Working when you have ND children feels impossible sometimes

[deliva]

I work full time. My DS who has ASD and ADHD is a wonderful, creative, lovely 6 year old. He is hard work, and I am struggling to juggle work and parenting. Team meeting booked for day of his Christmas play, so I can't go, manager said no to attending late, so he can't do the play (they always put a chair for me to sit in nearer the stage as it keeps him calm), he's saying he can't do it if I'm not there. School very understanding. Calls during school when something has happened but I can't answer them half the time if I'm chairing a meeting. I work 8-2:45 then in the evenings to make my time up to full time and I'm just exhausted but can't afford to go part time, but he won't tolerate after school club as it is too loud and chaotic. Lots of other things. It's just tiring and I'm wondering how other people cope?

I'm sure other people with more experience will come on to give advice. My child has a 1:1 at school so a bit different as my support isn't needed in school. I stop work early as well, a few days a week so can pick him up and catch up with work in the evenings. The days I work till 5, we have someone come home and look after him for a few hours.
Holiday club is what we haven't sorted a snot sure he'll tolerate it yet. We have someone look after him 1:1 a few days and then use holidays to cover. I also plan to apply for unpaid parental leave and use that as well. It's definitely not easy, and what they'll tolerate will likely change in time as well.

I do have quite a flexible job and supportive bosses, that makes a massive difference for us.

Unfortunately, many find they can’t work full-time. Particularly not in an inflexible job.

Are you receiving DLA for DS? Have you checked if you are eligible for UC? For those with disabled DC the maximum you can earn before not being eligible for UC is higher than many realise.

Have you had social care assessments? A carer’s assessment for you and an assessment of DS’s needs? Also look at your local short breaks offer.

Is DS getting enough support? Does he have an EHCP?

I get high rate care and low rate mobility for him and a bit of UC for rent. No carer's assessment no, but I couldn't get short breaks as I don't have two official reports within a year of each other so was declined (they've made it quite hard to get now!). In the process of applying for an EHCP which the school have said we will get and once we have this I will apply for short breaks. School are incredible I'm very lucky as is he.

Do you have the carer element and severely disabled child element in your UC claim?

Request social care assessments. On their website, Contact has model letters you can use. You don’t need 2 reports for that or to receive support from it.

When you say in the process of applying for an EHCP, has an EHCNA request actually been submitted to the LA? If not, you can do that yourself. IPSEA has a model letter you can use.

How do we cope? Barely. A lot of the time it's existing and survival. We deserve medals.

It's really tricky. I work 0.8FTE and DH is full-time.

DD9 is "high-functioning", though struggles with EBSA. Has its ebbs and flows, but last week was only in school Thursday and Friday.

What (kind of) helps is that we've both worked for our employers for 6 and 12 years and so have built up reputations and they're also quite flexible.

Does mean we're quite stuck though and tricky as both organisations are going through restructures with redundancies.