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RE: An Autism Primer: How Do You Know if it's Autism? - 7/27/2011 6:22:47 PM
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fiery
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You're very welcome, JennifernAlivia. Do I call you that or would you prefer something else? And I hear ya on feeling alone in it...when my son was dx'd with Aspergers Syndrome autistic spectrum disorders weren't nearly as prevalent nor were people as aware of them as they are now. He's 22.
You'll find some professionals more helpful than others so never be scared to ask for a second opinion. I had done research myself online long before I approached my dr and got a referral to the children's hospital for an assessment. He wasn't convinced either but then he wasn't well versed in ASD's and nor was he the leading consultant in our area on that, and it took the confirmation from the children's hospital to convince our physician that was indeed the case.
The best advice I can give you is to keep doing what you're doing, keep reading and learning. A good site to check out is http://www.aspergersyndrome.org/Home.aspx
It covers Asperger Syndrome, Autism, and Pervasive Developmental Disorder / Not Otherwise Specified (PDD/NOS).
It's wise to be familiar with as much as possible before your appointment, including the help and services you'd be entitled to by law. Use their sidebar links to see what's out there. Their founder's old forum was the first place I encountered online that gave me hope and you can be sure of help from parents going through or that have been through it all. They know how to navigate the red tape. The more sources of help and information you can have, the better. Happy reading!
P.S. If you're going to stick around, it would be better to register for the forum. It will make it easier for you to track your posts and find stuff you need again. I know I was always backtracking. :)
< Message edited by fiery -- 7/27/2011 6:24:50 PM >
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RE: An Autism Primer: How Do You Know if it's Autism? - 7/29/2011 1:52:21 PM
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ArticlePost
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Jennifer is fine, and I am registered...not sure why its not showing up. I am gonna check out that link and other areas as well. Thank y ou for that info...just been a bad week this week, but thank you...
JennifernAlivia
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RE: An Autism Primer: How Do You Know if it's Autism? - 7/29/2011 11:48:18 PM
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fiery
Posts: 5730
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We're always here if you need to vent, Jennifer, no problem at all. There must be something in the air, not having a great one myself either! Don't be a stranger now. :)
That's good you're registered. You perhaps just weren't logged in to the community forum when you posted. Come by and see us there often. :)
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RE: An Autism Primer: How Do You Know if it's Autism? - 8/3/2011 10:10:39 PM
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JennifernAlivia
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Location: Florida
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Hi Fiery,
Found the community forum post!
Well, as I look and re-read what I had posted on the article part of this, I wish it was autism. It's not, she has Rett Syndrom. I am trying so hard to keep it together and breath, but the more I read, the more video's I see, the more pictures I see and the more I am told and hear about this, I feel so utterly overwhelmed and lost. The hands, the toe-walking, laughing without cause, the faces, the talking to herself (no real words), everything pointed to Rett's, I just didn't know it, nor had I ever heard of it until the doc saw her doing everything. I guess at her age is when alot of children really start to show the symptoms, and I am not sure if I heard the doctor right, I was sort of in shock I guess, but with Rett's she will lose her motor skills even though she has them now, the hand thing is the beginning stages of that? Was just so much information so fast, I didn't absorb it all, or my mind didn't want to absorb any of it, I think it was after they brought up life expectancy with the type she is showing sugns of, more testing is needed to determine it exactly...I think that was when my brain shutdown...do you know much about this syndrom, I don't even know if I am spelling syndrom right atm....anything would be helpful, scanning these websites is not encouraging atm....and I can't stop  I am so lost and afraid, and I feel like an utter idiot for blubbering like a foold when I know there are parents that deal with this everyday, my heart and prayers go to them all, I think its just because I just found out...and I am babbling at this point, so i will stop here, take a breath and wait for you to respond...
Thank you for reading/listening.....see it's just me now, their father passed away from cancer a month after we found out I was having our 4th child, so its just me with the four of them, and you honestly are the people I have to talk to about this, so forgive me if i ramble, or seem out of it...my apologies in advance....
Jennifer
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RE: An Autism Primer: How Do You Know if it's Autism? - 8/5/2011 2:04:46 AM
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fiery
Posts: 5730
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Jennifer, don't ever apologize to us for needing to talk, hon. We'll help best we can. I don't know anything about that condition, I'm sorry. I'll help you look for information and support though, and I'm sure the others will pitch in too.
