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happysmileylady

Spouses, roles, understandings

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DH and I had a discussion tonight and it kind of highlighted our differences in understanding and dealing with the kids challenges.  I am kind of trying to think how to work within his understandings....or expand his understandings.

 

So, what happened is that DH picked DD8 (who has an ASD diagnosis) up from Girl Scouts.  When DD joined this troop, I spoke to the leader, explained specifically where she had challenges, and explained that we felt she could handle being dropped off, but to let me know if that wasn't working or whatever.  And whenever there is an event, I tend to hover closely, ensure direct check in with the leader, check out, etc.  DD's challenges are language, sensory seeking, safety awareness and some personal boundaries.  I explained this at the outset.  And generally, there hasn't been a problem.

Today, I sent DH to pick up DD8.  And there was a personal boundaries incident.  Nothing serious, but for SURE something that requires additional support/direct instruction/etc.  Also, the leader requested that for any cookie booths, a parent be there to ensure her safety.

 

So, that's the background.  The issue I am struggling with is.......none of this was unexpected for me.  Or...rather....these are challenges that are within the scope of her known issues.  I explained the issues to the leaders ahead of time, they assured me that was all ok, and I asked that if there WAS any sort of problem, they would tell us so we could address it....as they did and as we will address it.  Also, at the last meeting, I discussed cookie booths specifically with the leader.  I explained that we wouldn't do more than a couple, but that since I am already a background checked volunteer, I can be at the booths with DD, just let me know so I can make sure I am a listed as a volunteer for their troop also (I am the cookie mom for DD10's troop, so I am already completely ready to go I just need to contact the service unit person to get attached to the other troop also.)

 

DH seemed completely blindsided and in fact, almost embarrassed by the discussion.  I didn't understand why, because we are both well aware of her diagnosis, well aware of her challenges, we both know she sometimes has personal boundary issues, I know I even told him just what I explained to her leader when we started.  But, it occurred to me.....mostly, when DD8 needs accommodations or extra surveillance....it's always me.  I filled out the paperwork when she was being evaluated.  I drove her to the multiple diagnostic appointments.  I met with the school when she was in school.  I did all the IEP meeings.  When she's in the grocery store, it's me, not him, with her.  Taking her to ball practices, meeting with coaches, meeting with troop leaders....all of that stuff is something he basically has no experience with.  And as a result, he just doesn't have the depth of understanding that I do.  Not just what she can and can't do, but what sorts of accommodations have been discussed, what things may or may not have been discussed with people like coaches or troop leaders, etc etc.  

Which means that when he tells me this I hear the leader say "hey, this problem you said might come up, it has come up."   And to him, he hears "Hey...your kid is a problem."

 

All that rambly to say.....I feel like this imbalance in understanding happened somewhat naturally.  DH is gone nearly 12 hrs a day, 5 days a week.  He also travels for work about once a month, sometimes for as much as a week and a half, other times, for just a few days.  And I am home full time.  It's nearly inevitable that my level of understanding would be different.  So what I am looking for, I think, is ways to either give him a better depth of understanding, OR, to help me better deal with his lack of understanding (and following that.....not be irritated when he's so confused or embarrassed.)

 

 

 

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How did your dh respond (to them, to you) when they told him this?

Edited by PeterPan

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Okay, “behaviors” is so broad.  I read and assumed that a girl touched someone or hugged someone.  It’s not appropriate but it’s not a big deal like — something that would be a big deal.  

But to the question.  

My husband and I aren’t completely on the same page right now, but we are close.  

He used to be more clueless.  

I needed him to take some ownership.

Something that helped, he was able to come to one IEP meeting.  He was able to talk to the ABA therapist a few times.

More recently, he really hasn’t been able to get off work for a long period of time.

But — he has been able to be available by phone.  I haven’t called him because I haven’t felt like it was necessary, but he has been able to be available by phone for me to put him on speaker if I wanted to.

Another thing, for some decisions, I will wait until I can talk to him to make a decision.  I will go over with him what was discussed, and then have him be involved.  

It adds time, but I need for him to be on the same page with me.  

I think there is some effort involved and he would have a steep learning curve at first, because he wouldn’t have done the reading etc I had done.  

Over time, I would now say his knowledge level is good for our son.  I would not have said that for a long period.

We had fights because I wanted him to read a certain book.  I ended up summarizing the main points of the book to him and explaining how that related to some approaches we were making and I wanted him to be on board with.  

We are in a good place right now, but we are also on auto-pilot, with things in place in a good way and no big changes or decisions coming up.  

My husband is a soldier, and he was on a year-long deployment while my son was diagnosed and started ABA therapy, and special needs pre-school.  We had pretty major things going on with no involvement possible from my husband, and then he came back and it was a big adjustment for him.  

