How can I explain to good friends who don’t understand SNs why a weekend trip is not possible for my kids

[Anonymous]

^^ said in response to the suggestion to contact the National Domestic Violence hotline. I

[Anonymous]

OP, your last update worries me.

I am the parent of a young adult who was diagnosed with ASD in elementary school (second opinion too and we were in agreement). We told a small few on a need-to-know basis. Some fell by the wayside immediately. We too are in a very competitive area. Some parents no longer speak to us. Others remain good friends, 15 years later. What I realized is that it was important to place the needs of our son #1, not worry about others' thoughts, labels, etc. It got much harder before it got easier. Those who don't know think you've just got a bad kid. That is hard to hear for sure. No perfect answer, but putting head in the ground and hoping no one realizes (THEY DO, as pps have said above--you and DH are not fooling anyone). Please don't get cut off from your small circle of friends.

[Anonymous]

Setting aside the significant DH issue that you have but which has already been covered….

Do you have any friends outside your community that you could cultivate? Friends from work or college, people who don’t necessarily know your DH or kids even? Or even an online community of people with children with similar challenges?

I think my heart really breaks to think of you having no one to talk to outside your DH. Challenges with our children are one of the hardest things we will face in our lifetime and you need to have people to talk to.

Therapy can also be great for this, and therapists are bound to keep things confidential. There are even therapists that specialize in parents of kids with special needs.

[Anonymous]

If you are sending your kids to public school, people in your community are going to find out without your knowledge and make their own assumptions. Any parent who volunteers in the school building is going to put two and two together. You are better off controlling the narrative from that standpoint.

Your dh needs help to work through his own stuff - and also needs to do a better job treating the mother of his children with the dignity and respect he thinks he is giving his kids. That’s all I am going to say because the rest of what I am thinking is NSFW.

[Anonymous]

Didn't read all of the replies so I'm sure this might have already been covered, but it's perfectly fine to just say "our kids are having a hard time when they're off their normal routines right now, so this trip won't work for us"

But I also think you are setting yourself up for a much harder life by not sharing. And by comparing your kids to other kids. And by acting like a diagnosis is shameful and should be hidden. All parents struggle with some aspect of parenting. Sharing yours should help you feel closer to your friends and also help them understand your kids better. I certainly don't share every detail of everything but I let my close friends know what struggles we've had and their support is so so important. They care about me and my kids and now know how best to ask and talk about it. And there are still lots of things we can do together, but if I say "that won't work for us" they totally understand.

Judgement and isolation will come if you pretend like everything is fine.

[Anonymous]

Anonymous wrote:Mr. "I'm the only normal one" is showing major signs that he's not so neurotypical. Rigidity, black-and-white-thinking, difficulty understanding others perspectives (yours, in needing/wanting support, the idea that others might be compassionate) - those all could be signs of high functioning autism.

Yeah, apple doesn't fall far from the tree.

- Signed lovingly from an ADHD mom with an AuDHD kid

[Anonymous]

Anonymous wrote:

Anonymous wrote:OP here. I tried to talk to my DH and he said the only thing he’s comfortable sharing is that our kids have some behavior challenges but he flipped out when I suggested sharing more. He kept going on and on about how I constantly overshare to try and make friends and it backfires on me, that this is personal info the kids will be judged on, that my friends will tell other parents in our small and competitive community and our kids will be judged, etc. He shut down any suggestion that people could grant us accommodation or Grace from disclosing additional information by saying that our kids have to live in this community for the next 15 years and he’ll be damned if I share their diagnoses with my friends because it’s not their business and they will judge us and tell other parents and gossip. And he said he’d rather be judged as an overbearing parent than have our kids private medical information shared. He said even when we have shared in the past about other medical issues they had (acute things) people don’t remember the details, just that your child has a problem. I don’t really know what to do…we are so far from being on the same page about this, and I don’t know how to get us on the same page. I’ve suggested marital counseling and therapy periodically for years (not just this but other issues) and he always says I’m the one with issues and I need to go but that he doesn’t.

As a non-neurotypical adult with a child with ASD and ADHD, I would urge you and your husband to consider being open about your child's challenges. For years I tried to hide my diagnosis for friends and co-workers. Although I was sucessful at work, I was constantly afraid that if my co-workers learned about my diagnosis, I would be not respected as an equal. When it became clear that my child struggled with similar challenges, I realized that by hiding my own diagnosis, I was giving him the subtle message that not being neurotypical is something to be ashamed of. There is nothing wrong with being different. In my opionion, when you try to hide your child's diagnosis, you are telling them that they have something to be ashamed of.

+1

[Anonymous]

Anonymous wrote:Didn't read all of the replies so I'm sure this might have already been covered, but it's perfectly fine to just say "our kids are having a hard time when they're off their normal routines right now, so this trip won't work for us"

But I also think you are setting yourself up for a much harder life by not sharing. And by comparing your kids to other kids. And by acting like a diagnosis is shameful and should be hidden. All parents struggle with some aspect of parenting. Sharing yours should help you feel closer to your friends and also help them understand your kids better. I certainly don't share every detail of everything but I let my close friends know what struggles we've had and their support is so so important. They care about me and my kids and now know how best to ask and talk about it. And there are still lots of things we can do together, but if I say "that won't work for us" they totally understand.

Judgement and isolation will come if you pretend like everything is fine.

DP here. IME, this is very true.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I think the less you go on trips though, the less exposure your kids will have to doing this differently and being more flexible.

