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

[Anonymous]

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.

[Anonymous]

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.

Hmm. I think you might need to be a little more aggressive about heading these problems off before they happen. I have a SPD kid and I always take food when we go out to eat. That way if the food is “wrong” he can have a backup plan he is Ok with. When he was little and had trouble sleeping in new places, one or the other of us would read a book in his bed until he fell asleep. Is it ideal? No, but neither are SN — getting mad when things go wrong just means all your vacations are going to be ruined. Also, hire help!!!

Also hire a babysitter and leave kids at home when you go to social events for a while. You need to have friends.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

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.

Judging your kids against NT kids is an issue and sets them up for failure.

+1. This is a huge red flag that your husband has issues he needs to work through. This has a strong potential to lead to greater problems between you, your husband, and kids. Do you think he’s in denial?

Op here. He is frustrated and angry about our kids and their diagnoses. I also have ADHD, as does my mom, and he seems to blame me for our kids and their challenges. He also repeatedly tells me how hard it is for him because me and the kids are all off in lalaland (his perspective) and he’s the only one who he thinks is paying attention to time, schedules, planning, household chores, etc. That is not true, and while I have always struggled with time blindness I try very hard to be attuned to the clock, the schedule we have, etc. He says he feels crazy living with all of us.

And actually I don’t think my friends know, I think they probably just think we are overbearing parents. One friend I see very infrequently and the other is usually socializing when we see each other at larger get togethers and usually pays little attention to what the kids are doing because hers can manage being unsupervised. I have alluded to the fact that our kids have challenging and we are working through issues but haven’t gotten more specific. I just think they do not get it, because their children are NT.

Op. They know. If your kids are not listening, are not eating normally or sitting, are not playing appropriately, are having bathroom issues - girl, they know. And if they don’t know now, they are going to very soon. Their kids are going to tell them. I have a kid with SN and I can spot a SN kid any old time, but I promise you, your friends aren’t confused. Maybe with very little kids you could pass as just having really hard kids, but, even then, most kids aren’t really hard. And they know you are hovering not because it’s your style, but because you have to and they don’t. You’re going to have to get over this one. Your kids are clearly quite impacted right now - doesn’t mean it will always be so - and that’s going to be really obvious to most people. It just is. Accept it. It’s the simple truth.

Your husband needs therapy. His kids aren’t a reflection of him or some status symbol. They’re not being completely NT isn’t some knock on him or something to hide. He needs to get some acceptance and reality.

[Anonymous]

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.

+1 he doesn't get to decide for the both of you.

You can share the diagnoses at a high level, more general than you have done in this anonymous post. Like pick one of the diagnoses or issues.

You clearly feel very isolated and this level of secrecy is feeding into it.

[Anonymous]

I have been at this a long time and have been on a lot of support boards. I do notice a tendency to bash husbands when other people give an OP advice, but I will tell you getting on the same page as my husband and becoming a team was crucial and has helped tremendously. If I followed some people's advice I would have done my own thing and we'd probably be separated by now. Your kid will be better off if can become a team again. Do not just decide to do your own thing and tell whoever until you discuss as a team.

My husband went through denial, embarrassment, etc. too. It was work, but worth it. I did get him to point where he was fine disclosing "SN" and we decided together who could handle all the info. Sometimes even close friends are not helpful...I had close friends who just didn't have the empathy, when they had plenty of empathy for other things.

We keep pushing gently to expand what we do with our child with SN, but we also recognize we have to preserve our mental health. Our friendships have absolutely changed. There are a small number of people we might socialize with as families because we stick to those truly accepting. There are work friends, and neighborhood friends and school mom friends who we see on our own where we know it works in a setting, but not in another. There are also friends where we needed to fade because we had no bandwidth and it was too much work.

[Anonymous]

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.

Judging your kids against NT kids is an issue and sets them up for failure.

X100000

You DH may have more triggers than your DC.

[Anonymous]

I haven't read the other replies, but my SN kid is now 20. I have to say, if I could do it over again, I would just forget all that "keep it private" stuff because it's exactly that mindest makes your life so much more unnecessarily miserable....and lonely and feeling misunderstood.

I wrote a whole thing but deleted it. This is the bottom line: my friends "got it" when I finally told them about the SN diagnosis. My life became so much easier when I could just be open about it. They also became much more tolerant of my SN kid.

BEFORE that, I could tell some friends just thought they were great parents and that's why their kid was so easy, and I must be lacking (maybe parenting too lieniently) because my kid was difficult. And you know what, I totally understand that because if I only had my NT kid, I too would think, wow, I'm such a great parent, I have this amazing high-performing kid. But having both kids, I know that my parenting style has little to do with it--to the extent that it's really humbling. Yes, I'm there for both my kids and very involved, but there are some genetics there that cannot be denied.