I would say it’s a hassle/job for me in my role to also bring up things to my husband and keep him in the loop.  But things go better when we are on the same page.

As far as the Girl Scout pick up, I think that would be new to anyone their first time.  It can be unexpected without it being like “I had no idea.”  Maybe he knew on one level, but just wasn’t expecting it or didn’t realize.  That can happen with my husband even when he is on the same page and aware.  It is just not something he gets used to in the same way I do.  So I think that’s too bad but I think sometimes anybody can be caught off guard.  But I also think there can be a lack of awareness that is from not wanting to know, or from just not knowing.  And then — I think there is a need for more ownership.  

I got a lot out of “Not My Boy” by Rodney Peete, it’s about a father who accepts his son’s diagnosis over time and about his thought processes.  It was at the library. 

https://www.amazon.com/Not-My-Boy-Familys-Journey/dp/1401323618/ref=mp_s_a_1_1?keywords=Rodney+Peete&qid=1550678791&s=gateway&sr=8-1

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I want to clarify too for my opinion.

I know someone right now who has a lot of inappropriate behavior.  He stands too close to people, sometimes touches people, can kind-of wander off, and things like that.

This is NOT “zero-tolerance behavior issue” type of stuff.  It just is not.

Zero-tolerance is aggressive or destructive behavior.  That is very different.  

I don’t think it helps to mix them up, they are just not the same.  

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Also I think it is great your daughter is able to be involved and you are ready to go on the cookie sales.  I think it is so important and worthwhile, good for you!  

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I think how you have made arrangements with the leader sounds great, too.  I’m sorry your husband was caught off guard.  

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There comes a point where those people in those mainstream settings don't want to solve your problems. They don't WANT your problems, even if they're small. Now sometimes you'll get people who can handle it (we had a gymnastics coach like this). But in general, it's now to the point where pretty much if my ds can't blend in seamlessly, it's my problem to solve, not theirs. And if the leader is reporting problems, she can be saying she didn't like having it happen. Otherwise, if she had it handled and was comfortable with it, then why mention anything? I find the people who have it under control (or are trying) tend to cover over things. 

It's just something to be sensitive to if your working assumption is that she's cool with it and the leader isn't any longer. I get a lot more responses like this than people wanting to help. There comes a point where they no longer want your problems.

Edited by PeterPan

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40 minutes ago, PeterPan said:

How did your dh respond (to them, to you) when they told him this? Seems like that's the only real problem here. You have supports under control and are communicating. He's already involved the amount he wants to be and has clearly laid it all to you. With the amount he's working, he's not likely to change that. Is this a marital problem that you need counseling for? If it rises to that level, get counseling. And yeah in theory some men will do more, but I would think through how much more you REALLY NEED. If you've got it and your balance works in your family, it works. 

As far as the embarrassment, well frankly it sounds like she IS a problem there, that she's not getting enough support. It sounds like she would do better in that setting with an extra parent volunteer who quietly is added to the group so there's always a touch more support for her. Is she a dc who would mainstream in a ps setting and require no IEP, no aide, no nothing, or a dc who would have an aide, some extra supports... She's getting older so the acceptability of ANY behaviors is going down. It's about to become ZERO. I'm just saying I've gone through that transition with my ds, who was younger and is now 10. My ds is not a "bad kid" in any setting. Like people would look at him and generally like his behavior and say they wished their kids acted so well, etc. But as they get older (8, 10...) the demands go up and the expectations go up and the tolerance drops down. 

So your workers at that group should be handling squat, imho. She could be paired with an older dc who could mentor her or they could add a teen worker or you could send someone. The goal is to prevent issues, not solve them. 

And then, back to your dh, is he where the genes came from? Unless they're de novo mutations, they came from someone. They could be more significant. They could be behaviors he had as a kid but maybe not to the same degree. Sure he could have feelings about that or be embarrassed. My kid is 10 1/2, and we've really had to transition our expectations to ZERO behaviors in a public, mainstream setting. If there will be ANY behaviors, we are expected to up the support so they're prevented or dealt with by the person we lined up. These volunteers have zero extra energy to deal with our problems.

DH's reaction with the leader....He basically just said ok, we would talk.  And we did, I was like "ok, yeah, I already talked to them about the booths, that's no problem."  And that's when he seemed to get confused, and when I tried to clarify just what the leader said, that's when he seemed to get embarassed and said "they just want someone there with her."  

In truth, I am beginning to think that she might do better with a different troop.  Not because of the leaders but because the troop is a larger troop, and the girls can be a bit boisterous.  It's not a bad thing, it just might be a little more chaotic than works for DD.

 

3 minutes ago, Lecka said:

Okay, “behaviors” is so broad.  I read and assumed that a girl touched someone or hugged someone.  It’s not appropriate but it’s not a big deal like — something that would be a big deal.  

