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Old 07-23-2006, 07:37 AM   #1
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EBoegel HB User
New to Autism

Good morning,
My daughter, Kate (3 yrs), was diagnosed this past week with Autism. Since I am completely new to this, I was hoping to get some specific information. Did you all get services through your school districts? (We live in Northern California if anyone has that in common with us.) What books did you read that were really helpful? And I'd also like to know your time constraints; is it helpful to be at home with your autistic child or did you stay at work/school? I was planning to go back to school this fall but am wondering if that is wise. And finally, any experiences or other info that might be helpful. I really appreciate it. We are still reeling a bit.
Thank you,
Elizabeth

 
Old 07-23-2006, 03:38 PM   #2
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mommaboyz HB User
Re: New to Autism

Hello and welcome here. Im sorry to here of your recent dx. At 3 yrs old you would be albo to get help from the school district. I would do a search on early intervention in your area and see what you come up with. There be be some classes in your area that deal with autism. The sooner you can get your daughter help the better off she will be honestly. Therapy has given my son a chance at life I believe. Without it he would be a different child. As far as books go Ive only rad a few of them the best one for me was Evidence of harm by David Kirby. If you go to the book store there or several good ones there. Good luck. and if you need to ask some more questions feel free. I think I answered them all.

 
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Old 07-23-2006, 08:24 PM   #3
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EBoegel HB User
Re: New to Autism

Thanks for the info.

And if you could also answer, what are your time constraints? How much time do you need to spend with your child? Do you have to be flexible with therapy times and such? I'm just trying to figure out if my plan to go back to school two days a week (with the kids at their grandparents house) is feasible. Please be honest: If you think I am nuts to even think about it, let me know.

The reason I'm so intent on going back to school is that three years ago our son (then 2) was diagnosed with leukemia. So here we are out of the woods with that, I finally am having a little time to myself, and I'm loathe to give that up. But at the same time, I want to give my daughter every advantage, and if it's to her advantage that I stay home, then I will.

Sorry. Long-winded.

Elizabeth

 
Old 07-23-2006, 08:42 PM   #4
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Liz Cook HB User
Re: New to Autism

hello and i am not sorry to hear about your recent diagonsis

now you know what direction to turn and autism is not an end of the world situation... just means you get to take the scenic route to life... my son is almost 5 and is severely autistic and may not get much better than where he is now but yes therapy is the best anwser although i would say that my son has a life already ugh! dont get me started on respecting neuro diversity!

anyhow... early intervention can mean the difference between high functioning and low functioning. the longer the wait the more "stuck" asd kids can get in their own personal routines. my son is severe as i said and he has 30+ hours a week of therapies so i do not work. and even if i did finding specialized day care for him would probably not make it worth it. you seem to be the go getter type who isnt going to take autism lying down. you seem to me that now that you have the diagnosis it is time to move and i think that is a great attitude and will get you much further than the whole whoa is me why has my child been struck down with this disorder... (which in all reality only means that your child is different and special in a way that scares neurotypicals so much that they try what they can to "cure" them so that auties think the same way as NT's so that NT's dont feel left out... am i ranting about neuro diversity again?) again... anyhow find a local offline support group. this is a key part to getting started once you have gotten in contact with early intervention services in your area. who diagnosed your daughter? the report that you SHOULD be getting should have some recommendations for types of treatments to persue and how many hours a week depending on Kate's severity. the offline support group is so important not just to have a real life shoulder to lean on when things get hard but in order to find all of those short cuts to red tape and all the good advice on what's going on in your area for decent services. you will get advice from people who have been there and have been through the process that pertains specifically to the region you are in.

feel free to reel and feel free to be overwhelmed because we all still do from time to time but keep up what you are doing now, which is keep on walking. dont let a diagnosis keep you down. obviously if she got that far you had to know that Kate needed more than what you knew how to give her, and that is exactly what got us parents all here. we saw the problem but couldnt no matter what we did fix it for our kids so we kept on pushing and we kept on walking and making sure that whatever was wrong found the fix it needed. well you have your first steps... now keep walking. you have the diagnosis get those services.

whoever diagnosed your daughter should be able to refer you to some things like early intervention services and should be able to give you a heads up about any local support groups. i found the one that my husband and i go in the local newspaper and i am sure that you could find info online. doing a search will bring up TONS of stuff on autism.

