I'm not reading anymore books
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I'm not reading anymore books
| Tue, 11-15-2005 - 10:16pm |
Probably a stupid question but do you read a ton of books about autism? I just had to go out last week and buy a book shelf to put them all on(LOL). Some of them I just haven't had the time to get to yet and right now I'm debating with myself if I should ever read another one again. It's just so many of them are so negative or maybe it's just that I'm not ready to deal with reality yet. Sometimes I will read a book and think Jakes going to be okay. He'll go to college, get a job he loves and marry the girl of his dreams, settle down and live happily ever after right down the street from me(LOL).But then I'II read a book Like the one I'm into right now and it's so negative I feel so hopeless about Jakes future. I have weeks where I feel so positive and hopeful about Jake's future and then I have weeks where all I want to do is cry everytime I look at him. How do you keep yourself positive? I just want to keep myself as positive about all of this as I can without being unrealistic.
Teresa
Teresa

You grow into it. Eventually you get to realistic optomism. Does that make sense. And you realize that these kids surprise you constantly. It is just like any child, you have no idea how far they can go. They just need us to translate for them a bit longer and we need to learn how to translate teh world for them and how to meet thier needs so they can be the best they can be.
What constitutes "fine". Will they be "fine"? Will they be "ok"? Sure they will. They will be the best person they were meant to be. Sure it may be "different" than the other kids on the block, but that doesn't make it any less meaningful or worthwhile. They are also incredible individuals. There are frustrations, but those frustrations are caused by a NT world making NT demands without understanding neurologic differences.
Example, my son does amazingly well in a small SDC classroom with learning disabled children. He is thriving, learning, enjoying himself, loved and appreciated. Since he is doing well it is tempting to put him back in mainstream education which is horrible for him. Our NT oppinions think that it is only fine to be in a mainstream class. That kids who are academically able should be in a mainstream class but his version of "fine" is in that SDC. He doesn't care that he is in the "special class", as a matter of fact I don't even think he knows. But he is incredibly smart, happy and learning like a computer, lol.
I am reading a book right now you may want to read. It is called "Speed of Dark" by Elizabeth Moon. The main character is an autistic and though it is fiction has some good insight. Was a little heavy on the autism stuff for me, but now I am really starting to get into it.
Yeah, I read tons of autism books. I go through phases where I will read a bunch then leave it for a while. I try to keep up on the new info and books. Some are good. Some I start, then just leave because they just bug me. I really want to read "Elijah's Cup" too.
It is good to remember that these books are all different, and all kids are different. If you are reading about someones experience with autism, you are only reading about one experience with autism and thier experience won't be yours.
Renee
Dear Teresa,
The only problem with reading all these books is that THEY AREN'T ABOUT YOUR SON! Your son is unique and has a dx, but how he will respond to therapy and life, what his strengths and weaknesses are, how he will grow and change, he's not in there. No book can answer what will happen and there is no way of knowing in advance. Because Malcolm is part of a large community of ASD people here in NYC, some now grownup, I am here to tell you that anything is possible. On both sides of that question. I have met grownups who, despite serious intervention, are not independent and still need almost constant support. I have met individuals that, although very impaired when young, are successful, happy, married, raising children. And they are all great people!!!
After over 5 years (son now 8 years old now) of not knowing, I can say that many days I am very hopeful, certain he will be just fine and then every once in awhile I really worry and even despair. BUT our son is still making huge progress all the time. There are always more pressing concerns having to do with the here and now. I think your child was just diagnosed, yes? The more you get into therapies and the day-to-day of living and helping his progress, well, you just won't have as much time for these constant big ups and downs. Not that you won't have them, but they will play second fiddle to the doing and immediate concerns.
And, progress is very rewarding. My son has come so very far and I never ever forget that. Progress hard fought for is sweeter than anything else on earth!!! You will stop comparing him to NT children (waste of time, unneeded pain) and rejoice in your child's progress the way Jake's doing it, special to him and at his own rate. You get more involved in process than final (which you can't know) outcome. Anyways, in raising a child, there never actually is a final outcome.....
Support helps. Sharing stories with other mothers and fathers of ASD kids helps. These boards, my other friends, many with ASD friends of my son. My husband, getting away for private time with him helps big time. My own personal projects and interests helps. Researching new findings and treatments helps, constantly educating myself helps. Sometimes a good cry is a great idea. Keeping a strong healthy sense of humor very good. A nice bottle of wine, bueno. Paying to get my house cleaned, getting a massage, indulging in a night out with girlfriends.
