I told my friends and it was a huge relief. I had so much FOMO. Now at 11, we are doing a friend trip again and I’m nervous but hopeful. Wish us luck!

Anonymous wrote:

Anonymous wrote:Thank you for the replies. My husband is adamant I not share the diagnosis with friends. He says it’s none of their business, it’s deeply personal information that we cannot control once shared, and he doesn’t want judgement, pity, or any sympathy from people who don’t get it. He also doesn’t want the kids being judged.

Here’s the problem with that line of thinking: your kids get judged harder. Your friends noticed the tantrums/picky eating/symptoms. They did. But they didn’t have context because you hid it from them. Also, your kids are learning that their diagnoses are shameful secrets. You don’t mean to teach them that, but you are.

Your DH’s stubbornness is isolating you from friendships and community you desperately need.

This. I’m far more judgmental if I think the parents are not getting their kids the help they need!

TBH, your friends probably already know. I am the poster who pays her teen to babysit the kids… We certainly knew something was up long before the family shared diagnoses. It doesn’t matter to us. No one is going to be surprised if their behavior is that bad.

Anonymous wrote:Thank you for the replies. My husband is adamant I not share the diagnosis with friends. He says it’s none of their business, it’s deeply personal information that we cannot control once shared, and he doesn’t want judgement, pity, or any sympathy from people who don’t get it. He also doesn’t want the kids being judged.

Here’s the problem with that line of thinking: your kids get judged harder. Your friends noticed the tantrums/picky eating/symptoms. They did. But they didn’t have context because you hid it from them. Also, your kids are learning that their diagnoses are shameful secrets. You don’t mean to teach them that, but you are.

Your DH’s stubbornness is isolating you from friendships and community you desperately need.

Don’t you think your friends know about your children’s differences (not anything specific), but still want to include you and your family? If it’s a local get together, could you all attend for an hour and then, you or your DH shuttle the kids home. If you take turns, you and your DH could socialize for a bit afterwards.

Can you share without naming the diagnoses? “The kids are really struggling right now when their routine is disrupted. We working on that, but right now a weekend trip would be a disaster.”

I understand wanting to keep the diagnoses private. But, it seems to be more about shame and embarrassment on his part. You are going to need support you can trust and be honest with- whether it’s these particular friends or not.

And the kids will be judged regardless of whether or not the specifics are shared, so you need enough other support that you can let that roll off of you.

Anonymous wrote:Thank you for the replies. My husband is adamant I not share the diagnosis with friends. He says it’s none of their business, it’s deeply personal information that we cannot control once shared, and he doesn’t want judgement, pity, or any sympathy from people who don’t get it. He also doesn’t want the kids being judged.

I've been a parent of a special needs kid who is now 23, so I have been in SN circles for decades. I'm going to generalize, but it is often the male parent who struggles with accepting the diagnosis and recommendations for support and help. I have certainly heard this from experts in the field and from my own experts who worked with us.

What your husband does not realize is that by saying nothing means that you close down support and understanding, but this is something that he will need to come to in his own time, or in my case, get therapists (like the OT, SpEd teacher, psychologist etc) to say the obvious. (Is it his embarrassment that he's trying to hide?)

You don't want to lose your friends - you need them and they need you. Plan events with them without the kids. Do something outdoors where everyone can run around - like lunch at a playground. You are not your husband and obviously can have your own opinion. I think you should tell him what you wrote here: I don't have too many friends left and I don't want to lose them. Clearly, we cannot share the same activities now that the kids are older, but by saying nothing, it puts a strain on my last friendships and I don't want to do that.

A suggestion to propose to him, but also to help you while he makes up his mind about how to speak about your kids to others:
To your friends: "Remember that last trip we took? Since then, it's become obvious that both of our kids are special needs. I don't feel comfortable going into details right now, but an overnight trip to a different place is not going to be possible. However, I still want us to be friends. Can we do something together as adults (and if you can swing it). It would be great if we could just visit a park/playground with the kids and have a picnic.

