How to support/understand SIL and BIL with their DD, who has delays...

[j*east]

Thanks! I appreciate all of your thoughts. Thank you especially for sharing your own experiences. I can certainly relate to the infertility analogy. I'd love to say more, but I'm kind of in a rush at the moment...

Can anyone speak to the lack of diagnosis thing? Is that normal? MIL seems really concerned about this, but I don't know if it's typical to be undiagnosed or what, and of course I don't want BIL and SIL to have to educate me on top of everything else. Anyone?

Thank you again for all of your help and insight.

[looch]

I am certainly no expert in these matters, but if I were your BIL and SIL I would be looking for a ped that had experience in dealing with children with delays. I'd hit the roof if a doctor told me my child wasn't bearing weight on their legs because they were unmotivated. My brother has lots of issues and the best thing my mom did was switch his pediatrician. He was much better connected to specialists than our previous ped. With respect to an official diagnosis, I do think that sometimes there are cases where there isn't a specific diagnosis that can be given. As an example, also with my brother, he's 28 and doesn't have an official diagnosis, after years of tests, including muscle biopsies when he was a baby and chromosomal testing as a young adult. He was also one of those "one in a million" cases, as all of the testing my mother had during pregnancy didn't point to any potential problems. Best of luck, I know these kinds of situations can be really tough on families.

[Pine Tree]

Sometimes doctors have no idea, and sometimes parents just don't want to tell people what the doctors have said. We never told MIL that the neurologist thinks DD had an in-utero stroke, just brushed it all off when we talked to her. In fact, I don't think we ever told her we took DD to a neurologist. Just wasn't worth the drama. Maybe the doctor is incompetent, or maybe the MIL only knows some of the story. I had a friend who's DS needed a feeding tube put in during surgery, the MIL called and asked how the HEART surgery went. You just never know.

[Kanga]

I don't have experience from either side, so take this as .02 worth.

I would keep trying to call them. You can try having your dh call his brother, you calling SIL, etc. I would ask about them, not how their dd is doing, and not mention anything about my kids unless asked.

As far as not having a diagnosis, I don't think it's a huge deal as long as the medical staff is working towards finding one and exploring what it could be I wouldn't worry too much. Sometimes the child needs to be a certain age for some diagnosis, or she might have some symptoms of one diagnosis but not quite fit it completely so the dr. is hesitant. I'd much rather my dr. be thorough and sure of the diagnosis, especially when you hear of some that are too quick to use ones like autism, add, adhd, etc and are sometimes wrong. And of course, they may know more than what they are telling anyone. They may be in denial that there is anything "wrong" with their dd, or they may view it as very private and not something anyone else needs to know, or really any number of reasons. I can also see how it would get old to answer the same questions over and over again, especially when you don't have answers and the situation is this emotional.

Not that this really compares, but when I miscarried, we told very few friends, and no family. We felt that family would be more upset with how the loss affected them rather than us (loss of a grandchild or niece/nephew rather) and I knew at least certain ones would ask all kinds of questions about how, when, why, etc. I didn't have the emotional energy for that and just wanted to grieve privately.

[diam124]

I can sort of chime in on the lack of diagnosis issue...my DS is the same age as your niece and besides a very obvious speech delay there are some other things going on as well. We have been told by various doctors about several different possible diagnoses, but really he is still too young to know what is going on exactly. For some of the conditions he fits some of the criteria but not all. It's hard to have 1 doctor tell you one thing and then you jump on that bandwagon until the next doctor says that it's something different. It is not a fun place to be because you are stuck with all these what-ifs and questions about prognosis. Honestly, it would be much easier if we knew what he did have because then you know what you're in for (sort-of) and you can research things. You can start to deal with it and move on. Being stuck in this weird limbo where nobody can tell you what's going on sucks and is scary. That really could be a big reason why they just don't want to talk about it. They don't want to share any unofficial diagnosis and they just don't know what's really going on.

[poodlelover]

I agree that I would try to make an effort to get together separately, like maybe you guys could have a "Girls Night Out" or "Guys Night Out". If there's other people attending, maybe he and she wouldn't be so stressed/worried about you bringing it up? At least this way they would have some fun and get their minds off of their DD.

