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: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.

[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.

We used to feed our picky kid before we went out so if they wanted to eat more, great and if not they were not hungry. Even if it was good they liked we’d always give a snack before to prevent the wait meltdown.

This. When we traveled internationally, pretty sure my SN kid lived on chicken fingers and fries for every meal. Not the hill to die on during vacation.

This gets much better as they get older, too. Hang in there OP.

11 seems like a very reasonable time to get to the beach, also. What’s the rush? Your DH seems very rigid and that isn’t helping your dynamic.

[Anonymous]

Anonymous wrote:

Anonymous wrote:I have never regretted sharing our asd diagnosis nor judged another parent when they have shared their diagnosis. It makes life so much easier for general understanding and normalizing. While before I would judge a parent on food intake, knowing it’s not their parenting but necessary makes me check myself. When I talk openly about our struggles it helps our friends too as they deal with their own kids behaviors. That’s not to say that a diagnosis gets you a free pass, but knowing it’s not something you can control or punish a child to get a better behavior helps

Some people are pure mean. It’s no one’s business. You’ve been lucky.

I’m sorry for you. Anyone who is mean when I share a medical diagnosis is not worth having in my life. Having other parents first share with me takes away the stigma, and I thank them.

[Anonymous]

How old are the children? If really young, restaurants can be difficult to manage. Have you told your family about the diagnosis?

[Anonymous]

Mean people are going to be mean regardless. Oh her kid is acting up and I don’t know the reason why and I’m going to be mean and judgy and assume she’s a bad parent who lets her kid run wild. Or oh her kid is acting up and I do know the reason why and I’m going to be mean and assume that vaccines cause autism or something. Neither of those are people I’d care to be friends with. But you can’t assume that your close friends are going to be mean about a kid’s medical diagnosis.

[Anonymous]

Traveling with our kids is very difficult for us right now. I so wish we could go with you. Maybe when the kids are a little older we will be able to join you. Please keep inviting me because I do want to go and am hoping the kids will get easier soon.

[Anonymous]

I disclose for the same reason I disclose on a post in DCUM. If a poster says "my kid will only eat one brand of Mac and cheese" I'm told I'm enabling them and a bad parent. If a poster says "my kid is difficult to travel with", I'm told I should have traveled with them more or taught them to be flexible.

But once a poster discloses, people respond differently. A little more understanding. A little less pushback if they've never experienced it themselves. You won't reach everyone that way, but you will reach some.

[Anonymous]

Can you plan for an adult only girls weekend and leave your husband with the kids?

[Anonymous]

Ask your husband to stay home with them, and you go. Everyone needs a break sometimes. Hire a sitter to work with him. Let him do something g else sometime.

Tell your friends your kids need routines that just can’t happen on a trip. Maybe sometime, but you still like hanging out and value your time with them. They’ll be watching their kids all day, but you’ll have evenings.

Or do some variation of this.

[Anonymous]

With the additional details you provided OP, it sounds like a mix of couples counseling and parenting classes could be good for you and your DH.

He needs to become more adaptable and you both need to learn coping strategies to live life with your kids that have special needs. Learning their triggers, finding solutions for the triggers - headphones, iPad, bringing back up snacks. All totally do-able. If your husband thinks these strategies are "bad parenting" then you need to work through these compromises.

A great practice to consider that works with both adults and kids: https://www.inspirebehavioralhealth.com/

[Anonymous]

Haven't read the whole thread, but I feel for you, OP. My family knows the details of one of my kid's situations and it can still be hard to be together.

But--since I have told them, my mom, especially, is very helpful, loving, and a good listener. It's meant so much to me. Yours aren't going to be the only kids that your friends know who have special needs. They probably know something's up and want to support you. Please let them.

As for your husband, I don't think he gets to decide this for you, especially not with your friends. Parenting special needs kids is hard enough without someone else dictating terms for you. Please consider what it would take for you to make your own choices here. Yes, your kids deserve some level of confidentiality at some point, but they are young, you have your own life to live, and everyone spills stuff about their kids--it's been happening since the watering hole. Please reconsider this aspect of your life for yourself.

We're rooting for you.

[Anonymous]

Don’t give up your friends. Ask your spouse to watch the kids for the weekend and you go.

[Anonymous]

Being upfront about my DD's SNs has made all the difference. She's 25 now and a strong advocate for herself. SNs will out - there's no hiding them, so why not be proactive and help prepare the world for your kids (and your kids for the world)?

I'm sorry this is so tough for you right now. I hope you can find someone to help you and your DH through this period.

[Anonymous]

Anonymous wrote:I disclose for the same reason I disclose on a post in DCUM. If a poster says "my kid will only eat one brand of Mac and cheese" I'm told I'm enabling them and a bad parent. If a poster says "my kid is difficult to travel with", I'm told I should have traveled with them more or taught them to be flexible.

But once a poster discloses, people respond differently. A little more understanding. A little less pushback if they've never experienced it themselves. You won't reach everyone that way, but you will reach some.

If it’s Kraft, your kid is right on the one brand of Mac and cheese.

[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.

Your husband doesn’t get to decide what you share with your friends. Those conversations are some of the most private and intimate of my life. Why does he get to dictate this?

DP here. Perhaps OP's DH is afraid of being found out - but OP's friends already know.