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worried mother

Posted by on Jan. 15, 2013 at 9:37 AM
  • 14 Replies

I am a 26 yr. old mother of 2. My son needs tests done to see if he is autistic. I'm very scared, I need some advice from parents who have gone through this. Please write back as soon as possible. I also have a facebook under my name Grace Smith, my profile picture has my kids on it. My son and my daughter. I hope to hear something from someone soon, thank you.

by on Jan. 15, 2013 at 9:37 AM
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by Member on Jan. 15, 2013 at 9:43 AM

 I just had my 2 year old evaluated and it was very scary for me as well, but the process ended up not being bad at all. We had ours done by a developmental pediatrician. Who is doing the test and how old is your son?

by on Jan. 15, 2013 at 9:48 AM

My son Zachary is 5 years old.

by on Jan. 15, 2013 at 10:08 AM

okay hun i just started the testing for my son who is now 28 months  we call at just over 2 years old to get him in for the appiontment it took this long to get him in we meet with them frist he will do his meeting with them on the 30th. he have to get help for a few things before he can over do us and we learn to do things safty for to where he can not hurt him..  we know he is best at time and we have set appiontment and everything around his good times unless they need to see what goes on.  but you have to be ready for what they but down.  with our son one doctor has wrote down our son as a self injury child and that was at the age of 1 and that was hard to take but was for our safty because of what he was doing to himself.  just be open and if they have have paperwork that you can feel out ahead of time i would do that for i had someone esle look over ours to make sure we did it the best way.  and they look at it in diffenert eyes so we had miss a few things. so it help out plus the paperwork took a longtime

by on Jan. 15, 2013 at 3:55 PM

We have been have been our child test scince 2 finally got go a good dignose in 2012.In April 2010 by a delevpmetped just said ADHDfeatures of SPD and ODD then in OCT 2010 at Pyscation dx him also wih OCD and Anxiety with Features of Apperger alsoOCt same thing with devel said get ADHD uncotroll then look into mayb e Asperger .Fire all these dr. His reg thought aspertgar we went to cousler who said yes but not able to dx that.She remcommed our new dr who is AWESOME who is a PSYCHOLOst he watch our child for appx 3 months got all his medical and dental record and school and did test on him and we both fill out question Concluison he is Asperagr plus ADHD and and ODD Cause thought to be overdoes by a dentist at age 2years and 4 months he said cord around his neck at birth would made him a little odd. We do neourfeed back also school test him in 2011 cannot dx.

our child is 9 years

by on Jan. 15, 2013 at 4:08 PM

Hi! I actually just joined this group today because of similar circumstances. My son is 26 months and has a speech delay. I am extremely scared and really don't know what to do. We had a speech therapist who came yesterday and she said Benjamin has many red flags for Autism but it may be a certain way he learns. I'm not sure, but she said also he may have slight Autism either way. I am pretty much a wreck. I feel like a terrible mother and really didn't know where else to turn but here. I guess I don't really have advice yet since I am in a similar boat. But just know you aren't the only one going through this. Good luck.

by Emma on Jan. 15, 2013 at 4:32 PM
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First, it's going to be okay.

Second, deep breath and repeat the first sentence to yourself over and over.

Third, It really WILL end up being okay. LOL

Okay, so now that i said that, Hi, welcome to the group. I'm an autistic adult who got diagnosed last year as an adult... I obviously managed to survive to adulthood with classic autism - and while it was hard and there was a lot of struggles, I'm happily married with 2 kids.... and I'm a functional adult.

I do have speech issues. I do have some sensory issues, I do have classic autism and autistic traits, and I live a normal functional life, so if your son managed to get to 5 before being flagged, the odds of him being okay long-term is good.

What you can focus on now is getting some services in place for him, talk to the doctors, figure out what you are actually dealing with and customize it to him. It's going to be okay, really. It will have challenges and you'll be tired sometimes, but you are going to be okay.

You'll need school records, medical records, family history, and then anything you notice about him written down too, will reduce the time it takes to evaluate him, the more information you provide, the faster they can sort things out and figure out what's going on.

Find a provider who does the ADOS test - it's most accurate and make sure they are doing full IQ testing and ruling out other disabilities or disorders along with it....

If they say "he can make eye contact, he's not autistic" find a new doctor. There's a lot of myths out there, and doctors buy into them sometimes too.

Find one who's open minded and experienced and thinks each child is going to manifest in their own way, and that's probably the doctor to go with.

by on Jan. 15, 2013 at 4:46 PM
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Hi Moms, 

I feel for you all; it has to be scary. But try to put in your heads that autism is a communication challenge, not necessarily an ID.  Some have ID and ASD but, still, ASD is a communication disorder.  You are definitely not alone. The numbers globally are staggering. 1:88 in the US average but 1:49 in NJ, 1:47 UT, 1:38 S Korea.... boys to girls 4:1.  

There are more than 100 genetic mutations associated with ASD so far with no one answer of why the mutations.  I suspect no one will truly be identified because the liabilities are too great.  It's commonly stated as a combination between environment and genetics.

That being said, reach hard toward Assistive Technology, learn about Write's law ( Learn all you can about IEPs and 504 classification ( and become the best advocate  you can be.  Become prepared before your child even ages into school.

Don't get intimidated by a room full of administrative professionals, and before you go to meetings, write your goals down on 3x5 index cards so you don't forget anything.  Stories abound about parents too intimidated to push for an IEP that best suits their child.  

Specific assistive technology should be folded into an IEP plan because the tools will facilitate a better education, record keeping, and successful independence as adults...(depending on the degree of ASD). Most self-management training like visual scheduling is held off until secondary transition time but it really should be incorportated as early as possible - Assistive Tech makes this possible.

You're not alone... you just have other challenges as a parent and your child still loves you just as much! I'm seeing many parents share information with each other and form support groups making life just a little easier.  Keep up the good work!

by on Jan. 15, 2013 at 6:54 PM
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You are not a bad mother. Autism happens to the best of us. Autism will not define your child. Looking on the bright side if your child is diagnosed with Autism it will open up resources to help your child in their development that may not be available otherwise. Hang in there.

by on Jan. 15, 2013 at 7:34 PM

This is still your child, you are just being given a chance to understand him better. If its autism, then you will figure out what to do, there is so much information out there. Its not as scary as it sounds, there is a lot that can be done to help our kids. Right now just love him and take it day by day.

Violet's Mom

Twitter @autismnotebook

by on Jan. 16, 2013 at 3:54 AM

Did you get tested for Mercury and Lead poisoning? Do you have Mercury fillings? If so, get them removed, and do some DMSA chelation. A lot of your symptoms will probably go away. The same for the boy who is undergoing testing. And stop vaccinating (File Exempt) or he will completely lose his speech-as my kids did right after their vaccines.

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