My ODD was delayed on everything. She didn't walk until she was almost 20 months. At age 3 they evaluated her speech of that of 9-month olds. She was enrolled in special intervention. She's 7 now but at age 5 she was caught up on everything. She is perfectly normal and as a matter of fact we just closed out her IEP a few weeks ago b/c she was doing too well. Anyway, I hate to say it but I felt embarrassed that our DD was so behind. I felt like I was being judged, like people were thinking we should've worked with her more. I was pretty hard on myself, thinking that maybe I did do something wrong or that something I did while pregnant caused it. It's hard to explain how I felt but I definitely didn't want anyone to say anything, oh she's not walking yet? etc...

[Ali]

RE diagnosis - I have seen diagnosis of children change over time, as new information is found, and also as the child becomes better able to communicate, the child can better explain what is going on with him/her. It is normal not to know exactly what is going on when children are very young.

[j*east]

Thank you all so much! I finally got a chance to really read and not just skim. Your words and thoughts are helping me to be more considerate and compassionate.

I know for us, I got really tired of people asking about DD and people were always trying to be "helpful" by sending us links and giving advice. So for awhile all of humanity bugged the crap out of me Right now they just want to be with each other, and I can 100% relate. Give them time. I felt like age 2 was when the issue of DD's delays were the WORST in terms of being with other kids. Other 2 year olds are just so active all the time, and DD was just sitting there. We were lucky, DD seems to have caught up in most respects, and hopefully their child will too.

I would still make a point of regularly reaching out to them, sometimes with offers to help, but sometimes just to say hi. It will make it easier for them when they're ready to reconnect.

Thanks for sharing your experience. I'm glad your DD has caught up in most ways. I'm obviously hoping for the same for my niece. Thanks also for the reminder to keep reaching out...that's what we've been doing, but we're getting discouraged, and it helps to hear that suggestion again.

we've been in a sort of similar situation. my dh's brother + wife have an autistic son. this is the brother that dh is closest with and the sil i love the most, they would be great to hang with and go on vacation with, etc - we were really happy when they first got married, they were going to be the couple that we'd vacation with and stuff like that. we pretty much started down that road and everything was great until we went on vacation with all of our kids and stayed in a house together, their ds could not be in the same room with my kids without violently attacking them to the point that it would take 2 adults to pry him off. we were laid back about it and tried to comfort them saying that cousins fight, etc. but it was really hard on my sil and she would cry. it's been different since then.

my ds ended up having some delays + behavioral issues and i had a *teeny tiny* taste of what it must be like to be them, to have a child with these issues and be out in public is really difficult and makes you feel like crap. besides that, it's just a lot of freakin' work and people just don't "get it". your sil saying "you just don't know what it's like" speaks loudly to me. i'd probably give them their space until they get their dd's issues sorted out and then maybe have your dh talk to his brother at some point. i know with my bil/sil, when they were in the thick of it, getting the diagnosis and everything sorted out, they weren't interested in talking about it. at a certain point though, you have to sort of wedge your way into their lives or else the distance will become the norm.

i can say that in our family, the ones that are closest with the autistic nephew and get right in there and interact with him and care for him are the ones that they spend the most time with.

Thank you for sharing your story! Your poor SIL. That sounds harrowing. I hope things are getting better as your family learns more and can adjust.

We would love to spend more time with our niece! I hope we get to in the future. I'm trying to find a balance between being concerned and being annoying.

I think acknowledging to them that you don't get it will go a long way. Whenever someone is hurting, it doesn't help when others act as if they understand the situation you're going through, and really how can anyone understand it unless they have gone through it? Tell them you love their child, and ask how you can help if only just to lend an ear. If they don't respond, they will remember it. Sometimes in the midst of struggle, people isolate themselves bc they are so overwhelmed with life. Like others said, don't take it personally, and I wouldn't hold it against them. When they come back into your life, treat them with kindness for the sake of the children.

Thank you! I labored for a long time over the email I sent SIL...I remembered all of the "assvice" I got when dealing with IF, and I wanted to avoid that. I think it was a pretty good email, and I hope she will remember it in time. I'll hang in there, meanwhile.

Never been in any situation like this, but I would think being gentle - sending emails periodically or even notes just saying you're there if they need you - would be helpful. While they may not want help now - it can be nice to know that you're there. And maybe even say "we don't know what you're going through, but if you need us we're there and we can try to help in any way we can."

Thank you!

I think Pine Tree said it perfectly. My DS has some delays as well and is almost 2. The delays are becoming more and more obvious at this age. Like they're past the baby "unpredictable" stage and turning into little kids, but my DS is still baby-like with his communication. It is really, really tough to be around other kids sometimes. Personally, even though I hate it sometimes, I still suck it up because my DS is an only child with a SAHM and needs the socialization. However, they are obviously dealing with it differently and that's ok and their right. It's hard to make suggestions on how to change the relationship because like Pine Tree said, it's not about you, it's about them. I would continue to try, but just understand that it may take time for them to come around.

