Any sen parents managing to work please tell me how I can keep my job

[Goldenfan]

Hi all,

I have 2 children. 1 is autistic. She is very high functioning but does have her struggles. I am married and my husband is fantastic however my eldest is my child from a previous relationship and despite my husband treating her very much as his own I feel as though I carry the load with her.

I work part time and I have worked extremely hard through her life to do a degree and move up the career ladder quite quickly and I have managed to do this with only working part time too. I have always prioritized her needs. I'm proud that I have been given a job promotion with much better pay and working conditions etc

Anyway the older she gets (she's 8) and the more I learn about her needs the harder it is becoming to do both. I have been solely responsible for getting her up, to childcare and to bed etc and to look after her in between. We have no family help.

Bless her its not her fault but the day is usually started with screaming and doing her routines etc is full on. I have often felt like I have done a full days work before I even start paid work and then I come home to repeat it at bedtime/dinner time. I have had to gently force her to breakfast clubs and holiday clubs etc so I can work as i normally work out of the house in the community.

I now work from home so have been able to keep her home but that has not been without its struggles and I often feel frazzled. Now we are changing how we work, going back to the office and I am taking on additional cases in the community. I know she struggles physically and emotionally in childcare and I feel immense guilt at forcing her and it causes mornings and afterwards to be intense.

I doubt we would get any dla or carers allowance as she is so high functioning.

I can't afford to give up work and honestly I like my job and I like being someone other than mum sometimes.

My husband already sets off early with our youngest and he opens up the place where he works and can't change hours due to this. He has had to start finishing earlier to pick youngest up so I can concentrate on eldest as she often has Meltdowns on the way home so its hard to manage both children sometimes.

So basically I'm stuck needing to be in the office with no childcare for a child who can't cope with wrap around or holiday care and there is no specialist places where we live and practically no services for support.

What do others do. Can anyone advise me. Thanks

I wouldn't be entitled to carers allowance it seems.

Il still look at dla as it might help with mornings if we can get a morning nanny.

With claiming for DLA, it’s not WHAT you say it’s HOW you say it. Go onto somewhere like the CAB website and they will tell you all the phrases.

Things like: ‘xx is not able to dress herself independently. This is because she needs reminders throughout in order to stay on task. Without these reminders, she would not be able to get dressed. Xx needs to be supervised at all times to get dressed otherwise she would pick in inappropriate outfit. For example, she often insists on wearing only a summer dress and sandals during winter days and doesn’t understand that a coat will keep her warm. I need to remind her why each item is appropriate’

I’m an OT so know quite a bit about this. You have to be so detailed!!

Plus remember that you are describing her at her worst so don’t hold back.

Hi OP, my DS is not autistic nor high functioning. In case it helps this is what we’ve done:
1)DH working full time from home with a really great employer (ie as long as he gets the work done they don’t mind) DH is very responsible so will work whenever to catch up if needed, but it’s still stressful!

2. I had to stop working in my original career due to DS’s needs. So I retrained and started from scratch. Therefore now bottom of the ladder but full time but no travel no important meetings, etc. only problem is that because I’m bottom of the ladder can’t really ask for as much flexibility as DH has.

3. we found a childminder that could take children with SN (she gets paid more for a child with SN). DS was the only child with SN and she was amazing so we got lucky. We used childcare vouchers to pay, these may have been discontinued now (deducted from salary)

Now DS is a teenager (and tall) we cannot send him to the childminder anymore. Due to pandemic both DH and I have been working from home so we help each other. I will need to go to the office soon. We were told we could ask for a “carer’s assessment”, this has to do with money but with what additional support we need for care. we’ve requested for support with his needs during the holidays so that we can continue working!
DH and I both hate school holidays, it’s so difficult to look after DS while trying to keep our jobs.
He can’t really go to sports clubs or mainstream activities.
Not sure yet what support we will be offered, still waiting for their report.
Good luck with finding help.

I had to give up work when ds was primary school age and could only get back to it once ds settled into secondary school.

I had to claim dla and carers allowance. You should definitely submit a claim for dla.

