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  #1  
October 21st, 2010, 06:57 AM
blessdmommy's Avatar Happy mama to 3!
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We were told by Jack's pediatrician (well the nurse partitioner, because the pedi was out of the office), that Jack needs to be tested for Autism. We are having a hard time making a decision as to weather to get him tested at all, and if we do...which route to go.
We could get him tested by the pediatrician (specialist in Autism, would do a series of labs and focus more on dietary needs rather then therapies) or get the ADOS done and focus more on therapies rather than diet. The pediatricians services would come out of pocket because they dont take insurance for the evaluation or follow up care. We'd have to submit all the bills to the insurance company and hope they cover them. If we were to do the ADOS we'd have to pay some out of pocket, but that would be after insurance was already billed...

We're worried about "labeling" Jack, how others will look at him with a diagnosis.... I just wanna cry!
For more info on Jack's development, check my blog.
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  #2  
October 21st, 2010, 07:01 AM
TallyGirl22's Avatar Platinum Supermommy
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Don't cry hunny! I know it seems scary - don't let it scare you. No one said anything about diagnosed... they just want to evaluate/test him. Personally if it were Elizabeth, I'd go ahead and have it done and do whichever I personally thought was the best route. Hang in there and know we're all here for you!
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  #3  
October 21st, 2010, 07:04 AM
blessdmommy's Avatar Happy mama to 3!
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Quote:
Originally Posted by TallyGirl22 View Post
Don't cry hunny! I know it seems scary - don't let it scare you. No one said anything about diagnosed... they just want to evaluate/test him. Personally if it were Elizabeth, I'd go ahead and have it done and do whichever I personally thought was the best route. Hang in there and know we're all here for you!
That's what the evaluation is for...to determine diagnosis, weather he is Autistic or not.
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  #4  
October 21st, 2010, 07:17 AM
Ditzzy's Avatar Stupid Lamb;)
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Honestly, I'd get him tested and if he does get an ASD diagnosis he can start his therapies earlier and have a great start. ((Hugs)) I know an official diagnosis would be scary, but you're not alone. You would be a wonderfull advocate for your son, Maria.
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  #5  
October 21st, 2010, 07:36 AM
youngwoman's Avatar Platinum Supermommy
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Hope has a great point; if he IS diagnosed, he can receive help that much sooner. And if he's not, then you can put your mind at ease a little bit. HUGS!!!
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  #6  
October 21st, 2010, 07:51 AM
dream2bemommy22's Avatar and baby makes 5
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i know if it were me, i would go ahead and get my kids evaluated. its scary, everything about being a parent is scary. Noone wants their kids to be judged or labeled, but you also dont want your kids to suffer becuase you are afraid of a diagnosis.

The sooner you get him evaluated, the sooner you can come up with a plan for Jack. He may not be autistic at all, and you could be worrying for nothing. Hugs.

And one last thing, i think i would go with the ADOS. I dont know much about Autism, but i dont know how a diet change can help things. ( but this is me being uneducated on the subject)
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  #7  
October 21st, 2010, 07:58 AM
happyhme44's Avatar Mega Super Mommy
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I would also get the testing. If he is autistic then I would personally focus on both diet AND therapy. I would do all of the diet research myself and implement it at home. I am not a therapist so I would allow the doctors to handle the therapy because hey at least you don't have to pay for that part right? There is no reason you should have to do just one or the other. I have been on a jacked up diet for my food allergies and ADHD my whole life. My mum did the research and we just followed it. Honestly these days I am starting to wonder if doctors ask for all kinds of testing to protect themselves from lawsuits. He may not even show signs of anything but they want to test him just in case. Heck if you work hard enough you could diagnose the entire planet with something.
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  #8  
October 21st, 2010, 07:59 AM
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I think that you should get him evaluated as well. I would probably go the ADOS as well but then use other holistic therapies as well. Complimentary therapy can be very helpful for children with autism, especially dietary changes. The most important diet changes you can do is to remove all HFCS and gluten from his diet. Just removing these two things can help children with Autism so much!
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  #9  
October 21st, 2010, 08:00 AM
blessdmommy's Avatar Happy mama to 3!
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The reason why we don't know if want to get him diagnosed is because he's already receiving the therapies ect that he would get if he were diagnosed as Autistic. Part of me thinks it would be beneficial to have the diagnosis...if only to better help explain things to family...
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  #10  
October 21st, 2010, 08:03 AM
happyhme44's Avatar Mega Super Mommy
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Well I personally would want to know because it may changes things when he enters school. In order to have a correct IEP they need all of the proper information.
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  #11  
October 21st, 2010, 08:07 AM
Twinkle's Avatar Platinum Super Mommy
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When we went through testing with Lily, we actually chose not to have any autism testing done at 2 1/2, since she was receiving the therapies she would need anyways (OT, speech and behavioral). We did however talk to a developmental pediatrician who suggested we wait at least a year before doing any formalized testing. I don't think you'd be harming Jack at all by waiting a year, as long as you continued with the suggested therapies. In that time you could do some dietary changes and see if that makes a difference as well. I personally think an autism diagnosis at 2 1/2 might be a bit premature.
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  #12  
October 21st, 2010, 10:07 AM
KellersMom517's Avatar Emily-Mom to Keller Henry
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Quote:
Originally Posted by Twinkle View Post
I think that you should get him evaluated as well. I would probably go the ADOS as well but then use other holistic therapies as well. Complimentary therapy can be very helpful for children with autism, especially dietary changes. The most important diet changes you can do is to remove all HFCS and gluten from his diet. Just removing these two things can help children with Autism so much!
I agree with this! I also think that, even though it is scary to think of Jack being 'labeled', he is still Jack - YOUR Jack, and he's still the same kid. But having that diagnosis in the medical field might open up some doors for you therapy-wise. I'm not 100% sure. I also agree that you may be better of relying on the pros for the therapy portion, and doing a lot of research on the diet yourself. Diet is a huge part of helping austistic children function, which is hard to believe, but the HFCS and gluten do a number on kids on the autism spectrum. And, if he isn't autistic, then you haven't wasted months or years worrying about it and you can still get the therapy he is already having.

