How can I work?

[littlemousebigcheese]

Not sure what I’m after here, just need a rant. My daughter is autistic and has significant needs. She can’t use breakfast or after school club so my working hours are limited. In addition, anything like swimming lessons through school requires me to support. 6 or 7 afternoons a term so not huge but something that needs to be considered because if it’s not swimming, it’s something else where I’m expected to be at the school to help. I’ve also been called to collect her several times when she’s not able to continue the day or had to keep her home. I’m not complaining about HER, I love her to death and although it’s exhausting and hard I wouldn’t change her. BUT.
i would love a job or career. Im qualified to Masters level but i just do not see how i can get a job? Or what job i can even do. My husband is very supportive and does more than his fair share but is a higher earner so works 9-6 mon - Fri so that also hinders a bit as I have to do school runs morning and afternoon. I basically need a job that lets me dip in and out if needed, 9.30 - 3 max? It seems like it should be easy as there should be positions available to parents who have children with needs but no. I just want to cry really as I want something for me, I want to feel purposeful and useful and more than I currently am but it’s so hard!

The other option (which is what we did) is to find a private school and use the breakfast, after school, and holiday clubs there, so it's all on site and familiar. Obviously even better if they have a pool.

They wouldn't have been calling in parents at the drop of a hat, because most were in finance, medicine, law etc often with a commute.

My daughter may be more comfortable in groups than yours though. She's AuDHD but very sociable.

The most ND-friendly holiday activity we've found is music theatre. I described her to the producer and he said, "yes we have lots of kids like yours." And they did.

The school should not be insisting you attend swimming lessons and trips or she can’t go. That is discrimination.

You say DD has the funding but there isn’t the TA availability. Do you mean the provision is detailed, specified and quantified in F of the EHCP but it isn’t being provided? If so, you need to contact the LA. Ultimately, it is the LA who is responsible for ensuring DD receives the provision in F. LAs have been shown by the courts time and again lack of staffing is not a lawful excuse for breach of section 42 of the Children and Families Act 2014. Post back on MN for next steps if contacting the LA doesn’t resolve the situation.

The times the school is sending DD home, are these suspensions?

It sounds like you need to request an early review of the EHCP. On their website, IPSEA has a model letter you can use.

Rather than traditional childcare, have you thought about a PA? Either privately or via requesting social care assessments - carer's assessment for you and an assessment by the disabled children's team for DD. Also have a look at your local short breaks offer. Was the SEN camp via the short breaks offer?

My daughter is the same @Needlenardlenooautism, and adhd with some sensory processing disorder, sleep issues (the issue being that she doesn’t!) and gastrointestinal problems thrown in for fun. We looked into private school but the Sen provision in few closest to us wasn’t inspiring or as good as in the mainstream school she’s currently at so it was an easy decision. She’s moving schools soon so we will reconsider if necessary although middle school is well known for supportive Sen practices and has almost double national average of ehcps as many parents choose to send their child there.

@2x4greenbrickthsnk you for your comment. Her EHCP states she needs TA support and she has a 1-1 in class. There is no issue with that really, more that during extra curricular things or education off site like swimming or some other sports, they struggle to manoeuvre and get her there so discussion was had around safety and their obligations vs ability. She is very tricky out and about so I completely understand their hesitation especially as she ran into a road the one time I wasn’t present. I’m as keen to support as they are to have me to be honest. Even with her TA, she is hard outside of the classroom; it’s overwhelming, overstimulating, she is ready to run at any point and having me there is the safest option so I’m happy with the decision. My rant is more that it’s almost impossible to find work that understands the lived, actual reality of a SEN parent. It’s hard to find a job thats willing to accommodate the time off I might need.

she has been suspended twice, but other times I’ve been called because she’s at risk of hurting herself or others and she’s been so panicked or upset that I’ve taken her home or they’ve gently suggested she’s better off with me and marked as sick. I know it’s not ideal but it is what it is. Rules and the law are hard to apply when she’s shaking and sobbing in my arms 🤷‍♀️

I think my post is twofold! One, it’s bloody hard having a child with needs and two, society isn’t set up to support parents with children with needs. I understand it’s hard to employ someone who may need to disappear at random times and who can only work during the school day and term time but that’s the reality for a lot of parents so it feels frustrating that so few positions like that exist!

