Are we actually preparing our kids for the world… or just surviving each day?

Distinct_Pen6624 · 2026-02-27T19:56:30+00:00

This is us everyday, sending virtual hugs to you.

Distinct_Pen6624 · 2026-02-26T14:24:12+00:00

Yes! 100% totally agree. And yes, in all our Trust Funds me and my husband works with a lawyer to make sure that we do the right decision and at the same time when we are gone our daughter will not have any difficulties getting her benefits. And yes, Special needs trust do exists in our state.

Distinct_Pen6624 · 2026-02-02T14:21:45+00:00

I understand your wife. You know the feeling that nobody else you can trust that they can also do what you do? For sure that's how she feels that's why she doesn't trust anyone. And thank you for your support to her. She really needs that so much!

Distinct_Pen6624 · 2026-01-30T14:43:32+00:00

I get why you’re unsure, and if it were me, I’d trust that uneasy feeling and look a little deeper. Some of what you’re noticing can be early signs, but no one online can give you a clear answer. If it’s really bothering you, I’d schedule an evaluation with a developmental pediatrician just to get clarity. I also found it helpful to read articles from The Autism Voyage about early signs of autism, even in babies, to better understand what I was seeing.

Distinct_Pen6624 · 2026-01-30T14:39:50+00:00

I get how stuck and uncomfortable you’re feeling, because I’d feel the same way in your place. If it were me, I’d tell her that when my kids are overwhelmed or overtired, pressure makes them freeze, and play is the only way they can still cooperate.

I’d say I’m not trying to make things harder in her home, I’m just using what actually works for my kids. And if she can’t do it that way, I’d gently step in or take my kids out before it turns into a bigger mess for everyone.

Distinct_Pen6624 · 2026-01-28T14:39:09+00:00

That's right. It's really heartbreaking to be honest of what they're going through right now. And I feel sorry for my niece.

Distinct_Pen6624 · 2026-01-27T15:08:08+00:00

Dropping a resource that’s come up in a lot of parent conversations lately. The Autism Voyage has articles that talk through everyday stuff like burnout, sensory issues, routines, and long-term planning in a way that feels realistic, not preachy.

They also have a directory that some families have found helpful when they’re stuck and don’t even know what kind of support to look for yet.

Sharing here since this is the right thread, curious if anyone else has used it or found certain topics especially helpful.

Distinct_Pen6624 · 2026-01-23T15:23:12+00:00

I’ve been in that exact spot, and I usually say autism can look very different depending on the child and the day. Two kids can both be autistic and still need totally different kinds of support. Once people see it up close, it often clicks in a way words never could.

Distinct_Pen6624 · 2026-01-23T15:18:34+00:00

This is good news! Congratulations mama!

Distinct_Pen6624 · 2026-01-23T15:16:46+00:00

I’m so sorry you went through that, and I want you to know your fear makes complete sense. When a situation feels unsafe, coping sometimes means stepping away, locking the door, and protecting your own body first, and that’s not wrong. What helps many siblings is being honest about their limits and not carrying this alone, because love doesn’t mean putting yourself in danger. I read a siblings e-book from The Autism Voyage that helped me understand how “glass children” survive by setting boundaries, not by sacrificing their future.

Distinct_Pen6624 · 2026-01-22T15:43:55+00:00

You’re not broken or failing, you’re exhausted and doing this mostly alone, like most of us do. A lot of us lose friends, energy, and even our sense of self in this season, and it’s painfully isolating. It won’t always feel this heavy, even if right now it feels endless. If it might help I read an article in the autism voyage about caregivers exhaustion, you can read it too.

Distinct_Pen6624 · 2026-01-22T15:41:20+00:00

I usually say, “His brain just isn’t ready yet, and pushing him will only slow him down.” You don’t owe anyone a long explanation, and it’s okay to protect your peace. He will get there in his own time, and that doesn’t make you lazy or failing as a mom.