And OP, the crazy thing is, there are so many SN kids out there and it's much more open these days. And it doesn't have to peg them for life, if that's what you are worried about. You can just say that she might grow out of it, as many kids do. And the flip side is, without an explanation, the kid gets pegged as difficult or entitled, so you might as well give them a more helpful reason to explain their behavior.

Good luck, OP! it gets harder in the teen years....but then it gets easier! DCUM (and therapy) helped me through it!

[Anonymous]

Your DH needs to deal. Yes, it's super hard to be the only NT in a household, but isolating you from all your friends is unfair and isn't going to help anything.

Maybe you can get him on board with sharing a specific thing but not saying much. Like "Larla has been constipated lately so we're not doing long car rides." And then if they ask questions say "Oh, nobody wants to talk about poo" and change the subject.

My kids are NT and believe me, when I see my mom friends struggling like this, I often do know. Not the specific diagnosis, but that something is up. And I see the dad-denial too. Your DH is not hiding things as well as he thinks he is. And he needs to get over himself. Privacy has its place but ultimately it is for the benefit of the *child*. Not to protect a grown man from the reality of life because he finds it embarrassing.

[Anonymous]

Anonymous wrote: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)

This response is great--you're not "revealing the diagnosis" but you are explaining that you want to join but just can't this time.
And you absolutely have to consider your own mental health too.

[Anonymous]

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 think you have a dh problem. I really doubt your friends would judge your kids for something they cant control. I also dont get why sympathy isnt wanted. Isnt it nice when people say I'm sorry you had a difficult day?

I also dont think he has the right to control what you say. You can share without going into details.

[Anonymous]

Most normal people would not judge a child for having anxiety or adhd.

Most normal people would judge a parent who felt concealing his children’s medical diagnoses that affect social behaviors is more important than having friends.

Op, the fact that you guys don’t have many or any friends you socialize with - that is going to obviously clue people in to the fact that your family has issues. And the thing is, you have young kids. As your children age, everyone, from the clerk at the store to the art teacher, is going to likely be aware that there are some issues. Autism is autism. You won’t need to explain it all the time, but you are going to need to accept your children and help them accept themselves. How are they going to learn self advocacy if you do not have the balls to say, hey, buddies, my kids have some special needs and we have to do some accommodations that are kind of hard for other people to understand right now. We’d love to socialize more but a trip may be beyond us right now. Please let’s revisit

I’ve been open and honest with my group of friends. And now that my kids are older - we can go. And they are so happy and inclusive and supportive. If I had refused to go and not explained, they’d have stopped inviting us but I kept it open. I need them. And it’s been so great. Your kids are going to get easier. But you need to practice acceptance and allow them to accept themselves.

[Anonymous]

I would tell your friends "I love you guys, but I can't make it work this year" and then invite them to do adult-only activities such as dinner or drinks. You deserve to have friends and see your friends! You sound like a lovely person in a difficult situation. And it does not sound like this trip would actually be any fun for you or your kids, so why go?

Is your DH not able to care for the kids himself while you go out to dinner? Maybe that's a problem he could work on. Or you need to cultivate a sitter who can handle it.

[Anonymous]

Your husband can work with you or divorce you. He doesn't get to force you to deny the reality your life and your children's lives.

[Anonymous]

You don't owe them details, you can just say it isn't in the cards this year. Hell, tell them you can't afford it if you want to. But I agree with the others -- ultimately you are teaching your children that their diagnosis are shameful and should be hidden and you need to start practicing how to talk about it in a non-judgmental way.

[Anonymous]

you and your husband need to start couples counseling with a therapist with experiences with ADHD adults and special needs parenting. He doesn't need to agree that it's needed or there are issues here, just that it matters to you and he should go. If your husband refuses to go, you should go on your own. You deserve support. From a professional, from your social network, and from your husband. Your mental health and well-being matter.

Furthermore, your husband's current attitude, shame, and secrecy won't serve your kids well, now or in the long-run.

I once served on the board of directors of a high school for students with learning differences. Once of the things they did very best was teach kids that their learning differences weren't something to be ashamed of and hidden. The kids crafted their own "elevator pitches" that quickly explained their learning differences as well as their strengths and any accommodations they might need. So for example, "Hi, I'm Sam. I have an auditory processing disorder, so I have trouble if you give me important information or instructions orally - getting information in writing works well for me." It communicated clearly 1) I'm not ashamed of how my brain works, it's just who I am; 2) this is what I might struggle with and why; 3) this is what *does* work for me. Perhaps you could work on a parent version of this - a quick, matter of fact answer that gives outsiders the key info without having to go into all the details of their current challenges.