How did you tell extended family about DC?

[Anonymous]

My family doesn't live nearby and doesn't really get that DS has issues, which we are currently working on with therapies, dev ped and medical testing. I am pretty broken up, feeling a lot of shame and guilt as it becomes increasingly clear that there is a long road ahead of us in terms of development. I hate talking about this because it makes me so uncomfortable, because I'm tired of talking about it and because I don't have any real answers. Did you make any kind of big announcement to people who don't see your kid everyday, just avoid the topic, gradually let them figure it out?

[Anonymous]

I took the 'operator' approach. Both my husband and I come from families that aren't so great at communicating, so we each told our mothers and then let word spread as it may. We really don't see our relatives too much so I am not too worried about what they know or think. Our real struggle was telling our close friends that we see often, and that was definitely difficult. I know it's tough, but try not to worry so much about what everyone thinks/knows/assumes. Best wishes!

[Anonymous]

Whether you email, announce this to a few close people, or just respond to direct questions -- that's something that's always tricky. For one thing, you may never have clear "answers" or a diagnosis to announce other than developmental delays. Many people will press you for diagnosis, prognosis, timing after you make a broad announcement. I find that what happens inevitably is that in each and every follow up phone call or email the first question is something like "Is Michael over his delays?" "Is Michael walking yet?" "Have you gotten an answer to Michael's problems?" I don't need that kind of pressure and while I don't blame people for asking, and I think THEY think they are being supportive, the constant pressure to produce a normal child, a diagnosis, a prognosis, a cure, just becomes too much, and adds to the guilt/shame cycle.

I recommend answering questions that come up. If you want to tell grandparents, use simple non-medical terms -- he's not meeting some milestones, you are getting him some therapy recommended by doctor.

[Anonymous]

I took the gradually the them figure it out themselves approach. With my son, there isn't anything about his appearance that would clue you in to the fact that he's special needs. But, you don't have to spend a lot of time with him to see that he's not like other kids. We don't really talk about it much because there isn't much to talk about except services and that's either boring or too emotionally charged for me to feel like talking about with people who don't see him that much. Every now and then, I'll decline an invitation because I don't think my son can handle it or I'll stop in just to say hi and leave pretty quickly. Or, we'll have a really great progress that completely surprises us and I'll share that. But that's about it.

[Anonymous]

When we found out after much testing, research, etc that our son likely has HFA I called each of our (dh and mine) parents. They had known that we were looking into things, so were asking anyway. I called, and said, "Ds was found eligible for Special Education services because of a suspected diagnosis of HFA" (diagnosis since confirmed by a dev. ped). I was floored to find how supportive they were, my MIL actually spent lots of time researching on the internet to learn more, and in fact, said "if you need any money to help pay for therapies, let us know". (we were ok, insurance has covered so far). I am not sure, what has gone beyond them, with the exception of a family party where my stepsis (a social worker) told me about some recent training she had that might be helpful (it was applicable). So, all in all, our experience has been very positive. Since our families are all out of town, they do not see us on a daily, or even monthly basis.