Best to you, OP. You have a lot of supporters on this board.

Bigger picture: I think the not sharing anything is going to end up being very socially isolating for you and you may need to continue trying to figure out what is a reasonable middle ground with DH.

Could you say something genuine like “I really value the time with you, and loved our past trips, but some medical and behavior issues with the kids make it really hard to do that kind of trip right now” and then as a PP mentioned, make an invite for some other socializing that does work for you so they know you’re not just blowing them of? And/or make an effort to keep socializing with them other ways (text/call regularly, send a “thinking of you and hope you’re having fun! Miss you guys” message during the trip)

Thank you for the replies. My husband is adamant I not share the diagnosis with friends. He says it’s none of their business, it’s deeply personal information that we cannot control once shared, and he doesn’t want judgement, pity, or any sympathy from people who don’t get it. He also doesn’t want the kids being judged.

I mean you can always lie, but why? If these are true friends the truth is better. It also sounds like therapy might be good for you. It sounds like you are ashamed of the diagnosis and that's hindering you from enjoying life too.

I have one who had the stool holding issue but isn’t SN. You could just pick one thing, for example the stool holding, and say they need to keep at home / in a routine for now because you’re working on that and want to keep it on track.

If they are close friends though hopefully you will share sone of what’s going on with them soon. Otherwise it feels like you just have a surface level relationship.

Absolutely share, OP. Why wouldn’t you? These are good enough friends to vacation with, they should want to support you in this journey.

And then suggest an alternative. “The kids need to sleep in their own beds or we all hate ourselves the next day so we are going to skip this one! After you’re back, why don’t we (check out the new Lego place at Springfield mall, take a day trip to go tubing in Harper’s ferry, check out an orioles game, whatever)

If they are truly your friends, I would share the diagnoses. I would also hire help. We have friends whose kids have similar SN, and I pay my teen to babysit them when the parents come over so their parents can relax. My teen cane take the kids outside and burn off some energy.

A true friend will understand and want to help you, not judge you.

I don't know, and I am sorry.
But I Would say if they are your good friends I might consider sharing the diagnoses.

How do you explain to friends who have neurotypical kids why a weekend trip is not possible for your young SN kids without sharing too much? My little kids both have SN (SPD, anxiety, high functioning autism, ADHD) but we are very private about their diagnoses for the most part with friends because the worst of their issues come out at home and generally - but not always - they do ok enough at school and daycare.
But our daily routine is very hard. Traveling is super hard. Both kids stool hold, are extremely picky eaters, have a hard time behaving and staying seated at meals, are poor listeners, have a hard time sleeping, etc. etc. As a result we hardly ever socialize for extended periods of time with other families and hardly ever host events. Socializing is hard for them and they can’t keep it together for extended periods of time so we are doing less and less of it so our friend pool of adult friends is slowly drying up. Even when we do go to events, their behavior can be embarrassing and take up my entire attention so I feel even more isolated than had we just stayed home.

Currently two of my good friends (there are very few now because I have very low bandwidth for friendship) are planning what had become a bit of an annual weekend trip. We stopped during COVID and last year we didn’t participate because we had a
conflict. The time we went before then was pre pandemic and it went so poorly my husband vowed we would never do it again. Against the backdrop of neurotypical kids who eat well, poop normally, follow directions, can put themselves to bed and stay asleep, don’t have tantrums and outbursts, etc. our children’s behavior is embarrassing, and it becomes the focus of my whole weekend and prevents us from enjoying time with our friends and is in stark contrast to their kids. It’s also anxiety producing,

However I don’t know how to explain this to my friends and get out of the event without looking like I am just being antisocial or that I don’t want to participate. Their kids are neurotypical and well behaved and they just don’t get it. I don’t want to share my children’s diagnoses or be on the receiving end of pity or judgement so I don’t know what to say. I’m also generally just starting to wonder if it’s even possible to maintain adult friendships as a mom of two SN kids. As it is I’m neglecting my health, my marriage is suffering, and every day is really difficult.