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.

I think there needs to be a distinction between being able to work and have a career. They are different things. I have managed to stay working, albeit part time. But I can't have a career that I progress upwards in.

In order to do that I would need to work full time, some weekends, evenings, be able to stay away from home etc.

I've only just started back at work in past 3 years after 10+ years of speech therapy etc for my 'on the spectrum' little boy.

I’m so sorry that there are so many of us in the same boat -and I feel so frustrated that our difficulties are,to a large extent,hidden behind closed doors.

I have 2 DC with SN and they are older now (teens) -however it gets harder all the time.

I had a part time career and I loved it,but spinning all the plates almost broke me and I had to resign. My phone was forever going with calls from school,the DC,outside agencies and so on and the amount of issues and problems I had to deal with at the end of the working day pushed me over the edge-along with the countless appointments clashing with my work pattern.

I am absolutely petrified for the future-DC1 leaves college the summer after next and all the money stops -at the same time that DC2 will need to apply for PIP.

DH is also disabled,so unable to earn much more than he currently does.
It’s bloody scary,to say the least.

I've not managed it. Asked to reduce my hours last year to 4 days a week help my ASD ds My request was refused, ironically I was working in a special school!

I can only work because DH works from home 3 days a week. I'm on minimum wage, spend my time off going to appointments and coordinating the agencies we deal with. Work is really physical and crazy but it's like therapy to be put of the house, with adults and not thinking about home stuff.

It is really hard. We have two DS with autism - both are pretty much non verbal. They are 4 and 2. When both were at nursery it wasn't too bad but eldest's school is 30 mins each way which is hard combining with work! Both of us work part time now and share time off/school runs. Luckily my job is understanding. We decided we both wanted to work a bit for our mental health. As I'm a teacher I get holidays off - it would be impossible otherwise.

I’ve written about this on my blog quite a bit. And spoken at Westminster about it. But that was four years ago and still the same challenges exist.

What would make it better? Coordinated health and social care appointments? Less battling for provision? Better childcare? Doesn’t help in an emergency situation though does it, which can happen so often with our children.

I really want to do something to improve this situation for all of us working parent carers, but I don’t really know what.

Orange One thing there is a lack of is schools that can cope with bright ASD kids, so you have a choice of watching them struggle in mainstream or putting them in a special school where the educational outcomes are dire. A lot of these children are exceptionally talented in their specialist areas of maths, science or whatever but it sometimes ends up being lost.

Another thing that would help would be if schools didn't just send SN kids home because they've got visitors / they haven't got enough staff that day etc - some of that is a lack of staff to help. Proper training of staff in SN would help - I don't know if centralising it would help. Also not taking 2 years to get an ASD diagnosis would help.

@OrangeSamphire I agree with Penguin, a free school which was pitched to bridge the gap between mainstream and special school for bright ASC kids. Extended hours there for accessible extra curricular. This would help me return to work, knowing my child was happy and safe in an understanding environment.
So many comments here make me so sad.

I have 2 DC with SEN, both older now & at college. One with EHCP & one without. I also have ADHD myself & Fibromyalgia. I haven't been able to get a job in many years, let alone think about a career.

For us:

Appropriate schooling. We saw first hand what a huge difference this can make when ds1 was placed in a primary EBD school. Not only no more phone calls saying please come and pick him up at a moment's notice but also the behaviour at home improved vastly because his needs were being met finally which dramatically reduced the mental load on dh and myself. Theoretically, if I only had ds1 I could have gone back to work at this point but unfortunately we have never found a suitable school for ds2.

Reducing the length of time for diagnosis (or allowing schools to access support once a diagnosis is suspected rather than waiting until the piece of paper is in the parent's hand).

Improved training for teachers in SEN. Given the prevalence of ASC in the population it is shocking in retrospect the lack of knowledge that the ds's primary school had in dealing with the issues. In fairness they did start sending staff for training when issues arose but it was too little too late. We and they did a lot wrong out of that lack of knowledge which probably made things worse in the long run.

Commissioning CAMHS to provide support for children with mental health problems and an ASC. News flash to them that a child can have both. More studies to try and work out what strategies, approaches or medications even actually do make a long-term difference. Just thinking about the lack of support that CAMHS has given ds2 makes my blood pressure rise. And the thing is it doesn't only affect him, it affects the mental health of the rest of the family when you have a child rampaging around the house wanting to kill himself or the rest of the family because he can not cope with the world.

Forgot to add:

Childcare during the school holidays / after school / babysitting to cope with children with challenging behaviour or preferably for that childcare to be in an environment and with staff knowledgeable enough to prevent that challenging behaviour.

For family and friends to provide practical support rather than just criticize. I am pretty disgusted by the lack of support over the last few years we have had from family.

