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:

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.

[Anonymous]

OP as others have said, please tell your friends. Don't isolate yourself. I recently took a weekend trip with my very good friend and my ADHD +ASD son. Because I had previously disclosed the diagnosis we had a great time. She was very willing to accommodate all my son's needs (very very similar to yours). We looked for restaurants that served food he would eat. We stopped at grocery stores to purchase backup food, we got a hotel room with seperate sleeping/living area space and more importantly, because I had disclosed, I didn't feel judged when I said we couldn't leave a venue just yet (even though we were exhausted) because my son hadn't gotten the chance to do the one thing he really wanted to and was on the verge of a meltdown over it. Instead she found a spot to sit, he and I did the thing and then we left. Judgement free.

[Anonymous]

I am open with close friends and most friends about any special circumstances we have. If they are the type to judge us or our children, they’re not the type of friends we need in our lives.

Also, I’d rather be open about how difficult it is to travel than have my friends think we’re blowing them off.

[Anonymous]

Personally I think multi-family travel is the worst, with NT or ND kids either way, I hate it! Don't go! You do NOT need this stress in your life, OP. Make plans to see your friends locally.

Tell your DH that you didn't tell your friends but they already know, because the special needs are plain to see. He's the only one who's in denial enough to think people don't notice, and he'll probably be a lot happier when he stops trying to keep this a secret. It's not a secret! People can tell.

[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.

Hi OP - I say this very gently and lovingly (hard to convey online...) but this sounds more like something your DH needs to work on within himself. Unfortunately, not opening up to people you know and love, and that love you in return, will result in 1) isolation and 2) no opportunity to affirm that people ACCEPT you and your kids and your/their needs. Refusing to disclose diagnoses may also limit pathways for therapies and supports you didn't know where available to you.

If your closest friends judge you, they are not your friends, and it was bound to get in the way of the friendship at some point. They probably already know.

That said, I don't think you have to go on any trip that is truly horrible and stressful for you. Maybe you could organize a day trip that works for YOUR family, and invite others to come along. That way, you have some safe places/situations for your kids already planned out, and the others are coming along for the fun.

[Anonymous]

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.

[Anonymous]

Anonymous wrote:

Anonymous wrote:First I am sorry that among all the other challenges, you are also grieving the loss of adult social outlets.

It was life changing when my oldest started eating enough foods that we could reliably go to most restaurants and find something besides a milkshake. I am ok feeding my kid a milkshake and fries for a meal when we’re on vacation - but it’s an issue when you are with other families and they need their kids to eat healthier food. It’s hard to explain to others that my kid’s need to eat specific foods or stand up and spin in circles next to the table or sit under the table for a while for a “break” is not a choice or bad parenting. Now he’s old enough to play with a fidget toy thankfully.

In your position, I would just be honest. I would say “we’d like to go, but certain things are challenging for us.” I think if you ask for help and understanding, real friends will step up. When you try to hide it, they think your kids are “being bad” and you are “ignoring it”. If you let your kids be themselves as opposed to being embarrassed by things like autistic hand flapping or other stims - you may find that other parts of the trip are easier. If you get embarrassed when your kids are not acting NT, it makes it hard on everybody.

I know you think people don’t notice your kids differences, but they probably do. A real friend will have empathy and will ask “How can we make this trip easier / avoid triggers for Larlo?”

Feeding your kids anything to get them to eat is fine but it’s not ok to allow them to run around and spin. Maybe give them a tablet but the movement is disturbing to others and a safety issue for staff. Feed them before you go out. My kid would not even eat fries or a milkshake when little. There was also a time frame we just could not eat out and it sucked but it’s life.

I think we all need to get more comfortable with kids who stim. Agree there are safety issues to be managed, but I've gotten to a point where I care a whole lot less about disturbing people. We can all learn to be more tolerant of these differences. I'm over the idea that SN parents need to prioritize NT peoples' comfort over their kids' needs. One of my kids rocks in their seat during car and airplane trips. When we are flying, we are careful to put them in a seat where family is sitting next to and behind them to minimize disturbing others. Still, I got a complaint from a person 2 rows back about the rocking. I was sympathetic at first and tried to get my daughter to minimize it, but then this a**hole stayed up all night watching a movie and loudly talking to his girlfriend, disturbing everyone around him on an overnight flight. On another trip, I caught a 20-something laughing at and filming my kid. It still burns me that there is probably a video of my child out there on social media.

