Log In Sign Up

Do you tell people?


Forum: Children with Special Needs

Notices

Welcome to the JustMommies Message Boards.

We pride ourselves on having the friendliest and most welcoming forums for moms and moms to be! Please take a moment and register for free so you can be a part of our growing community of mothers. If you have any problems registering please drop an email to boards@justmommies.com.

Our community is moderated by our moderation team so you won't see spam or offensive messages posted on our forums. Each of our message boards is hosted by JustMommies hosts, whose names are listed at the top each board. We hope you find our message boards friendly, helpful, and fun to be on!

Reply Post New Topic
  Subscribe To Children with Special Needs LinkBack Topic Tools Search this Topic Display Modes
  #1  
March 24th, 2010, 11:56 AM
Effervescence's Avatar Platinum Supermommy
Join Date: Sep 2008
Posts: 6,791
Do you talk to other mothers about the things you face with your child? Or do you keep it to yourself and let them assume what they will?

I've had other mothers from our playgroup ask me about certain things, but I've learned to kind of keep my answers as short and direct as possible. I used to try to explain everything, but I found that kind of opened the doors for a lot of unvalidated opinions and unsolicited advice. But I wish that I could talk to them about it
__________________


Click the blinkies!

Thank You, Pattyandthemoos, for my beautiful siggy!
Reply With Quote
  #2  
March 24th, 2010, 12:13 PM
Platinum Supermommy
Join Date: Mar 2008
Location: Maryland
Posts: 20,233
I don't talk to other mothers aside from my own anymore typically. The ones that I did talk to in the past would just wish us the best in figuring out his problems and leave it at that. I agree it'd be nice to be able to talk to another mother about it. Unless they have a child with similar problems though how can you?
__________________
~Thanks Babydoll213 for my awesome siggie!~



Reply With Quote
  #3  
March 24th, 2010, 04:30 PM
Ditzzy's Avatar Stupid Lamb;)
Join Date: Sep 2007
Location: OH-IO
Posts: 9,023
Send a message via Yahoo to Ditzzy
I don't offer information. If someone asks a question, I'll answer it as simply as possible (ie. her airway is floppy). If I know the person I'll offer more info. Some of it is hard to grasp, though.
__________________




Thank you, tasha_mae, for my siggy!
Reply With Quote
  #4  
March 24th, 2010, 04:53 PM
AlexKatieAiden Mommy's Avatar Linda
Join Date: Apr 2009
Location: Wisconsin
Posts: 3,009
Since my son's disability is not seen, I don't tell alot of people unless they ask. If they are sincere I take the opportunity to educate people on autism (that not all children with autism are like rain man). Some people are just rude so I don't waste my time.
__________________

check out my My Etsy Shop See My Blinkie Gallery & My Siggie Gallery & My BLOG
Reply With Quote
  #5  
March 24th, 2010, 05:13 PM
quietsong's Avatar Just Another Slacker Mom
Join Date: Aug 2006
Location: Missouri
Posts: 42,367
Send a message via MSN to quietsong
I don't volunteer information, but a lot of times I get questions about his cochlear implants, and I'll explain if they ask about how he is deaf and that a cochlear implant is the "next step" of hearing aid to allow him to hear. I've found his deafness is a much easier and more accessible disability. I never bring up all the other stuff we face - his muscle tone, dev delays, etc, etc - and since everyone focused on his deafness they never come up.
__________________



Visit My Blog, and come join me at the JM Blogs!
Thank you Jaidynsmum for the siggy!
Reply With Quote
  #6  
March 24th, 2010, 07:34 PM
Effervescence's Avatar Platinum Supermommy
Join Date: Sep 2008
Posts: 6,791
do any of you have social situations with typical children, like a playgroup or preschool etc, where parents notice things and start asking questions? The moms in our playgroup are very nice, but they just don't get it. They know Jonah is "off" and they ask about it, but there's no way that I'm telling them at this point that he might be on the spectrum, or that we're seeing PDD and autism specialists. But then I don't know what to tell them. They aren't being mean or rude, they just want to know what is going on. And today we went to the science center, and there was a boy Jonah's age playing in the special room for infants and very young toddlers. His sister was in there, which is why he was in there, and they were there with their grandma. The grandma just kept asking me all these questions, and I didn't really want to answer. But again, she wasn't being rude, she was just discussing the kids. I wish I could just not tell people how old he is, but that is often the starting piece of the conversation for any one with kids.
__________________


Click the blinkies!

