucky to have a mother like you...
**any autistic female's character I can refer too for a little girl??
Thanks for all the compliments. By all means, copy the text and use it to make your own book, if any of you want to do that.
Great Job.. Wonderful.. i love it..
I just thought I'd let you know that the strengths and weaknesses in my book were taken from this list:
<quote>
Autistic Strengths reviewed for the workplace:
Autistic Weaknesses reviewed for the workplace
<unquote>
Source: http://home.earthlink.net/~mellowtigger/conf/SquarePegs-2003 1002.html
Norway mom - GREAT job Good job.That was wonderful!
I actually got teary eyed reading it. I have been an emotional wreck theis whole weekend, lots going on, and for some reason this just got to me also. Great way to do it. I'm glad to hear it worked out for you.Wow, great job i wish my parents could have presented my condition to me like that, way to give your child a connection to someone he can relate to, as far as the creator of the card game your kid enjoys.
When my parents came out and told me all they did was basicly give me documents from the time telling the phycology about the syndrome. I was young and it was long and difficult to read. WHen I got done reading it i felt like it was a horrible thing to have ya know, that id always be, well i guess slow, not have friends, and have a bleak.
Did your child think he may have been different somehow and ask b4 u told him or did u just come out and say it. When my parents told me i think i was like 10 or so, i never thought i was too different at the time from the other kids i guess, i knew i was in special ed but figured i just needed the help as far as behaving and learning, then they told me i was high function autistic and then i felt real different, all well ya live and learn.
Kids these days have it better then i did growing up in the late 80's and 90's the net was not around and parents did not have the kind of networks they do now as well as the information they have access to. I think you let your kid understand his problems much better then mine did i had a hard time dealing with that one not that they were not good parents they were great, loving and supportive, but everyone is different i suppose!Nicely done Norway Mom!
Ouch -- woodsman, some of the literature is sooooo DEHUMANIZING.
I would think that would be very difficult.
I felt that that was the hardest part of coming to terms with my dd's dx -- trying to see her, fit into what the literature was saying. Now of course I am recognizing how much of it was simply written by theory people ...
NorwayMom,
Your book to your son is INCREDIBLE. I love it. I especially like how it is so positive and build's self-esteem. The "speaking" parts for your son was so clever! It helps reinforce the meaning. Thank you so much for sharing it. It is truely special!
You rock! That is absolutely fabulous and I agree your son is so lucky to have you for a mother.
Have you thought of writing and publishing a series of books about children with autism? Books like this could benefit ALL KIDS. Think about the number of times someone posts here venting about an ignorant comment made by a stranger. Our NT kids are growing up in a world where 1 in 150 kids has autism. Not only do we have to teach our ASD kids about autism, but we need our NT kids to understand as well since autism is going to be a part of their world forever too. We can't afford this generation of NT kids to be as ignorant as previous generations!!! OK, I'll get off my soapbox now and back to work...
I told my son about a week ago and it went better than I expected. He hasn't mentioned anything about it since. I love the idea of a book! He loves to read and how neat to read about yourself! Don't worry about the reactions to the negative stuff. Afterall, no one likes to hear bad things about themselves (autistic or not). I think you did a great job! Now just be ready for the questions. I have a feeling that they won't be the ones we are planning for or expecting. Good luck!WONDERFUL...
I have tears in my eyes...