Yes, thank you for the observation that the recent birthday may be making this more difficult for BIL and SIL. I hadn't thought of that.

I haven't been in this situation either, but I was thinking it might help to relate it to something you've been through. Like infertility. They're angry and grieving what they thought it would be like to have children, and this is just how it's coming out right now for them. Not wanting to be around people with typical children is a lot like an infertile couple not wanting to be around pregnant people or come to baby showers. These things have nothing to do with anyone but themselves--they're probably having enough trouble right now just getting through their day. One of my kids has a genetic issue that is minor (now) and it was really really upsetting--I can't imagine multiplying that by how much more delayed your niece is, and I'd bet it's just as consuming for them as infertility is. Maybe you could think of it as if this is a friend who's been going through infertility for 5 years and can't be around your kids, because you probably have a better frame of reference for that mindset.

Ultimately, they not only have to grieve the way things have been to this point, but their uncertain future. They really don't know the extent of her abilities and delays. I know this means you and your DH are also grieving, because when your SIL & BIL had kids so close in age you probably expected to actually be involved in their lives. Maybe the best way to go about it is to have your DH let them know you are there for them, understand that it's hard for them to be around you and your kids right now, and to ask how you can support them right now.

Thank you! I agree, it seems that the infertility analogy is a good one.

[j*east]

If they live an hour away, maybe your DH could tell his brother that, "Hey, I'll be in [midway point] on Tuesday -- want to get together for dinner?" I wouldn't present it as a "we need to talk" kind of thing, more "I'll be kind of near you and would love to see you." Of course the brother might or might not be open to that either.

Thank you! We will aim for this. It's been difficult, but FIL's birthday is coming up and we should see them for that.

Right now, I am sure they are going through a difficult time because you don't really expect your child to be anything other than happy, healthy and plugging right along through the milestones of life. When they are delayed in these things it affects EVERYthing in your life...including (unfortunately) sometimes interactions with others (because there's only so many stories about how "lil' Johnny or lil' Susie is talking in sentences or leaping over toys" you can take without pulling your hair out thinking about your own kid).

I think this is an excellent analogy. When you mourn the loss of your fertility while everyone else is having babies it's like mourning the loss of your child growing up the way you thought s/he would while everyone else's child around you has children who are talking a mile a minute, jumping, climbing and skipping happily around, etc. I commend you for even CARING about your BIL and SIL like that. Most people would just shrug it off and feel like they should "get over it"! (Trust me...I know.) So the fact that you posted looking for advice and that you truly want to help them and be there for them is awesome and I think if you hang in there and let them know that they will see how genuine you really are. Wish there were more people like you.

Thank you! You're too kind. I am keeping the tendency of parents to brag about their kids in mind, so we don't post braggy stuff on FB, for instance. (Not just for SIL and BIL, but in general...I find braggy parent posts kind of annoying. I'm sure we still have a few, but less than a lot of people, at least.)

I am certainly no expert in these matters, but if I were your BIL and SIL I would be looking for a ped that had experience in dealing with children with delays. I'd hit the roof if a doctor told me my child wasn't bearing weight on their legs because they were unmotivated. My brother has lots of issues and the best thing my mom did was switch his pediatrician. He was much better connected to specialists than our previous ped. With respect to an official diagnosis, I do think that sometimes there are cases where there isn't a specific diagnosis that can be given. As an example, also with my brother, he's 28 and doesn't have an official diagnosis, after years of tests, including muscle biopsies when he was a baby and chromosomal testing as a young adult. He was also one of those "one in a million" cases, as all of the testing my mother had during pregnancy didn't point to any potential problems. Best of luck, I know these kinds of situations can be really tough on families.

Honestly, I am irked that someone said that too. Are they supposed to be glad that their DD is just "lazy"? I have not been a fan of their ped. In fact, our niece had an asymetrical head for most of her first year (due to torticollis) and their ped never seemed to notice (unless BIL and SIL were choosing not to talk about it). The types of questions we have asked have been things like, "Are you satisfied with the care you are getting?" and they say yes, so who knows.

Sometimes doctors have no idea, and sometimes parents just don't want to tell people what the doctors have said. We never told MIL that the neurologist thinks DD had an in-utero stroke, just brushed it all off when we talked to her. In fact, I don't think we ever told her we took DD to a neurologist. Just wasn't worth the drama. Maybe the doctor is incompetent, or maybe the MIL only knows some of the story. I had a friend who's DS needed a feeding tube put in during surgery, the MIL called and asked how the HEART surgery went. You just never know.