Thank You, Pattyandthemoos, for my beautiful siggy!
Reply With Quote
  #7  
March 25th, 2010, 06:10 AM
quietsong's Avatar Just Another Slacker Mom
Join Date: Aug 2006
Location: Missouri
Posts: 42,367
Send a message via MSN to quietsong
To be honest - if I don't want to discuss Danny's delays, I fib. I'll tell people he's 6-9 months younger than he is. He's only 25th percentile for his actual age, so he can pass as "big for his age" if I tell them he's around 15-18 months, and that covers his delays pretty adequately. I've also given a generic "Oh, he was premature" without defining how early he was, and most people accept that at face value without many follow up questions. It's technically true too, even if that's not the cause of his delays - he was born at 36 weeks.
__________________



Visit My Blog, and come join me at the JM Blogs!
Thank you Jaidynsmum for the siggy!
Reply With Quote
  #8  
March 25th, 2010, 09:20 AM
Mega Super Mommy
Join Date: Mar 2010
Posts: 2,338
Those who do ask I don't say much more than he has autism however I've come to learn that most people have no clue what autism actually is. My son is hard to explain to anyone else who hasn't BTDT and even then seeing as what he has varies so greatly from person to person people typically just don't get it. I don't offer any explanations for him or his behavior or what I'm doing with him. I do actually help educate those who are sincerely interested in knowing what's up and not just being lookie-loos. I choose not to share most of the time with other mothers because I got tired of hearing this phrase "boys are slower than girls and he'll talk by the time he's 4 he doesn't actually have anything wrong with him you're just jumping on the bandwagon."
__________________


Reply With Quote
  #9  
March 27th, 2010, 08:21 AM
Platinum Supermommy
Join Date: Oct 2005
Posts: 41,401
Send a message via Yahoo to nvr.4.gtn
I guess I am differnet lol. All of my close friends know everything that I do about Avery, they want to know and ask and I tell them. I even call one of them after all our apointments and therapy sessions. Her dd (4) was a sensory baby, she still has quirks like OCD almost but she is good, regular pre-k and all, she does still have speech issues but she is fine.

I also tell other people because people at church mostly (not really strangers) will try to make faces and her 5 feet away, well she cna't see more then about 2 feet away so i tell them "she is visually impaired and can't see you that far away" most only ask basic questions like "can she wear glasses" which is no but she wears contacts. "wow you put contacts in her eyes?" or "when did you know something was wrong" just basic
__________________

Made by Trish!!!! <3<3<3

Reply With Quote
  #10  
April 6th, 2010, 06:13 PM
greenchild's Avatar Platinum Supermommy
Join Date: Jul 2006
Location: MN
Posts: 15,839
same here with friends, they ask, I keep them updated Kaiden's not in daycare or a playgroup - he just started playing with toys - but I have no problems talking to other moms about him. I'll say something if we are chatting and it comes up but if we're just talking about the weather I'm not likely to say anything!
Reply With Quote
  #11  
April 6th, 2010, 06:46 PM
Effervescence's Avatar Platinum Supermommy
Join Date: Sep 2008
Posts: 6,791
I guess my biggest problem with telling the other mothers about him is that when everything started happening, I did tell them things because I was seeking support, but I got a lot of judgement instead. I was told by one mom that I need to stop signing to him, and that I'd better not breastfeed Evie because look what it did to Jonah. It not only hurt in the moment she told me, but now I really am freaking out that I did this to him because I was so adamant about breastfeeding (he was failure to thrive, and we still have no clue why) and I really am terrified of breastfeeding my new baby now even though I also strongly believe that breastfeeding is the best. I guess if I hadn't talked to that one other mom, I'd probably be more open, but it also seems like when I do start to kind of explain, they start thinking down about me, but that might be my imagination now
__________________


Click the blinkies!

Thank You, Pattyandthemoos, for my beautiful siggy!
Reply With Quote
  #12  
April 6th, 2010, 07:03 PM
Platinum Supermommy
Join Date: Oct 2005
Posts: 41,401
Send a message via Yahoo to nvr.4.gtn
most babies who are failure to thrive their is an underlying condition. It had nothing to do with the breatfeeding.
__________________

Made by Trish!!!! <3<3<3

Reply With Quote
  #13  
April 6th, 2010, 07:37 PM
Effervescence's Avatar Platinum Supermommy
Join Date: Sep 2008
Posts: 6,791
I know that, in my brain anyway... and nursing was going SO WELL for us to be honest. He ate fine and I produced so much milk for him, but then when he was diagnosed as FTT, suddenly I couldn't pump for him, he wouldn't nurse in the hospital, they were real jerks about me wanting to use methods that would keep him to the breast, and my period came back that week, I'm sure it was all of the stress...

But anyway, my brain knows it wasn't me or my milk, but it's still hard to face, and even moreso when the other mothers are making comments to me about that. I think breastfeeding will be a lot harder for me this time around because of those emotions. I actually stopped going to that group for a long time, and only go to events that I know that mom won't be at. Who says that to someone anyway- that it's their fault something is wrong with their child. Really... So I just keep my mouth shut about Jonah's needs now.

