To be fed up of Autism

[ImSoExhausted]

My 3 and a half year old son has been formally diagnosed with ASD for 4 months now. He was on the pathway for a year (relatively short, I know) but we'd suspected he was autistic from when he was about 9 months old.

I guess my AIBU is asking if it is unreasonable to be totally and utterly exhausted? I'm currently doing a very demanding degree, DH is a carer for DS1 and we also have another DS who is 15 months old.
I'm so fed up. There's two days where for 5 hours both DS's go to nursery. This is supposed to be when DH can do some work (he does some freelance bits and pieces) and catch up on housework. In reality, it's just him catching up on rest.

I completely understand why DH can't manage any housework, DS can't be left unsupervised for even a moment. He doesn't understand spoken language and is non-verbal. If he's left in a highchair he will rock in it until it falls over. He will climb over baby gates and is generally just an escape artist. This means DH spends his days shadowing him whilst still trying to entertain DS2.
When I come home from uni I try and do all the housework and make dinners/lunches for the next day. But it's getting so hard. The house seems to be permanently filthy and as well as the cleaning there's all the admin side too. I have to ring hospitals and chase appointments, phone schools for meetings, pay bills and do the shopping.
On weekends we try to get some cleaning done whilst one occupies the boys, we'll also try and do an activity together as DH can't really go anywhere with the two of them alone (he takes them on big long walks in the double pram, but can't take them to parent and toddler groups or the park iyswim)
DS1 is a two parent child. He needs someone running after him and someone keeping watch constantly for dangers and exits.

I'm so fed up of how Autism is ruling our lives. My poor DS1 can be so unhappy and distressed, then I feel like we're not giving DS2 enough attention because we're constantly facing problems with his brother.

I feel like I'm drowning. Nobody seems to understand the demand of having an autistic child. I get that everyone has to pay bills and clean their house, but our cleaning isn't 'normal' most people don't have to scrape feces of the wall multiple times a week. Most people can have wardrobes for their clothes to go away, not just boxes. We can't have any furniture higher than knee height because DS will climb it and hurt himself.

I don't even know what this thread is for. I just feel so guilty for almost wishing that DS wasn't autistic. I love him to pieces and he is absolutely amazing, but my god it's so difficult some weeks.

Nobody seems to understand the demand of having an autistic child

I think lots of people can imagine it, OP.

They probably don't know how they can help you though (if they're sympathetic).

It might be worth considering how to get other people - friends, family, neighbours etc to help you if they can. Lots of people have their own problems of course - illness, etc. But, honestly, I think lots of people do understand how hard it is (which is why they might keep their distance a bit, they don't know how to deal with it, if that makes sense e.g. pretend things are normal and so not interfere or say the wrong thing, or offer help and not know how that might be received or if they might offend you?).

I just wanted to bring you some and and

You sound amazing and I'm sorry that it's so bloody hard.

And what Steelypip said - see I couldn't find the words ...

@50Sometimes my Mum isn't really interested in helping us because DS doesn't say Nanny. That is honestly the reason. I remember being over the moon when DS counted to 10 for the first time (he'll count and say numbers and not much else) and the only thing she said was, 'Well when is he going to say Nanny?'
He doesn't even say Mummy ffs.

I don't really have many friends, mainly because I can't get out and socialise. I did wrongly presume that the people on my uni course might be a bit more understanding of Autism because of the degree we're doing, but it seems their idea of Autism is Sherlock Holmes and Rayman 🙄

i remember being in your position OP, sometimes the only thing I could do, and actually still do, is just let the housework just build up. It's so exhausting and time consuming dealing with all the extra work that I haven no energy left for hoovering, and cleaning windows or other bits of housework frippery. As long as everyone is alive, fed (taking into account all their sensory food issues), warm, clean (enough) then I just leave it all. Some days I actually manage to get a load of laundry done.

I'm so sorry about the nursery. [cross post - sorry]. That seems terribly unfair I must say. I think the EHCP is key as once this is in place the local authority are obligated to provide an appropriate personal budget for care provision to meet DS's needs. It doesn't sound as though the LA are doing enough to help you at the moment OP.

I second Homestart. They can be helpful. I think nobody except other autism parents can understand the demand of autism 24 hours a day seven days a week. It can be relentless.

