Relative question: when is it okay to ask?

hlke · August 2012

My nephew (wife's brother's son) is a special needs child. We know he has a speech delay and that he is going to a special preschool. Other than that, no diagnosis has been shared with us.

We don't see them that often, but when we do it is very clear how behind nephew is. He's two years older than my niece (my sister's daughter) and seems behind her in speech.

We know he is getting services and that of course his parents are doing everything they need to be doing. But is it ever okay to ask about a diagnosis? Most importantly, I want to better understand our nephew's limitations, what hurts and what helps, where he's at developmentally so we can make sure to get him appropriate gifts, and how to better interact with him when we see him. I'm somewhat close with SIL and can probably at some point ask all those things directly, and I don't necessarily need the diagnosis. I guess the other reason I'd like to know the diagnosis is to have some idea of what the future might hold, and how we can best support BIL and SIL. It's also hard for me to understand why they are keeping the dx so close to the chest when nephew is so clearly behind.

Assembly_Reqd · August 2012

In terms of gift giving you can always call the parents before you make a purchase and ask for some good ideas. Gifts are gifts and a special need child likes toys like any other kid. No need to buy with a diagnosis in mind. If he needs something therapywise his parents or therapists will get it. Be part of the fun-side of this boy's life until you are invited to the not-so-fun side. (if there even is one)

If they need or want your support they will ask for it.

Maybe the diagnosis is not final or maybe it is and the parents don't want their child defined by it.

Aren't you already defining this little person by his speech delay? He is a child first. Unless he has some sensory issues, the diagnosis or lack there of should not affect how you interact with him.

Sorry, but you sort of have to MYOB on this. So the answer to your first question is 'never'.

hlke · August 2012

Rereading my post, I'm not sure the diagnosis is what we really need. What I'd like is just a little bit more information.

In terms of our interacting with him, he can be very difficult to engage in play, and it would be helpful to understand how to do that a little better. He also seems to get riled up easily and oversimulated. FIL is constantly engaging in play that "riles up" our nephew. In terms of gift giving, I honestly really don't know what toys are appropriate or appreciated. In the past we have gotten age appropriate gifts (shape sorting boxes, puzzles) only to see he clearly wasn't ready for them (couldn't orient the shapes or puzzle pieces to get them to fit, got frustrated or gave up). He seems to do better with gross motor toys, but you can only give a kid so many balls. We will ask for gift ideas, but DW constantly wants to buy educational toy gifts as we run across them, but we have no way to judge if they're developmentally appropriate.

I don't think we define our nephew by his speech delay. He is our nephew and we love him and want to be the best aunties possible. But it is very confusing to love a little one and feel in the dark as to what is going on. For four years we were told "nephew just does things when nephew is ready" and the speech delay explanation started when he started special preschool.

I realize none of this changes the fact that this probably is a MYOB issue. But I wish they realized that without more information, we are just left guessing and worried, especially since he seems to be falling further behind as he gets older.

Assembly_Reqd · August 2012

hlke:

But I wish they realized that without more information, we are just left guessing and worried, especially since he seems to be falling further behind as he gets older.

I see where you are coming from and how frustrating it can be. You want to help but don't know how to without more information.

It also may be case of where one parent wants to be open about it but the other does not. I am in that situation. Our family knows proabably about 25% of the stuff going on with Nate. This board knows pretty much everything cause I have to "get it out" somehow and get some advice. So, even if your BIL SIL are not getting support from you, they may have another source that is not so close to home..

Maybe some others can give you some ideas. The only thing I can think of is to be open and ready for when they need you. I think you are already there though

hopanka · August 2012

Don't ask. They will share, if they wish. They don't really owe you any info regarding a dx or a prognosis, which those questions are very painful anyway, as most of us are left in the dark about prognosis and it keeps us awake at night.

hlke · August 2012

-auntie-:
It's really best not to compare children. There's a great deal of truth to the old saw that all kids develop on their own unique timetable. Not sure if it's your intention, but the post comes off almost as if you're comparing the two families with your sister's kid flourishing and your wife's nephew being behind.

Very good point. That wasn't my intention at all, just the other little kid I interact with on a pretty regular basis.

You know, honestly a huge amount of this could be solved by getting DW to lay off the "educational" toys. He'd love a truck or a play aquarium (he loves fish) or any number of little boy toys.

Thank you very much for your honest feedback. It helps me to understand a bit more why they may be not forthcoming about it, even though we are family. And that I can just play with him, even if engaging him can be difficult, without "messing it up". Last time I saw him (a few weeks ago) we colored together for a little bit and then he kind of was done with me. He's also just a shy kid, and I think family gatherings overwhelm him a bit too.

