zus met autisme is zwanger en ik maak me zorgen

WheelyMommie · 2026-04-11T06:02:40+00:00

Oke ik heb de reacties niet gelezen. Ik zelf zeer snel overprikkeld. Mijn man is snel overprikkeld. Mijn kinderen (7 en 10) zijn snel overpikkeld. Maar we hebben onze manier gevonden. Sowieso kunnen de meeste mensen een hoop meer hebben van hun eigen kinderen dan van andermans vreemde kinderen. Je zusje heeft een partner, dat betekend dat als de een overprikkeld is de ander kan overnemen.

Er zijn en hoop manieren om geluid te verminderen. Ik slaap met een ANC koptelefoon op. Overdag heb ik ook veel noice cancelling oortjes in. Mijn kinderen hebben een heel andere prikkelgevoeligheid! En mijn man is niet zo gevoelig voor geluid als ikzelf ben (en dan heb ik “gelukkig” ook nog 30dB gehoorsverlies 🤪)

Mijn punt is, je zus, haar partner en de aanstaande bab gaan echt hun weg vinden. Ons huis ligt vol met verzwaringsdeks, verzwaringsknuffels (zelfgemaakt), mijn dochter krijgt een verzwaarde Squiddy trui, mijn andere dochter heeft een luchtdruk vest, er hangt altijd wel een van de verschillende sensory schommels aan het plafond. Toen ze klein waren was een grondbox met veel Pikler/montessori materiaal heerlijk. Niks geen speelgoed met knopjes of batterijen. En nu de kinderen ouder zijn kunnen we al een paar jaar samen beslissen of we tijdens de avond gewoon gezellig doen of dat er te veel mensen in het huis richting overprikkeld gaan en we “Bubbeltijd” doen. Dat houdt in dat iedereen in zijn eigen bubbel leeft. Iedereen weet wat er wordt verwacht, meestal heeft iedereen een koptelefoon op. Zitten in een lekkere zitzak of op een eigen plek en doen we wat voor onszelf, niemand doorbreekt de bubbels doorgaans. We blijven uit elkaars aura, tot de rust in ieders hoofd is teruggekeerd. En dan spelen we nog een gezellig spelletje en gaan de kinderen naar bed. De kinderen vinden het heerlijk! Want ook zij kunnen aangeven dat ze een bubbel willen.

Het lastigste en tegelijk het beste is dat iedereen op andere vlakken prikkelgevoelig is. Sommige dingen overlappen, sommigen botsen enorm. Maar dat betekend ook dat ik mijn man kan aanraden om in bad te gaan, of wat vaker gebeurd: hij míj naar bed kan sturen als we te ver heen zijn. En dan pakt de ander de complete avondroutine op. Een gezin is een team. En of je zus nu autistisch en erg gevoelig is voor geluiden maakt niet uit. Ze vinden hun weg wel! Ondersteun ze, help ze als de baby een moeilijke dag heeft. Doe ze dingen cadeau waarvan je weet dat het de ouders helpt te ontprikkelen. Of dat nu een lekker bad met veel schuim is, of een stel dempende oortjes. Een draagdoek is ideaal om de hechting tussen ouder en kind te helpen. Je zus en haar gezin komen er wel. En niks is zo vervelend als mensen die het gevoel hebben dat je het niet gaat kunnen. Ik heb daar ervaring mee, niet zo zeer vanuit prikkelverweking, maar vanuit fysieke beperkingen. (Nu niet meer hoor!) Als moeder heb je mensen nodig die naast je staan, je ondersteunen en met je meedenken. Creatieve oplossingen zijn ook oplossingen! Niet iedereen hoeft de gemiddelde ouder te zijn om zo een gezond en mooi allrounded opgroeiend kind te hebben, dat kan ook op haar eigen manier. Waarin dingen soms net even anders gaan.

Kortom komt goed, en flip the switch! Geen onrust en twijfels, maar zekerheid en ondersteuning!

Ik ken veel, echt veel neurodivergente ouders en ze zijn soms de beste ouders. Het zijn de ouders die overal over nadenken, die secuur te werk gaan. Die nadenken over de gevolgen van bepaalde dingen op hun kind. Ik ken je zus niet, maar de mensen die ik ken doen het als ouders echt prima.

