Sen parents - how do you manage the impact on siblings?

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My 9 year old ds has adhd, dyspraxia and is autistic. He's having a really hard time at the moment, school and social situations are becoming increasingly challenging for him. As a result I try to keep weekends as low demand as possible, we usually spend it outdoors away from people where he can just decompress and run around. However I also have a very sociable and outgoing 6 year old dd. I'm usually on my own with the kids all weekend due to my dp's job and balancing their conflicting needs is a nightmare.

I feel like I'm constantly having to tell my dd we can't do things because I know her brother won't cope with it. For example she was desperate to go to a local fair last week, but I couldn't take her because I knew my ds wouldn't be able to tolerate the noise, smells and crowds.
Today she had a party and while the host was really accommodating and let me drop and run, in the 10 minutes we were there to pick her up my ds had a massive meltdown. I feel eaten up by guilt, because it's like I'm failing both of them right now.

Why did you have to pick her up because he had a meltdown if it was a drop and run?

I think it's easy to prioritise his needs over hers because they feel more immediate and with a bigger fallout. But for her, this is a situation that will breed resentment and distance - for her brother and for you. It is a big enough problem that your DH needs to look at alternative work if you are to do both of your children justice.

She was able to drop her DD and run. DS had a meltdown at pick up.

I'm sorry OP, I have No idea how to navigate this.

Any chance your DH can change his job? Do you have any family that could support at weekends? Or could you afford to pay for a PA?
Divide and conquer, it's the only way.

Over time you learn how to manage situations eg ear defenders are brilliant and also sunglasses to reduce stimulation, I also found bribery worked wonders with dd1 (she has autism, dyspraxia, general anxiety and other multi letter disorders that I loose track of, each specialist gives new letters!) eg if you come to x for 2 hours you get y treat or extra computer time. Dd2 didn’t go without except she never got to go to an ai holiday place as neither dd1 nor their father would behave coped, I did take her alone after splitting up from their dad

Have you got any family who can help take your daughter to stuff? My sister uses to take my daughter out sometimes as I have 2 autistic sons

Agree with pp that this is a big enough deal to merit your husband changing jobs. I was going to suggest seeing if you can find anyone who could look after your son sometimes so you can take your dd out and do things together. I think you’re correct that this is huge for her to not have you available and to also have limitations on very normal activities. I am surprised at their ages that there is not already resentment brewing.

Do you have any family that can take DS - say every fortnight for Saturday afternoon so then you can do more social/ loud one on one things with your DD?

Otherwise finding a good babysitter building up overtime relationships with the babysitter so DS can stay with the babysitter?

I think it’s really important to give your DD one to one time so she knows she’s important too.

Otherwise I echo the others your DH might have to find a non weekend role.

Do you have friends with DC who understand? Maybe they could take DD along on their days out and you offer to have their DC over another day.

Would your 9yo be able to stay at home alone for short periods? My ADHD possibly ASD 7yo can, but we do live in a different EU country where it's normal for children to have more independence earlier than the UK. I know in the UK a 7yo would not usually stay at home alone at all, but by 9 it might be OK? Obviously that doesn't cover things like the fair, but could cover a party drop off.

If your DS isn't on any medication that might be a conversation worth having with a doctor, when DS2 started medication it transformed our lives from one where weekends had to be fully centred around allowing him to recharge from the utter nightmare school was for him, to one where we can balance the DC's needs much more. DS2's needs haven't disappeared but they are much more manageable, because he can now cope with school.

Sorry I may not have explained myself properly, yes as Dora said he had a meltdown when I picked her up, we were literally there no more than 10 minutes. My dp has just changed jobs to be here more in the evenings as they are difficult too, the trade off is he has to work weekends.

The resentment is what I'm worried about, we're not in a position to hire help but I do have family that might be willing to help a bit more.

And yes to considering whether the job situation could possibly change. DH explicitly asked me not to take a job which would have me working weekends and it does help a lot that we are both here and can divide up the DC when necessary.