ToastieSimons · August 2012

hlke:
It's also hard for me to understand why they are keeping the dx so close to the chest when nephew is so clearly behind.

My son's have a genetic mutation. End of story. The only people we've shared the actual name of the diagnosis is my parents because they're extremely involved and have watched my son while we went away. My brother knows we have a diagnosis and that my mom was tested. When she came back negative we never gave more information.

It's really bugging me that you feel "entitled" to have this information.

You know why we don't share it? Because of relatives like you. Who are going to google it and then try to offer us advice or question our decisions or way we care for our children. People who are not deeply involved don't have privilege to it because it's simply irrelevant to them. My children are still little boys. They like to get dirty, play toys, read books, laugh, watch baby einstein and just be loved on.

Knowing a diagnosis won't change anything for you so I'm not so sure why you think they "need" to share it.

hlke · August 2012

ToastieSimons:

It's really bugging me that you feel "entitled" to have this information.

Well, I did come here to ask advice before I brought it up. And I've also lurked here enough to see plenty of people give advice to parents to offer a diagnosis or a clear explanation to help explain their child's difficulties when they come up. I think I made it pretty clear that what we are seeking is more information about what is going on for purposes of understanding better, and made it clear in my second post that the actual diagnosis isn't really important.

I've heard the "mind your own business" refrain loud and clear. You are right that the diagnosis itself doesn't actually matter.

annibes · August 2012

I shared DS' Autism diagnosis with my family and was met with words that were meant to be encouraging but felt dismissive and unsupportive, so I don't really feel like talking about it anymore. They might not have a diagnosis, or of they do they might be dealing with their feelings and not ready to share, or if they have already tried to share they might have been conditioned not to share more. It can be difficult coming to grips with having a child with needs, no matter how extensive or subtle. I've found that people get it (often, those tend to be the folks who have been there) or they really don't. It's great that you want to be supportive, but keep in mind as you're buying gifts: even in the special preschool, your nephews therapists are treating the BEHAVIORS he is demonstrating- not a Dx. You've already nailed that- you said he likes gross motor. So get creative- sports equipment, bike, trampoline with a handle, passes to a water park, rent him a bounce house for his bday party, a sled, etc. Look on Lakeshore or Learning Resources online stores for smaller ideas.

bumpuser511563 · August 2012

We choose who we want to tell when it has to do with DS's special needs.

I have shared everything with my parents because they are the ones that understand and are supportive. My DH does not know that I have shared this with my parents. I told my parents in case DH is not on board with any diagnosis. I have also reached out to here on this board and friends.

DH's family does not know anything. MIL sees the speech delay but does not know the private therapies we take him to. She is one person that would not understand and would be quick to blame me for DS's disabilities.

st.augbride · August 2012

I think this depends on the parents and the diagnosis. Ds has been through a lot. We've been very open with our parents and very close family (BIL and my cousin) , and my best friend, and even though they know it all and love ds so much, they still don't always 'get it' and come out with some really hurtful comments sometimes that undermine the amazing amount of progress he's made and how hard my precious little boy works to do what comes naturally to other kids (totally not realizing it, but thinking they are just asking caring questions). So, we're very careful about who we talk to and what we say, especially with people who have children and would attempt to compare. I think if someone else asked me about it, I'd probably be somewhat defensive since I'd view it as judgment on ds. Since it sounds like you already know that the parents are handling things, I'd probably just let it go and treat their LO like you would any other. If a gift isn't the best, the parents can decide and exchange it, so just give a gift receipt. Many of us never even get a diagnosis.

hlke · August 2012

Thank you to everyone for your responses. After some reflection, I've realized I already really know what I need to know - dear nephew has some speech delays we've been told about and probably some sensory issues from things we have observed. We can help most by treating him like any other kid, not comparing kids (we don't do this in general, and I regret my comparison here), and asking for gift ideas and focusing on gifts that play to his strengths and interests.

If and when BIL and SIL want to share any more with us, we'll be here to be supportive and hopefully say the right things. We know this has been a struggle for them, even though they haven't talked about it to us directly, and it is difficult to see them going through something hard and not know how to help. We'll continue to be here and love their kids and be respectful of their boundaries. I think that's the best we can do.

Florak8 · August 2012

Good for you for caring! And I do believe that is at the heart of your post. You care about your family and you want to be supportive. And as people here have said, sometimes the best support is just being available for when people are ready to share. The more time you spend with the family, the better you will be able to understand their needs.

