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.

No advice just

If you think you’re tired perma try being the parent of a child with ASD. You have no fucking clue.

permatired

Why is it so difficult to understand op decided to have another child without really knowing if their first child had additional needs? She was being told all was well. Some of the time babies showing developmental delays catch up. Other times they do not.

Even if she were sure and decided to have another baby, it was her choice. It would not have been my choice, but it is a choice.

Exhausted

Sometimes it is just good to be recognised for how hard life can be. Hang on in there

Does he have Portage? Ask about that. Get a social worker ...theses are all important early things.
Have you done a training course regarding kids with autism.
Screw wardrobes and chest of drawers to the walls
You can have most things every normal parent can with a few changes.
We have a severly disabled child with ASD as part of his dx and a bit with HF ASD ( it's easier to parent the Severe kid than HF !!)meet people who walk in your shoes...this is really important!!!

I have 3 DC..... DS10 with HF ASD DS8 with severe ASD and severe disabilities and NT DD3.
DD3 only came along because she thought condom's and the pill were not for her?!! And neither boys had a dx by then. dS 8 was dx at 2.5 and DS10 was dx aged 9. If school don't help or agree you have no chance of a dx....
Life is difficult and you do have to adapt but we have 3 DC not 1.... Do we put DS8 in his wheelchair and give him his iPad and off we go!

Op I hear you. It’s so hard.
We kept being told it was the terrible twos, delayed speech, a lazy boy.

When HV was out seeing DS2 at 1 week old she raised ASD for DS1.

It hit us like a ton of bricks but once i started googling it explained so much & we feel so stupid we didn’t know.

He is at pre pre school one hr per day they can’t cope with anymore without a 1-1.

It’s brutal, it’s difficult & the stress is unreal.

I’m applying for DLA as my dad was doing childcare & he won’t be a able to look after 2 when I go back to work. Daycare won’t keep him without a 1-1 which I can’t fund. I might have to take a career break.

I’m in NI so things are different here, waiting for edu psych to come to nursery for assessment. Hopefully have a 1-1 for sept next year.

DS2 was very ill when born so whilst nothing showing now, chances are I’m going to end up with 2 additional needs children, I love them so so much but I wish life wasn’t so tough.

Like your DH I can’t do anything with the 2 of them myself other than a walk when both put into buggy inside house. DS2 will stim constantly, kick & throw his head around. I really resonate that your DH is similar & it’s one of the things that really really get me down.

OP, do you and DH have any kind of communication system set up for your son? And have you and DH tried something like a pictorial timetable to help him through the day?

My son was non verbal till he was about 9. I did home ed with him and I found the pictorial timetable really helpful. I also did wallet of photographs for him so if we were going out he knew where we were going.

My eldest son had ASD and ADHD and I absolutely understand how hard it is for you.

If you can get a cleaner which has previously been mentioned that will help. Also do you have anyone who can babysit to give you and your DP an evening off and some time together?

For us the best help we had was we attended a parenting course especially for parents of children with ASD. It was brilliant. It reassured us we weren't 'rubbish parents' which we were frequently told and meeting other parents going through the same thing who had a genuine understanding of the issues we were facing and could give practical tips was the most helpful thing of all. Could you contact your local council or health board to see if they run anything similar in your area? Or the ASD society do have support groups for parents which might be worth making contact with.

We were also advised to 'become the parents that everyone rolls their eyes when they see you coming' by a SENCO friend that was the only way we would get what we needed for DS. It was hard to do that as it didn't come naturally to me but after 3 years of literally driving the teachers mad and making complaints we finally have got our son a 1:1 in school and the difference it has made to his behaviour and ability to access the curriculum is unbelievable.

Having a kid with ASD is beyond difficult and especially juggling that with another child (we have also been concerned about DS2 safety at times). I am not a naturally rigid/routine driven person and sometimes I am furious we can't just do 'normal' family things that we had hoped to do. However There is help available that will help you and your son and that will enable you to really enjoy him. I hope you can find local support.