Do you have a SEN social worker? Via them you may qualify for respite. My son used to go from school until Sunday ever other weekend so we could do stuff with the other 2

I do have a couple of really good mum friends that understand ds needs well, and I look after their kids regularly so yes I may need to call in some favours! I guess I've been guilty of prioritising ds needs over dds and it's come to a head over the last few weeks. I definitely couldn't leave ds alone, he has no perception of danger and doesn't really feel pain. I can't even trust him to be a lone downstairs in the morning.

Ah sorry Xposted with the job post. That is tricky and sometimes you have to make those trade offs.

13, 10 and 9 year olds here. 13 year old has a lot of additional needs and needs a lot of care and attention. Every house is different but ours wouldn't function well with a parent working either evenings or weekends. Dh is in a job he doesn't particularly like with a low(ish) salary but he can work 8-4.30 every day and never works later than that or on weekends so it works for us.

We divide and conquer a lot, either DH or I bring the younger 2 to whatever parties/activities etc are on while the other stays at home with DS1.

We get 2 nights respite a month for DS so they and use that time together to do stuff with the younger 2(just stuff like going out for dinner or to the cinema) that DS doesn't enjoy.

Big hugs to you, it's hard.

No we don't but that's something I will look into. His needs have really amplified over the last 18 months, since moving to junior school. He's newly diagnosed as we had to wait so long for assessments. The gap between him and his peers has become massive recently and school is causing him a lot of distress. I think that's partially why it's become so difficult at home.

Please try to make time to do things just with your daughter. A friend whose one child was profoundly disabled now bitterly regrets that she does not have a single photo of doing something with her daughter. Friends were kind and included her daughter in their days out , but now she has not got a single shared memory with her daughter. In her case her disabled son eventually had to move to residential care but sadly it was too late to really forge a strong relationship with her daughter. Please do try to find a family member who will care for your son even if just for a few hours at a time so that you can build memories with your daughter. Also ask school if they know of any local charities which run groups for siblings of children with special needs.

You’re going to have to prioritise your DD sometimes, otherwise she is going to resent the situation and it could cause huge problems over time. If that means your DH having to change jobs again then that might have to be what happens, there are plenty of careers which don’t mean working weekends and evenings.

Thank you for the honest advice. I'm going to try and make some changes and prioritise some 1 to 1 time with dd. I dont think she resents him yet, but I can see it heading that way if I don't figure out a way to make more time for her.

lots of different scenarios depending on ages and triggers.
currently i have family that have the non sen older child in day boarding, so that the child can have after school activities and time away.
the sen child is maturing slowly and the plan for boarding is temporary.

Register your youngest as a young carer. Our 5yo is registered for a similar reason. Yes, she’s not doing personal care but she does do things to mitigate the eldest health conditions and even at 5 can say what she’s worried / frustrated / sad about and the young carers service gives her a lot of support.

It's interesting how things have flipped, in the past it would have been the child with the disability who would have been sent to boarding school or residential care. Certainly that was the case for a friends younger brother now in his 60s.

I am a “sibling”. Growing up, family life was different from my friends’ lives, and there were many sacrifices. But also I could see 100% that my parents were heroes and (both at the time, even from an v young age, and with hindsight) I understood. My very disabled sibling made us closer and stronger as a family, in ways I see even more clearly now. Sometimes things were hard. But ultimately we were happy and I always felt very loved, which is the most important thing. You’re clearly doing an amazing job. Don’t feel guilty, you’re doing your best and that’s all you can do. Be kind to yourself and look after yourself xxx

My brother has a lot of additional care needs due to a severe physical disability. I remember growing up, we did do family days out but there would also be a lot of times where it would be a case of one parent would take the other children out and the other would remain with my brother of the activity wasn't suitable. My parents also utilised grandparent help and respite to ensure that we got plenty of one to one time

I have the same issue, to a lesser extent, with my two.

In your setup I wouldn’t worry about the weekend, I would just focus really hard on making sure that you have quality one-to-one time with dd.

So, if DH doesn’t work evenings, could you and dd do something every Friday evening? And could she have a club on another night which dh takes to and collects so that she has one-to-one with him on another night?

For parties, I’d drop and run (as you’ve been doing) if her behaviour is good and then ask another parent to walk her out at the end - you stay in the car with ds.

Couldn’t he stay in the car ? Reading a book or something?