newly diagnosed

Rhiannon - posted on 12/06/2009 ( 5 moms have responded )

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my daughter (3) was just diagnosed with autism. Is there any advise of knowledge that anyone could pass on. I feel really overwhelmed by everything and don't know where to start, or what to expect.

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Chelsea - posted on 12/07/2009

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hi - my daughter was diagnosed when she was about 3 as well. I knew something was up around 2 cuz she stopped being able to say 2 syllable words and was just different that she was. I faught with doctors that kept saying she was fine until a teacher noticed something and sent her for testing. I was both releived and freaked out to get the diagnosis. I was relieved to know what we were up against. I cried for about a week, pity party basically. For myself cuz my child was not "perfect" and i could have done this to her and because my lovely lil girl would have more struggles than most children. it was so hard to accept. But after my pity party was over i got my butt into gear and found out all i could about it. That was before the internet so i didn thave all this knowledge at my fingertips but i went to the library and found out what i could. It was a newish thing as well so not much out there cept the movie "rain man" to go by.
My husband at the time would not accept the diagnosis, sometimes even now he doesnt say it. She is 13 now. She was in physical and speech therapy and got soooo much out of it. we did it at least 3 times a week and at that point i was lucky enuf to be a SAHM with a 2nd child at home. I stopped vaccinating both of the children as a precaution. I changed her diet and that was a big flop - the gluten free did not go over well at our household, lol.
Anyway, my daughter is on the low end of the spectrum, she is called a "functioning autistic" and only last year did i tell her about this. I told her when i thought she was able to handle and comprehend it all. It helps her to know that her "quirks" or what we call "triggers" are not weird or her fault, just who she is.
I carried ear plugs in my purse for YEARS to help her with the noise of the world. When we were out toilet flushing was the worst. She only needs them sometimes now. We found that music was helpful to her - by accident actually. She was having a fit and freeking out at a family thing once (over stimulation) and my grandma came over and sang something and she stopped and was attentive. So my grandma would sing to her instead of talk - like she would sing "do you want to come over and eat lunch now" instead of just saying it. It was fun to watch her respond so well to it. That turned into her having her own portable CD player so she could "escape" from whatever was buggin gher with her music and not hear what was going on in the real world. Now she has an Ipod.
You will figure out your childs "triggers" and then find solutions to calm those. My daughter now can say "i need a break" and will leave a very busy area of the house and be able to take herself out til she is ready to come back. Without therapy and us working on it she wouldnt be able to do that.
I SWEAR that she is in the place she is now cuz of hard work but mainly cuz of early intervention. She is in "regular" class and school, has friends socializes more than i would have ever thought she would be able to do.
I also try to keep out refined sugars and packaged foods out of her diet, she doesnt drink soda (her choice tho, lol). I try to do this, it doesnt always work but its best to keep those out of the diet for anyone really. I also have her take a multivitamin as well as 1000 units of D (we are in wisconsin so not a lot of sun here) and a DHA pill.
I am a member of the autism society here in my area and volunteer at the functions when i can, they have tons of articles and books that you can check out for free and tons of info and people to talk to that go thru the same thing you do.
this is the website for my chapter.
info@assew.org

Alicia - posted on 12/07/2009

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I would like to address both you and Ashley who replied to you. It is totally normal to feel the way you do. I think most of us did. I have read from a few moms that they felt relieved to finally have an answer but for most of us it was this overwhelming feeling of grief and confusion. Your going to go through a mourning period for the life you expected her to have. Just try to take it easy on yourself and understand this is normal. Try to remember though that despite feeling like your world has shifted entirely hers hasn't. It's the same as it was before the diagnosis and they are the same kiddos with all of the same wonderful qualities.