But to the question.  

My husband and I aren’t completely on the same page right now, but we are close.  

He used to be more clueless.  

I needed him to take some ownership.

Something that helped, he was able to come to one IEP meeting.  He was able to talk to the ABA therapist a few times.

More recently, he really hasn’t been able to get off work for a long period of time.

But — he has been able to be available by phone.  I haven’t called him because I haven’t felt like it was necessary, but he has been able to be available by phone for me to put him on speaker if I wanted to.

Another thing, for some decisions, I will wait until I can talk to him to make a decision.  I will go over with him what was discussed, and then have him be involved.  

It adds time, but I need for him to be on the same page with me.  

I think there is some effort involved and he would have a steep learning curve at first, because he wouldn’t have done the reading etc I had done.  

Over time, I would now say his knowledge level is good for our son.  I would not have said that for a long period.

We had fights because I wanted him to read a certain book.  I ended up summarizing the main points of the book to him and explaining how that related to some approaches we were making and I wanted him to be on board with.  

We are in a good place right now, but we are also on auto-pilot, with things in place in a good way and no big changes or decisions coming up.  

My husband is a soldier, and he was on a year-long deployment while my son was diagnosed and started ABA therapy, and special needs pre-school.  We had pretty major things going on with no involvement possible from my husband, and then he came back and it was a big adjustment for him.  

I would say it’s a hassle/job for me in my role to also bring up things to my husband and keep him in the loop.  But things go better when we are on the same page.

As far as the Girl Scout pick up, I think that would be new to anyone their first time.  It can be unexpected without it being like “I had no idea.”  Maybe he knew on one level, but just wasn’t expecting it or didn’t realize.  That can happen with my husband even when he is on the same page and aware.  It is just not something he gets used to in the same way I do.  So I think that’s too bad but I think sometimes anybody can be caught off guard.  But I also think there can be a lack of awareness that is from not wanting to know, or from just not knowing.  And then — I think there is a need for more ownership.  

I got a lot out of “Not My Boy” by Rodney Peete, it’s about a father who accepts his son’s diagnosis over time and about his thought processes.  It was at the library. 

https://www.amazon.com/Not-My-Boy-Familys-Journey/dp/1401323618/ref=mp_s_a_1_1?keywords=Rodney+Peete&qid=1550678791&s=gateway&sr=8-1

The bolded is exactly what happen.  

 

And yes, caught off guard and feeling like he had no idea really seems to describe.  You are probably right, in that he "knows" but doesn't always *realize*

 

Last year, the girls were in softball, and he handled DD10's stuff more while I handled DD8's....maybe this year we will switch that.

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15 minutes ago, Lecka said:

I want to clarify too for my opinion.

I know someone right now who has a lot of inappropriate behavior.  He stands too close to people, sometimes touches people, can kind-of wander off, and things like that.

This is NOT “zero-tolerance behavior issue” type of stuff.  It just is not.

Zero-tolerance is aggressive or destructive behavior.  That is very different.  

I don’t think it helps to mix them up, they are just not the same.  

Aggressive or destructive, she is definitely not.  This is definitely a bit of overly "touchy-feely" behavior.  It's something we are working on for sure.  We have had great improvement, but we aren't all the way to understanding that you can't just rub someone's sweater whenever you feel like it.

14 minutes ago, Lecka said:

Also I think it is great your daughter is able to be involved and you are ready to go on the cookie sales.  I think it is so important and worthwhile, good for you!  

I think she's really going to enjoy the cookie booths.  

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12 hours ago, happysmileylady said:

So what I am looking for, I think, is ways to either give him a better depth of understanding, OR, to help me better deal with his lack of understanding (and following that.....not be irritated when he's so confused or embarrassed.)

I am easily embarrassed when someone needs to tell me something about my kids. I have some reason for that baggage (long time until diagnosis, and no one thought my kiddo had ASD), but even so I would've been at least a little embarrassed to have that kind of feedback directed at me no matter what. Some of us are just like that, and it has nothing to do with how we feel about our kids.

Maybe he felt a little flatfooted that he didn't have a pre-rehearsed response that he felt confident saying to the leader, on top of not really realizing that this was a possible outcome. I think responding in these situations is super difficult (again, I have baggage, lol!).

I do think that if you switch some of the roles at softball or other activities, it could help. 

I wonder if you can give him a list of things you have told the troop she needs for supports (ditto for all activities), so that he can have that in writing to go over on his own (so different from hearing it). I know it probably changes here and there, but I bet seeing it in black and white could help. And then maybe talk about things that might go wrong if those supports are too lax, etc. I wonder if marking up a monthly calendar with everyday sorts of support levels (with maybe a different color for a place where she had some behavior that was unexpected) would give him a quick visual of the frequency. You could have different colors so that he can just scan it or see patterns (she needs x support at Girl Scouts, and this one at music lessons, whatever). Keep the colors calming for ordinary things, lol! I am envisioning a description of supports that you can color code--one group of supports for academics, one for safety, etc. so that it's not a million items in the list with their own colors.

