I don’t know how I’m going to get through the 6 weeks holiday.

[Usernumber637373639273719]

I have two kids with additional needs, they constantly trigger each other.

I know many feel like this I’m really concerned for my own well-being as well as my children’s. I would never harm them and I would do anything for them, but my patience runs very thin and I’m quick to flare. I’m totally burnt out, my mental health is in tatters. I don’t enjoy being a parent or being around them for long right now.

I am fighting for everything, the right support for my children as well as difficult relatives who think they know my children more than me.

I don’t work so it’s not a childcare issue but my partner works long hours, he’s a great dad when he’s home but when he’s at work the days are long. We live in a touristy area so it’s insanely busy everywhere so it’s difficult to get out.

my kids don’t know how to get on. My oldest 13 is autistic, PDA, has a learning disability, severe anxiety and ocd, he masks at school but his behaviour at home is awful, he gives me attitude all day long. He doesn’t manage well being at home all day so always needs to be out. He gets up at the crack of dawn and demands I take him out straight away for snacks whereas my youngest likes being at home. My youngest is speech and learning delayed and I believe she has adhd as she doesn’t stop all day!

my oldest can be violent at times and lashes out, he speaks to me like crap. My youngest is neither of these.

it gets to the point a simple ‘mum’ shouted from another room will over stimulate me and I will shout ‘what now’ straight away. 8 get sick of hearing their voices.

my youngest will entertain herself but my oldest will not end needs supervision and guidance. I don’t get chance to sit down for 5 minutes.

as much as I encourage independence my oldest refuses to do anything for himself. He’s 13 and demands I make him a drink, if I tell him to try himself he’ll scream at me. What a I meant to do? Enable it or refuse to give in and get screamed at?! He is a very demanding child and full on.

they are both hard work but in very different ways.

my son is also obsessive over food and if I don’t give in he will lash out. He keeps saying that we are horrible to him and he’s going to move out and live elsewhere.

a lot of is your average teen stuff alongside being autistic but it’s heightened due to his autism I think.

neither clean up after themselves despite me asking to!

this has all really heightened over the last few months with my son starting going through puberty.

my house isn’t big enough for them to be too separated - they have a bedroom each but they just trigger each other.

I can’t go on and the summer holidays coming is making me very low.

what am I meant to do? I’ve reached out for support in many ways but not getting anywhere!

I don’t have many friends and family don’t see the issues.

Do you have the resources for holiday clubs for them alternate weeks so you only have one at a time?

If your kids are on free school meals your local authority might have some free holiday camps available https://www.gov.uk/government/publications/holiday-activities-and-food-programme/holiday-activities-and-food-programme-2021

Your partner should be taking A/L and maybe some parental leave if you can afford it

Problem with holiday clubs for kids these ages is if they don’t want to go, what can you do?

It sounds awful, OP. Will your husband have any time off?

So sorry to hear you are feeling like this, and having to cope with everything. I wish I had lots of answers, but I'm afraid I don't, just didn't want to leave your post unanswered.

My eldest is autistic with high anxiety and youngest is on the go all the time. Have totally different interests and when they were younger they clashed all the time.

Things that helped a little:

Not fighting on the food/drink side of things. Having lots of drinks made up in the fridge, so they can help themselves, so they aren't always nagging you, but you don't get the tantrums about making their own drinks.

Food wise, have a meal plan for each week, put it up on the kitchen wall, so they know the meals. Then give them a snack basket each, put as much as you are happy for them to eat per day in them. Make it clear that once its gone, its gone- add snacks they like but don't love as well as treats, that way they may pace themselves more on the less exciting treats.

If your eldest likes being out and doing things, can you set up a rota of different activities you could do with him in the morning in the garden, whilst your dd plays inside?

Both my children responded really well to having a summer timetable up, so they knew the holiday routine.

For yourself, do you have any local parent support groups?

Also can you book some evenings during the summer that you take for yourself, arrange with your partner evenings that work well for both of you, that you can go and do something just for you and he can look after the children.

My kids don’t get free school meals and there isn’t much in the terms of holiday clubs around here and those there is is just for kids who get free meals I think! I don’t think even think they’d want to go anyway 😭

I should have said my partner is a great dad. He comes home and puts our oldest to bed so I get time with dd, when he’s he is hands on etc but the days he works are 12 hours so the days are incredibly long. I do drive and have a car but it’s always so busy out!

I’m surprised your family don’t see the issues given what you describe. Is that because they ‘behave’ around them? If so, some of their behaviour is chosen & you may need to put in firmer boundaries. Can family not help out at all over the summer?

