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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

To feel depressed at ability to parent SEN DC?

3 replies

witsend24 · 31/12/2023 22:09

Name change but regular user.

It's the school holidays so once again all the routines and support systems we usually rely on have disappeared, and it's been a particularly tough week. Our DS (8) is autistic and at a brilliant specialist school, and tbh we'd gone through quite a good patch the first half of the year - he was calm and happy. But the past few months and few weeks in particular we've got caught in impossible patterns and I feel so isolated in how we deal with it.

He has ARFID so only eats a single food (plus vitamins) and drinks water. The past few weeks he's decided he can't have any liquids in his vicinity or he'll pour them straight on the floor, hot or cold (many cups have now been smashed), and has drastically reduced how much he eats/drinks. He's also taken to forcing himself to vomit - often secretly - and we are discovering little pools of sick a few times a day. He's visibly losing weight. His meltdowns have increased and he has repetitive speech routines which means we all have to say a specific word to him hundreds of times a day.

Every professional we've seen has been unable to give any advice or help other than keep doing what you're doing. We implement all the strategies we possibly can. We're fortunate financially and live in a nice area and have loving GPs in the picture. He's at a great school. And yet still every day right now is an exhausting stress which makes it impossible to not think about the future. And that's what depresses me the most - I want to make sure he's happy and lives a great life but feel like I'm failing when each new pattern is so hard to break. I stay calm, plan as structured a day as humanely possible, give all my energy to him (and other DC, less so DH) but it feels like it's still chaos.

Not sure what advice I'm looking for here really other than some hope or inspiration from other SEN parents about how they've coped and how to make their children calm and content more consistently. Or at the very least how to not approach each coming year with a daunting dark cloud of fear as to what new problems will emerge. I used to love NYE and the excitement of it, but just want to cry today.

FWIW I was also diagnosed autistic in my twenties so understand some of the logic behind his "illogical" thought processes. But that doesn't actually make the cycles any easier to stop!

Sorry for the NYE downer - will return to cocktails soon and try to get invested in Jools Holland.

OP posts:
Sprinkles211 · 31/12/2023 22:19

Hello fellow sen mum. 3 dc all sen one mainstream age 16, one specialist extreme needs age 7 also arfid and asd and 11 month old very delayed like middle.
My middle girl really struggles with holidays from school, (fine if we take on an actual holiday tho). Her arfid reached its peak last December and we now have a feeding tube and have to top up her body with the specialist mill and vitamin mixes. She will physically eat mccain chips and walkers ready salted Crisps but that's it. We were totally worried about her tube but it's saved her life! She's actually growing now! I wish the sen schools offered keep in touch days in the school holidays for the kids like ours that needs them she gets so set back by just a couple of weeks off it can take right up till the week before the next holiday for her to settle and learn again so you are deffo not alone xx

Bex268 · 31/12/2023 22:27

I couldn’t read and run. I feel you on the worry, it just never gets easier or goes, always something to overcome 🥺. You sound bloody amazing though and I have a feeling you’re going your absolute best.

TomatoSandwiches · 31/12/2023 22:37

No advice op, our youngest (7) is in a specialist school and has AFRID also, he has been off since the beginning of November for an infection and hospital treatment, the daily routine for the hospital helps but I know come school starting it will take weeks and weeks of helping him transition yet again, he really struggles with transitions.

To help with it we usually have him attend a few short days a week or so before of holiday club but they can't take him with a PICC line so we had to cancel ( no refund either! )

Have also had to work around our eldest GCSE revision schedule to make sure he is maintaining his work level, poor middle DD has been fending for herself a lot which triples the guilt.

Hand hold and MN hug for solidarity.

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