family & friends denying possible ASD DX | Autism PDD

I've been there.  When B was 12 months old, I KNEW there was something not right.  No one would listen.  It took my parents until Brendon turned 4 and was still not talking to finally admit that there was something wrong.  I kept bringing him around them because they love him, but it was frustrating as hell.  I still have people to this day who tell me, "Don't worry about it...he'll grow out of it."  That just makes me mad.  The people who say that don't have a freaking clue what my life is like each day.  I'm sorry if I'm comming across as abrasive, but your post brought back alot of memories from a time in my life I'd just love to forget.  I will tell you this.  As B has grown, it's gotten easier dealing with the non believers.  When our kids are younger, they can pass for NT alot of the time, but as they age, things become more glaringly obvious.  Sending you some big hugs from Louisiana.Hi,

Listen, I have been there! Good that you are taking an aggressive stance about your child! Please get in touch with early intervention. We were not sure either, and I certainly didnt want the autism DX and hoped against it. But if it is, you want therapies as soon as possible and it is free! Nothing to lose! Good luck, and DON'T WAIT. Mothers know, we have instincts!
Yvonne
Oh and by the way in PA where I am you can get all kinds of group support through EI! God bless you

yea I can relate too...I knew that something wasnt right with savannah at about 12 months too... my family dont see the issues with savannah either. They dont see that not eatting with a fork at 4 is a problem...they dont see that being so obsessed with something that you scream for hrs about it if you forget where you put it is a problem, they never saw that...not crawling was a problem...or that she talked before she could walk...in paragraphs...thats just the point...your the Mom...and mom knows best...you spend the most time with him...and want whats best with him. continue to persue a diagnosis...inspite of the opposition...as your the only voice your son has...Good luck and hugs from illinois too...

You are experiencing something that we did not. Ty's ASD came later, after about 2+ years of NT developement.   It is cool that you live in PA. We do also. Could you tell me if you are in the Pgh area? If you are, Cindy Waeltermann's group, The Autism Center and the website AutismLink is most helpful in getting diagnosis' without a prolonged waiting time. Let me know if I can help.   John

We have all been pretty much where you are right now and totally understand.  The best advice I can give is to learn what you can yourself and help your child..your family may take years to come around to seeing what you see and even if they accepted your child may be autistic they still might not want to talk about it unfortunately.

   That is why boards like this one are so important for us parents..we understand, we dont question nothing..and we try to listen and help each other out and give hope:) It is so nice to post progress or setbacks and get advice and positive vibes from everyone.

    Once your son gets evaluated (developmental pediatrician is best.IMHO) then  slowly give family info on the disorder.only if they are willing to listen:)

 Best of luck and keep us posted:)

I am right there with you, tho I fear any DX will not come for a while, thus feeding my in laws fire of doubt...you do what needs to be done for YOUR child. That is the most important thing now. I have had to learn this too. We are mommies we know our kids, we know when something is not right. Stick around here I promise you will find lots of helpful people.

~Nicole

thanks guys...
It is sometimes just so hard to get through the day- and I always wanted to be a mommy!

My DS has been a tough infant, many hours of crying and will not be comforted, doesn't want to be held or cuddled.  So, I think that makes even tougher on those days.

But- I am tough and very determined, if not a little pushy at times!! hee hee, so , I will get him help.

John, I am in Pgh!  I live in Wexford and the dev ped I saw was Dr Sara Hamel at Children's Developmental Unit in Pgh.  Where is Cindy W.??  Is the Autism Center you refer to Dr Carosso?  I got an appt there for later this month... but my DH and family are really resistant to me taking him to an "Autism Center". I know, lots of stuff going on here at my place. Is there a local support group you would recommend for me once I get a DX??

