Drowning

[Helpiscoming]

How do you cope when you're the mum of SEN DC?
How do you stop yourself from feeling like you're drowning?
How do you stop the tightness in your chest?
How do you cope with the burden of their demands, the emotional strain, the mental exhaustion.
How do you retain focus in your job when all you are doing is worrying whilst you're at work about your DC?
How do you stay on top of endless housework and domestic chores when all you want to do is lay in bed with exhaustion?
How do you keep going in the never ending battle with non understanding teachers, out of touch schools, unsympathetic and underfunded LEA?
How do you maintain friendships when you feel so isolated in your experience as a SEN mum that you want to detach from friends because you can no longer connect with people who haven't got a clue how hard this is. Friends who worry that their DC can't choose both Spanish and French for GCSEs when your own DC isn't even going to pass a single GCSE.
How do you stop your DC from ending up with mental health difficulties because of the impacts on them of living with their SEN and ND in a NT world when they are sweet, gentle, kind, soft, vulnerable, loving and fragile souls.
Life isn't fair.
I've got no money to throw at this situation to make it better. No private tutors. No private therapists.
I'm drowning.8

It is relentless and exhausting, but knowing DC need the support and provision and it will help in the long term is what motivates me to continue to advocate for DC. This support and provision then enables us to manage.

Have you had social care assessments? A carer’s assessment for you and an assessment via the children with disabilities team for DC.

Sadly, many parents who have DC either additional needs can’t manage work as well. For many years, I couldn’t work. I now work part-time TTO in a flexible job. However, there are still times, especially over the last few months, where I think can I make it work.

Are you claiming all the benefits you are entitled to?

Some find finding a group of parents with DC with SEN helps. If this is something you are interested in, your local parent carer forum may run groups or be able to signpost you. On SN Chat, we have a Goose and Carrot Pub thread, feel free to join us if you want. You don’t need to read all the thread, just jump in wherever.

Thank you for answering, I appreciate it.
I assume I'm not entitled to any benefits since DH works FT and I work PT.
No, no social care assessments. Sorry, I don't even know what those are.

DLA isn’t means tested. You can apply for DLA for DC regardless of your/DH’s income.

If DC get DLA, depending on your PT earnings, you may be eligible for Carer’s Allowance.

Universal Credit is means tested, but you may still be eligible even though you and DH work, particularly once DC is receiving DLA. The amount families with disabled DC can earn is higher than many realise.

You can request social care assessments. A carer’s assessment for you and an assessment via the children with disabilities team for DC. These will look at the support you/DC need. On their website, Contact has information and model letters you can use.

It’s bloody exhausting and I see you.

as people have already mentioned, you may be eligible for DLA. We have used DLA for lots of useful things in the past - private SALT, private OT therapy, sensory equipment etc. We also use it to pay for DS’s ADHD meds because he has a private ADHD diagnosis and our local health authority doesn’t do shared care. It has helped us pay for professional support that doesn’t seem to be available locally. (although I appreciate the form filling for it is another thing that adds to mental load.)

In terms of work, I guess I am under-employed for a woman of my experience and capability. I work part-time because the strain of managing DS makes it impractical to work full-time. I am extremely lucky that my manager is a kind person and allows me some flexibility in when I put in my hours so long as the work gets done and I don’t slack off.

i reached a burnout point about 2 years ago and had to go on anti-depressants for a while. I wasn’t weepy or emotional, it was more a feeling that my battery had completely run down and I had nothing left to give. I couldn’t get out of bed. They did help. I’ve weaned myself off them for now but won’t rule out going back on them again in the future if needs be.

In terms of isolation, fellow SEN Mums are my village and I would be absolutely lost without them. I find it increasingly difficult to relate to neurotypical families because their day-to-day is so radically different from ours. One such Mum I was lucky to find in my NCT group, others I’ve met at the school gate, at SEND family activities and in the park. I must say, my son is autistic and I can spot another neurodiverse child a mile off. So I find SEN mums tend to gravitate to each other because nobody else understands.

I second taking antidepressants. Can you access counselling through Talking Therapies? My GP has their own counsellor and patients can have 6 free sessions. Does your GP offer that or a chat with a mental health nurse? It’s better than nothing.

Does your area have a carers’ group? Mine has monthly meetings in our area, courses, interest groups (like a book club), etc in a mixture of face to face and zoom. Just being among other carers helps, albeit with different problems, essentially they are the same! Dealing with a difficult LA (SEN and/or Social Services) and an NHS cut to the bone!

I am a big believer in taking life one day at a time, and while there has to be some planning ahead like phase transfers, not crossing my bridges until I come to them. Otherwise, life gets too depressing.