Special Needs

Moms of young asd children or

of children who were given the dx at a very young age...

 Are you wide open with your childs dx. Do you share it with family and friends etc?

I have said before on here that I am in the closet still. I have considered even using a different screen name on here becauseI haven't even mentioned any of this to strangers I had become close with on the nest when we were pregnant together. I also have a nosey mil who will know as little about all of this as possible.. forever..

I am very open to other mothers that I meet in therapy, all of our therapissts, doctors, etc and my immediate family, sisters and parents. Not all of my sisters but most. I have remained less open than many about this because my son is so so young. I started asking questions at 9 mos or so but had suspicions before this. At 15 mos we were given the "tendencies" deal and at 18 mos he had a dx. He has already been moved down on the spectrum and is expected to be taken off by "the age of 3 or 4" . I know this is very controversial but our Developmental pediatrician is renowned and works directly with greenspan so for now he is who I trust.

I just don't want to give my son a stigma at 2 yrs old that will stick with him throughout school, if he continues to respond as well as he is to therapy. We have a ton of work left to do , have done a ton already and I just want to wait and see. I'm addressing each "symptom" and we are making progress.

I'm just curious if you have been completely open with your child's info.

I am probably in the minority here (outcast in the making :) ) I am not in denial and will give my son whatever he needs forever but he just started saying words 4 months ago, when he can full on speak in sentences and tell me things, then I will reassess our open-ness :)

thanks for input

Re: Moms of young asd children or

  • My son was dx at 19 months old and he will be 4 in a few weeks. He has come a long way since his dx's and a lot had to do with getting therapy at such a young age. Of course our families know and close friends but we don't usually tell people unless we have too. It's no one else's business especially strangers. Do what you think is comfortable for you. Good luck.
  • thanks so much! I would love to hear about your journey. Do you keep a blog specops? my site for moms is momsofasdchildren.com. I haven't offically announced it up and running yet because pics aren't back from the photog yet. Thanks!

     

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  • I asked this question on a local board recently. I have been open to family and really close friends, but struggle with 'aloneness'. It is a fine line of awareness vs. confusion - or at least that's what I like to call it. 

    My take is that yes, DS is young. If you aren't yet sure - why stigmatize.

    However, there are so many different faces on this spectrum, it's important to change the current view as well.

    My personal decision is to understand how I feel, understand my son, understand the spectrum, autism, etc.... and THEN when I feel it is appropriate - that it will not be detrimental to my son - that I am educating and not just 'venting' to strangers....... I will be more open.

    I was also challenged recently that it is an utter PRIVALEGE to have a special needs child that this is even a decision. How many other mothers have absolutely no choice because their child is on display physically or because of severity, etc....  they do not get to choose who they tell, how much time they have to explain, or even pass out cards to all those who give dirty stares and don't understand. THAT really made me think!

      

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  • I'll talk about it if people ask.  So most of our family/friends know, either because they've asked me outright what's going on with him or because they've heard from other family.

    As for strangers or people we don't see often, once again I'll talk if they ask.  I don't go around telling people he's asd or apraxic.  But I can tell most people notice there is something different about him, they just usually don't say anything.  Lately people will talk to him and expect him to answer, so I just tell them he can't talk yet but can understand them and then I help him to communicate.  It doesn't usually go further.

    DS - June 2006 DD1 - November 2007 DD2 - August 2010
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  • image dar12:

    thanks so much! I would love to hear about your journey. Do you keep a blog specops? my site for moms is momsofasdchildren.com. I haven't offically announced it up and running yet because pics aren't back from the photog yet. Thanks!

     

     

    I don't do a blog but I will check out your site. Thanks.

  • auntie of course never to exclude you! your son is older they either know or dont i figure for older kids. I can tell you this though, my therapists and pediatricians work with my develpmental pedi, all have said that he has taken hundreds off the spectrum and also when we started this he said mild-moderate but typed the paperwork at moderate, I was bummed. Then we went back and he was blown away said he is mild for sure. I said what's next. he said "normal ".

    Again, I am just for now treating the symptoms.. I can tell you that before 15 mos of age we would go into a grocery store and the cashier would say hi coochie coo and he would be like .. blank. I would do the oh hes tired etc. literally o-15 mos. So to go from that to this quick kid I know that things are changing. our dev ped's office has a saying of "dodged the bullet " this is what they think interveneing early can do.

    also, my regular pedi said some kids are quirky im sure he will be fine and maybe have quirks. So I brought that to the develpmental ped. He said your kid is not quirky at all. He really never has been but it was funny to hear him say this and know that he fully believes that he will "overcome most if not all of  "this'  by the age of 4"; 

    I'm fine with the wait and see but auntie im cracking up at the stamp on preschool file. our Dr. said for me to get over it . he said unless he runs for president it wont be uncovered :)

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  • I pretty much share my ds's diagnosis on an as needed basis and my immediate family, 6 coworkers and close friends all know and are very supportive.

    I do a blog about our daily struggles with Autism that I share on facebook with my friends, some on there are more acquaintances than friends. I do that more for educating people and keeping record of ds progress.

    You really cannot tell that ds is on the spectrum unless you actually try to sit down and talk with him, so it isn't that obvious.

    If you aren't comfortable sharing, that is your business. You could just tell people on an as needed basis that your dc has some speech delays. Probably won't get questioned beyond that.

  • I'm not a mom (baby's brewing another 7 months) but my younger brother has ASD.  He was diagnosed back in 1990, when most people didn't even know what autism was.  My family didn't exactly advertise it, but sometimes it became necessary to discuss it.

      You'll probably hear a bunch of semi-stupid questions and comments. All in all, though, I feel that people were more understanding of my brother's behaviors when they knew what was going on.  Most people who care about you and your son will be willing to learn more, and try to be sensitive to his needs.

    In regards to school, I work with a bunch of ASD kids; I've found that other kids can be wonderful and supportive about it, particularly if they know a student needs extra support with things like making friends.  Most teachers will be supportive, too, if they're well informed.    For what it's worth, my bro is 21 and in college.  His friends know about the ASD, and don't really care.

    "Cool as Hell like e-mail, but still timeless like a letter."
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