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Special Needs
meghans30
member
Do you share your child's dx?
meghans30
member
Trev is dx with ADHD and PDD. His deficits are starting to stick out more and more. Most family members know he had severely delayed speech and probable ADHD, but now I'm wondering if I should share the ASD dx so they just don't assume his behavior is due to a lack of parenting.
Also, friends are hard to come by for him. He has developed a good relationship with a girl from our neighborhood. The mom is very understanding and I'm wondering if I should share the ASD dx with her in case his behaviors are off putting to her.
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Re: Do you share your child's dx?
Generally, yes, I'm fairly open to sharing with people actively in our lives/day-to-day encounters. Not in chats at pick-up/drop-off or super casually with other people -- but if I get to the point of a playdate with someone, I almost always bring it up. If I run across another parent of a SN kid, I'm definitely more likely to offer unprompted that I am, too. I would definitely lean toward telling the mom -- along with offering info on whether your DS knows his dx, and possibly your thoughts on whether/what is okay to share with her DD.
We told our immediate family (parents, siblings) after dx. Beyond that, though, it's really on a need-to-know basis and most people don't need to know. My grandparents, for instance -- we might see them once every 2-3 years and it's really not something I think they'd understand, and it doesn't matter if they know or not. Same with all of our aunts & uncles & cousins; all are long-distance, we only see them at big events like family weddings, and rarely communicate with them beyond Christmas cards.
We've told a few friends, as things have come up. DH has shared with some co-workers in discussions about insurance and/or kids with SN. I've liked a few SN/autism-related posts on FB, but I have so far refrained from any public statements that specifically link DD1 and autism.
For caretakers/activities, I am very upfront about it.
DD1, 1/5/2008 ~~~ DD2, 3/17/2010
As things come up - its almost I trust my gut with who to tell and who not to.
For example, in his class his teachers must know! I think I've discussed it with one parent from another class just because it came up in conversation why we don't place our kids in preschool yet both of our kids aren't enrolled.
My grandmother and some friends know because they have witnessed his speech delay as well as some transitional meltdowns and I've felt the need to explain where they are coming from. I think it helps some to understand him better, as to why we are sometimes "regimented". My grandmother has a little bit of a gossiper and I'm sure has discussed it with other family members, but its no big deal. I also feel the need to express how many people I know both family/friends have noise/crowd sensitivity issues, but only now are doctors recognizing it as a condition and not just a "quirk"
I have rolling appointments every week, and when friends/family ask me to go out with them I tell them I can't because either "I have an appointment" or "DS's therapy is that day."
Trevor seems to have a lot of positives going for him. He is very happy and is easily redirected . We are working in things like eye contact, impulsivity, turn taking, and seeing things from another's view point. He is very open to learning these things and for that I am thankful.
I'm glad you brought up the coach issue as he really wants to be on the baseball team. I do not want to hold him back, but it's going to be difficult for me to watch him struggle from the sidelines. Any suggestions for dealing with this situation?
I share on a case by case. I had/have a really hard time with the dx in the beginning. As the shock has worn off and now it's all about the daily living with it, it's become easier but I'm still reluctant to share. I do if I have to - like when we were at the ped's office and it was super crowded and I could tell Chris was about to lose it, I explained to the receptionist that I wasn't asking for a pass or to "jump the line" but that DS was autistic and did not do well in a crowded room like this. They promptly moved us to an exam room and were very accommodating. Lesson learned - if it will help him, share; if it just helps me - not so much.
We haven't shared with a lot of family, only immediate. We warned my MIL because she's a sharer - a big time sharer. Thankfully she's complied.
I would share with the girl's mom like you said - just in case any of his behaviors are ever off-putting. It may also help with any questions her daughter may have about something your son may do during a play date.
No. The only people I've told are my parents. Fetal alcohol syndrome has such negative connotations attached to it, I feel that in most cases, it will only result in people trying to limit M's possibilities.
Right now, we tell people who work with him and need to understand that M has delays that he has a "cognitive delay." Once we explain the full extent of his diagnosis to M, and make sure he understands that it isn't public information, we will share it with people who need to know only when we feel that they will continue to work with him to help him reach his personal greatest potential (and not just what they think a person with FASD can achieve).
My sharing any or everything is dependent on the situation. I don't necessarily state that my son has CP unless I am asked somewhat tactifully what may be wrong with my son (ex: I don't post a lot on FB but enough for my friends to realize I have a SN child; one friend finally PM'd me after a post inquiring as to what diagnosis my child had and to only answer if it wasn't too personal).
Otherwise, my sharing has been more DS2 can't do X. Like for aquatic therapy I have to change my almost 3.5yr old on a bench (laying down like you would for a baby) in the dressing room. I hate holding up other people so if I think they are waiting for me I may say something to the effect of "I'm sorry if you are waiting on us. My son isn't able to stand up to do a clothing change. We are almost done."
I guess I'm a bit different, or our circumstances are a bit different. But, everyone that I know, everyone my husband knows, and I'm pretty sure, everyone my parents know are aware of Lily's various diagnosese.
You see, when Lily was born 3 months early, nearly everyone needed to be informed (my work, MH work, my family), and then I felt like it should be announced on facebook too (I mean, it would be silly if I pretended to still be pregnant). Over the few days / weeks that followed, so many people became concerned about Lily and everyone started asking for updates. So, I ended up just updating whenever something popped up... Lily's trach, her G-tube, her CP... It just became a routine that MH, my parents, and I all fell into.
Now, I don't inform every stranger we meet. But, I wear a lot of butterfly jewelry, and whenever someone comments about it, I always tell them, "Thank you! Butterflies are the symbol of Cerebral Palsy awareness, and my daughter has CP." Sometimes people say sorry, sometimes people share about the special needs children in their life, and sometimes people think it's pretty cool that I am so "fearless" to share about my daughter.
And, I guess, as time goes on, Lily's disabilities will become more and more apparent. And, I just don't see any reason to try and hide it. I mean, if I tried to hide Lily's diagnoses, it would be like I was trying to hide Lily. And, then, I would be sending the impression that I was ashamed of my daughter and her diagnoses, when nothing could be further from the truth.
But, like I said, our situation is different. Lily has different dxs than your child. Lily doesn't look like every other kid, nor can she play like every other kid. And, that makes a difference when it comes to who, and how much I share.
I did not know this!
I did not know this!
Well, that's at least what Pinterest has told me.