And of course you're blubbering-any one of us would be the same way so stop thinking you're an idiot for doing so. That's a natural reaction of sadness and shock and nothing to beat yourself up about. The good thing is you know now what you're dealing with and don't have to wonder anymore, and when you know, you can take action.
Do you have anyone from social services involved with your family? If not, you should contact them for help and assistance and if you already do, update them on her diagnosis. Help is out there just for the asking.
Ask your doctor's office who can help you with this too. They should be able to provide you with literature and point you in the right direction.
What state/area are you in? That will help us find out what's available.
The Mayo Clinic recommends The International Rett Syndrome for support and resources in their page about it. http://www.rettsyndrome.org/
I looked at it and they have regional reps that help parents of newly diagnosed children. I think it would be a great idea to contact them, Jennifer. They will know best how to help you both. This is the page all about that. They also have a Contact Us form at the top of there so you can ask about anything you can't find.
quote:
Have You Just Received Your Rett Syndrome Diagnosis?
We're here to help! IRSF has set up a Regional Representative Program to provide emotional support, information and resources to families affected by Rett syndrome. If you're in the United States, please contact the Rep in your state TODAY! If you are not located in the US, please contact the organization closest to you.
http://www.rettsyndrome.org/content/view/694/461/
They have a Facebook page too: http://www.facebook.com/RettSyndrome
Hugs to you, hon. My heart goes out to you. Hope that helps and keep us posted. And you can call me Kay if you like. :)
< Message edited by fiery -- 8/5/2011 2:12:54 AM >
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RE: An Autism Primer: How Do You Know if it's Autism? - 8/5/2011 6:18:47 PM
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tired
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Hi Jennifer -
I wish you all the best in the world. You sound like you really have your hands full. Let me say you sound like a very strong woman. I know that inside you probably feel that you are losing it but you sound clear in your thinking and writing and your daughter is lucky to have a mom who worries and loves her sooo very much. So often life hits us with more than we think we can handle. I have come to this forum to vent before and complain and about what? My issues seem so petty now. The information Fiery gave you seems like the way I would start also. You definitely will need support. Are there other family members/good friends you have that live nearby? And don't ever feel like a fool - I am sure all those other parents in your position are doing the same and feeling the same as you - that's why a support group would be so good. My heart really goes out to you. Please keep us informed and never give up hope - the medical field grows by leaps and bounds these days. I will be thinking of you and your family.
Eva
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RE: An Autism Primer: How Do You Know if it's Autism? - 8/9/2011 1:47:21 AM
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fiery
Posts: 5730
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Jennifer, I noticed the Regional Representative program link at the rettsyndrome site there was returning a 404 error so I notified them of that. If you tried it before, it's fixed now.
The lady sent me a nice email and asked me to pass on her direct contact details to you as I'd mentioned I'd shared her link with a parent that had a new dx and then found that part wasn't working right. I'm PM'ing that to you so the spambots don't pick up her email address. Hope you're doing okay.
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RE: An Autism Primer: How Do You Know if it's Autism? - 10/10/2011 12:23:35 AM
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ArticlePost
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i might think ni have this & i really dont know hwat to do ? my freinds think im very weird and im not good at sppelling even the easyiest words and the bad thing is im 14
ciara
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RE: An Autism Primer: How Do You Know if it's Autism? - 12/18/2011 11:00:54 PM
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ArticlePost
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Hi I have an autistic brother and he is 21 yr old can u help me with him can u tell me what program can he go in to help him. All he like to look at movies and eat hot wings and if u say NO he will get mad and break things and hurt his self
Bj
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RE: An Autism Primer: How Do You Know if it's Autism? - 12/23/2011 2:45:24 AM
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fiery
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quote:
ORIGINAL: ArticlePost
Hi I have an autistic brother and he is 21 yr old can u help me with him can u tell me what program can he go in to help him. All he like to look at movies and eat hot wings and if u say NO he will get mad and break things and hurt his self <br><br>Bj
Bj, look for online support community groups and resources specifically related to autism. Try http://www.autismsupportnetwork.com/ to start off. Register free for their support community. They will help you find out what aid there is in your area if you just ask.
< Message edited by fiery -- 12/23/2011 2:46:51 AM >
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