Thanks again for all the compliments everyone. Woodsman25, it's sad to think that you and other autistic children (now and in the past) didn't get appropriate information about the disability. One reason I wrote my son's book was because the books I had seen were not appropriate for my son. Picture books about other children told about problems he didn't have, and more general books didn't have enough visuals for him. My son has barely started to express a feeling of difference, once commenting "I need more time to learn than the other kids." But he has never questioned that he has his own personal office at school (complete with computer and special ed teacher) and no one else does. He has never questioned that he has an assistant and no one else does. wow! Def something to copy for later on (when I will have to tell my daughter and when she starts to understand). Thanks so much for sharing. Thank you for that--I was just thinking about sharing it with my son who is 15--do you think the book would be appropiate still? ANy other books that people have used---I like the fact that you personalized it. I would like to do the same thing especially since POkeman cards used to be his thing. Thank you. I also copied it to get ideas for my son's book. JOan Here are some web resources for teaching kids about autism. Some resources are appropriate for autistic kids, and others are possibly more appropriate for their friends and families. http://www.angelfire.com/pa5/as/talkingtokids.html - with 10 links on this subject http://www.njcosac.org/PDF/Fact%20Sheet%20for%20Kids.pdf - 1 page explanation http://www.bridges4kids.org/pdf/Growing_Up_Booklet.pdf - ASA's booklet on friends with autism http://www.bridges4kids.org/MyBrotherHasAutism.pdf - "My brother has autism" Here are two lists of autism books for kids. Some may be available at your local library: http://www.bellaonline.com/subjects/9393.asp http://www.autism-resources.com/books-children.html And here are some videos that older children/teenagers might appreciate: http://www.mtv.com/thinkmtv/features/true_life/autism/ - features 3 different teens with autism. Check out Elijah's stand-up act! http://www.youtube.com/watch?v=POIJG3qmV9Q - video by a teenager with autism. http://www.youtube.com/watch?v=Zu4z-ZKZZo4 - video by an 11 year old with autism Good luck to everyone in the ongoing process of educating our children about autism. Norway Mom, You could make a customize program on a CD or eBook and sell it for lots
just put all the strengths and weaknesses in a positive light that you do so well leave blanks like you did for names and details parents pick traits/ pages, fill them out add pics (have a bunch of pics with it for those of us who don't have skill to put our own) print it out get rich
Thanks for the compliment. I hadn't thought of making it as a CD before. That's a good idea. I had tears in my eyes and am also applauding you.
Concernedpa. My eyes were filled with tears while reading it too. What a wonderful thing you did for your son. I would never have thought of that. The way you wrote about autism and your child was positive and I love that. It sounds like you made your son feel proud of himself. Great job! Thanks for sharing that with everyone. Elsia Your son is so lucky to have you. Found out a little more on the man who created Pokemon. "Satoshi Tajiri has allegedly been diagnosed with Asperger’s syndrome.[1][2] He has been described by Nintendo officials as exceedingly creative but "reclusive" and "eccentric."[3] " Source: http://en.wikipedia.org/wiki/Satoshi_Tajiri Thanks again for all the compliments everyone. Woodsman25, it's sad to think that you and other autistic children (now and in the past) didn't get appropriate information about the disability. One reason I wrote my son's book was because the books I had seen were not appropriate for my son. Picture books about other children told about problems he didn't have, and more general books didn't have enough visuals for him. My son has barely started to express a feeling of difference, once commenting "I need more time to learn than the other kids." But he has never questioned that he has his own personal office at school (complete with computer and special ed teacher) and no one else does. He has never questioned that he has an assistant and no one else does. Thanks again for all the compliments. As a postscript I can add that now, like 9 months later, there have been zero negative consequences of telling him. I think it has helped him grow, and it's definitely a step towards self-determination, participating in decisions about his own life and education. Minny, you asked what made me think he was ready for it. Well, last February we attended a seminar and the subject came up. The expert said age 7-8 was the ideal age, since you want to give them some time to settle in with the diagnosis before the tweens and puberty starts and NO ONE wants to feel different in ANY WAY. He was also older and more attentive, so there was a greater risk that he'd overhear something, and I didn't want him to learn about his diagnosis that way. Good luck to anyone who's planning to take this step themselves.
you shared this with all of us. Your Son is blessed. You are a wonderful
mother.
This talk is going to happen sooner rather than later for us. Hyperlexia has
it's drawbacks--my son is asking about every book/paper/note found
around the house. I think he is ready for the basics. Your text is easily
adaptable to all developmental levels, and I THANK YOU!
Wow... this is an active topic writtin during the early summer!!!! I am just now going thru it like 9 mounths later.
At the time the information was I guess 'correct' but of course their was no meansion of a spectrum or PDD-NOS or AS at all that I could see. Just autism, HFA was appropriate at that time for me, but nowdays AS is more correct.
I never questioned why I was in special ed, I knew kids made fun of me cause I was seperate and never questioned why I sometimes went to normal PE class with my peers and sometimes went to normal classes for an hr or less on some days.
It just never clicked that I was different, I was totally oblivious and never even questioned it until I was 9 or 10, just prior to mom and dad telling me about my past DX that they knew I had for years. I was 10-11 and had a DX for over half a decade prior. For some it just does not click till later, and your son certainly may be like I was, oblivious to it. I suppose it can be a good thing, but that too will end and its good that he knows why he is seperate other then asking difficult questions and feeling 'less then' without knowing about the DX till later.i am proud of u what made u think he was ready for thisThat was wonderful! I've tried to talk to my eleven year old about his Asperger's and it just makes him mad. I loved the Pokemon thing, I'll have to let him know about that. My daughter and I are putting together a short story about what it's like to have a sibling with Asperger's. Way to go!
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