There probably are jobs that can be that flexible, but you probably need to start in a 9-5 post and then 'work up' to that level. Eg be an accountant working from home (my friend has her own accountancy business and can dip in and out whenever)

What are your qualifications? What transferable skills do you have?

@littlemousebigcheeseI’m not at all suggesting that this would work for you or that your daughter’s needs are similar to mine as I don’t know that. However, I used to work in a part time local role where I had flexibility and then two years I left to work in a city 45 minutes away where I had to be in at a set time, had to leave to go to school at the same time, and all the school refusal stopped almost overnight. School also learnt they would have to cope as I wasn’t able to drop everything and come collect/ sort things out. My ex learnt that he needed to step up and do half of everything. And now I have a good career and my daughter is happier than ever. I actually think she needed those absolutes of ‘leave at 8, after school club will be three days, holiday club three days a week in the holidays’ she knows where she is and knows that I won’t change things or give in.

Hi OP, we didn't know our daughter had SEN when we chose the school. We just chose a school that seemed really good to us and fitted our needs and it was good, and they were so skilled at supporting her, that when it later turned out she had SEN, she didn't need an EHCP because they already had things like low staff turnover, very experienced teachers, well run wraparound, on site clubs, a high staff to student ratio etc (I did obtain an EHCP to support her transition to secondary). Plus well maintained buildings. In my secondary it would be pretty easy for a child like this to escape because we have crap doors/gates/fences and not enough reception staffing.

It is difficult but you have the huge advantage of a very large household income and I must say that 9-6 is amazing for that kind of salary - most people I know in those types of jobs work more like 7-7 and every weekend, holidays cancelled at short notice, rarely able to leave except in emergency etc.

You can work if you want to. If you'd rather not, that is entirely up to you and your husband of course!

It is very difficult SEN parenting, but being on a low income and SEN parenting is surely much harder.

Yes it really is. I am in the same position. No one owes me a job but I would love to be more useful and less poor.

@Needlenardlenoo private school can be a high risk strategy. Fine if it works but many MS private schools will let children go if they get too challenging.

@littlemousebigcheese with activities all I can suggest is lean into anything that she loves even if it isn't an immediate childcare option, and talk to other SEN parents as the hidden gems don't need to advertise. DS's hobby doesn't immediately offer any childcare at all but with nice people who care, he has thrived there and is getting more independent. And it keeps him going when school is just too hard.

Well, school of any kind is a high risk strategy with any form of need. If you live in an area with academy schools, as I do, some of them may on the face of it take your child, but you will soon find yourself on the wrong side of the detention and sanction system. And that's if you can even manage to live close enough and get your child through the banding test.

Questionable SLT behaviour certainly isn't confined to the private sector! (I have taught in grammars, comprehensive and independent).

What I will say is that schools, however funded, are surprisingly variable and it is worth looking at as many as you can bear and trying for some insider information if you can and never assuming that because one school can't do X, there won't be another that will.

The first thing you need to do (for lots of reasons) is sort school out. It is not acceptable for you to be required to assist or collect her early. School are required to cover her needs. I have a dd with EHCP and 1:1 TA and have never heard of parents having to help in this way.
Our local council has an advice phone line which gives parents independent advice. Yours should too. They are over stretched and difficult to get hold of but if you can get a call back from them really grill them, because they are fantastic.
Also see if there are any local support groups for SEN parents. Carers trust run them local to me and we also have a very active parent carers forum. They again both have phone lines and are very useful. It is also useful to speak to other parents about local schools.
My dd needs more support from me and I haven’t gone back to work, so if you can’t do t feel bad about that. It may be that once she’s older it will be easier.

