To think it's impossible to have a career AND a child with SEN?

[meanieleanie]

If you think IABU - please tell me how you do it!

Holiday childcare provision is limited for children with additional needs, especially older ones. You're constantly waiting for the next phone call from school about their meltdowns or another incident. Regular meetings with SENCo. Specialist appointments/weekly CAMHs appointments. If you've got a school refuser, you're often late for work, or at risk of being so. Completing homework requires extra time and attention.

I'm feeling completely disillusioned. I'm in a role which, at the risk of making me sound like an arsehole, is way below what I'm capable of doing (and consequently way below what I'm capable of earning). But I don't need to be available outside of hours, no major projects are at risk if I have to dive out of work, no one minds too much if I'm late.

And this is from the perspective of someone whose child has relatively
mild SEN, not anywhere close to warranting an ECHP. I can only imagine how tough it must be for parents of children with more severe SEN.

It’s really hard - and the SEN are pretty mild in my family.

On top of the school disruption and the challenge to find childcare that works for the DC.... I’ll add to you how IME ‘therapy’ is taking a morning off work in order to be instructed in the exercises that must be done with your DC daily.

When I was working p/t I asked my Nanny to go in my place to one of the appts - so she knew what needed to be done. She got the utter third degree from the therapist - and the following session the therapist made it quietly pretty clear that she judged me.

And the changes to the benefits system is terrifying. I'm incredibly grateful for there being a system at all but it's so hard to keep up with the changes as well as sourcing ever changing and disappearing provision. I can navigate the system and frankly am so grateful that my education enables me to fill in every form correctly. It must be horrendous for less able parents.

Mmm - it’s all part of being low status in society.

Very little comes ‘as standard’. You have to hustle for proper medical support, hustle for school to tune into the needs and hustle for financial support. Some weeks, you could pretty much justify that as a part time job in itself - before you’ve done anything that involves children. And it’s pretty much invisible labour from the outside world, who tend to have innocent world views of “to each according to their needs” being how education, social support and NHS work....

I'm a civil servant and have a mid level job with understanding managers and flexible working but I can't progress further as I'd like to because I can't travel and leave my kids. This stops me being able to attend higher level meetings that I would need to if I was promoted. I'm also coming at this as a step family which makes childcare more of an issue depending on which days our children are around. I have one child with sen and one with an illness meaning hospital stays are not uncommon. I'd love to progress I just can't see it happening but I'm very grateful that I have the job I have already as I'd have lost it many times over in the private sector due to time off I'm sure.

On top of the school disruption and the challenge to find childcare that works for the DC.... I’ll add to you how IME ‘therapy’ is taking a morning off work in order to be instructed in the exercises that must be done with your DC daily.

This, with bells, sirens and added jangly bits on.

DD2's issues are relatively mild - but I'm managing continence problems and juggling medication for that, speech therapy consolidation work at home (with what we're paying for it - I'm blooming doing my damndest to make sure it's effective), OT exercises to try to make sure the results for that was maximised, I'm doing the handwriting work that's meant to be being done in school but isn't, plus reading homework and standard class homework, then additional homework from her language intervention group... and poor DD1 gets squeezed out as a result. That's before clinic appointments that get changed, therapy appointments ("thankfully" we've now kind of been written off by the NHS and told to just get on with things), SENCO meetings, having to take time to follow up on stuff school should be doing but arent... DH's employer are more flexible than most (he's got a boss with a child with complex needs so he "gets it") but there are limits to not pissing off the hand that pays the mortgage too much.

I'm trying to get back to my career in some hazy form but it's never going to be viable. Hoping I can get some work as a supply teacher so I've got something in my life but with the flexibility to do the SN treadmill.

You make a good point CoderMum and to some extent that is why I decided to work, because I thought I had a choice to make, either to make hustling for state provided help my full time role or pay for it. I paid.

I'm fairly lucky that I had a home I could sell to downsize and then re-mortgage and that whilst not a high earner, I earn above the average wage and that if I put my 2 DC in the same room, I could get an au-pair into the 3rd bedroom. It has been mind-bendingly stressful and has meant that despite appearing to earn fairly well, we've lived of baked beans for 15 years (I exaggerate slightly) and I've driven the most dodgy collection of knackered, clapped out bangers, bought every item of clothing I own off ebay and so on. BUT it meant I bought all the help that DS needed and never worried that the local authority would stop it, or reassess him, or the million other things that happen that jeopardise the future of the most vulnerable children in society in this country.

It's really hard OP. DH is part time and I'm freelance and even then it feels like playing catch up all the time.
I started the DLA form last week and it's over 60 pages. Even 'little' things like that are a job in itself.