Its not the dc with the asd diagnosis thats the problem in our house. Its dd who I strongly suspect is high functioning. She chooses her clothes the night before and she has a pictogram on the fridge where she picks the contents of her lunchbox. That removes 2 triggers for the morning.

Is your dc getting support at school? Sounds like they arent if there are meltdowns on the way to and from school. I think if they were better supported at school they would have more headspace when they come home.

You have to remember with the DLA it's there to help you on your very worst days. So you have to fill the forms out based upon your worst day experiences. Do you have a local autism support group? I found ours were invaluable when it came to supporting us through applying for the DLA. Good luck.

My DD doesn't have a diagnosis yet but we think she is high functioning autistic, since Christmas things have been really hard. Getting her to school has been draining and exhausting and then evening are the same.
My DH leaves for work at 6.30am so it's down to me to deal with the morning (unless when I've had a really stressful week he will wangle going in late to help) I work in a school 5 days a week and have a younger dd (9) and it mostly ends up with me going into work late stressed and in tears.
Work have been brilliant (sen school) but DD starts high school in a couple of weeks and I am terrified how she's going to cope and what will happen if she won't go.
If she loves school (which she has the potential too as she does when she's not anxious) and she is supported properly then all will be good. But if she refuses to go I don't know what will happen, do I just give up the job I love? Which of course I would, my girls come first and I would do anything for them but I don't want this to happen. I want to just be able to continue to work and my DD be happy in school. I feel like my brain is going to explode with the anxiety of what is going to happen in the next few weeks.

Sorry no help to you but just so you know your not on your own

No support in school as yet but hopefully that will happen soon.

I'm just so drained with it all to be honest but hey ho.

Thank you all for your advice. So glad I have this forum as no real life support. I don't even think there is an autism support group in our area. It sucks.

I hear you, it can be a nightmare. I was a single parent working full time at one point. I eventually reduced my hours and applied for DLA which my son got. He's now 18 and gets PIP at enhanced rate. He's deemed high functioning (whatever that means) because his vocabulary is off the scale.biwever he has significant learning difficulties and attends a special school sixth form,

I gave up work in the end 7 years ago as I just couldn't keep everything going any other way. On the plus side it allowed me to focus entirely on DS and getting the right education input. On the negative side it's left me feeling I am no longer employable.. am sure that's wrong but my confidence has been shattered by it all.

So sorry to everyone on here who has had a hard time.

@Whiskyinajar so sorry to hear this. Anyone would be lucky to employ you im sure.

My DD has just turned 7 and also has high functioning autism. To be honest childcare is a nightmare. I also work full time and have worked hard in my career and would hate to have to give it up.
We have managed to get her into holiday club one day this holiday however with her anxiety and need to control her environment this has been a struggle. Every Thursday and Wednesday night there are tears and anxiety. This is also on the strict understanding that we have to pick her up at a certain time. Not one minute before and not one minute after.
She goes to after school club one day a week and to be honest I think they were close to asking her to leave last time as she had a complete melt down. I didn't pick her up at the time she thought (I picked her up at normal time), it was too noisy and they were playing a game on the x box that she didn't like.
Am dreading back to school but I have no childcare that day after school so have no choice but to use it.
I have no answers OP but you have my sympathy

My DD receives DLA and she is high functioning so you may well be eligible.

Dla and carers here. I work very part time and tbh am exhausted with it all. Every now and then I think mine are high functioning and "not too bad" and get a text from a good friend who texts things like, "why not nip into boots on the way...." Ha! As if! A meltdown with an unavoidable change of plan. Missing going out somewhere child would enjoy because child hadn't known in advance it was happening... New clothes because old clothes are "wrong." 101 different meal permutations to cope with sensory issues. Other people seeing that as fussy/pandering...

So much of what we do every day to manage we have adjusted to and I sometimes forget we do as it's our "normal."

Ours is due for renewal in March and terrified of losing it.

As for work I am constantly frustrated I am not able to manage more than I do or I had a different career change pre kids to fall back on!

