Autistic child Christmas

[Shooowop]

Solidarity to those dealing with the needs of an autistic / special needs child today, as we know the sensory challenges and general excitement of the day can cause a lot of deregulation and challenging behaviour (my own is non verbal so makes it more difficult to explain what’s going on)

I'm sat having a cuppa alone savouring the last few minutes before everyone wakes. We go very low key and calm, presents not wrapped and staggered throughout the week so shouldn’t be too chaotic (famous last words), for us it’s more the meal that’s challenging and also staying inside (our usual places to go being closed etc)

And just so you know you’re not alone, not everyone’s Christmas looks like it does on social media or the telly.

I hope we all have some peace and some joy as much as possible 🎄 💪🏻

I’m sorry if I’m offending anyone here. I know my views come across as strong. I’m just really exhausted and worried and coping with my own overwhelm.

if I didn’t mask, I’d meltdown regularly in front of my kids. No one can say that would be good, surely?

My 14 year old autistic DD has been restricting her food intake for a couple of weeks now. It continues. School are aware. I’ve paid a private psychologist.

Not sure what else I can do :( happy Christmas

I look back on the meltdowns and are grateful they are done but there was nothing good to replace them.

This is what breaks my heart. How do you enjoy Xmas for YOU?

I'm not offended but I still do think your expectations both of yourself and your children are unrealistic, unachievable and aren't founded in any sort of anxiety or trauma based approach for resolution, Christmas and all it's expectations can be extremely stressful.

You want your children to behave a certain way, and they can't/won't and having the expectation that they should because you had to growing up is bizarre, to me at least.

If you are having to mask or internalise your meltdowns then you would benefit from finding an approach to life that doesn't cause dysregulation to you, and I still feel that it's unfair to expect your children to mask or internalised their dysregulation or behave in a neurotypical way. Gratitude and expectations looks entirely different for them, but it doesn't mean they aren't meeting their own expectations or aren't thankful to you.

Diamonds are formed under pressure from carbon, PTSD is formed under pressure from people. You don't create resilience by forced interactions.

That's the last I've got to say on it really as this thread was wonderful and about Christmas and all the trials and tribulations we've faced and I have already derailed it, but I genuinely wish you all the best and hope at some point you can find the energy to reflect and find some approaches that benefit you and the rest of your family in equal measure. Your needs matter too. Merry Christmas and a happy new year. ❤️

Why do you think you could not lead a comfortable life by compromising less and being more open about your autustic needs? E.g. dh is autistic, so he needs to work from home most of the time. He started out as a business consultant after Cambridge but realised within a couple of months that he was burnt-out and just couldn't do global travel and client facing work, so asked to move into the back office and work mainly from home. He still had a great career, at every promotion he just made it a non negotiable request to work from home at least 50 percent of the time and he never goes out for drinks after work etc. He is good at saying No to presentism. My dcs do their school at home (they get great grades, dd 12 is doing some A level maths already as they can better concentrate on learning at home) and they will live at home when it's time for uni and insist on reasonable adjustments like watching recorded lectures from home. My dd is not even a teen yet but already has a part time job, it's just something on her terms in an area she feels supported and enjoys. Christmas is the last day anyone should compromise, as it's supposed to be fun, and if you force people, it becomes tense and no fun for anyone. I think there is a difference between compromising and helping each other. Compromising is bad if it involves doing something genuinely stressful or painful just to please someone. Helping though is about finding ways of enabling each other to do what they enjoy. E.g. I like socialising and eating out. Dcs like everything to be quiet and to be in full control of their food, so I don't force them to go out to a restaurant with me, but I insist that they go and buy and make their own dinner (whatever they fancy (within a budget), whenever they fancy) and tidy up afterwards so that I can go out or grab a take way and don't have to cook very specific foods everyday. I love travel, and skiing, my dh and dcs hate it. We abortet our last family holiday after 2 days of meltdowns. Since then I go on my own, dh looks after dcs, especially as dcs are happy to look after themselves most of the time. Noone has to compromise as in enduring stuff that makes them ill, but everyone has to help make life enjoyable for each other. We all work hard in our family and are, even by nt standards, very successful. We are just very aware of the fact that if my autistic dh and dcs neglect their very specific needs, they'll burn out very, very quickly, and if I neglect my NT needs, I'll grow resentful and lose my mojo, and we'll all end up broke and miserable.

