To have any hope in ever working?

[PurpleHydrangea1]

Our current situation: 2 young children, eldest diagnosed with diagnosed, nearly 5 and 2.5. I've been a SAHM since going off on maternity with dc2 (just as we were starting to truly realise that eldest had emerging additional needs).

He was diagnosed around his 3rd birthday. We've been through so much since youngest was born. I've spent the last few years dealing with a toddler and young baby during a pandemic, finding my way as a parent of ALN child, fighting for his diagnosis and getting him into a specialist school which he recently started. He's a wonderful child but non verbal and not yet toilet trained.

In amongst all of this and between pregnancies, I've had ongoing health issues. I've been referred to gynaecology for suspected (and likely endometriosis). I'm on the Pill but my flare ups are starting to become more prevalent, despite a year of managed symptoms. I suffer badly with chronic pain and fatigue. The wait to see consultant is unknown, let alone surgery for formal diagnosis plus possible treatment.

Youngest will start school later in 2022, full time in September 2023. I really want to go back to work but I'm.not sure how it's possible. DH is incredible. Although I deal with our son's daily stuff myself, he is a wonderful dad and does most bedtime routines, night wakings for DS, ensure I rest on weekends, etc. He has plenty of scope for climbing the ladder in his new job. With that comes bigger salary. We manage financially quite well at the moment. We also receive DLA and carers allowance and DH earns enough so we're comfortable.

Long term, do I have any hope of returning to work? I've worked since I was 17 so the last couple of years have been an adjustment but our kids have been the priority.DS would still be struggling in mainstream and no SALT support if I'd continued working as well.

If you have a SEN and/or chronic illness, are you able to work? I'll definitely give it a try but DH is more than happy for me to continue as we are, even when youngest is I'm school full time as he says my health is more important. I've just never invisioned myself not working ever again, even part time.
Realistically, how feasible is it that I'll be able to go back to work with an Sen child and health issues?

*eldest diagnosed with autism.

Yes plenty of people work in this situation, it's hard though and there's an element of luck in finding a job that works around what you need rather than choosing a job you actually enjoy necessarily. If you're happy at home and your DH is happy for things to continue as you are then I'd carry on as is, if that's not what you want though of course don't feel like there's no choice.

My daughter was diagnosed at 3 also. She is now 10 and I've always worked. Im a single parent and we have no contact with her dad or his side of the family. I've been lucky to work within school hours 9am-2pm, 5 minutes walk from school albeit on a low wage in a local shop but it works for us and the only way it could. She starts a SEN secondary next year and I'm hoping it gives more freedom with working. She was also non verbal until 5 & now classed as having a speech disability on top of ASD, she is the most amazing child.

I'm in a similar boat. Have a high needs autistic son and a chronic pain condition.

I had my own company before I got pregnant I've reduced my hours hugely and I work around my son at the moment when he sleeps and partner takes a half day so I can do a chunk of work. Its hard. But I'm so lucky I freelance. Don't think I could do any other type of work.

Maybe when your kids go to school you can do flexible work?

I'm autistic, my daughter is autistic, my son is awaiting assessment. I work. But it's not easy, I do find it hard managing everything, and everyone's situation is different in terms of what we are dealing with and able to cope with.
I work freelance so I'm in control of my hours and workload which is what makes it workable for me. I need lots of flexibility in order to be able to do everything.

You have a lot going on, it sounds like you have a supportive DH and that you can afford to not work. PP in similar situations seem to need to be careful with their hours and location of their work. I think it may take you more time to find work that can fit in with family life, do you think you can wait until the right job cones along (if do I think I would). Please do not put too much pressure on yourself .

It doesn’t sound hopeful. You have a disabled child and are partially disabled yourself with fatigue and chronic pain. I would not beat yourself up as you have two very good reasons to not go back into paid work. You are still contributing massively to your family though by caring for your children and taking care of yourself so you can do this long term. Going back to paid work, could run you into the ground and make your condition worse which will in the end make things even harder. It’s best to do what you can and not feel guilty about what you realistically cannot do.

That said make sure that you:

• Keep claiming carer’s allowance so you are accruing your own state pension as if you were employed full time.

• Look into claiming PIP for yourself depending on your own condition. You can claim PIP and carers allowance at same time especially with a condition that has good days and bad days. Some disabled couples are both on PIP and are also each other’s carers. PIP is not means tested and even disabled who can work can receive it.

• Ensure your DH maxes out his workplace pension, adds a survivor benefit for you in event of his death so you would still get his pension and consider also him opening and funding a private pension in your name for you. Enough of his income has to be set aside to cover retirement of both of you, not just him.