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How do your balance your needs with your DC's?

5 replies

AshGirl · 28/06/2022 10:57

This is particularly for ND parents of ND children (or other kind of SEND).

Like lots of ND parents I think, DH and I have struggled with the demands of parenting and losing our previous coping strategies. Our DS is absolutely awesome and also has complex health and developmental needs, including very poor sleep - we are under the sleep clinic and getting more meds for him but it is very tough. DH is very depressed at the moment - he's getting treatment but probably not enough.

We really struggle even with keeping up with paperwork and haven't managed to apply for DLA, even though DS is 5! He is also very loud and full-on which can be very fun if you have the energy or can be pretty challenging.

We love the very bones of him, and feel terrible that we send him to respite to get a break (only about once a month and he loves it). We have no family nearby who could help.

What do others do? Would really appreciate any suggestions or strategies. I am waiting for a formal assessment for ADHD and ASD and already see a counsellor.

OP posts:
ofwarren · 28/06/2022 12:35

It's really tough isn't it.
I'm autistic and my DH ADHD.
My eldest DS is 19 and autistic, my 7yo DS is waiting to be assessed for autism and has complex medical needs and my 6yo DS seems so far NT.

My eldest was a dream compared to my middle child. We have been referred to a parenting course for children with additional needs and are just winging it at home at the moment.

Sensory wise it can be hell for me. We don't have any specific strategies in place except that the parent with the most energy at the time is the one who deals with him when he's struggling. I've been in a bit of a shut down recently due to having been on a city break and things like that can take me days to recover from, so my DH has let me spend most of my time upstairs alone. As soon as I'm feeling up to it again, we will swap and he will be the one relaxing and me doing the majority of the parenting.

Lots of people wouldn't like to do it this way but it works for us. Sometimes we are both on the ball and we do it together, but it's nice to know if one of us is struggling, the other will take over.

Trivester · 28/06/2022 18:05

Oh my it’s so hard.

Figuring out that I’m not NT has helped enormously because now I can see side of the balance more clearly.

I get very frustrated at how the system for supporting ND dc is predicated on them having NT parents.

One of the big messages is about the need for consistency - well that’s my dc fucked then because I have adhd.

I carried so much shame because it took me months to get the papers filled out and sent back, and because I had a breakdown at one point and stopped engaging with the services so ds got bumped to the back of the queue. That one was hard to come back from, because it made me realise that I was the only person in the world that would help him - when I wasn’t able everyone else abandoned him. Anything he’s got, I fought for (sometimes fighting myself not to bury my head in the sand and sometimes fighting the systems).

I’m better now at recognising when I’m triggered, overwhelmed, etc and taking breathers and time outs. But there’s no way I can get further than scratching the surface of my own needs when I’m dealing with my dc’s needs.

AshGirl · 28/06/2022 21:35

@ofwarren We also tag team a lot which works OK but I feel we miss out on time together as a family - and it is much easier to wrangle DS when there are 2 of us!

OP posts:
AshGirl · 28/06/2022 21:37

@Trivester You're so right about the system assuming parents are NT. Have you told school etc about your difficulties? I am considering whether we should be upfront so that they can try to accommodate us.

OP posts:
Trivester · 29/06/2022 20:25

@AshGirl In school I haven’t come right out with it explicitly but I’ve used phrases like “the apple doesn’t fall far from the tree” or given examples of my own school strategies that parallel his more obvious problems.

I haven’t framed it in terms of my difficulties with him now( and I’d worry they’d be an excuse to write him off) but I have chimed in with examples of how I struggled in school but excelled academically.

I do challenge other professionals directly now though.

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