And anyways, at the end of the day, the overwhelming love of and from my boy, sweeter than anything, keeps me chugging along, happier than words can express to have him here, the joy of my life!
yours,
Sara
ilovemalcolm
i know where you're coming from about the book thing. i think most of all us do tons of reading, especially in the beginning.
i agree with renee. you do get to a point of realistic optimism. i am at a point where i know it likely that matt will have some long term challenges. but i'm okay with that. i'm more concerned with helping him to find ways that he can use to function, and most importantly enjoy life.
reading can be helpful because it addresses questions and topics that you're not likely able to ask others around you. i read a ton early on. but as i felt more in control of the situation it has decreased. and actually, looking up stuff on the net is just as bad as reading too many books. it can be overhwhelming and nerve wrecking, so i stopped most of it.
i found temple grandin's emergency very helpful, especially for the sensory system. i also like the child with special needs by greenspan. child with starving brain by j. mccandless also very good. i guess i haven't cared much for the stories written by parents come to think of it.
You describe exactly how I feel!!!
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Tina,
Your head is not in the clouds. Recently my kids therapist made the comment that some day when Mike gets married. I thought she was nuts. She insists she is not. I defer to her because she also works with a large number of adults with ASD's.
I don't know for sure if Mike will get married, own a house, have children, etc. BUT one of my older brothers has never owned a house, my best friend in elementary school, who was the salutarian and has a degree, great job, is absolutely knock out beautiful, etc, has never gotten married and has no kids. You just never know, typical or not.
Our kids aren't typical, your right. This just means it takes a bit more effort, creativity and time to teach them the skills. They may also need some extra supports in life but that doesn't mean life is any less. For instance, I have terrible vision and have glasses/contacts. It is a support I need to live a functional life. If a person loses the use of thier legs they can still have just as fulfilling of a life, but it may be in a wheel chair.
I have some books for you to read but right now I have to take kids to school.
Renee
I'm with you.
The thing that really gets me is those Sylvan commercials. The two with the boys presenting their report cards to their moms. It gets me everytime and I feel like a complete idiot but I start crying when I see them because chances are Sam will never have a good report card.
And I know it's the least of the things that I need to worry about. And that plenty of people have had terrible report cards and have gone on to do great things in life (my brother for example.) It's just that everything is so hard for him and I really don't see how he is every going to be able to function on his own. I know alot of AS kids do great academically and he doesn't even have that to lean on....sigh. I feel bad for him.
I was one of those kids that got mostly As and some Bs without even trying and I took such pride in it. And my parents were always so happy and proud of me. Don't get me wrong......Sam does alot of things that we can be proud of and that he should be proud of himself (his first dentist visit was GREAT!)
Sigh.....the past week has been difficult. Mostly teeth issues.....the baby just got his first one and Sam lost his second one in a week and it seems to have thrown both of them off. And the baby has been waking up every 2 hours at night for the last 3 months.....I'm beat.
I'm just so tired of having to anticipate things that I can't possible anticipate or control. I feel like I need to be perfect in order to keep the kids together and I'm not allowed to have a bad day or Sam especially falls apart.
I need a vacation! I guess I'll have to settle for a Margarita and a night out to see Harry Potter......
Chrystee
Dear Chrystee,
(((((HUGS))))) Yup, this is hard. And lack of sleep turns regular life into a nightmare, dosn't it? It's hard to be there for a needy kid when your head and soul are spinning in anxiety and exhaustion.
Do I remember correctly that your son is in mainstream class without dx or support and/or IEP? This puts you at the very beginning of finding out exactly what his strengths and weaknesses are and then redesigning his education so that he CAN be successful and have good report cards. Good report cards are based on real learning, not flailing in a system designed for children who are not you with capabilities you don't have. And success is crucial for ALL children.
You cannot expect him to be able to get good report cards when the situation he is in is outside of what he is capable of developmentally and academically. It is an unrealistic as expecting a child in a wheelchair to run and play soccer. That is why our children need specialized education, supports, extra help in order to be able to learn in a way that is appropriate to their particular needs (hence the phrase "special needs").
Because here in NYC our school system is so overwhelmed and underfunded, we have our son in a private special needs ASD school (funded by the Board of Ed because they have no other appropriate options) where he is completely understood and educated appropriately on all fronts, sensory, academically, socially, etc. Our child is flourishing, esp. academically. There is certainly no reason for us to believe this would be true in a mianstream unsupported classroom. I know our setup is not an option for all people, but every child can flourish when their needs are being met. Many parents I know have finally chosen to homeschool their ASD children so they can GET an education. School makes no sense at all if the best they can do is MINIMAL damage!
Fighting for the right placement so your son can get good report cards sounds like a seriously appropriate goal to me, and there are many here on this board who have done this type of fight within their neighborhood school successfully. This can be done for him, not by somehow trying to "fix" him, but by changing the demands and supports. Also, Steph and the ladies at the IEP board here at iVillage can really help you with the nuts and boards of a successful school district redesign...
Anyways, Harry Potter and a margarita sounds great! I'd go for it. In fact, I think I will do that real soon.
yours,
Sara
ilovemalcolm