P.S. I am suggesting this list/calendar idea because you seem to have it all done pat for yourself--if someone had asked me for such a thing when we were still ironing things out for my son, I would've cried. You seem to have internalized it all quite nicely!

Edited by kbutton

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Just a thought, if your daughter is a little boisterous herself, she might stay in the current troop.  There might be more tolerance for her if there is a boisterous vibe.  

If she really does better and is more comfortable with a smaller/calmer group, I would definitely go for it.  

But you don’t have to just because she is having some minor things.  It can be a chance for her to work on her appropriate behavior in a more-challenging setting, and that can be a good thing, too.  

I think whatever your sense is. 

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OK, so.....now that DH is less blindsided, I have better information....

 

The leader actually asked him "is she on the spectrum? "

 

No wonder he was blindsided!  There are 2 leaders, and it was the OTHER leader I discussed DD's challenges with.  The reason I did that is because it was my understanding that the OTHER leader was the primary, this one was the assistant, at least that was my understanding at the time.  Now I suppose it's more likely that they share duties equally.  But, it doesn't seem that the leader I spoke to actually discussed things with the leader she's sharing duties with.

In addition, he was able to give me a clearer idea of the discussion, it seems that DD was trying to play a "scaring game" of some sort.  He said the leader explained that DD came up behind the leader and grabbed her from behind, saying "ha ha, did I scare you?" And this is apparently what caused her to bring this all to DH when he picked her up.  I might need to maybe have a meeting with both leaders....I dunno.

 

 

 

 

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It really sounds like two separate issue.

1st: Your DH is either in a different place as far as excepting the diagnosis, or he just has a lot less experience dealing with it.  Solution- talk to him more about stuff, ask him to take on more with the DD so that he can get that experience. 

2nd: is the Brownie troop a good fit? I am assuming Brownies based on her age, but the level isn't that important. I think you are going to have trouble finding a troop that is "better". You have got troop leaders willing to work with you, but it sounds like there needs to be more communication. Honestly, I worked with Girls Scouts for a long time, and most troops would require a parent to attend with her under the same situation. The fact that these leaders are accepting is great. If this is something you would like her to continue long term, I would be hesitant at switching to a smaller troop at this age level. If you do find a troop of say 8 girls, they have already been together for a few years and she may not mesh well. Also, as the girls get older, many end up leaving. A small is not likely to make it past 5th grade. The. You are stuck with looking for another new troop which may or may not exist at that time. 

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15 minutes ago, City Mouse said:

It really sounds like two separate issue.

1st: Your DH is either in a different place as far as excepting the diagnosis, or he just has a lot less experience dealing with it.  Solution- talk to him more about stuff, ask him to take on more with the DD so that he can get that experience. 

2nd: is the Brownie troop a good fit? I am assuming Brownies based on her age, but the level isn't that important. I think you are going to have trouble finding a troop that is "better". You have got troop leaders willing to work with you, but it sounds like there needs to be more communication. Honestly, I worked with Girls Scouts for a long time, and most troops would require a parent to attend with her under the same situation. The fact that these leaders are accepting is great. If this is something you would like her to continue long term, I would be hesitant at switching to a smaller troop at this age level. If you do find a troop of say 8 girls, they have already been together for a few years and she may not mesh well. Also, as the girls get older, many end up leaving. A small is not likely to make it past 5th grade. The. You are stuck with looking for another new troop which may or may not exist at that time. 

On DH...I think he just has a lot less experience.  

 

On her troop...I am questioning the fit.  

One thing I am considering is asking DD10's troop leaders about their thoughts on a muti age troop.  They are a smaller troop, 6 girls, and both troop leaders have kids with ASD diagnosis, one of whom is a member of of the troop.   DD8 has already been a tag along on their troop events, and they have gotten to know her.  DD10 is a junior and will be so next year.  DD8 would, at this point, be the only brownie of the troop, but honestly, in terms of the requirements between the ages, I think adaptations would be fairly easy, and I think DD8 might respond better to the increased requirements easier.  

 

So, I don't know.  Sometimes, things don't fit.  Sometimes, they can fit with some adjustments (and really, I can stay at DD8's meetings and wouldn't have a problem doing so if they wanted....the only issue is that my other two kids are stuck with it too because DH won't be home in time.)  Sometimes, *special needs* means that special things need to be done to meet the needs.  Sometimes, changes just need to be made.  So I guess, we will need to just all keep communications open and see what happens.  

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