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[quote=Anonymous][quote=Anonymous][quote=Anonymous][quote=Anonymous][quote=Anonymous][quote=Anonymous][quote=Anonymous][quote=Anonymous][quote=Anonymous][quote=Anonymous][quote=Anonymous][quote=Anonymous][quote=Anonymous]I am in a similar boat, except I also have 2 kids with SN although milder. My nephew is not yet speaking much.

We do a lot of traveling to see them for the holidays and to keep routines in place. We stay in hotels and visit their house so that everyone has spaces to retreat to if needed. I do a lot of coaching/ answering basic questions for our parents in terms of what to expect based on info Inget from my brother.  That gives them space to say unhelpful things like “shouldn’t he be *** by now” without my brother and sister in law having to put up with that. (This is at my brother’s request.)

I have also tried to visit with their family with just me. When my kids or parents are there, I am busy managing those interactions.  I want to know my nephew and for him to know me outside of the chaos of big family visits.  So this looks like me traveling to them whenever I can and just hanging out while they do their regular activities.  This is earned me a nickname from my nephew that is in his communication device. I am jellybean since I once brought him purple jellybeans. ( If he had another sibling I would want to spend separate time with them too.)

It means a lot to me that my nephew will sit next to me when I visit. I sometimes get a high five or a hug too.  It has taken time to build that relationship, so I encourage you to invest that time if possible. [/quote]

You sound like a wonderful sister and I love that your nephew's name for you is jellybean. I am so grateful for my sister who runs similar interference with my unhelpful and judgmental parents. [/quote]

OP here.  Did you ask your sister to run interference or did it just sort of happen? Sounds like the first PP's brother asked her to play that role, but I'm curious how it came about for you. My brother hasn't asked me to do anything like that yet, but our family tends to be judgmental and uninformed about many things and my brother has already made comments to be about how he expects to hear a bunch of criticism when he shares his child's diagnosis (he hasn't told anyone else yet). I'd gladly run interference for my brother if he wants me to, but I don't know if he'd ever come out and ask me to do so.  I'm trying to stay in my lane while also being as supportive as possible.[/quote]

We're in a similar boat to you, OP. Except in our situation there's been no mention whatsoever about a diagnosis other than niece is now going to a "special" school. Otherwise we know nothing else. I know every family is different but perhaps your family may react better than your brother expects. These children are loved (or at least they should be) by their family members and it is not easy to be in the dark and confused about what/how/if we can help or how we can support them. Obfuscating isn't good either. [/quote]

I’d urge you to reflect upon your actions/comments and consider why your family members clearly haven’t felt comfortable disclosing additional information to you. As the mom of a disabled child, I don’t share a lot because people’s responses are often painful. I have enough to deal with. [/quote]

TBH there are no actions, comments or responses to reconsider. When visiting we have said ZERO about development and only play, love and enjoy our niece where she is in the moment. When parents' brief comment was made about enrollment in the special school we said it sounded like a great school, that niece would surely do well there, and said absolutely nothing more. I understand where you are coming from in your situation but not all family members are judgmental and critical. [/quote]

I'm confused as to why you think you need/deserve to know more about your niece's sensitive health information? Her parents have disclosed she is going to a special school, and you say everyone in the family loves and supports the child, and "enjoys her where she is in the moment". Sounds like you should just keep doing that.

This desire to know more seems to be more about satisfying your own curiosity. Will it change how you feel or act around her if you know that she is autistic, has ADHD, an intellectual disability, etc? If you are being as sensitive as you say you are, then just keep meeting and enjoying your niece where she is. [/quote]

This is not about curiosity and to say so is more reflective of your mindset than ours. Perhaps if we knew what the diagnosis is we could find a support group which would help educate us with professional guidance and we could all navigate this in a comprehensive way for the long-term best interests of our niece. We have a nephew who is diabetic and we all know his condition so that we know what we need to do/not do to support him. Doesn't it make sense to have the same information to support our niece the best way possible? [/quote]

It's still odd to me why YOU are the one that needs the support group. You aren't this child's primary caregivers. Just love and support her and her parents. There isn't a magic solution here. Also, as those of us with neurodivergent children know, the labels that get affixed them can change over time as new and different evaluations are done. Another thing to keep in mind is that ADHD/autism/etc. present differently in different people. So even if your relatives tell you your niece has been diagnosed with someone, it doesn't necessarily mean that is the final/real diagnosis. Diabetes is much more straightforward in some ways. Developmental disorders are much murkier. Just be there for them and stop feeling sorry for yourself that you don't have access to your niece's entire medical history. [/quote]

"Diabetes is much more straightforward in some ways." This statement is proof positive that YOU have no idea and zero empathy for how horrific and daily life-threatening T1 is for a child. Shame on you.  [/quote]

It's more straightforward diagnostically.[/quote]

You are incredibly cold and insensitive. You, and anyone in your family, is to be pitied. [/quote]

I don't see how it is "cold and insensitive" to say that diagnosing t1 diabetes is straightforward. Obviously the condition itself is very challenging and scary. But diagnosing it is a blood/urine test. [/quote]

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