as far as what is a good book... i never touch the stuff i have some issues with things i have read or seen and one of the major issues that often times things dont apply. often times people have this idea about autism and they think oh your kid is just like rain man or oh, autism that means that they have no feelings... oh autism, your kid must tantrum all of the time... oh autism, your kid must hate to be touched or cuddle or laugh or whatever... but that not is always the case. my son got diagnosed late because he is happy and cuddles. imagine that, he cant talk... he cant make eye contact... he constantly twirls objects but he isnt autistic because he is happy. maybe my dh and i are just good parents to a child with autism. but the trouble with books i find is that you have to take everything with a grain a salt. make sure you try to look at it objectively and say yes this bit applies... skip that bit and maybe try just a dash of this and what the heck is that person thinking... etc take what you need from them but i would not recommend taking them as divine word.... you daughter will teach you much about what she needs. read the books, do the therapies, above all listen to her in whatever form she may communicate.

i hope i didnt come on to strongly but i feel strongly about autism. i think you will too. of the new parents i have seen come on this board you have been one of the more level ones... meaning even though inside you might feel crushed you are taking positive steps by reaching out not only for support for you but for your daughter more importantly. you are looking for what you can do to help her instead of bemoaning your situation. that's a very good thing. that mean Kate has a great chance of making the most of her life because you are supportive and ready to face things with her instead of worrying about what other may think. i think personally that it seems like Kate has one heck of good start already with treating her autism by having you treating it like its a work in progress instead of a final send off for her.
there may be times that will be tough in getting those services but i looks like you are on your way to being a good advocate for your daughter and thats a good thing. you can get more accomplished by being willing to ask and to talk than to hide and hope it blows over. infact it wont blow over unless its worked on

ugh... still ranting! but Best wishes for you and your daughter!

G-Luck!

 
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Old 07-23-2006, 08:52 PM   #5
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Liz Cook HB User
Re: New to Autism

Quote:
Originally Posted by EBoegel
Thanks for the info.

And if you could also answer, what are your time constraints? How much time do you need to spend with your child? Do you have to be flexible with therapy times and such? I'm just trying to figure out if my plan to go back to school two days a week (with the kids at their grandparents house) is feasible. Please be honest: If you think I am nuts to even think about it, let me know.


probably the most important thing will be to be consistant. therapy will depend her severity... some kids only do say 3 to 6 hours a week... some do upwards of 40. my son's ABA is scheduled for 6 hours a day 5 days a week and it is done in the home. the thing with in home therapy is that you wont be able to switch the home but it is feasible that if your daughter ends up with a schedule similar to that you could see if one of your parents might come to your home to stay with Kate while therapy is going on. isaac's therapy goes on in a room upstairs while i am down stairs with my 4 month old son but i have to stay in the house or atleast have someone here for liability reason more or less. there is a possibility it could work out even on a heavy schedule like my son's. if it ends up being a lighter one you may be able to schedule her therapies around your classes. the real problem will be nailing everything down before its time for your school to start. sometimes there are waiting lists for services so i would get after your dr. to get you started on which way to go.

you are right to want to keep your alone time and you are going to need it. autism is a full time job for a parent and if it can be worked out do it but as you already said her needs take presidence. if you are good at multitasking and organizing schedules you should be able to pull it off if you can get her services started. again... Good Luck

 
Old 07-23-2006, 08:58 PM   #6
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sross24 HB User
Re: New to Autism

Hi Elizabeth,

I am a mom of four children. They are ages 7,6,3, and 1. My six year old daughter and 1 year old son have both been diagnosed with autism spectrum disorders. My 7 year old is currently being evaluated by a neuropsychologist as well (no diagnosis yet though)! Anyway, in terms of time constraints, it is hard. My son receives 20 hours of therapy a week right now. It is summer time, so the other kids are home from school. The therapists come to our house, but it is difficult for my other kids to understand why my son gets so much attention from all these therapists. I work full-time from home. Although it is great working from home, it is challenging with the kids and their needs. If I did not have to work, I would not. I would love to stay home and dedicate all of my energies towards my children and my household. I'm having trouble juggling the four kids, work, household chores, etc. But with your daughter being 3 years old, I would think that most of her therapy would take place within the public school system. This may give you the time you need to go to school yourself. I hope this info. helps you.

-Steph

 
Old 07-24-2006, 06:52 PM   #7
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EBoegel HB User
Re: New to Autism

Thanks so much to all of you for this advice. I really appreciate it.
Elizabeth

 
Old 07-24-2006, 08:59 PM   #8
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mommaboyz HB User
Re: New to Autism

Quote:
Originally Posted by EBoegel
Thanks for the info.

And if you could also answer, what are your time constraints? How much time do you need to spend with your child? Do you have to be flexible with therapy times and such? I'm just trying to figure out if my plan to go back to school two days a week (with the kids at their grandparents house) is feasible. Please be honest: If you think I am nuts to even think about it, let me know.