I've actually been doing a lot of reading about how children who are diagnosed with a PDD have FTT at some point in their lives that was unexplained. I think it's really interesting that there have been those findings, and now Jonah is being "seriously watched" for PDD-NOS.
__________________


Click the blinkies!

Thank You, Pattyandthemoos, for my beautiful siggy!
Reply With Quote
  #14  
April 7th, 2010, 05:48 AM
quietsong's Avatar Just Another Slacker Mom
Join Date: Aug 2006
Location: Missouri
Posts: 42,367
Send a message via MSN to quietsong
WOW first off - I can't believe people told you that breastfeeding was wrong for Jonah. Good for you for sticking to it through that all hon!! I had some people telling me to quite breastfeeding Danny while we were going through all his issues, and it really shook my confidence. I'm sure it will go so much better with Evie! That's really interesting that PDD kids have FTT at some point unexplained... I agree that usually FTT has an underlying cause, it can just be hard to find sometimes. I hate that you are surrounded by so many judgmental, unsupportive people
__________________



Visit My Blog, and come join me at the JM Blogs!
Thank you Jaidynsmum for the siggy!
Reply With Quote
  #15  
April 7th, 2010, 02:02 PM
Platinum Supermommy
Join Date: Oct 2005
Posts: 41,401
Send a message via Yahoo to nvr.4.gtn
we tend tobeat ourselves up is the problem. Listen to your heart, I bet everything will be fine.

Nichole was almost labled FTT at a year. She was 18 pounds at a year and got sick, lost like a pound and it took awhile to get back, the GI told me that and when I told my ped (who I trust way more) she said she was fine, dont listen to them and to keep nursingnd she was a year old then!
__________________

Made by Trish!!!! <3<3<3

Reply With Quote
  #16  
April 7th, 2010, 03:29 PM
Mega Super Mommy
Join Date: Jan 2007
Location: Portland, OR
Posts: 3,120
Send a message via MSN to MomtoAnnaLise
(I'm lurking, not sure if my daughter qualifies as 'special needs', but I'm still trying to find a board we fit in with. My daughter is working with OT for sensory integration help and with a speech pathologist for chronic aspiration/disorganized swallow)

I don't bring it up IRL, but I've had questions asked in public about her banging her head, her weighted vest and the P's and Q's that she chews on when she is overstimulated. I have to talk about her aspiration issues with daycare providers and family because it affects how and where she can eat. I'm grateful that she is on track in most areas developmentally, but get overwhelmed by the number or therapies and appointments that we are involved in currently. I have one great friend who is an Early Intervention Specialist, so I mainly talk about things with her as she understands more about it than I do.
__________________
Mom to Anna Lise- Born 7/17/07
Missing Cleo, my greyhound girl, crossed the rainbow bridge 3/4/11
Reply With Quote
  #17  
April 7th, 2010, 03:38 PM
Platinum Supermommy
Join Date: Oct 2005
Posts: 41,401
Send a message via Yahoo to nvr.4.gtn
I think you fit in fine! ewlcome and seems you are handling your daughters needs well!!! There is a vision, hearing, and sensory board right under this one as well, but its not as active as this one
__________________

Made by Trish!!!! <3<3<3

Reply With Quote
  #18  
April 7th, 2010, 04:21 PM
quietsong's Avatar Just Another Slacker Mom
Join Date: Aug 2006
Location: Missouri
Posts: 42,367
Send a message via MSN to quietsong
Oh man, that would be awesome to have an EI specialist friend! I love our therapists and they ARE friends to me, but our conversations are always a little spun because Danny's one of "their" kiddos, you know?
__________________



Visit My Blog, and come join me at the JM Blogs!
Thank you Jaidynsmum for the siggy!
Reply With Quote
  #19  
April 8th, 2010, 08:37 PM
~JustAngie~'s Avatar ~Let your colors burst~
Join Date: Jan 2006
Location: Kentucky
Posts: 6,279
I love to tell people about Joey's condition! Mainly because so many people seem to not know anything at all about Hydrocephalus or have never heard of it! Which is crazy because it's one of the most common conditions at birth. You can't tell by looking at Joey that he has Hydro - his head is big but its in proportion to the rest of him. You can't see his shunt because his hair is covering it. All of my family and friends are really supportive, and if someone happens to ask a question, I'm more than happy to answer it
__________________
~Angie, mommy to 2 kiddos~

Reply With Quote
Reply

Topic Tools Search this Topic
Search this Topic:

Advanced Search
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off



All times are GMT -7. The time now is 11:22 PM.



Powered by vBulletin® Version 3.8.7
Copyright ©2000 - 2014, vBulletin Solutions, Inc.
Search Engine Optimization by vBSEO 3.6.0