Anyway, thanks again guys... I will be reading and learning from everyones posts!
d
My in laws as well only want to hear about the cute things my son is doing.
To be honest we never told my sister-in-law who we see maybe 3-4 times a
year. (Sweet and single and self absorbed she has no clue) Your family will
eventually come around. My Mom and sister have been very supportive. I
have about three good friends who I can count on for help. They know what
we have been through. My one friends son who is 9 yrs old has been a great
playmate for my 5yr old son, patient engaging and totally fun.
I have seen kids yr age in ot settings. Check around, you may be able to get
an ot eval right away and start the interventions. (You may have to pay
privately but well worth ist if it is a good facility. I ignore the people who deny disorder dx in kids ! They are just disorder dummies if you ask me. My mil is the biggest pest of all who thinks kids can fake things also. X teacher scary thought! She thinks people today don't live frugel enough. She is antisocial by choice/workaholic. She thinks I know nothing. She tells me Daniel just doesn't want to do school things. True some what!He does hate it he says!We know our kids best as their parent's.Dear Saddyinpa:

The Autism Center is in Wexford.   Here is a link to the website for Cindy's group.

http://www.autismlink.com/index.phphttp://www.autismlink.com/index.php

Cindy Waeltermann is a Mom of 2 Autistic sons. She strarted this place because of the delays in getting help and diagnosis'. She is cool and she can help you. She is a virtual dynamo in the autistic parents community and a very nice person.

My son was diagnosed at Children's Hospital of Pittsburgh, Child Development Unit as well. Dr. Cynthia Johnson had Tyler for a diagnosis. My wife works at Children's so we already trust the Doc's there. Good Luck and PM for my phone number if you want to talk.

JohnI know exactly how you feel! People in my family shrug off everything even with a diagnosis and dont even like talking about it when I bring something up but yet when my son has an episode you see their raised eyebrows, so i dont really understand! Its hard especially when you yourself are still trying to come to terms with everything Dr. Carrasso is a part of the Autism Center.

Your people must be afraid of labels. If a diagnosis is necessary to start the ball rolling for your child to be a happy, healthy, competent, capable, confident individual who can communicate without fear or anxiety, then let the games begin.


JohnI'm in the same boat is some ways,  many do not want to except the dx. but I have found it a blessing and a launching point for my son.  I just ignore the not so gentle hints that some think he may have been mis diagnosed.
 
I have changed his diet and found through blood testing he has a wheat allergy.  two things we would not have known without the dx. 

It's not a horrible thing it's just one thing you will maybe learn and use to help your child  as a great parent would.    First off, I know I need to just get through this and that will be more tough times to come... but I guess I just needed to vent a little to people who might understand!!

I am struggling on how to get through this time with my very young DS(12 mos) who is our only child ( after 5 yrs of IF and miscarriages) who is in the process of getting diagnosed with an ASD.

Now that I know what we are dealing with ( well, I dont really understand it or know it yet) I am trying to get my DS help and I am also trying to get over my fears and great sadness.  But, my immediate family ( parents, sister, in laws) who we are very close to and see all the time, is still in denial that my son has any sort of disorder, and don't want me to talk about it.

I understand now that it may take a while to get an official DX ( we are working with a good dev ped already) since he is so young and it is tough to say without a doubt til he is older...  but in the interim we are losing opportunities to help him.

I also need support, but can't talk to anyone.  My friends with kids dont understand and constantly tell me I am just a new mom and that it will get better.  They aren't dealing with any of the same level of issues that we are and I have learned to really not 'vent' to them anymore.

My family doesn't seem to want to hear anything but positive cute things my DS might be doing and even when something concerning happens, they manage to spin it into 'oh all 1 yr olds do that'.  Well, that is not necessarily true!

Not all 1 yr olds crawl over to the wall and bang their heads against it over and over.  Not all 1 yr olds have no 'words'.  Not all 1 yr olds flap/twist their hands and feet constantly. Not all 1 yr olds have serious meltdowns if they are 10 min late for their nap. Or wake up screaming in the middle of the night and cannot be comforted. and on and on

I guess I really need someone to emphasize some with me on how tough it can be.. but since no one wants to admit that there is something going on, they never do.
I can't really join an autism support group in my area yet, because we don't have the DX yet.  We see the dev ped again in 2 mos and I think she may give us some more concretes then..

UGH, I guess there is really nothing to be done, I just needed to tell someone this! 
thanks for listening,
d in PA

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