[Anonymous]

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.

That is really hard and I’m sorry. Hav the kids have neuropsych testing? If not, how were they diagnosed? I ask because I think you could have the diagnostic professional talk to your husband. You could also have him attend the Shapiro parenting work shop. He is going to need to come up with some parenting strategies. As for your relationship, it must be very hard to have intimacy with someone who is so rigid. I am very sorry. I hope things get better.

[Anonymous]

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.

[Anonymous]

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.

He's right that you need to go to therapy, not because your wrong, but because you very much need support in dealing with this situation. Starting individual therapy is step one. Hopefully the therapist can coach in dealing with him and the situation.

He's wrong to suggest that he doesn't have issues. Based on what you've written, he has MAJOR issues. Suggesting that your wrong to want friends (!?!), making connections always backfires, etc.. This is NOT normal.

You should also think hard about where your limit is, and how long you're willing to stay in this situation. That will also affect how much leverage you have to push couples/family therapy. It sounds like you've suggested it repeatedly in the past and then dropped it when he pushed. This sent the message that he can say no. At some point I'd think this refusal becomes a deal breaker, which gives you some leverage.

What happens if you just ignore him and tell your friends? And tell them about how difficult he is to deal with? And put all your cards on the table? If you're just honest with them regardless of him? I think you'd find support and understanding.

Now, one final, hard thing to put on the table - I don't know you or your situation, but there are also a couple of red flags that this could be an abusive relationship. The fact that he's cutting you off from other sources of support, the fact that you say he "flipped," the fact that he gets to control everything and you seem afraid to go against his wishes. Domestic violence doesn't always mean physical violence. It might not be this at all, but I feel like I have to put it out there, in case it is. If any of this resonates with you, I encourage you to reach out to support via family, friends, local organizations, or the National Domestic Violence Hotline at 800-799-7233.

[Anonymous]

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.

[Anonymous]

Op I would never ask my husband for permission to discuss issues my young child was having with dear friends who regularly see that child. The fact that you feel you have to is alarming to me. He is not your boss.
You do not need his permission.

[Anonymous]

Op your kids are going to need IEPs. Lots of disclosure is headed your way. You’re going to need to get comfortable letting the world of educators and therapists right up in your home. It is hard and often feels invasive but that’s being a SN parent and it will be necessary to get your kids what they need. You need to start getting your husband on board with this.

[Anonymous]

This is going to take a long time to work through. Skip the trip with basic explanation. Then go to individual therapy as a PP suggests as a start. Then as that PP suggests, move into parenting workshops. Take the long view. This isn’t going to be solved quickly. However, take simple but meaningful basic steps and keep moving forward. Put him mentally aside for now and focus on yourself and first steps.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Now, one final, hard thing to put on the table - I don't know you or your situation, but there are also a couple of red flags that this could be an abusive relationship. The fact that he's cutting you off from other sources of support, the fact that you say he "flipped," the fact that he gets to control everything and you seem afraid to go against his wishes. Domestic violence doesn't always mean physical violence. It might not be this at all, but I feel like I have to put it out there, in case it is. If any of this resonates with you, I encourage you to reach out to support via family, friends, local organizations, or the National Domestic Violence Hotline at 800-799-7233.

I'm sorry to say I agree with this, OP. Don't think to yourself, "He's not hitting me so it's not an abusive relationship." Please find a private time and space to ask for their perspective. Even if all they end up doing is listening or putting you in touch with a therapy network, I'm hopeful that our comments will allow you to find a new way of living for yourself. Nothing you've described here sounds healthy, fulfilling, or respectful. You are obviously a loving and thoughtful person with a lot to give. You deserve to have support.