I work in a law firm and have found them to be extremely flexible around working different hours around childcare. You can apply to work part time and just do mornings? I'm not able to have all school holidays off but I've been able to take time off unpaid when it's been above my annual leave or condense my hours e.g. do two long days rather than 4 half days. May be an option to consider as it's a mentally stimulating job in a nice environment. I work with a lot of mums who were very supportive when I went through horrible divorce with 2 young children a couple of years ago. Best of luck finding something

Luckily you don’t have to work as your husband’s salary is so high. I would count that as a blessing and use your available time to pursue something knowing that you don’t actually need the money. Eg setting up your own business, writing a book, learning a craft to sell on Etsy. Or is it the social interaction you’re more interested in?

What are your degrees in? What did you intend to do career wise originally?

If the school is calling you to collect and DD is sobbing in your arms, the EHCP needs reviewing. Being able to work is more likely if the school situation is sorted.

So what is your question? Don't work if you don't want to.
Get a nanny if you do.

We can’t afford a nanny. Like I said in my initial post, this is more of a rant. I’m grateful for the space and for parents in similar situations commenting ♥️
I understand that school should be able to sort her out. They should also be able to buy colouring pencils and glue sticks and employ more support staff but unfortunately the reality is different. My daughter is tricky, I acknowledge that. I’m very fortunate she is in mainstream as we’ve been told she should be in a specialist setting but for many reasons she isn’t.
I do not begrudge having to support her in school. I do not blame staff for struggling at times and calling me. I struggle at times and I love her unconditionally. The truth is that I do not want her upset or unregulated or having a breakdown at school where classes have to be evacuated or someone gets hurt. If the school take the easy way out by calling me, I don’t mind. My point was that finding a job around that situation is hard. If I was unavailable maybe they’d cope, maybe they’d manage. Or maybe they wouldn’t and she hurts herself or I have a broken wreck to deal with at the end of the day who explodes at home or who takes days to recover. Me helping with out of the ordinary events or going in to support on days where they have something different happening like a music day or visiting team doing performance art (two recent examples!) is a small price to pay to keep her happy in mainstream.
I feel useless and want a job to feel like my life is also about me. I just wish I could find that fits into my life!

Law firm idea sounds interesting and slightly relevant to my background so thank you for the idea

@InWithPeaceOutWithStressi think I’d like somewhere to go, something to be doing!

With an early review of the EHCP, you could at more or different support . Or a different placement if needed. Not for the school’s benefit. For DD’s benefit. DD sobbing in your arms shows there are unmet needs. Long term that is likely to cause further issues, including trauma, for her. An early review can help with that. It isn’t about forcing DD to remain at school when dysregulated. It is about reducing the dysregulation to begin with.

@Needlenardlenooit doesn’t go as far as you think! I am fortunate in that I don’t need to work for money and I’m very grateful for that. I often hear people say that high earners work insane hours but that’s definitely not true in my husbands field. 9-5 is max and it’s very trusting in that as long as he’s meeting deadlines and present at meetings, he can be where he wants so he wfh which is a great help in an emergency!

@2x4greenbrickreally good points, thank you. It seems to be noise, people, feeling ignored and instances of injustice (someone not getting told off for something she deems inappropriate for example) are her triggers. Those seem pretty common in any school setting. Recent meltdowns have been about the weather and her hair in her face. Hard to plan for or predict. I will look at her EHCP again. We had it reviewed recently but it might be worth a check.

Some kind of self employment may be your best bet if you choose something where timely outcomes are not that critical so you are available when needed for your daughter.

Several of those could be related to sensory processing difficulties. Has DD had a OT assessments including looking at sensory integration and does DD have sensory OT in her EHCP?

Does DD using noise cancelling headphones/earphones or ear defenders?

Some schools are noisier than others. Not just about the pupils but also things like how the building is built, furnished, flooring, etc.

Does DD have SALT and other OT provision in the EHCP to support emotional regulation?