How to help brother with ASD child

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote: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.

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.

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.

Let your brother and your wife tell the rest of your family themselves. You do not “run interference” for them.

*his wife

I wasn't talking about sharing the diagnosis with other family members. I am not going to do that as it's not my place. I was responding to the PPs who specifically referenced "running interference" for their siblings in terms of answering questions that the parents have. That I would be fine doing if my brother and his wife wanted me to in anticipation of judgmental comments they would likely get about treatments, etc. Maybe that wasn't clear in my post.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote: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.

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.

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.

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.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote: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.

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.

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.

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.

I understand and agree to some extent. If it was my child, I think I would be more open about it with my family and let them know ways in which they could help support my child. But it's not my call to make and for now, my brother isn't going to share information with anyone else in the near future. That may change over time. My family has good intentions but some of them are very opinionated and not well-informed, so I understand my brother's hesitation--and if I could, I'd gladly take the burden off my brother and his wife to deal with any such unhelpful and hurtful comments.

It sounds like you're in a difficult spot with wanting to help and be supportive but not having much information about your niece. I'm sorry to hear that!

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote: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.

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.

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.

I had shared with my sister about the health/behavioural/developmental/etc. issues we were having with our child as we were going through all sorts of testing, evaluations, interventions, and therapies trying to sort out what the diagnoses may or may not be. I had talked about some of these issues with my parents and found them to be supremely unhelpful and frankly judgmental so I had zero interest in disclosing anything further to them. So, my sister was really my only family support. I don't recall asking her to "run interference" but because she is so supportive, sensitive, and accommodating to our difficult situation, she has been really helpful in managing my parents. For example, my mom wanted to plan a 1-2 week family vacation involving a 12 hour flight to the destination and shared accommodation. Before my mom really had a chance to push it too much with me, my sister intervened and suggested a much more manageable trip that was driving distance and allowed my family to stay nearby but not in the same house as my parents.

It's tough because I do wish I felt comfortable sharing more with my parents, but I just really don't, given how they reacted when I have tried to talk to them about it before, coupled with how I've heard them talk about their friends' children/grandchildren who have special needs/disabilities. I feel forced to keep them at a distance. I'm sure they can tell things aren't completely normal with our kid and they dance around the topic somewhat but so far I haven't been able to bring myself to trust them with any additional information. I'm sure this is not a sustainable approach, but it's where I am right now, given how challenging and exhausting everything in my life is. Luckily we now live very far away so only see them 2x a year if that. I'm able to avoid them.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote: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.

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.

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.

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.

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.

[Anonymous]

Anonymous wrote:Honestly, the best thing you can do is love his kid. Don’t be “tolerant” or “accepting” or “inclusive.” Be the president of his fan club. Ask about him, celebrate his accomplishments, cultivate a relationship with him. My siblings all try to be supportive but none of them really treat my kid like the other nieces and nephews.

This! Best advice.

[Anonymous]

As the parent of a child with ASD and intellectual disability, I would love family support. To me that would mean, they would stay in a hotel when they visit us, because I'm not up to hosting guests, and they would give my kids some attention. And they would understand that we don't travel, but it's not because we are jerks, it's because we're struggling.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote: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.

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.

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.

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.

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.

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.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote: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.

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.

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.

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.

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.

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.

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.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote: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.

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.

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.

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.

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.

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.

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.

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?

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote: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.

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.

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.

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.

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.

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.

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.

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?

You support your niece by loving her for the child she is. Her parents are doing the heavy lifting. Why do guy need to know more?

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote: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.

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.

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.

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.

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.

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.

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.

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?

It doesn’t mean you are doing something wrong, necessarily. It means they aren’t up for talking about it. They could be still figuring it out, looking into a second opinion or just grieving/adjusting their expectations. You don’t necessarily need a diagnosis to go to a special school; one was suggested for my DD when her private could not meet her needs but we did not know what was going on yet. Or some one was horrible and they don’t want to risk being burned. Or they decided to take a blanket approach to informing all family members and someone in your family sucks. They are probably doing the best they can.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote: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.

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.

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.

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.

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.

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.

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.

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?

It doesn’t mean you are doing something wrong, necessarily. It means they aren’t up for talking about it. They could be still figuring it out, looking into a second opinion or just grieving/adjusting their expectations. You don’t necessarily need a diagnosis to go to a special school; one was suggested for my DD when her private could not meet her needs but we did not know what was going on yet. Or some one was horrible and they don’t want to risk being burned. Or they decided to take a blanket approach to informing all family members and someone in your family sucks. They are probably doing the best they can.

+1
I don't think PP is doing anything wrong either. I just think some parents take longer to adjust and be comfortable talking about it. There can sometimes be a long mourning period for parents who expected a particular sort of life for their child and it's possible that if you have typically developing children it's painful for them to talk more openly. You sound like a great sibling and I suspect they know you are available if they do want to share more in the future. In our area there are so many "perfect" children or children who appear to be perfect and high achieving on the surface that I think it can feel stressful and shameful like they have done something wrong to talk about challenges. I really feel for them because it must be really isolating not being able to share with you.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote: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.

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.

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.

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.

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.

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.

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.

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?

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.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote: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.

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.

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.

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.

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.

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.

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.

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?

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.

"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.