YANBU, it’s totally normal to be so overwhelmed and exhausted by it. Some how you’re still doing it! Massive respect.
You need more support. Could you swap the school nursery for a private one? Then you could increase his hours. Failing that please keep pushing for funding for 1:1 support at his current nursery. Does he see a speech & language and/or occupational therapist? They may be able to give you tips to help him entertain himself for a short time safely.
Don’t stress about your housework, something has to take a back seat sometimes.
Google autism friendly activities local to you. Some soft play and trampolining places do Autism Sessions where your DH could probably cope better and both your children could enjoy too.
Please don’t feel guilty, you’re trying your best to do all you can for your two DC.
Feel free to PM me. I’m not a mum of a child who has autism but I’ve worked closely with them for 15 years.

Oh, gosh, mine have a similar age gap and I remember this age and the permanent shell shock that came with it so well.

10 years on and life is a little less fraught as they can both entertain themelves, to some extent (both ASD, eldest also ADHD), but we still have days that are total write offs.

How long have you had the EHCP OP?
Can you ask for a review? It does seem as though it isn't working to meet your ds1's needs anymore. Especially if the nursery are saying the support isn't enough

I completely understand OP. I have at least 2 DC with ASD (plus one in the diagnostic process). My youngest was diagnosed at 3 and went to a special needs nursery / pre-school for two mornings a week and another 2 mornings a week at a mainstream nursery with a full-time 1:1 SIPS (Supporting Inclusion in Pre Schools) worker. He didn't need an EHCP for the SIPS person or to attend the SN pre-school. Have you received portage at home at all? The portage team can also be very helpful - I think you can self refer, but the professionals you are involved with should have mentioned it to you.

It is really hard - I remember DC3 needed to be supervised all the time, had very limited language and no awareness of danger. Now the DC are older, DH is at work all day and I am working on admin, attending appointments for all the DC etc etc. Nothing in the house ever gets done beyond the bare minimum of washing and cooking. House is always a mess as kids don't help tidy up. It is exhausting. My other friends with DC with additional needs all feel the same.

I see, OP. Obviously your mother is being ridiculous. As for others, people can not want to see it, but I think they do know, deep down. Its just hard to get people to help, and the right people to help, of course.

I totally get the lack of socialising and friends thing. But I think its is really good to try and have a life of your own - everybody in the family has to have a slice of the pie. You're entitled to your life.

I used to know a lovely lady at my son's primary school with a non-verbal autistic child. I really wanted to help her (i really could see how hard it could be) but I had my own health problems so couldn't help - but I still kind of regret that I didn't offer more to her, regardless. I like to think she had support at her Church but I can't be sure.

Oh OP, your post about your DM made me cry. My DM advised us to "put DD in a home as there were places for people like her...." I also understand how wonderful it feels to get even the tiniest progress. I remember when DD sat unaided for the first time at 16 months - I cried and wanted to shout it from the rooftops but there was no-one interested enough to tell since all my friends children of a similar age were running around and starting to talk.

DS2 was 8 when he finally called me mum/mam (depended whether he was at school or home - mum in my own accent but mam locally, which his 1:1 said)

Do you have any friends with similar kids? My friends in the same situation have been a godsend over the years. It is worth trying to find some (not always easy, but tbh one makes a huge difference).

I have a severely autistic young adult son. He is having a terrible time at the moment, but apart from now the worst time was as a pre-schooler because the system hadn’t really kicked in with him. From starting school until he turned 16 things were easier. Not sure that helps but bear in mind you are in one of the worst parts of dealing with autism.

We had trouble getting access to a special school (he is now 18, non-verbal & requires 24 hour 2:1 support - aged 3 we were told he wasn’t suitable for a special school ). He eventually got in during year 1 (after a wasted 4 terms in mainstream primary) and that’s when things began to improve. I would insist on being able to look at special schools, telling you he has to wait is not acceptable. I would be way more insistent about special School now than I was way back in the early 2000’s. If I had my time again that is something I would do differently.

Maybe email whoever is head of the LA and cc the MP and councillor of they refuse to let you approach special schools. I have found cc’ing the MP will get LA’s to behave more often than not.

Our house is a mess. I think just concentrate on making yours safe. Nothing else matters really.

It will get easier with a supportive school. Honestly - the pre-School years are hard. As your son grows older your community will grow bigger. I seemed to lose loads of friends in the pre-School years, once the ones who can’t cope have cleared off you find the ones left and the new ones you make are the sort of strong, wonderful people who make the best friends.