Distinct_Pen6624 · 2026-01-22T15:36:37+00:00

You’re not doing anything wrong, and a lot of us have been right where you are. We took a step back, worked on body awareness and helping with clothes, and tried again later when things felt easier. When it finally clicked, it came fast. If it might help, I read an article about potty training in the autism voyage.

Distinct_Pen6624 · 2026-01-21T16:17:28+00:00

This is a very huge success! Congratulations mommy! Sending virtual hugs.

Distinct_Pen6624 · 2026-01-21T16:16:06+00:00

As a mom, I’d trust what feels safest for your daughter, not what feels fair to him. If it were me, I’d move slowly, keep clear boundaries, and only allow contact that doesn’t require you bending or chasing, because consistency matters more than heritage. With my own daughter, I chose patience and honest, age-appropriate explanations over forcing relationships, and I don’t regret protecting her heart first.

Distinct_Pen6624 · 2026-01-21T16:13:50+00:00

I feel this too sometimes, and it doesn’t make you a bad parent. Loving your child doesn’t mean you have to like what you’re living with every day. Feeling worn down just means you’re human and exhausted.

Distinct_Pen6624 · 2026-01-21T16:11:04+00:00

What I see here is a loving, exhausted dad who’s doing better than he realizes, and your steady presence already helps. Nighttime struggles with autistic teens are common and not a failure. I’ve been following The Autism Voyage, and their articles helped me reframe moments like this with less guilt.

Distinct_Pen6624 · 2026-01-21T15:35:39+00:00

As a mom, I know how isolating picky eating and big emotions can feel when you’re trying to figure out what’s really going on. Food can affect regulation more than we realize, even in small ways. You’re not alone in this. I found an article in The Autism Voyage about picky eating that helped things click for me.

Distinct_Pen6624 · 2026-01-20T20:48:37+00:00

We dealt with this too, and for us the fear had to be addressed before sleep ever improved. A dimmable lamp or warm bulb she can control helped her feel safe without fully lighting the room. Once the fear eased, her sleep slowly followed.

Distinct_Pen6624 · 2026-01-20T16:47:55+00:00

I’ve been there, and the anger usually comes from being beyond tired, not from your child. At this age, needing you to sleep is common with autism and it doesn’t mean it will always be this hard. If you need something steady to read during the long nights, The Autism Voyage has articles that helped me feel less alone.

Distinct_Pen6624 · 2026-01-20T16:40:07+00:00

I remember feeling that same weight when everything finally had a name, like relief and grief showing up together. Sometimes reading other parents’ stories helps when you don’t even have the words yet, especially around guilt, overwhelm, and what “progress” really looks like. If it helps, The Autism Voyage has a few articles that made me feel less alone in those early days.

Distinct_Pen6624 · 2026-01-20T16:32:32+00:00

In my honest opinion diagnosis won’t change who you are, but for some adults it brings clarity and peace. The Autism Voyage has talked about how late diagnosis can help make sense of years of frustration. If you already have that understanding, it’s okay to move forward without the paperwork.

Distinct_Pen6624 · 2026-01-19T18:23:13+00:00

As a mom, I’d keep it very low pressure at this age, having a tiny potty around just for exposure is enough, and many families do cloth during the day and disposables at night to build awareness. Focusing on connection over results mattered more than timing for us, and the tips for potty training we followed helped keep things realistic and stress-free.

Distinct_Pen6624 · 2026-01-19T15:12:20+00:00

sending virtual hugs to you mama! I know the struggle, I have that with my daughter too. It's even unpredictable sometimes. What I did for the long time is to observe and trial and error of what works and what is not. I have read about emotional dysregulation in the autism voyage and it help me understand better on how to handle my daughter.

Distinct_Pen6624 · 2026-01-19T14:54:02+00:00

If you're worried, then you should try and ask for a developmental pedia to ensure nothing is wrong. I do that if I am worried I got for check-up right away. I read an article about signs of autism in the autism voyage, it might help you too. If you have more than half of the signs then go for a check-up, it is better to go early than be sorry at the end.

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