It’s really hard, OP. My DD is in her teens now and still needs care in the holidays.
I’m currently only working 15 hours a week and it’s still a struggle with DH working full time.

You are entitled to help though. As others have said get a DLA application in as it will unlock various door to support.
Call Social Services. In our area they have. disabled Childrens Team and ask for a Carers assessment. Also ask about Short Breaks funding and what help there is with childcare for children with additional needs locally.

I would also look to see if there is a local Parent Carers Forum or National Autism Council support group. (They are often on Facebook if you take a look).

Here’s some info for you:
www.nhs.uk/conditions/social-care-and-support-guide/support-and-benefits-for-carers/carer-assessments/

My son is 'high functioning autistic' or what would have previously been called Asperger's (I actually prefer that label as it depicts exactly who is succinctly). We haven't got a diagnosis but the Camhs nurse specialist has a 99% success rate for children he refers to the autism team and has said I must embrace that my son is autistic now and adapt to that as this is the reality. That made me apply for DLA, albeit very reluctantly. He gets medium rate care and low rate mobility. This is mainly because he cannot get washed and dressed without constant supervision, reminders and simple instructions. He showers for an hour at a time and then on occasions will avoid showering at all costs. This is beyond normal behaviours for his age. The mobility is because he is unpredictable around traffic. I am able to work less hours as a result (not hugely reduced but enough I am around a lot more for him). The money means I have time for my other children as they can get lost in the behaviours at times.
I have good support at work but I work in a very high demanding role and it requires a high level of accuracy and attention to detail. When I no longer get can reply on support from my parents it means I can employ overnight care when I work nights.
I have embraced OT, SALT, CAMHS and every other professional. I will look at the support from the LA soon as I've never really considered what they can add to the mix.
I have learned that despite being a senior health care professional working with children I am not beyond learning more and accepting help from all agencies.
Struggling on benefits no-one.
Apply for DLA using the cerebra guide. See what your LA's local offer is for children with SEN and embrace it.

My dc is older than yours but diagnosed with "high functioning" autism and receives HIh rate care and low mobility DLA. It is based on the additional care you are providing over what would be expected for a typical child. Definitely use the Cerebra guide , you are probably doing more than you realise.
In terms of work, the DLA allowed me to be able to go part time and I have a very understanding employer! I wish I had applied for the DLA earlier, would have massively reduced the financial stress we were under (and debt we got into) from unpaid leave from work etc.

It's very hard I'm a single parent to four (18,16,14 & 7) and my oldest has high functioning autism, wasn't picked up or even on the radar until she was a teen, things got really tough over the teen years snd I really struggled with working and left many jobs as it just wasn't working.

She's now 18 and works herself but I still carry the load with her and have to get her to snd from work etc

DLA goes on needs and you need to think about all the extra things you do for your daughter than you wouldn't do for any other child of her age, my dd now gets PIP but she gets enchanted on care and mobility

Thanks all, I'm just going through all the posts and making notes in my notebook.

I just explained to dh that yesterday dd went to holiday club and they took them out for the day to a play center. She was upset at pick up and it took 3 hours to get her to sleep last night. He was out so did not witness this. It was almost 11pm before she finally stopped coming into my room, crying, talking incessantly and making noises. He loves her to pieces but he struggles to see how the two are linked and how draining for me it is after having a hard morning with her and then working, then a 3 hour bedtime. It doesn't help that I'm almost certain he's on the spectrum, despite not being her biological father they are so alike and he can be so rigid. Hes so worried about her "being treated differently or feeling something is wrong with her" that he struggles to see that actually she is 'different' to other children her age. He hates either of our children being unhappy or unwell in anyway so he can sometimes bury his head in the sand.

If you haven't found it, yet, cerebra do an excellent guide to making a dla claim "Disability Living Allowance (DLA) - Cerebra" cerebra.org.uk/download/disability-living-allowance-dla-guide/

And yiu need to show your dh this image "Illustrating Equality VS Equity - Interaction Institute for Social Change : Interaction Institute for Social Change" interactioninstitute.org/illustrating-equality-vs-equity/