I am officially my teenage dd's carer. Being on Carer's Allowance for many years (even though dh works) means that the house is falling to pieces, and if anything else breaks, it cannot be replaced. The boiler died months ago, so we have no heating or hot water.

I would dearly love to return to work, and recently got as far as talking to a manager where I last worked several years ago. My professional qualification would allow me to work as a locum as well, and I could earn more in a couple of hours than I currently receive for a week. This week, dd managed a whole 2 hours at school, and could not be left at home alone. She can seem relatively OK then end up in an ambulance. Even the most reasonable employer could not cope with that.

deepbreath that's terrible about your boiler. Is there a local grant you can apply for?

Does anyone know of a replacement for Family Fund for over 18s? We are completely fucked with DC just turning 19. We had enough money with income support, child tax credit, child benefit, pip, carers allowance, child maintenance, hb and ctb. Now child maintenance, child benefit and child tax credit have gone in one fell swoop. I've lost £880 pcm in one fell swoop to be replaced by £220 ESA for DC. Btw sorry tax payers, i truly do appreciate it, honestly.

It is totally possible, if you want it. Get a decent nanny with SEN experience. I am a single mother with two small children, one with SEN, no family around and I have never been out of work and have quite a decent career now.
Nothing will benefit your SEN child as much as extra money for private schooling / intervention.

No it’s not “totally” possible. There’s a very specific set of circumstances that allow you to do that. Do you have a well paid, professional career? Do you have family help too? Is their father involved? Do your child both manage school - no school refusing or injury or unmanageable behaviour or exclusion? Do you live close enough to your work that you can get to your child quickly if you have to? Do your children adapt to nannies and are they willing to be left with them? In my experience finding people with SN/SEN experience is near on impossible and I live in London did you have plenty to choose from?

No it’s not totally possible at all, for the majority. You just got lucky.

Get a decent nanny with SEN experience. I’m genuinely happy that this worked for you. However, for many of us I think this is a bit of a slap in the face, there is no way just getting a nanny would give me access to my career again.

Smiling at the idea that it is all about getting a 'decent nanny with SEN experience'; not everyone has the earning power to afford any kind of nanny even assuming a suitable one is easy to find. And where does the 'extra money for private schooling/intervention' come from once you have paid for the nanny?

As has been pointed out it is arguably easier to manage if you are already well established in your career and so likely to be earning more. It is much more challenging for those who aren't but want to advance their careers.

In my case I studied for a Masters in my professional field whilst caring for DC and working full time. I freely admit that it would not have been possible without my very supportive DH and my savings to pay for the study. And yes I am earning more now but not all that much more; I have doubts as to whether it was all worth it.

I cannot understand the aggression. If a career does not pay for additional intervention / a nanny / make your life easier, why aim for a career then (an honest question - maybe I am not too keen on work for the sake of work)? I am in a professional job, the father is not involved, there's no family around in the UK at all and I manage. Sometimes I also feel like just stopping it all, but then I think again and realise that the current arrangement is the only one viable.
My oldest cannot manage school / nursery and is home educated by the nanny, with occupational therapy twice a week (private). SEN specialists are hard to find, that is why you pay them well and treat them as you would a family member.

I've deliberately not progressed at work in 5 years so that I am somewhat available for DS, who has HF ASD and us at a mainstream school. He's had one meltdown since starting there last month and school completely freaked out and asked me to come and get him, but I am over 30 minutes away, so had to send my DF instead.

DS doesn't have many appointments, but has on occasion refused school. What I like about my job is that my manager also has a child with physical health issues the same age and gives me total flexibility and understanding that other workplaces may not. Knowing I will always be told to "do what [I] need to do" for my child first and foremost is totally worth my earning way below my potential for now.

Hopefully as he gets older I can consider new avenues. I'm thinking of retraining/building on my existing education so that I can have a career when he is a bit older, but I'm a lone parent and it might not be possible.

The aggression is because not all careers pay as much as you need for what you mentioned. And it feels as though your attitude is patronising.

It is totally possible, if you want it.

Not in every situation it isn't, @silvercuckoo. And it is thoughtless to suggest that those of us are not able to work or follow the career path we would like, don't "want it".

The aggression is because not all careers pay as much as you need for what you mentioned. And it feels as though your attitude is patronising.
It was not my intention, I apologise if it came across like that. I probably have a different understanding of a "career" - for me it is when a person is working in a specialist area, is firmly established and progressing, and is likely to work in the same area until retirement.
I know several career mums with difficult life circumstances. All manage.

It certainly wouldn’t be totally possible for me. For one I wouldn’t want (or expect!) a nanny to take him to the multiple medical appointments (at the moment 2-3 a week)

I wouldn’t want them to be the one going to the meetings at school either.

To suggest it is possible for everyone because you found a way to make it work for you (which actually for a lot of people wouldn’t be a way they would pick) is rubbish