I don't know what I feel most about the waste of skills, ability and experience that is going on here - frustration, despair or apathy (sometimes it's very tempting to just dig a hole, lie down in it and wait for death... But then, who's going to look after the kids?).

And what a waste of resources for employers. I wonder what the longer term impact on the economy would be if parents/carers of children with SEND could be better supported into work? Not to mention the impact on mental health.

Margo the nanny that got the whole ‘hired help’ condescension when I was still gripping on to my PT job was actually an absolute godsend.

She was a teacher in her native country, but nannying because her quals weren’t recognised. She’d do the whole teacher thing of ‘planning’ and ‘tracking’ the support for the DC - and tbh totally saved my sanity on many occasions. Just being able to take a break from the treadmill, come back to it with a fresh head. Plus having someone who is equipped and motivated to have an intelligent ongoing conversation with you about what needs to be done.

My former career ( teaching) has helped in getting my son the support he needs so I don't see it as being wasted.

Oooh - another thing - friendship management.

Someone mentioned at one point how gregarious I was, chatting to everyone at the school gate, inviting people round, volunteering in school.

I looked at them . I’m actually a massive introvert - but it was very apparent that if I didn’t work hard at it, my DC would be excluded from a lot of social opportunities.

She still often gets left out of parties and games - but people at least have a little bit more of a pause before doing so because they socialise with me.

Nannies and Dads find it much harder to penetrate the cliques - so I had to make it my business to be very visible at the school gate in a sunny and unthreatening way. Which conflicts with holding down a job.

Flexibility would help me. On a good day I can be at work for 8:30 if dd goes to breakfast club. But I can't commit to 8:30 starts because the next day she might have a meltdown or a horrific evening that puts me back.

I agree - it depends on the SEN. Not necessarily the severity but other factors like care provision, school placement, appointments. Then there is the support aspect. If I didn't work in a term time job I would have had severe issues finding holiday provision. I totally identify with all those who said either 1 earner's career takes priority at a time or that their career has stalled or they are not doing what they potentially could do with their talents. Also if you are trying to make a career and have children with additional need eventually results in mental/physical health issues on top of the care demands which is why divorce rates are so high.

Anyone not living it, however sympathetic and supportive - friends, family, employer, colleagues does not get how difficult it is. I often find people are there for the big stuff but the day to day stress of not knowing if you will get a call from school, who you have to chase up, addressing mishandling of situations by teachers etc, getting anywhere on time and without a meltdown, appointments never on days you can make is endlessly difficult. Pair that with only being able to leave at a certain time in the morning or having to leave in the evening isn't great whatever your job. NT children also develop personal responsibility which means that they can help around the house. This might never happen if your child has complex needs.

I suppose it would be worth asking those who think it is totally doable whether they would like to do the 0-5 years stage 24/7 everyday for 18 years or more possibly with multiple children simultaneously.

I'm going to read this thread when I get home tonight. However here is my quick response.

I'm a single mum to 3 boys. One of which has SEN (probably on the milder side I guess but doesn't feel it to me). I'm also a midwife so I do have a career.

I manage it by the skin of my teeth quite honestly. I'm regularly on here complaining about how hard it is TBH.

I'm not sure if it's the single parent or SEN or combination of both (or too many children?!) which makes it so hard. But it is. Fucking hard.

I have a nanny. I hate it. It costs my earnings, I rely on tax credits who regularly don't pay me leaving me in dire straits. I have a stranger in my house essentially, and as an introvert who values my privacy, it affects my stress levels having the intrusion.

I'm not sure how long I can keep this up. My youngest doesn't start school til next year. I've been a single mum for almost 4 years now. And I'm exhausted. I have no family help.

My work have been fairly good in terms of giving me set days so I can actually employ a nanny. Without set days, I'd have lost my 10 year career...

I don't know what I'll do ultimately. I can't keep this up indefinitely.

It’s certainly impossible when you have two with SN and are a single parent with a useless ex who doesn’t see them for months at a time. Yet still my ex h and his parents say I am a lazy scrounged who has never worked a day in my life. Guess I was imagining never being out of full time work from the day I was 17 until my first child was born when I was in my early thirties then

carol hmm yes, I guess I am just deluded or lying too.

Oh and SWs who are, as well as being unprofessional and judgemental, quite frankly thick. I had an other worldly experience recently when explaining something to DC's SW again, she declared he wasn't "illegible" for it. Hmm, he is, according to her own guidelines which unfortunately I know better than she does, through necessity. I've developed a poker face over the years.

Thank you Hippo and Zampa! I'll look at these in more detail when I get home.
It's reassuring to know that I'm not alone and there are lots of us trying to get by.

Wow there really are so many of us. Struggling along mostly silent and parallel to other families. I’m not saying normal families have it easy, but crikey the stories here break my heart.