It sounds as if you should be getting higher rate DLA - when is it due for renewal?

@rightknockered we don't have it in place yet, we applied in June and somehow we got refused. We were told there was no point in appealing and that we should reapply with new evidence which is what we're in the process of doing.
The nursery workers are wonderful with him, and I'm grateful for every hour he spends there. His key worker loves him to bits and has fought with us for every bit of extra support and equipment he needs. But even she knows it wouldn't be possible for him to attend more days, he's barely coping with two days atm, he'll only eat his lunch outside as he can't cope with the noise and he constantly needs to be separated from other children as he gets so overwhelmed

ImSoExhausted (unsurprisingly)

The primary ed board is great on MN for advice about admissions. A repeated theme is lots of schools say lots of things about admissions that have no basis in law. Given that your son does not have an ECHP it would be worth checking if schools can (in law) tell you they can't take him without 1:1 etc. My (non-expert primary teacher) understanding is at his stage his application would be treated like any other child's application and put into appropriate admission category. Not having an EHCP should not be a barrier to accessing a place at a school.

If you have means, I wonder if some sort of home based early intervention programme would benefit your DS? Linking with a behaviour consultant might be an idea?

💐💐🍷🍷 for you. I can only imagine how tough it is to hold things together but youre doing a bloody amazing job.

Have you got a disability social worker? They have knowledge of things that could help you, you may, if you’re lucky and get a worker who knows what they’re doing, qualify for a couple of hours of respite here and there. If you don’t, the usual way to find out about it is to ring your local council and ask to be put through to the disability team and ask for an assessment of need (that’s how it works here).

Wishing you luck, or even just a bit of sleep.

Odd @recklessgran that's so wonderful. Any progress is amazing, but I get it. Telling a friend your child did something that they should have done years ago can feel so insignificant. DS still functions around the 16 month old mark with his cognitive and social skills, so it seems pointless discussing anything with parents of similar aged children

My sons special school has nursery provision and spaces are allocated based on needs not EHCP, as most 2 year olds wouldn't have one. It's not the only school in the county to offer this either so it may well be worth looking into.

DS is 4 and has ASD. Our home is sparse with everything nailed down so DS can't kill himself. I'm in the US so I don't know what resources they have for you. What worked very well for us was to focus on communication first. We did speech therapy mon/wed/fri and play therapy tues/thurs. I then repeated the session afterwards. All therapy was in home. The therapy in someone's office just was never as effective.

Getting DS verbal made a huge difference. It's not about being able to speak but to be able to communicate. The speaking came a lot later. I also have boards for their schedules with magnets that they move over for each morning/evening routine.

Hello,
You are right. Its really tough. People (you, me) were not made to be endlessly giving of our time, effort and energy without it being replenished in some way.

I know you said your DLA goes on going out to SEN friendly places but if you are looking to get someone to help you look after your ds then some of the Learning Support Assistants at my previous school used to do respite care for some of our students who had very complex needs. They were very experienced because of the job they would do day in day out and also they were always in need to making more money because their pay is shocking. If its possible for you to get someone to look after your son for a few more hours a week (even if they are downstairs and you are upstairs at first) approaching your local special school may be a good place to look for someone who really does have the skills to be able to give you some respite.

You really can't be refused an appeal on refusal to assess for a EHCP. But never mind about that now.
Have you come across this
www.ipsea.org.uk/what-you-need-to-know/ehc-needs-assessments.
I used this site for all my children's statements (now EHCP's) I took my LA to tribunal for two of my children. LAs never, or rarely, act according to the law, in my experience.

Push for ehcp and place at specialist school Asap.
Get assessed by children with disabilities social services.

Look at the local offer for short breaks. What do they offer? What is criteria ?

Get re assessed for dla to get higher rate .As child gets older and issues more pronounced compared to same age child you can get 're assessed.

Get help.

Pay a cleaner or pay a slt or psychology student. Train them up so they can take ds.

Ask ss children with disabilities team for assessment and short breaks. You won't get without asking. Emphasise lack of family support.
( have ds asd sld no speech etc)

Visit possible schools maybe asd units he could go to.

OP just want to thank you for this thread. It has really made me think and realise how far we have come actually. I know that is no help to you right now but I hope you can feel the love from here and feel less alone. There are so many of us who are thinking of you and feel so much for what you and your family are going through.