I understand. I have a 12 year old with autism and sld. It's like looking after a 12 -18 month old who is the same size as me but with the difficulties of profound autism thrown in as well.
Ignore any ignorant cunts that post. There are always some that are desperate to have a go at parents and carers of disabled children. Most people are decent people.

Hi. Do you have a portage worker? If not you should ask about having one, They come into your home and support you with DS, they suggest services that may be available to you and give you support as a family.
Find you local special needs school, even if it is a 30 minute drive away you should get free transport for him. At the school I work at we take children from 3 and you would get all of your 15 free hours.
There is a special needs nursery where we live too where you can pay for your DS to do more hours and they will support you with all aspects of your family life.

It's hard and some days are shit - literally! My ds was smearer too.

My advice would be to aquaint yourself with sendcop. It's the statutory document of what la should provide. Many try and enforce their own policies and their own way of doing things but they cannot over rule this despite them trying.

Don't allow them to delay school start because they've refused to assess for EHCP etc. If the nursery can't have him unless a 1:1 is provided get that in writing and appeal.

IPSea and sosson are brilliant for helping parents through the system.

Hello lovely.

I understand. I really do to the point I want to give you a big hug.

DS1 is autistic and he rules our household. He is incredibly demanding and won’t be left alone for a minute.

It took me 4 years to have another child. I was wrung out. My DS2 was born and he’s a delight but I felt my world being when I noticed similar traits that his brother had.

He has also been diagnosed now. I feel lost. I can’t do this again. I feel angry, fed up and am really angry right now!!

All I can say is take every bit of help you can. Whether it’s going in courses, DLA, applying for grants. Our local council is dreadful for children’s services so it’s so stressful trying to get any assistance.

I recently got a cleaner and it’s wonderful. Best thing I ever did. Keep things simple, park visits at the weekend, be kind to yourselves. Rest when you can and don’t feel bad if he’s watching a movie or in the iPad. You will adjust to a different style of parenting. It’s not easy, I’ve just come out from a long period of depression because I was trying to do it all. Something has to give. Start with getting a cleaner, then the pressure will be off.

And remember, be kind to yourself x

Perma.

You are an absolute arse.

Go and vent your I’ll informed and shit opinions elsewhere. And whilst your’re at it, buy a bigger pair of judgey pants.

You are the sort of person that makes parenting a child with additional needs so hard. I encounter people like you every day and you have no idea how your judging effects these families. People like you, have no no no idea.

OP, I was just coming to say really do get a cleaner. It seems such a small thing when you have so much going on but I do find it a godsend. I run two businesses as well as being a single mum so having someone else just take the burden of keeping on top of the day to day dust makes a massive difference. Worth every penny.

Permatired - you are sounding rather fascist - do you mean to?

Ds1 is very severely autistic - about the worst it can get (requires 24 hour 2:1 care at huge cost to the state- I won’t tell you his current weekly bill - you’d have a heart attack).

Aged 2 (while pregnant with ds2) I was told he had ‘mild language delay but improving rapidly’. While pregnant with ds3 (when he was 4), I was told that ‘he definitely isn’t suitable for a special school, he needs mainstream’. So if you think that outcomes can be predicted early on then you clearly know more than the professionals

Lucky we had ds2 and ds3 as future tax payers eh? Otherwise our family would be really expensive.

It’s a long time since I have read anything quite so shockingly unpleasant on mumsnet.

And op a HUGE advantage of a disabled child is that you just don’t have people with the views expressed by perma polluting your life. I call ds1 my filter - he filters out the people I wouldn’t want to know anyway.

You guys are amazing parents. The kind I look at in awe after a long day in my class, with a team of TAs, specialist facilities, support and training.
I think something's could help-
Cleaner.
Locks on doors to control where he can go.
Investigate an OT with knowledge of sensory integration. Good sensory support/ understanding can help make world more manageable. I would make this a priority.
Lastly, there is support and help out there- but it seems that with austerity so many statutory bodies just refuse at first asking in hope that people give up. It's a disgrace.

www.caudwellchildren.com

These guys can help with funding a piracy of equipment- e.g. Buggy, trike, specialist bed, sensory kit, or with short breaks, or therapy at home.