Good luck hon!!! It's not an easy decision you have to make
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  #13  
October 21st, 2010, 10:10 AM
Turtle Bay's Avatar Super Mommy
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I understand that this is so hard to grab hold of and feel sure in every decision you make. I also battle these questions and possibilities every day.

Mostly I just keep the idea that understanding how to help my son is the best thing I can do for him now and the future. Regardless of what he battles.

Hang in there - you are in my thoughts.
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  #14  
October 21st, 2010, 10:14 AM
blessdmommy's Avatar Happy mama to 3!
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Quote:
Originally Posted by Twinkle View Post
When we went through testing with Lily, we actually chose not to have any autism testing done at 2 1/2, since she was receiving the therapies she would need anyways (OT, speech and behavioral). We did however talk to a developmental pediatrician who suggested we wait at least a year before doing any formalized testing. I don't think you'd be harming Jack at all by waiting a year, as long as you continued with the suggested therapies. In that time you could do some dietary changes and see if that makes a difference as well. I personally think an autism diagnosis at 2 1/2 might be a bit premature.
The testing wouldn't be scheduled till next yr (Feb/March) because if we do it after April...insurance won't pay and will already be paying 200+ out of pocket after insurance pays if the test is doen in Feb/March.
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  #15  
October 21st, 2010, 11:06 AM
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I don't know much about these things, but I just wanted to say that no matter what, we're here for you and Jack. I hope that things turn out just fine, but even if it's not atleast you're getting him help now and not later, and it seems like there's so much more knowledge out there about autism than there was a few years ago.

Big hugs!
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  #16  
October 21st, 2010, 11:26 AM
TwoSweetGirls's Avatar Platinum Supermommy
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I too would have him tested, not only for him, but for you too. He would/could receive the therapies he needs, but also so could you, ie support groups. You could always try to cut certain things from his diet now. I know gluten is a big one, but not sure what else. I have a friend, and her son is autistic. She is on the autism board here, and I believe she is the host of the board. You may want to message her. She could be super helpful to you.

Hang in there Maria.
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  #17  
October 21st, 2010, 11:46 AM
tanya74's Avatar Platinum Supermommy
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I also think you should have him tested. The sooner he could start getting help, the better.
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  #18  
October 21st, 2010, 02:00 PM
jillylicious's Avatar mom always liked you best
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Quote:
Originally Posted by happyhme44 View Post
I would also get the testing. If he is autistic then I would personally focus on both diet AND therapy. I would do all of the diet research myself and implement it at home. I am not a therapist so I would allow the doctors to handle the therapy because hey at least you don't have to pay for that part right? There is no reason you should have to do just one or the other. I have been on a jacked up diet for my food allergies and ADHD my whole life. My mum did the research and we just followed it. Honestly these days I am starting to wonder if doctors ask for all kinds of testing to protect themselves from lawsuits. He may not even show signs of anything but they want to test him just in case. Heck if you work hard enough you could diagnose the entire planet with something.
I completely agree with this and think Annie has given you some fine advice.

Hugs, hon. Keep moving forward, and remember that God won't give you more than you can handle. It's going to be okay.
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  #19  
October 21st, 2010, 06:43 PM
mayandsofiasmommy's Avatar Platinum Supermommy
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Hugs! Honestly, I know you are worried about "labeling" but sometimes a label is the best thing so that you can get the services you need. I have a student who is now in 8th grade. They put him into my English class last year, and I knew he was on the spectrum. NOTHING in his IEP says autism, it only lists ADHD, and that is doing him a HUGE disservice because people look at that and expect him to do everything anyone else can do. He simply cannot. He is a great kid, but he does need a lot of extra help and needs to be in a super small class size. Anyway, the label can be a good thing, especially now that they do put kids in the Least Restrictive Environment.
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  #20  
October 22nd, 2010, 07:30 PM
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I would also like to chime in on the ADOS. I am part of our school district's AU Eval Team that evaluates ADOS assessments and it is a truly great tool. The child basically gets to play a series of games that show very different responses from children with autism than how typical children respond.

I am not an AU "expert" but I will say in all the children I have worked with over the past 7 years that dietary changes have not brought about a whole lot of success but behavioral therapy has across the board. Just what I have observed. The dietary thing works well for kids with celiac disease and that is the cause of autism-like traits in some kids so you really never know without testing though.

I hope this is helpful. I agree that a label/diagnosis is helpful in getting extra services in school; in fact it's usually necessary. However I understand your feeling and want you to know that a label is not all a child is... and a label doesn't change who they are or how much you love them!

Good luck and keep us posted... hugs.
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