We have tried this. We went to the beach this summer (just our fam) and one or both of the kids had daily meltdowns. Most days we didn’t get to the beach til 11. We tried eating out and DD cried because the pizza was not the kind she liked and the music was too loud. They can’t even eat Mac and cheese if it’s not the preferred type.

Op, I think your kids may need ABA and feeding therapy. And yes, your friends would notice this. Anyone would. Trying to hide these kinds of issues will require you are social pariahs.

I disagree - and not just because I disagree with ABA.
I think OP has both a kid problem AND a husband problem. The husband expects the kids to act NT and also likely expects them to react to discipline and motivation methods more suited for NT kids.

OP - I think you need to determine what the critical parts of a vacation or event are and then make a plan to help that thing be successful. Getting to the beach at a certain time, not shouting in restaurants, not having potty accidents, kids sleeping all night in their own bed. But you can’t have ALL the things. Just pick one and work on a plan. If you want to be at the beach by 9am, recognize that your expectations for what kids eat pre-beach or how many times you need to take them for a potty break may not be ideal. If you want them to behave a certain way at a restaurant for dinner, what things do you do in the afternoon to increase the chances of success? Do your kids need a quiet rest time after lunch to reduce the chances of sensory overload? If bedtime is a struggle, can you move dinner up so the kids are not all amped up from a loud busy restaurant?

Your husband needs to realize it’s a team effort to set up SN kids for success and that success may include having different standards or expectations aligned with your actual children - not the children he wishes he had.

And Yes! It is really really crappy that you both have to coordinate and plan ahead and work SO HARD just to have a simple outing that other families take for granted.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I think the less you go on trips though, the less exposure your kids will have to doing this differently and being more flexible.

We have tried this. We went to the beach this summer (just our fam) and one or both of the kids had daily meltdowns. Most days we didn’t get to the beach til 11. We tried eating out and DD cried because the pizza was not the kind she liked and the music was too loud. They can’t even eat Mac and cheese if it’s not the preferred type.

Op, I think your kids may need ABA and feeding therapy. And yes, your friends would notice this. Anyone would. Trying to hide these kinds of issues will require you are social pariahs.

I disagree - and not just because I disagree with ABA.
I think OP has both a kid problem AND a husband problem. The husband expects the kids to act NT and also likely expects them to react to discipline and motivation methods more suited for NT kids.

OP - I think you need to determine what the critical parts of a vacation or event are and then make a plan to help that thing be successful. Getting to the beach at a certain time, not shouting in restaurants, not having potty accidents, kids sleeping all night in their own bed. But you can’t have ALL the things. Just pick one and work on a plan. If you want to be at the beach by 9am, recognize that your expectations for what kids eat pre-beach or how many times you need to take them for a potty break may not be ideal. If you want them to behave a certain way at a restaurant for dinner, what things do you do in the afternoon to increase the chances of success? Do your kids need a quiet rest time after lunch to reduce the chances of sensory overload? If bedtime is a struggle, can you move dinner up so the kids are not all amped up from a loud busy restaurant?

Your husband needs to realize it’s a team effort to set up SN kids for success and that success may include having different standards or expectations aligned with your actual children - not the children he wishes he had.

And Yes! It is really really crappy that you both have to coordinate and plan ahead and work SO HARD just to have a simple outing that other families take for granted.

I mean this nicely, but no, you need more than one of those things to make a trip, especially with a group, successful. At least 2-3 if you're not going to negatively impact the rest of the families. OP is right to understand her kids' limitations and what will and won't work in this situation.

That said, I think that you should absolutely let these close friends in on what your family is dealing with so that you have support and don't feel so isolated. And I find your DH's behavior extremely controlling/concerning, and share the concerns outlined by others upthread.

[Anonymous]

How can they be your 'good friends' with who you have vacationed before and yet they don't know what is going on.
Seems very hard to hide and not sure hiding it is serving you or your family at this point.

[Anonymous]

I'm so sorry OP. This sounds very hard and I know how hard it is when you are on a different page than your partner. I would highly highly recommend telling your husband it is nonnegotiable for you for you all to have couples therapy. If he refuses, then like others have said get individual counseling for yourself. It is absolutely untenable to not share your children's diagnoses and maintain a full life in your community and with your friends. If you have friends close enough to go on weekend trips with, they will understand. My close friends have been so so understanding and loving to my son. They help pick me up when I worry about how he will maintain friendships, or a billion other things i worry about. They remind me that he is kind, and worthy and loved when I need to hear that. Your friends and community will actually understand LESS if you keep it from them. Then they are just worried on the side and concerned you aren't doing anything to address very obvious issues.

I realize telling you over and over again to share isn't helpful because it sounds like the true issue is with your husband's approach to this. And that is going to take time. I'm very sorry.

[Anonymous]

I would make sure that other people know what you're dealing with at home, both with your children and your spouse. Everyone needs to cut you some slack, but they can't and won't do that if you won't say anything and thereby grant them the space to extend that grace to you. By pretending that everything is NT in your family, you're forcing people to behave as though that's the case. And in a NT family, the general view is that kids misbehave because of poor parenting. You become the reason that "we can't have nice things" instead of the real reason, which is that you've got a family that has to grapple with all the challenges of having ND kids. Families with ND kids don't behave like the ones that don't and they shouldn't be expected to. By lying to everyone you're putting yourself in an impossible position where you'll be judged and looked down upon as a bad or ineffective parent. And I get it that your husband doesn't want you to tell anybody. But ultimately, you're your own person and he doesn't get to silence you unless you choose to let him. With your closest friends, I'd also confide in the difficulty being caused by your husband because you need shoulder to rest your head upon if you're going to make it through all of this. Let your friends be your friends.