Good point. I think they would tell us, as they have been very open in general about stuff that many people would keep private, but who knows. I take everything MIL says with a grain of salt, if only because I'm hearing it secondhand.

I never knew there even could be in-utero strokes. I am glad your DD is doing much better. That sounds really scary.

I don't have experience from either side, so take this as .02 worth.

I would keep trying to call them. You can try having your dh call his brother, you calling SIL, etc. I would ask about them, not how their dd is doing, and not mention anything about my kids unless asked.

As far as not having a diagnosis, I don't think it's a huge deal as long as the medical staff is working towards finding one and exploring what it could be I wouldn't worry too much. Sometimes the child needs to be a certain age for some diagnosis, or she might have some symptoms of one diagnosis but not quite fit it completely so the dr. is hesitant. I'd much rather my dr. be thorough and sure of the diagnosis, especially when you hear of some that are too quick to use ones like autism, add, adhd, etc and are sometimes wrong. And of course, they may know more than what they are telling anyone. They may be in denial that there is anything "wrong" with their dd, or they may view it as very private and not something anyone else needs to know, or really any number of reasons. I can also see how it would get old to answer the same questions over and over again, especially when you don't have answers and the situation is this emotional.

Not that this really compares, but when I miscarried, we told very few friends, and no family. We felt that family would be more upset with how the loss affected them rather than us (loss of a grandchild or niece/nephew rather) and I knew at least certain ones would ask all kinds of questions about how, when, why, etc. I didn't have the emotional energy for that and just wanted to grieve privately.

Thank you for sharing your experience. I'm so sorry for your loss. In a way, this is a loss, though a different kind. I think there has been a lot of denial here, but obviously that's understandable.

I can sort of chime in on the lack of diagnosis issue...my DS is the same age as your niece and besides a very obvious speech delay there are some other things going on as well. We have been told by various doctors about several different possible diagnoses, but really he is still too young to know what is going on exactly. For some of the conditions he fits some of the criteria but not all. It's hard to have 1 doctor tell you one thing and then you jump on that bandwagon until the next doctor says that it's something different. It is not a fun place to be because you are stuck with all these what-ifs and questions about prognosis. Honestly, it would be much easier if we knew what he did have because then you know what you're in for (sort-of) and you can research things. You can start to deal with it and move on. Being stuck in this weird limbo where nobody can tell you what's going on sucks and is scary. That really could be a big reason why they just don't want to talk about it. They don't want to share any unofficial diagnosis and they just don't know what's really going on.

Thank you; it's really helpful to hear your experience. Limbo sounds really sucky and really scary. I hope you have more useful information soon. Thank you, again. Your words help me to be more compassionate toward SIL and BIL.

I agree that I would try to make an effort to get together separately, like maybe you guys could have a "Girls Night Out" or "Guys Night Out". If there's other people attending, maybe he and she wouldn't be so stressed/worried about you bringing it up? At least this way they would have some fun and get their minds off of their DD.

My ODD was delayed on everything. She didn't walk until she was almost 20 months. At age 3 they evaluated her speech of that of 9-month olds. She was enrolled in special intervention. She's 7 now but at age 5 she was caught up on everything. She is perfectly normal and as a matter of fact we just closed out her IEP a few weeks ago b/c she was doing too well. Anyway, I hate to say it but I felt embarrassed that our DD was so behind. I felt like I was being judged, like people were thinking we should've worked with her more. I was pretty hard on myself, thinking that maybe I did do something wrong or that something I did while pregnant caused it. It's hard to explain how I felt but I definitely didn't want anyone to say anything, oh she's not walking yet? etc...

Thank you. I'm glad to hear your DD caught up, and that it's possible. There's so much emphasis on ages 0-3 that sometimes it seems like kids can't progress later on, which is both silly and scary to think.

RE diagnosis - I have seen diagnosis of children change over time, as new information is found, and also as the child becomes better able to communicate, the child can better explain what is going on with him/her. It is normal not to know exactly what is going on when children are very young.

Thank you. Good to know!

I appreciate your help, everyone. Please feel free to share any more thoughts.

[Ali]

Also, I know that when some children are not very mobile (or whatever, but in this case...) the recommendation is to put something nearby, or do something the child likes, that motivates movement on the part of the child. Do you think the doctor suggested something like this, and it got misconstrued in translation?