The reason I'm so intent on going back to school is that three years ago our son (then 2) was diagnosed with leukemia. So here we are out of the woods with that, I finally am having a little time to myself, and I'm loathe to give that up. But at the same time, I want to give my daughter every advantage, and if it's to her advantage that I stay home, then I will.

Sorry. Long-winded.

Elizabeth
First off NO I dont think your nuts for wanting to go back to school. Its a great idea. Im glad your other child is ok now with the cancer. You have it comming from every angle dont you.
I have to say for me its hard to do anything becouse sometimes his scheduals change. But I have 4 kids too so its worse. I had to quit work becouse it was too hard. Now we are struggeling with money becouse I cant work due to therapys school ect.

 
Old 07-26-2006, 11:39 AM   #9
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zmom HB User
Re: New to Autism

About going back to school, I had planned to go back to work sooner, but I wasn't able to manage it. I did last year start teaching as an adjnuct prof. at a local school. I enjoy getting out of the house and doing something in my area, but it's not a huge time commitment, and except for the days I teach, I do the work from home. It was a big help to me to find something to keep me from nonstop worrying about my son.

Best wishes.

 
Old 07-26-2006, 04:08 PM   #10
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JLJBCLARK4 HB User
Re: New to Autism

I live in Southern California. Our school district offers Ot, IBI, and special day classes. You have to contact your sons school district and ask are these services offered. If so request and IEP and in this IEP stat the services that you want, and the reason your son would benefit from them. I hope that helps good luck.

 
Old 07-29-2006, 12:32 PM   #11
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lizharlan HB User
Re: New to Autism

Hi Elizabeth - from another Elizabeth (I go by Liz)

My daughter, Cara, just turned 3. We have only had a diagnosis for about six months now so I am pretty new to this also and still learning. We started out with early intervention from Help Me Grow and are transitioning into starting preschool in the public school in the fall - special education preschool. When we first got the diagnosis everyone kept telling us to get an IEP (Individualized Education Plan). We had the meeting to complete that just after summer got out. It is my impression that early intervention goes until age three and then the school system takes over. We are in Ohio and I do not know how much of this is national. I do know that the IEP is national and has laws behind it.

In terms of time constraints, it depends on the severity. Cara seems to be relatively mild and her therapy is not intense. In fact, to save our visits, we have gone to an every other week schedule of co-theray (speech and occupational in the same visit). I know that this would not work for a lot of children, but it seems to be working for Cara. She will continue her private therapy when the school year starts, but will also get speech, OT and PT at school. Since our financial resources are limited we will probably lean heavily on the school system for as much as they can give us.

I currently work part-time at home and have since the birth of our first daughter (who is 4 1/2). Personally I have all I can handle between the two girls and my part time job, but I also know my limits very well. The important thing is to know your limits. How soon do you have to make the decision on going back to school? If you don't have to make it immediately, it might be good to hold off for six months or so and see how things develop. I gave up a lot of volunteer work at my church when Cara was diagnosed and I have yet to pick any up again. However, I will say that I am a person that gets overwhelmed relatively easily and I do battle depression and anxiety disorder. Know yourself and your limits.

In terms of books, I found two that were very helpful.
1. The Out-of-Sync Child by Carol Stock Kranowitz, M.A. It gives a window into sensory disorders which affect autistic and non-autistic children. It is published by Penquin Books.
2. The Everything Parent's Guide to Children with Autism by Adelle Jameson Tilton. It was a good overview and introduction to autism. It also outlined some of the services to look for in general and such. It gives a nice general overview. It is published by Adams Media.

And I have found this discussion board to be a welcome relief from the isolation I often feel - some days even more so since I am a "stay-at-home" mom.

Best wishes to you as you begin this journey.

Liz H.

 
Old 07-29-2006, 12:43 PM   #12
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EBoegel HB User
Re: New to Autism

Hi Liz, that was very helpful, thank you. Sounds like we have children the same age (my son is 4-1/2). I'm waiting to hear from the school district (they've been out for the summer) and then I'm hoping we can get services through them. I've also struggled with depression, especially after my son's diagnosis of leukemia, and now feeling it again with this. So your comments were really helpful.
I went to school in Ohio - Wittenberg University - my parents are from Centerville (outside of Dayton)!

 
Old 07-30-2006, 04:43 AM   #13
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lizharlan HB User
Re: New to Autism

Glad to be of help.

I struggle with both depression and anxiety. I am on medication and have been on it since the third trimester of my first pregnancy - Josie (4 1/2 - not autistic). My dosage increased with my second pregnancy - Cara (3 - autistic). I am also getting private counseling - one hour every other week I am center stage and I get to focus on me - what a welcome relief!

Liz H.

 
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