Do you have a local parent group in your area? They might share some experiences.
Is it possible to send at least one of your children to a holiday club? I wonder if your daughter can be sent to a mainstream club. It’s obviously more difficult with your son.

This is just not how autism works. Autistic kids often mask in front of others (ie conceal their autistic needs, try to fit in) and this is hugely stressful and tiring. Then when they’re in a safe space with a person they trust all of that stress comes back out, and all of their autistic behaviours are on full show. Imposing “firmer boundaries” at home would most likely lead to an unhappy, angry, stressed out teenager who’s much more likely to develop mental health problems.

Parenting an autistic child is very different to parenting a neuro typical child.

I suspect it’s less about the behaviour being ‘chosen’ and more about the children masking the behaviours while around other people.

@Usernumber637373639273719 I don’t have much helpful to suggest, just wanted to say I share your pain, though only dealing with one DS myself so can only imagine how much harder it is with two children with competing needs. One of our issues over the summer is that all of the ‘safe’ spaces that we go out to usually (DS is not in school full time due to SEN) are really busy and overwhelming during holidays and weekends.

Talk to your SENCO, there are schemes available over the holiday- in my area it is called Activities Unlimited but this may not be the name across the country. Certainly I think that they would look at how they can provide some respite and support for you.

In addition, do the children have any early help around them? If you chatted to them, they may have options available. It's worth asking everywhere you can.

Ask for a carers assesment via family liaison at the children's school.
They may be able to offer many things to help including a PA or holiday clubs that you may otherwise not qualify for.

Have a look at the SEND local offer on your LA’s website - they should have some form of holiday provision there. The leisure centres here run clubs and they’re part of the local offer so they’ll adapt to the needs of your child. I always let them know and send DS with a little instruction pack for the staff to explain his likes and dislikes and so on, and they’re really good with him. Even one day a week with one of them would be better than nothing!

Solidarity to you, it sounds like no fun at all 😞

I don’t think you give the dc the choice op. This is not about their preferences! It’s about you op getting through this.

My friends sen children have a regular babysitter for a few hours a day. This would at least give you a daily break

It sounds tough. Take them to the supermarket at a quiet time, give them each an allowance for drinks and snacks to last the week. Let them decide what to buy and let them put it in a cupboard that no one else is to touch. Explain what you are doing just before you go and say if this works and there is no screaming or demands you will do it the same the week after.
If you can afford to, get a babysitter for a few hours a week. There are agencies that have very experienced staff and you can have a break and hopefully they'll respond to them similar to school staff.

Can they cope with soft play?

There is an autistic family support group in our area which runs summer events for autistic children. Split into different age groups. Some really good stuff for older ones like laser quest etc. I'd be very surprised if there isn't something like this in most areas

With regards to the holiday clubs, if you think your dd would go at all, it might be worth going through the young carers route, if her life is significantly impacted by her brothers needs, she might get a free space that way.

Then if she would do even a couple of days, it would make it easier for you to take your ds out 1:1.

I appreciate you might not want to, but if you are happy to say which county you live in, people could suggest asd friendly days out or places that remain quiet in the summer etc...

Thanks. Is that through a social care assessment? I’ve begged and begged for one but no luck. Both children have EHC plans but there’s just no support from anyone despite begging for it!

Thanks all. My son is a heavy masker, he masks at school and around others but see the downfall at home, in his safe place!

the school see him very differently to us at home. But a lot of his anxiety is school based. I have had to send videos of what goes on before and after school to the senco to get her to believe me, he was very dysregulated but will hold it in until he gets home. He gets home to school transport via a taxi and as soon as that taxi pulls up the mask goes on and stays on until they drop him back.

Is your partner having any time off in the holidays to help you?

Young carers assessment is separate to a social care assessment. I think it varies from county to county. But if you search young carers on your local county council website, it should have a link to who you need to contact.

With regards to short breaks/respite care, that is through social services, you should be able to self refer and ask for a form, they can't refuse that and should at least assess if you make threshold. But it is a nightmare isn't it. I called mash on myself and also got our local church and school to call, before I got any help.

Some other things that might be worth checking.

Some of our local special needs schools, open their playgrounds and equipment to families with additional needs over the summer. They charge a small amount as a fundraiser, but they are often quieter than main play parks at this time of year.

Have you applied for DLA for your children? I know it won't come in time for this summer, but if you haven't, it sounds like they would meet threshold and it might help with costs for future holidays and other needs associated with caring for them.

Are you on local special needs/asd Facebook groups, they often have lots of local suggestions

He has got some holiday booked yes but the whole 6 weeks is daunting still! Even when he’s home it’s still stressful!

@EnglishRose1320 thank you, I will look into it.

my area does seem to be behind in many areas!

both kids get DLA already thankfully!