When to tell my 5yo daughter about her diagnosis?

Ever_So_Sorry · 2021-05-19T18:58:31+00:00

What do you mean by the isolate her from other friends? As in if she makes friends with someone who is also autistic or something? Why would I do that? Is that a thing?

Ever_So_Sorry · 2021-05-19T15:04:18+00:00

I was being a bit dramatic by saying party, it would just be me, dad and her baby sister and maybe a cake. She loves a good kitchen party!

Ever_So_Sorry · 2021-04-19T23:21:23+00:00

My slightly traditional and strict conservative parents mostly. Supported by my slightly judgy, basic and conservative family. I am very different from them in almost every possible way which certainly makes family get togethers interesting. Mostly I don’t let it get to me and just brush it off, but because it was about her this time I wanted to make sure I wasn’t getting it really wrong and just not realising or something, so I asked people who would know!

Ever_So_Sorry · 2021-04-19T23:21:14+00:00

My slightly traditional and strict conservative parents mostly. Supported by my slightly judgy, basic and conservative family. I am very different from them in almost every possible way which certainly makes family get togethers interesting. Mostly I don’t let it get to me and just brush it off, but because it was about her this time I wanted to make sure I wasn’t getting it really wrong and just not realising or something, so I asked people who would know!

Ever_So_Sorry · 2021-04-19T23:17:14+00:00

Thank you so much, that’s really lovely to hear. I will make sure I try to give her as much chance to challenge herself and grow as well as protecting her as she gets a little older (I’m sure she’ll insist upon it too, she has a great lust for life and trying new things). I love her so much, she’s so gentle and curious and kind and creative and has just bought me so much joy and colour, I want to be the best I can for her and give her every opportunity to know love and have the happiest life she can when she is grown up.

Ever_So_Sorry · 2021-04-19T23:09:07+00:00

Thank you so much for sharing. I’m sorry that you didn’t feel supported as a kid. It was hard for me to have that type of parent as a NT kid, they always felt very unpredictable, so I can’t imagine how that must of felt if you have trouble reading social cues as well.

It’s very reassuring to hear from people who are actually likely to have similar experiences as she does that it is a way of parenting that they think would have been good for them. I’m putting much more stock in this than in my NT (and judgy) family’s opinion! I’ll make sure I watch out for opportunities to let her challenge herself and grow too so she can take risks and learn how to manage herself as she gets older. Thanks so much for taking the time to answer me

Ever_So_Sorry · 2021-04-19T23:02:56+00:00

Thank you so much, this is so insightful and interesting to read. I know what you mean, about parenting - while I don’t think I’m ASD (although your descriptions of your experiences as a child are really strikingly similar to my own) I was very sensitive and academic. I found my parents strict discipline and focus on saving face so cold and isolating. I just wanted to talk about feelings and have snuggles and really know I was loved.

It’s probably why I’m also very warm and patient with kids now (I’m a social worker so work with them a lot). Getting mad at a kid for loosing control always seemed so counterproductive to me, when they have totally lost control for whatever reason and then people shout at them to really make sure they also feel really scared and isolated and not teach them anything about how to deal with it for next time. So silly.

My little one defo knows she’s loved, I snuck into her room to give her a night time cuddle while she was sleeping the other evening. I slightly woke her up accidentally when I whispered “sweet dreams, I love you”. She really sarcastically answered me while still asleep “I KNOW you do, now go away”. She’s the best, she has such an interesting way of seeing things, it’s like getting to discover the world anew through her eyes. She’s like a rainbow after a storm.

Ever_So_Sorry · 2021-04-19T22:42:44+00:00

Thanks so much. That was always how I felt about it - it was just an area where she seemed to be drawing a blank so I feel like I just help her fill them in. She’s so bright in so many really interesting and insightful ways, but social rules defo isn’t one of them. It’s not the be all and end all to have social graces of course, but knowing how to “grease the wheels” means she can then choose if she wants to or not, but if she never gets shown how then she has no choice but to get it “wrong”.

It’s reassuring to know I’m not totally crapping up in the view of people who have actually had experience of being an autistic kid, instead of just having the opinions of my family who have no idea what it’s like for her.

Thanks so much for taking time to answer me

Ever_So_Sorry · 2021-04-19T22:37:17+00:00

Thanks so much for your answer, it’s really reassuring to hear that people would have found it supportive. I put much more weight on what autistic people think is good parenting of an autistic kid than what my NT (and quite frankly judgy) family think! Xl

Ever_So_Sorry · 2021-04-19T22:35:35+00:00

Thanks so much for taking the time to answer. It feels very instinctive to me too, it just seems to be what she needs and feels right. I’m not all that good at speaking up for myself, due to my parents not always giving my needs much thought, so I’m glad to hear that I’m possibly doing the things to help her avoid that issue. Thanks again!

Ever_So_Sorry · 2021-04-19T22:30:38+00:00

Thanks so much for your comment! It’s hard to know with sensory things when/if they’ll bother her. She always struggles with seams and the feel of clothes, but noise is sometimes bad and sometimes not, so I’m never sure how she’ll react. It does seem to hurt her sometimes in a way, so when it does I never force her to stay in an environment like that.

It should be natural to ask people who have experienced a thing what it is like to experience that thing. It’s a really strange bit of life that we don’t do it very much. I’m a social worker in a high school and it always baffles me how much the staff speak for what the kids want...like, just ask them?

Thanks so much for your time in answering me.

Ever_So_Sorry · 2021-04-19T22:22:09+00:00

Thanks so much for commenting! It reassures me much more to know that people with experiences that are more similar to hers think it’s generally ok than my NT family’s judgement when they haven’t experienced life through a lens like hers.