We had a better than expected Christmas Day. DS8 had to open every present within a few minutes of being awake, because the stress of not knowing what was in them made him anxious. But meh, no big deal. He only ate the bacon off some pigs in blankets for lunch so I made him plain pasta. He absolutely loved Wallace and Gromit which is a win because he hates the TV normally.

However, DH is being an arse and today DS announced (in front of DH) that he “wish[es] daddy was dead”. So that was a moment of festive autistic directness… 😬

So you do things separately? Maybe this is the change I need to make.

May I ask, have you ever mourned the type of Xmas/vacation you really wanted (everyone together having a good time)?

Now that my ND children are 13 and 14, is it kinder to leave them out of stuff (and let the NT folk judge away?)

I think I need reassurance that I’m not a neglectful parent if I let ND exclude themselves from activities, or if I get them less presents, or if I don’t teach them how to mask/socialise.

I just want them to have good memories and life skills :(

Oh dear.

How was he being an arse?

Yes, we do things separately. Admittingly, it took me a while to figure out that this is the key to happiness. Dh never was diagnosed, and he and I didn't know he was autistic, so at first I felt rejected by his big need for alone time (he works an awful lot and if he has spare time, he enjoys solitary gardening or DIY). My dcs seemed more social when they were little, so I enjoyed the early years of taking them with me on days out, restaurants, travel, but once they outgrew the pre-school years, more and more outings turned out stressful and ended in meltdowns. My dd was about 8 when she was diagnosed with ASD, and this helped me an awful lot to start understanding her and to navigate our family dynamics. I started to understand that wanting to spend time together had less to do with how much they valued and liked me, but much more with their actual spare capacity to socialise. I started to understand that if I truly want to show them my care and love, I leave them in peace and go off to do my thing (not as in walking off in anger, but while blowing a kiss and with a cheerful 'see you later, text me if you need anything'). We also do some things together, but mainly only 1:1. If it involves my dd, it needs to be planned around her food time and involve her favourite interests (like watching one of her favourite shows and movies, and she will give me an exact start and end time). We chat, but usually in the car when we can't look at each other. It's much easier to do something with 1 dc at a time and to choose something they like. E.g. most school holidays I'll take ds on a long weekend away, but we'll stay in the hotel room a lot watching ipad and going somewhere familiar, like McDonalds and save all of his energy/capacity for change for 1 new event we both want to do. DD usually enjoys active things, like GoApe or surfing, so I'll take only her to do that, but as she just can't cope with staying away overnight and eating out, we make sure to be back home at night. Dh and I will go out together to a nice restaurant once a week/fortnight around the corner from where we live, so kids can stay home and call us if they need us. We are looking forward to dcs being old enough to stay alone over night, so we can go on a nice holiday together. We don't have family meals (dd became severely anorexic as she found eating in school/at home in the presence of other people extremely stressful. She needed to re-learn to eat being given total control over her food and environment. She'll now shop and cook herself and eat late at night in her room when she is relaxed enough to be physically able to eat). I have a very sociable, people focused job, so when I come home I have been chatting to people all day long so appreciate a bit of quiet. We hardly have guests over. When grandparents want to stay over for longer, they are welcome but they were told that we don't do family meals and that certain times are quiet times in the house - I'm happy to entertain them by going sightseeing or eating out, but we won't change much about the routines dh and dcs have at home. There are probably some people who think this is horrible but we are genuinely happy. No meltdowns, hardly no fights. Maybe a bit boring but I take a bit boring over massive drama.

@HebburnPokemon I think they get very good life skills as a result. DD seems to develop PDA as soon as I make her do something, but once given autonomy over her actions she is extremely organised and responsible. She is in charge of her own schooling, grocery shopping, cooking, cleaning the kitchen, bed time, music practice and getting to her weekly unpaid part time job on time (she helps teach primary school children the violin as a volunteer class room assistant). She has her own bank account and must budget for her food. She's joined leader of a county youth orchestra. She is clearly different from nt children and I hope for her future that she gradually becomes able to spend more time with other people, but I don't think I get her there by forcing her to do it now. I think university and work have many more opportunities to accommodate autistic needs, it's schools that seem most inflexible and difficult and force dcs to mask and burn out/become anorexic, so we stopped physical school and are waiting for things to develop organically.

He’s fallen out with my DM (who is terminally ill). He’s also aggrieved that his “lot in life” is a disabled DS and a knackered wife. He’s done precisely FA to prepare for Christmas and keeps shouting at DS when he does autistic stuff, like talk too loudly or not eat. Hence the rather direct comment! Thanks for asking though. 💐

@Vinvertebrate 💐