When my husband and I got home after the conference where we recieved my sons diagnosis I walked through the door just feeling devestated. I knew before walking into that conference room what they would say but that didn't stop the actuall words from slamming into me like a brick wall. I was grieving for our child. I walked through the door and he came running around the corner to say hi. I looked at him and realized he was the same little boy we had left with a friend 2 hours earlier. I can't tell you how much peace that gave me having this moment of clarity that it was my perception and percpective that had changed not him. I held onto it in the coming months when I was working through my feelings. Hopefully you can find something similar to hold onto emotionaly to get you through. Look for the positive in your daughter and focus on that.



As far as practical advice to help you get started getting them what they needs there are a lot of resources out there for you and your kids. Check out autismspeaks.org. It's a great websight. They have a kit they've created for parents of newley diagnosed children It's the first 100 days kit. I didn't know about it until months after he was diagnosed so didn't use it but I've heard from the moms who did used it that it was a lifesaver. Here is the link - http://www.autismspeaks.org/community/fa... The site is really informative beyond the kit too so a great place to start learning. There are also a ton of books on autism. I would recomend finding one that goes into some detail about treatment options. That is what you want to focus on first. She is still young enough to have early intervention therapy really be effective. Ashely I'm not sure how old your kiddo is but there are appropriate and effective forms of therapy for all ages. Get them into therapy as quickly as you can. Don't wait to make a decision about what is best then sign up. You'll shoot yourself in the foot if you do because most places that provide autism services have a waiting list. Get their names on those lists while you try to decide which way you want to go. It will cut down your wait when you do decide which type of therapy is best for them.



I'm not sure if your diagnosis was through the schools or an outside specialist. If it was through a specialist great. This makes getting private services easier. But if this is the case contact your county right away to start the ball rolling getting her into an early childhood special education (ECSE) program. My son showed so much improvement when he started his autism pre-school program. Not sure where you are located but in the US there is a law requiring schools to provide a free and appropriate education to special needs kids. While it's appropriate for nuerotypical kids to start at age five our kiddos need a head start. They can start attending an ECSE class at three. Some schools will even start them at two. Ours did.This is a great place to start. There is a ton more info I could throw at you but this is really a lot to get started with. I will just add that intensive early intervention provides the best outcome for most kids. My son is currently with a therapy provider that works with him 25 hours a week in addition to his two afternoons at ECSE. I know that seems like an insane numbers of hours to work him and sometimes it is difficult for him and us. But he is showing a lot of improvement. I would reccoment looking into it. You can look for ABA or IEBT. Different providers use different terminology. Also try to get your kids into a speech pathologist and occupational therapist for evaluations and therapy.



If you have questions or just want someone who's been there to talk to contact me.

Good luck to you both.

Alicia

Alexandra - posted on 12/06/2009

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My 5 year old is still awaiting his official diagnosis but he has been evaluated as having a autism spectrum disorder. Academically he is fine, but what he lacks are the social skills to fully function in a group. He was first evaluated officially in August after having worked w/ special education instructors since the end of April. He has made huge progress in those short months. My best advice is to find a local parent support group and join. Our group has been wonderful for me and my husband. It really helps you not feel as overwhelmed because you know you are not alone. And you are not. Also read as much info as you can either on the web or at book stores. I know it's hard and a bit scary but we are here for you. Feel free to add me to your circle to chat further. Also remember she is your child and you do know her best. Trust your instincts and don't be afraid to speak up to ANY of the doctors if you do not agree w/ something.

Ashley - posted on 12/06/2009

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I dont have any advice because I am in the process of waiting to get my daughter tested. But what were the signs of autism? Im very overwhelmed as well not knowing if peoples opinions of her being autistic are true and I am not sure what signs i should be looking for. If you dont want to answer i completely understand I am just curious.

Ashley - posted on 12/06/2009

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I dont have any advice because I am in the process of waiting to get my daughter tested. But what were the signs of autism? Im very overwhelmed as well not knowing if peoples opinions of her being autistic are true and I am not sure what signs i should be looking for. If you dont want to answer i completely understand I am just curious.

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