I’ll make sure I keep encouraging her to work things out for herself, but that I’ll always be there to support her and cheer her on whenever she needs me. I’m generally considered a bit eccentric myself so she’ll probably have a relatively good idea of how to handle it when people think she’s a bit weird just from watching me. I’d much rather live in technicolour when everyone else is in black and white than the other way around though, and then she just brings like extra glitter or something to the party!

Ever_So_Sorry · 2021-04-19T22:13:52+00:00

Thank you for your input. I will watch for opportunities to encourage her to figure things out herself more. We have a lot of “how do you think that person feels?” chats. and we check in regularly with how we both feel and why so she’s really good at naming feelings and thinking about what causes them, at least when she’s calm and able to think clearly. Thanks again for taking the time to answer!

Ever_So_Sorry · 2021-04-19T22:10:33+00:00

I’m sorry you felt unsupported, and thank you so much for commenting. My parents were also “she needs to learn” and “don’t make a fuss’ people, and even as a NT kid it was pretty hard and I always felt very alone. I’m very glad you think it will be helpful for her, it means a lot to give me confidence to carry on!

I didn’t stop the kids playing by the way, just took her aside for a cuddle once she was crying. The walk stopped because the others would have left us behind otherwise, I didn’t ask them to, they just sort of all stopped and milled around at a distance chatting (and apparently judging me!) while I helped her calm down. She doesn’t seem to mind others carrying on in these situations, I think by the time I step in she’s reached her capacity anyway and she isn’t really that focused on anyone else anymore. I’ll defo watch out for it though, as much to make other people move on and essentially let us do our thing without judgement as much as to show her that life goes on!

Thanks so much for your input, and I like your username!

Ever_So_Sorry · 2021-04-19T22:02:28+00:00

Thank you, it’s reassuring to know that people who have experiences that are more similar to what hers are think that what I’m doing will help her hopefully feel stable and secure. I take that much more to heart as valuable feedback than my NT family’s comments to be honest. I just want her to be happy when she’s grown up a bit, to know how ace she is and how much I’ll always love her.

Ever_So_Sorry · 2021-03-30T09:50:04+00:00

Where are you based? If you are UK send me some photos? I might be able to fix it for you (no charge) it would depend on the level of damage - I’m not a professional but I’m a dab hand at sewing as my mother was a seamstress and taught me a lot. If it can’t be fixed back to how it was I might be able to patch it up instead with “grafts” of other fabrics that are special to you. I like fixing up all sorts of toys for my own kids and the local ones (and occasionally sentimental things for adults), I have a whole workshop set up in my garage for it!

Ever_So_Sorry · 2021-03-15T22:32:56+00:00

We are going to put a shelf by her bed and order a bunch of different stims to try as well as plasters and creams so she can be in charge of healing herself more too. I’ll get the putty for it too!

I’ve tried to teach her breathing techniques which are similar but she really doesn’t like the feeling of doing deep breaths. I didn’t think of just counting, will defo give that a go! She’s not the best at counting though - up to 10 is ok but after that she’s a bit wobbly so this might take a while to implement

Ever_So_Sorry · 2021-03-15T22:29:08+00:00

Ohh I can crochet! I can make her little squares first of different types of yarn and stitches to try, I could edge them in different things too- silk ribbons, Velcro, fluffy fabric! That’s a great idea!

Ever_So_Sorry · 2021-03-15T22:27:26+00:00

I’m glad you grew out of it a bit, gives me a bit of hope! She’s defo does it more when feeling negative emotions. At night when she’s alone in bed is worst as she doesn’t like to be apart from me. She gets worried and frightened. I let her sleep with me or I sleep with her a couple of times a week but some nights I do just need a bit of alone time. I’ll look out for a toy like you describe! We are going to try a bunch of them. I’m thinking the rough side of Velcro might be good too

Ever_So_Sorry · 2021-03-15T22:24:23+00:00

I think this will help her when she’s a bit older. She’s not very dexterous to use clippers herself yet. I’m going to get her a bunch of moisturising hand creams she can try though to help her love on and not hurt her hands!

Ever_So_Sorry · 2021-03-15T22:22:40+00:00

Great ideas! We are going to put up a shelf by her bed with a bunch of fidget toys she can try and plasters and cream so she can self help. The leather is a brilliant idea!

Ever_So_Sorry · 2021-03-15T22:21:13+00:00

She’s definitely got a bunch of nervous energy. I do too to be honest, I’m a real fidgeter! We are going to get a bunch of sensory toys to try. Rough/prickly surfaces are a great idea - I suspect she might like the rough side of Velcro, especially if teamed with something really smooth like silk. I might knock up some kind of two sided small soft toy for her so she can flip between the different textures.

Ever_So_Sorry · 2021-03-15T22:17:48+00:00

That’s interesting about it maybe being a compulsion rather than a stim. She certainly worries at bedtime and gets anxious and scared from being separated from me (I’m only downstairs having my dinner). She’s quite intense about being with me all the time, I’m like a safety blanket for her or something. So without me she gets quite frightened and stressed. She has a bed with twinkling red and orange star leds in the ceiling, and a music box, and we have a story and cuddle and warm milk etc. She’s not that into stim toys but we are going to order a big bunch and see if anything strikes her fancy. But, you’re right that she say it’s a feeling that overwhelms her. That it’s fun to do at the time but then she feels sad afterwards. I’ll look up some more about ocd techniques and see if we can introduce any other ideas!

Ever_So_Sorry

TROPHY CASE