How do you cope with working and life with a child with complex needs?

[Everythinghasgonetoshit]

Any ideas?

My son was diagnosed with GDD and autism recently and is non verbal and has significant, complex needs requiring 1 to 1 support. I thought I was doing OK coping with it all (going through EHCP process which has involved lots of chasing, researching and then threats when LA wasn't doing anything), but it has caught up with me this week. I ended up calling a help line in tears and spoke to a lovely lady, but i was close to walking out with a bag and abandoning my life! I know I only felt like that in the heat of the moment, but it was scary. Is this normal when you parent a SEN child?

I work nearly FT hours and my job isn't particularly high level, but busy due to being the only person doing it, and has lately required me to step out of my comfort zone a bit when I'm an anxious person by nature. I feel pressure to progress in the role when I'm mentally just overwhelmed with everything and don't have the head space to do so. I have always wanted a good career and there is potential, but it's not right to push ahead right now, but I feel that's the expectation. I thin most parents struggle with this with young kids, but it feels harder with all the things I am doing outside of work for my son.

I feel really under pressure due to it already being pretty crap with both parents working FT and primary aged kids, but additional pressures of his additional needs and not knowing how to manage them (nobody tells you and i have little time to research/know where to look) and trying to sort his education out, coupled with trying to process him having a lifelong condition which means he will always need our care has been too much. I just went to pieces this week and had to take time off. I feel so bloody useless and snowflakey about it - nobody has died or is in hospital - but it was at the point where I just felt in a state of panic and could barely talk. I have felt this building up a long time, but felt I couldn't take time off.

We can't afford to cut hours down as our jobs don't allow it (in terms of reducing workload) and we'd just end up working extra hours and getting paid less. I feel moving jobs would add to the stress right now. We live in an area that is expensive relative to wages and I'd like to move for better life chances, but feel trapped given we haven't even got EHCP yet. My son needs specialist provision and is stuck in MS reception with support for now and we are expecting a lengthy wait (upto 3 years i have been told, although his needs are the highest banding, so this could be less). He is a lovely child, and I think the local schools seem fairly good locally. We could give this up if moving away, so we are stuck in an expensive area where you can't materially get on.

How do you manage coping with a child with SEN and disabilities when you work close to or FT? Any tips and does it get easier? I think it has all been a lot at once and a culmination of a busy period at work, the diagnosis and trying to get him an appropriate education with a broken SEN system. We don't have access to after school or holiday clubs, so I am constantly under pressure trying to resolve that. It's just one thing after another and those seems like par for the course as a parent of the child with SEN. I'm not sure I can face a life of this - will it ever get better?

I forgot to add that with all this my son has really irregular and poor sleep. He can be awake most of the night so needs night care too as he can't be left alone.

Ok. First thing - have you applied for DLA? From what you've said about night time needs you should be entitled to higher rate care (100 a week). Plus possibly mobility if he can't walk outside safely - e.g. without running into a road. It's not taxed or means tested.

Second - give yourself grace. Your feelings are reasonable and valid.

Do speak to your GP. Some people find counselling helps.

For many years I couldn’t work. Now I work very part time TTO in a flexible job. More hours, less flexibility and not TTO wouldn’t work. Having all the support possible with DC helps too - from health, social care and education. Stressful to get it in place, but once in place it helps.

Have you requested an EHCNA? If not, do that now. On their website, IPSEA has a model letter you can use.
Do you receive DLA? If not, apply - use the Cerebra guide to help,
Check you are receiving any/all the benefits you are entitled to - the maximum people can earn before not being eligible for UC is higher than many realise when there is a disabled child. Even higher if there are childcare costs &/or rent.
Have you had social care assessments? A carer’s assessment for you and an assessment from the disabled children’s team for DS. Contact has model letters you can use on their website.
Depending on DS’s needs, consider continuing care funding.
Does DS take melatonin?

It is unpaid but parental leave may give you some breathing space.

Thanks for the advice. i am in the process of applying for DLA but it has been a very long process. We are waiting for draft EHCP to be issued soon as we thought the more evidence supplied to DWP the less they can try it on giving us a low rate, plus it is just such a huge form. I do worry I haven't done a good job as my son isn't one for meltdowns that often anymore but has huge needs in terms of personal care (does nothing for himself, can't even feed with a spoon) and has severe issues with communication and keeping himself safe too. He refuses to walk and runs into traffic. He is always in reins or buggy when not in an enclosed space. He wears reins in school even. I thought mobility wasn't until after 5 though? He is 5 next year.

DLA would not be close to covering my wages though and I'd hate to not work, but it is hard juggling it all. If my son was NT I would be fine, still probably stressed like any parent of young kids, but the dealing with LA and his challenges has made it really difficult. I think it's just processing what my life would be now that is an issue to as I don't know how to adapt to his diagnosis.