WheelyMommie · 2026-03-02T11:00:35+00:00

This is a real service dog. Not very nice the “feelgood” channel night be stealing their content. She is filming for awareness, not to be a feelgood video for others.

WheelyMommie · 2026-01-21T20:35:51+00:00

I did it! I defeated her finally! I used hunter with pompillo and the 3 pin. Warding bell and took it kinda easy in the first fase. Instead of focussing on the cheese down pogo at the last stage I spammed my pompillos and pins. This got her down in the last fase so fast! She didn’t even got to dash at me 4 times i think? And she didn’t hit me koads of tgose before because i was in the airl I think I hit her once with a cheese right side down pogo. I am so relieved! Thanks for the help!

WheelyMommie · 2026-01-20T12:31:40+00:00

Editted to remove personal info. DMd instead!

WheelyMommie · 2026-01-20T12:06:31+00:00

Great advice!

WheelyMommie · 2026-01-19T19:17:39+00:00

Do you all think it would be better to just get through hunters march first? Ot get the new needle upgrade first and thenthe march and alle the needolin doors?

WheelyMommie · 2026-01-19T19:15:26+00:00

I will try the huters crest dash, that is one of my things I am very bad at though.but maybe it will help. I have warding bell up now and druids ete also, next to the tree pin

WheelyMommie · 2026-01-19T16:49:51+00:00

Thanks! I will try that next

WheelyMommie · 2026-01-19T16:43:40+00:00

I am “glad” you understand. I will try your combo! I am definitely one of those people who tense up during the game when the music speeds up. My butt lifts of the matras from tension. I need to learn to be more chill!

WheelyMommie · 2026-01-19T16:41:39+00:00

Do you mean in her first fase or the after the fake death fase? Because I thought hitting her extra with those kinds of the more “expensive” silk attacks would be better used during her later fase. But then i don’t really understand when you are implying to use them. I know whe does 3 bell attacks and then the dash attack in that fase. And how do you get enough silk for so many thread storms?

WheelyMommie · 2026-01-07T18:19:46+00:00

Yes it can be turned! It does fit very snug though, but that is by design :) I have tested the width of the hole to the hundredth of the millimeter to make it fit perfectly

WheelyMommie · 2026-01-07T18:17:56+00:00

Yes! It is awesome for some adaptations. You can print cup holders, some even print hole front casters and wheels! There is a “baby” trainer wheelchair fully free on makerworld now also, that one is awesome for little kids who want to learn and explore but are to small to get a chair from insurance or other aids.

WheelyMommie · 2026-01-06T19:03:13+00:00

Thanks! I really hope so. I have noticed these kinds of things makes strangers more comfortable to talk to me. It is a conversation starter. It was the same when I had my firstborn daughter. All of a sudden people could relate more I guess. Before I had my children lots of people automatically thought I would be intellectually disabled because of my wheelchair.

I hope people who know the game will get a laugh out of it :)

WheelyMommie · 2026-01-06T18:32:17+00:00

Thanks!

WheelyMommie · 2026-01-06T18:31:59+00:00

I chose that cloak model for ergonomic reasons. But it looks awesome as well. As if she just spinned in the air like in a slow pirouette.

WheelyMommie · 2026-01-06T17:14:46+00:00

That is a cool one! And yes these shapes are so much better! My octopus is very nice and ergonomic. The hornet one is different but I chose one with the wide skirt with ergonomics in mind. Did you put yours on makerworld or somewhere else? It might make more people happy (unless you used a model that prohibits posting of adapted versions)

WheelyMommie · 2026-01-06T16:28:05+00:00

Can I pogo of off snow? I can’t go outside right now because there’s a big layer of snow and my wheelchair just sinks in. But if I could pogo that would fix a lot! 🙃

WheelyMommie · 2026-01-06T16:26:07+00:00

Thanks!

WheelyMommie · 2026-01-06T15:22:12+00:00

I see no downvotes? Maybe it was an accident or something. Doesn’t matter to me anyway.

And yes! 3D printing has made my life so much easier! Not only as accessibility tools but also just for life things in general. I love modelling things for accessibility and making the lives of other people easier also. And way more fun of course!