It is part of the way the human brain is wired to want to categorize things. If we did not file and categorize input, we would be on sensory overload every time we walked into the same room. Instead, we realize we "know" the room and can focus on what is important or different. Many of us here would love to know, "Oh, my child has X diagnosis and can expect to have the following challenged." But we don't get a diagnosis, and we just have to focus on what issues we see day by day. Sometimes that is very hard to accept, and then having people ask about it (especially ones who don't seem that interested in us otherwise) can be hurtful. We can come off as defensive at that point. Sooo, even though your brain might be itching to know and understand the situation, reign it in with sensitivity to those issues.

GL!

MirandaHobbes · August 2012

I won't regurgitate the myob refrain from above- it's all valid.

However I will make a note about gift-buying. My 4 yo son has autism and it's very hard to buy toys for him. For the most part he'll enjoy the same toys as any other kid, but most lose their luster after the first few minutes. I had family members ask me what to buy for him. I am tired of accumulating toys that he doesn't play with so I offered some ideas of things I knew he'd be interested in. A family member told me that she had googled "toys for kids with autism" and found this really complicated puzzle-type game. The age range was over my kid's age (and maturity-wise my kid is already delayed, so it was many years over my kid's age.) Anyway I told her that it was over his head and she needed to find something simpler (for a 4yo boy, fyi, I suggested fun water toys, crazy sprinklers, sand toys, beach toys, etc-- or Disney movies). My family member argued that I should be working harder at getting him to play with other toys and I tell ya, it was quite a turnoff to have someone who is not living this day to day explain to me what I should be doing. For the record- my family member was right that I should be working on the types of toys that are hard for him (imaginatory toys, for example) but that's for me to decide. I think that's why the responses are so strong here on the Bump, we're all a bit haggard from dealing with mostly well-meaning family members who want to tell us how to raise our kids.

hlke · August 2012

MirandaHobbes:
I won't regurgitate the myob refrain from above- it's all valid.

However I will make a note about gift-buying. My 4 yo son has autism and it's very hard to buy toys for him. For the most part he'll enjoy the same toys as any other kid, but most lose their luster after the first few minutes. I had family members ask me what to buy for him. I am tired of accumulating toys that he doesn't play with so I offered some ideas of things I knew he'd be interested in. A family member told me that she had googled "toys for kids with autism" and found this really complicated puzzle-type game. The age range was over my kid's age (and maturity-wise my kid is already delayed, so it was many years over my kid's age.) Anyway I told her that it was over his head and she needed to find something simpler (for a 4yo boy, fyi, I suggested fun water toys, crazy sprinklers, sand toys, beach toys, etc-- or Disney movies). My family member argued that I should be working harder at getting him to play with other toys and I tell ya, it was quite a turnoff to have someone who is not living this day to day explain to me what I should be doing. For the record- my family member was right that I should be working on the types of toys that are hard for him (imaginatory toys, for example) but that's for me to decide. I think that's why the responses are so strong here on the Bump, we're all a bit haggard from dealing with mostly well-meaning family members who want to tell us how to raise our kids.

I totally understand. And I have to say, NOT wanting to do that is at the heart of my post. There is, of course, all kinds of family dynamics that are going on at the same time as everything else, and I know that appropriate, non-judgmental gift giving is really important to SIL. We had a conversation the other day about how our MIL bought her daughter (my niece) a boatload of pink clothes for her birthday, when they are trying to not be super gender stereotyping parents. A day later DW proposes we buy niece (2) and nephew (5) a floor puzzle of the United States that I think probably isn't the right level for either of them. DW loves educational toys because she feels like she was deprived of things like that when she was a kid.

Our next gift-giving occasion is nephew's birthday, and I will pow-wow with SIL for ideas. We spend a lot of time rolling our eyes not understanding our spouses' family, and I know she'll appreciate that I asked. We don't feel it's our role to buy therapeutic toys or things to "help" dear nephew, we just want to get him stuff he'll like, when he can be a bit of an enigma. I also don't want to get him stuff that is too young or underestimates him. I used to babysit for a kiddo with CP and I know that in her case, her mom started to discourage "too young" toys when her daughter reached school age, because she was worried her daughter would be teased for liking "baby" things.

I'm trying to be sensitive and I'm probably overthinking. I think more open communication on my part about what he likes and what SIL thinks is best is probably the solution.

hlke · August 2012

And really, everyone, thank you for your patience and thoughtful answers. You helped me to think this through and helped me to see it from SIL and BIL's perspective. Not every board is so patient with naive questions.

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