Have you shared your child's special needs diagnosis with family members?

[Anonymous]

I ask this question with all due respect and the extreme sensitivity that should accompany such a question.

If not, why?

I ask because my nephew - 2 years old - is clearly a special needs child. He has a variety of delayed development symptoms which his parents noticed and took him to experts for numerous evaluations. The experts provided a diagnosis, which my nephew's parents will not share with anyone. The family is unaware of the severity of the diagnosis and wonders what is going on, but we're too afraid to ask any questions since they clearly don't want us to. (If it matters, I don't believe it's a terminal diagnosis.)

It's been more than 6 months since the parents received the diagnosis.

How should the rest of the family proceed? We're just keeping quiet for now but want to be a source of support. Is that the best course of action?

Thanks very much for your insights.

[Anonymous]

OP here - somehow the question got cut off in my last post, but it's the same as the subject line.

Have you shared your child's special needs diagnosis with family members? If not, why?

Thanks.

[Anonymous]

The parents are probably still processing and coming to terms with the diagnosis. Telling extended family (ie: aunts,uncles,cousins,even grandparents) "what is going on" is probably a low priority. They will share sensitive issues about their child when they want to and when it is comfortable for them. When they want and need your support, they will probably ask for it.

[Anonymous]

I know in my case -- my daughter has CP -- there are a number of reasons why. First, it took a long time and we went through several different diagnoses: hypotonia, developmental delays, white matter syndrome, before we got this. Also, sometimes a diagnosis is not really a diagnosis. Both developmental delay and CP are catchall terms. It's like saying someone has a headache. It doesn't really answer why. Sometimes you never get to know exactly why.

My parents can be difficult and when I tell them their granddaughter has been diagnosed with CP they want more and more tests -- as if that can "unprove" the CP or "get to the bottom of it." Their idea seems to be that when we "get to the bottom of it" there will be a pill, vitamin, or diet that will treat it. This is a form of denial. My father has also made comments like my daughter "needs to get up off her ass and start walking." This is difficult for me to take.

I guess I'm kind of prickly too. I think in the last year my parents have finally clued in that my daughter really is handicapped, and my father has started saying things like "This must be very difficult for you." Which on the one hand is great because I feel like they are getting past their denial, but on the other hand, makes me feel like is unfair, because she's such a great kid and on a day to day basis not difficult at all.

Okay, this is kind of rambling, but I guess I'm trying to communicate that there can be a lot of difficult dynamics in a family, and communication problems don't just clear up when someone has special needs.

[Anonymous]

What makes you think your nephew's parents are unaware of the severity of the issues? I am the parent of a special needs child and I have not shared the details of my son's issues with any of my extended family. My person reason is that our son has great potential and a good prognosis, and I want to avoid labels following him (even by well-meaning relatives). I also believe that my son is entitled to privacy about his health just as adults are. That being said, although I don't share his diagnosis or other details, I am by no means in denial; we are very aggressive in terms of the interventions we have put in place. It's just that we feel it's no one's business.

[Anonymous]

Receiving a diagnosis can be a crushing, traumatic event. They may not be able to talk about it without losing their composure. Give them time, but it is okay to let them know that you care and that you are there if they need you. This can be shared by sending a card or letter.

It took me a year before I could even admit to my own parents and in-laws that I was only pretending to be fine, and that I was actually an emotional basket case. I learned over time how to talk about my son's illness. I took antidepressants for two years, after having been a naturally cheerful person up to that point in time.

They are grieving, and should be given the emotional space to do it in their own way. They may simply be overwhelmed as well, and figuring out how and what to tell family members may not even be on their radar.

[Anonymous]

OP here. Thanks for your responses so far - they are much appreciated. Previously, this was a very 'open' family that sees each other often, so the silence on this issue is loud, so to speak. Your insights are very helpful.

14:18 - I see where my wording was confusing in the original post. The words "the family" refers to the rest of us (i.e., aunts, uncles, grandparents, etc.) and not the parents of the child. I meant that we all were unaware of the severity of the issues, not the parents.

Thanks again for sharing these personal experiences.

[Anonymous]

Sometimes, it is not clear what the true diagnosis is until a child gets a little older. In our case, we had a clear case of SPD but it was unclear whether there was also a spectrum issue. We did not share this detail with everyone and are very glad because many of the issues have been outgrown now and we only seem to be facing SPD.

[Anonymous]

Only my child's grandparents know the complete diagnosis of our child. This is not to be mysterious, to hide anything, or to keep extended family in the dark, but due to most reasons that the PP's have mentioned. We especially share the experience of the poster who stated that their child's diagnosis holds several stereotypes, is a blanket diagnosis, and at our child's young age, could take many different directions (hopefully the positive ones). We might have it 'easier' than other parents, in that our child was born prematurely, and our extended family and friends are okay with that explanation, that our child is still experience the affects of early, low-weight birth. Please don't be offended if the parents are not sharing all. Either they will with time, as they grow comfortable with it, find more information on the diagnosis, or when they have a better understanding of their child's future and outcome.

[Anonymous]

We did not share the informatio about our son with anyone. We felt it was none of anybody's business. I happen to have a sister who is an overly inquisitive and competitive kind. She drove us crazy insisting that we get a dx and then went crazy when we would not share it with her. Then when her son was born he clearly showed issues. However, she went into denial and refused to even have him evaluated at all. Finally he started preschool and his teacher mentioned it to her as a problem. But she still refused to get him evaluated. So it depends on the reasons as to why the family needs or wants to know. If they need to know because they can help in some way, then perhaps it's a good idea to share the dx. But if they have no reason to know, then in my opinion, why share it. It will only stimagize the poor kid and make others perceive him differently. Just my opinion. I understand that others may feel differently.

[Anonymous]

OP here. Thanks for your responses. I'm sad that the family isn't viewed as a means of support, but that's not the most important issue, obviously. Of course we love our nephew no matter whether we "know" or not. Clearly I can't imagine how I would handle the info if it was me. Thanks for sharing your thoughts.

[Anonymous]

While I know that people are generally well-meaning and sincerely concerned, I have felt numerous times that friends/relatives, in asking questions about my child's "label," are at the same time reveling in the knowlege that their children are not the ones with special needs - that they have perfect kids, but are trying to be sympathetic to those who don't have it as good. Obviously no one wants their kids to have issues, so I don't entirely fault them for this outlook, but it does make me less inclined to talk to them because I feel that they are somehow putting themselves and their children on a higher level, which makes me extremely uncomfortable.