We have no sleep clinic where I am and earliest will be January to get a referral done. I have been told that only certain people have authority to prescribe and the nearest sleep clinic out of area is 2 year wait. I have to speak to my consultant in Jan as it is changing, but that doesn't help desperate families in the meantime. It's when real failure on their part i think. You can buy it over the counter in many countries. Seems ridiculous the barriers they put in place.

Its nice to know I have a reason to be stressed. I'm surrounded by people who just get on with things and don't seem to struggle, so I feel it is just weakness on my part.

Don’t wait to apply for DLA. There is a wait for claims to be looked at. You can always send further evidence on. Low rate mobility isn’t until 5, but high rate is from 3, and from what you have said DS may qualify for that - Contact has information on HRM for those with LD/ASD.

is the LA sticking to the EHCP timescales?

It is worth setting the ball rolling for a sleep clinic referral. If your GP or school nursing team can’t refer, email/call the consultant’s secretary and request a referral or earlier appt.

Has DS had an OT assessment?

We are on about week 35 of the the EHCP process and just got the draft, which I am not impressed with. It is not very specific about who delivers the interventions and when and how long for. Section F has very wooly statement such as 'as required, key person should...' that sort of thing. They say that is typical in EHCPs for children who have similar needs to my son? They also removed the words 'at all times' from the first draft of the EHCP that we reviewed in the SOA meeting when mentioning the need for 1-2-1 supervision due to risk of choking (consultants words from an assessment report). That's pretty fucking sneaky and quite dangerous really. They really can't see the children behind these EHCPs can they.

Sent DLA off but paranoid I haven't done enough and if it all makes sense. Expecting a battle with that too. My partner thinks our son should get HRM due to his safety issues and demand avoidance, plus he doesn't look where he is going and has lots of collisions and falls.

He got reviewed by OT in his assessment for ASD but I don't think there was any follow up. Where I am they put a lot of barriers in place to access help and services. Getting nappies via continence services starts at 5.

I meant to say the EhCp is NOT specific enough.

F must be detailed, specified and quantified otherwise it isn’t worth the paper it is written on. DS may not receive the provision required and it is not enforceable.

Push the LA to finalise ASAP then appeal. Email the Director of Children’s Services reminding them of their statutory duties. If that doesn’t work, email again threatening JR because they are in breach of their statutory duties and frustrating your right of appeal. Then, if that fails contact SOSSEN for help with a pre-action letter.

An OT assessment could have been part of the EHCNA. If you appeal, look at an independent OT report.

You can request a home OT assessment from the council to look at making the house safer and better meet DS’s needs.

It is normal for the continence service not to provide products until 5 (or even later in some LAs) because they consider it within the realms of normal development until then.

If your son qualifies for middle or high rate care, you can get carer’s allowance too if you are unable to work. This might be a good shout for you. I’ve went from early 2400 a month to then 1800 to then 1600 and now I’m on 1200 after having to cut my hours so significantly. Nobody at work gets it and I’m finally starting to find life more manageable. It’s hard though.

You’re a human being in an extremely challenging and worrying situation. You’re doing amazingly well, please be kind to yourself.

My son has high needs autism and I work from home, a few hours a week, it would be impossible to do more as he only manages a couple hours in school and I often get called to get him.

I'm so sorry, realise that's not helpful to your situation. I really hope you get decent dla rate.

What is your job?

Short answer I had 3 set of sick leave where I broke down so dropped to pt aftwr 2nd set of sick leave and then term time as well no holiday would accept dc. I'm lucky I work as civil servant

I'm in an admin role public services but WFH. Work haven't really been that great really. I have explained to them about my heavy workload leading to me being off sick with stress last week and they went through all the formalities and signposting as usual and then in the following meeting with my boss I just got more work piled on. They tend to think that as long as they give you all the self care links they've ticked all of the boxes and they've been really supportive, when the real issue is their demands and how they manage things. I should have took longer off but my workload was too high.

My other half wasn't very supportive this morning either and generally isn't - refuses to move away somewhere cheaper, just says i need to find a way to cope with things better and its not that bad and it could be worse. He just thinks I should give up work and is convinced we wouldn't be worse off if I was to claim benefits. I'm not sure that life is really for me, but I think its pointless trying to progress at work because I haven't the energy for it, so maybe I need to accept that I'm just going to have job and not a career.

If I am being honest ith myself, I just don't think being a parent is for me and I feel like I should never have had kids, as I just haven't enjoyed it. I've been stressed trying to hold down a job and manage everything the whole time. I don't feel I'm very good at it and my confidence is non-existent. I've never slept well since having my kids and feel like I've been in a constant state of stress for the last nine years trying to juggle it all.

I still don't know how I'm going to manage holiday care with not enough leave between the two of us. It's really hard to find time to sort this out.