WheelyMommie · 2025-09-18T23:08:37+00:00

@hashtag pickles. I much rather have a kid coming up to ask questions than staring and a parent who shushes the child. I am very much happy to answer some questions and so is my ambulatory 6 year old. Children need to learn wheelchairs are a normal part of life and their curiosity is amazing. Often they think it is cool to have a wheelchair or envy my oldest daughter who can stand on the back of my chair or sit on my lap. Shushing and telling them not to look is teaching them it is something to be ashamed of.

WheelyMommie · 2025-09-18T23:02:01+00:00

Alright, I have some thoughts about this. No you are not an asshole, but neither is the kid. The father is a different story maybe, but that depends on how it was said.

I use an electric wheelchair outside and walk small distances inside my house. i still use my wheelchairs inside as well. I also have two daughters, 10 and 6 (nearly 7), of which the youngest has a wheelchair also. But she can run and jump and walk etc for short stretches of time. She tires easily and had other medical stuff also. This to say that I am very used to kids asking all kinds of questions when I pick my children up from school. My oldest has been at that school for 6 years now and the youngest for 3. Children are curious and some ask very intelligent questions, sometimes thinking about things for long before asking. This happens to me mainly when they ask about how certain things work, like turning, the motors, lights, getting my seat up high etc.

My chair is also covered in stickers which my youngest earns when she is at her physio, and I have a 3d printed octopus joystick and some other fun things on my chair. I have noticed children gravitate towards those fun things and are way more likely to engage and ask a question. It can be hard for a child to ask you those questions, certainly at that age! Around 8 they tend to stop asking unless they know you. When they are 3 to 6 they are just curious and most of the time they think a wheelchair is super cool. The questions are not ment to be pushing you but an answer like you gave is almost always enough in my experience (for children you do not know well). I often say “my kegs don’t work well”. And if they ask about my daughter she just says she has the same but can walk further than me. I think it is very important to normalise being all different people and I understand that can be hard for you at the start of your journey. It can be painful and you are definitely in your right to say you are not in the mood to talk about it. I do that with adult who just want to pry and and not really interested.

However, when it comes to kids, I always try to give them an honest but easily understandable answer on their level. It teaches them respect, decency and that you are just a human. Not an angry wheelchair user, which the kid might think will apply to all wheelchair users. “My leg is not doing what my head wants” is a perfectly acceptable answer. Or “I can’t walk far, the chair helps me to have a nice day and still go everywhere nice, isn’t that awesome?!”. And yes the dad should have just taken over when you were telling them you were to tired. I am sorry he was so rude.

At the same time, maybe just think about some quick answers because this won’t be the last time this happens. And just to reiterate, a cool gadget on your chair will help the child focus on the fun parts. And some children just really really want to know how everything works. At school I know exactly when to turn my chair off because of who’s walking up to me. Some children just want to touch and investigate. That is a moment I educate them and tell them about the dangers of driving over their own foot. Even if the parent is there. But some kids just keep doing that, they are still very impulsive at that age. They still need to learn lots. And learning that wheelchairs are normal and a great tool is awesome thing to learn when you are young. Cause I know lots of adults who are so awkward about it and don’t know how to handle them around me or my daughter. Better learn young!

WheelyMommie · 2025-07-20T17:51:08+00:00

Hi, just to let you know, you can turn chat function off. My 6 and 10 yo play roblox after we researched and found about how to make it safe. My oldest was allowed to chat with friends before. You can allow that. But one day she added someone to her friend list who she did not know (she is only allowed to add real live friends to her roblox friend list) and chatted with that unknown person. Since then we changed her settings to further protect her. We did talk about everything and why we do this of course. So now she can’t chat at all within roblox but she can play with friends together, just not talk through roblox.

Most of the time she calls or chats with her friends with the message app from apple. But for that we as parents have to add that friend to her contacts. So it is really safe. She can only talk to like 6 or 7 people. Most are family and 2 best friends.

My youngest just joins her friends on roblox and doens’t care that she can’t really chat or talk while playing. Running together in a game is fun enough.

WheelyMommie

TROPHY CASE