It's one of those situations where everyone will have very different experiences depending on their own circumstances and their DC needs.

For me, continuing in my career wasn't possible as DD's needs increased and her MH worsened and she has major struggles with school attendance. Even if she was in school FT, I have to be here for the bus to pick her up and drop her off.

The main worry, like other PPs, is the financial future hanging over me as a LP now on benefits and what happens when she's older and not miraculously cured.

I remember being told by her CAMHS worker when I was stressing about losing my job and the implications of being on benefits that I was feeling sorry for myself and making excuses for not quitting my job. Now, three years down the line the fact I'm a LP on benefits after leaving as I was facing disciplinary, it is held against me. You really can't win.

The only way we can both manage to have proper careers and manage two children with SEN is by one of us being freelance. Otherwise it would be totally impossible.

We have one in special school who can’t walk or talk and has epilepsy. Another who is being assessed for high functioning autism who is school phobic and being educated at home.

We have a lot of hired help and assistance from my mum. This wouldn’t be possible without very high paying careers.

I’m a single parent and it was easier when he was at nursery as they managed him well. I worked 4 days a week (I dropped a day when I returned to work) and used my day “off” for the various appointments and therapy’s. It worked really well and my parents were my emergency back up. He started school this year and I’ve altered my working pattern so have kept the same weekly hours but over 5 days and it means I can collect him from school at 3 as he wouldn’t manage after school club (nor they him!). I wouldn’t be able to do it without my parents. I drop him at their house at 7.30 am and they do school drop off so I can start work at 8. He isn’t coping well with the transition to school so is part time at the minute and will be for at least the rest of the year (again my parents helping out with this) and he has already been excluded one day for attacking the teacher. We have applied for ECHP but waiting to hear back about it. If I didn’t have my parents I wouldn’t be able to work now, I’m thankfully established in my career but I will be coasting along now for the foreseeable and I thankfully have an understanding boss so can leave early for his therapy sessions every fortnight and can take last minute holidays for hospital / school / social worker / senco etc etc etc etc etc appointments!

I think it is extremely difficult if not impossible to combine caring for SN children with a serious career. I have a DS with severe physical and learning disabilities and have found it really challenging. And I am luckier than some because I have a DH who is every bit as much if not more of a hands on parent as I am.

DH was a company director when DS was born but he had to give that up when DS arrived. I managed to get a masters degree in my field in between caring for DS and working full time (still don't know how I did all that) but it hasn't really paid off as although I earn more than I did before the MA I just don't have the resources or headspace to really go for it career wise. It is hard when eg holidays have to be used up caring for DS so we never get any down time. There is no doubt that our earning power is drastically lower than it would have been.

Not enough is done to support working parents of disabled children yet if they give up work, benefits are inadequate. There is parental leave which can be taken up to 4 weeks per year a day at a time if your child is disabled, but it is unpaid so many won't be able to afford it. Yet other benefits for parents - eg maternity/paternity and shared parental leave - are at least partly paid. My current employer actually tops up these to full pay, but not ordinary parental leave which is completely unpaid. Why is this, isn't it potentially discriminatory?

My DS has just turned 18 when PL stops so we don't even get this. Even though he has the understanding level of a toddler and is even more physically dependent.

I agree with posters above who stated that carers are underrated; I feel like we are at the bottom of the pile. Also hire carers for DS sometimes when we can't be off work, they mostly work with children in SN schools so look after DS during the school holidays to supplement their incomes. Many of them are absolute diamonds of people who go above and beyond to care for DS, any employers should be proud to have them. But they are treated like skivvies and paid the minimum wage even though it is not imo a minimum wage job.

Coder you make a very good point about working and buying in provision. The sourcing does become a job in itself. Also having a teacher for a nanny sounds amazing. I've recently started using DS personal assistant budget to have less hours but more qualified and fudged the hourly rate. I'm using an NQT rather than a straight out carer as DS needs are not physical.

My brain just doesn't work in the same direction that it used to. I've become very political over the years and would do something in advocacy as I now have a PhD in benefits, grants and disability provision.

I've developed trust issues with regard to provision for and caring for DS and have no clue how to get unenmeshed one day.

Older two have EHCPs but fairly mild additional needs - one to one support at school and access to a quiet room is generally all they need (unless DS has another exclusion but we’ve been ok for a year now so fingers crossed). I’m a civil servant and when eldest DC needed a lot of speech therapy etc it was pretty straightforward to work flexibly so I could take her. Ditto I have a lot of school meetings and can generally start work late in order to go to them. I’m basically middle management though, I actually think it would be hard to have this flexibility at a lower grade, because most of my work can be done remotely. I have meetings, but I can arrange them usually to suit myself. And DH is self employed so of course that helps a LOT.