My god some people are evil. Like they their kicks out of making judgemental nasty comments about people. Life is tough enough without someone who hasn’t got a clue wading.

I’ve just realised that I probably haven’t given you any useful practical advice OP. DS is currently demanding me play with him but I’ll reply properly in a bit x

Hi OP, have you looked into ABA (applied behaviour analysis). It is great for children of your son's age with no form of communication and challenging behaviours. Verbal Behaviour starts with teaching your child to ask for what they want and traditional ABA starts with teaching your child the relationship between their behaviour and a consequence. I've seen lots of ABA programs and implement ABA principles with my 4 year old ASD daughter. (First next boards, token economy, visual schedules, signing etc). Inbox me if you would like more information.

BTW it sounds as if you should be on a higher level of DLA. There are lots of autism friendly venues where I live which are very cheap or free. I would also make use of all the drop in groups in your local children's centres. Ours were wonderful before she started school and once I became comfortable with just letting her run around like a wild thing while the other children sat like little angels I was able to give myself some down time. It will also give professionals more of an idea on what you are dealing with on a daily basis.

Another parent of a diverse family here. DS1 autistic, NT DS2, DD current diagnosis social and communication difficulties (we think ASD).

I think the phase you're at is a really, really tough one. Its a lonely one too, when you can't access normal family groups and play centres.

We're lucky to have an active local NAS and a sensory centre. The monthly two hour parent natter groups are amazing for a bit of understanding support. I make maybe three or four a year but always come away with a few new things to try and realise that actually we've managed to find a few things that work that I can share. The signposting at these groups is great because evryone just gets the frustrations. You're not having to explain every little challenge - people have been there. They ran a great session on smearing and talked about creating different sensory inputs, two layers of wipeable paint etc.

I did some volunteering with homestart for a while and acted as chaufer to get a non mobile additional needs family out and about once a week. We went to a todler speech and language group encouraging sounds and interacting with other parents. If you have a homestart nearby they can be good.

We had a family support worker for a few years - accessed through carers assessment at council (i applied online via council website), mainly great for helping wade through the early paperwork and to signpost.

Regarding schooling, nursery hours etc get as much as you can in writing. Email is great. For example if nursery are saying no more hours without 1-1 or a school say they dont think they could cope anything you can add as additional pages too.

Are you getting speech and language support? Some of the special toddler groups run in our local area are great for helping progress but also for not feeling quite so isolated.

When DS1 and 2 were little I was a single parent and discovered our local play centre was dead between about 9 and 11am on a Sunday morning. We often had an hour or more of exclusive use where the DS's could run around and be themselves. Its the sort of thing others can point you towards if you can find the time and energy for a local parents of additional needs group.

Big hugs. I have three kids and two have asd. We know something was different about our middle child but she had a knot in her cord at birth and we’d not heard of autism so along cane number 3. It’s very very hard. My youngest has just started school who really don’t want her despite an ehcp and 1:1 but it is mainstream. Our house is never sparkling, something my mother can’t understand. I can’t talk to parents of NT kids as they’ve not remotely got a clue how hard it is. And then start to moan and how little Johnny asked too many questions (to the parent of two autistic kids one of which is non verbal). Which part of the country are you? Speak to Ipsea and also see what the local offer from your council is. Get to some special need groups if you can even if just to see what others locally get as each county will be different. Also ear defenders.

It is horrible and I don’t think people get how tough dealing with a kid with special needs is. My mental health has taken a massive battering because of it.

We are all here for you if you want a natter and to vent. If you want to pm where in the country you are I might be able to help with specific advice. I have two sons with asd- one is extreme and was diagnosed at 2 and my youngest has just been diagnosed at 13. Everything is a battle I know.

We are just going through the EHCP process with our 3.5 year old and also for turned down the first time. I was so angry - he is almost nonverbal. I rang up the lead SEN in our county after threatening to go straight to a legal tribunal and she said we were missing an Ed Psych report so nursery have now arranged this.

We have looked round quite a few special schools and enhanced resource schools without an EHCP - to be honest, I didn't even tell them we didn't have one when I rang up, just said he had autism with severe communication problems.

It is so hard.