First timer seeking accountability

HearThem

CRANKY40 said:

Ouch to your daughter's joint pain. My House Troll has hypermobility syndrome and he has been in a lot of pain since he was young. He also falls over a lot.I have it too but it didn't start causing significant pain for me until I was in my thirties. The HT isn't dyslexic but he does have dyscalculia.

What kind of things does the 18 year old eat? Could he have a mini fridge in his room with an alarm set to eat? Mine eats mostly cheese if the maid (me) isn't around to cook but when he was in school he took cold pasta pots (made by me) with him for lunch. If I'm going out and he is indoors I do sometimes dump a selction of food on his desk in front of him. His sensory eating has improved now he's older but it's not great but he seems to be surviving.

I don't sleep much either which does come in handy - I was awake enough to collect the HT and a friend from a night out at 1am on Sunday morning but it was hard when he was small and was an early riser (a 5am early riser). Nobody ever took him for a sleepover either because 5am is not a great time to start the day for most people. Keep an eye on the teeth thing too. The HT has some hyperplastic patches on his so he has toothpaste on prescription. 

Keep on keeping on and hugs 😊

Thanks for this Cranky. I seem to be in a permanent state of exhaustion / low motivation so sometimes it’s nice to have timely reminders we aren’t alone. 

The 18 year old survives mostly on fish fingers, mccains wavy chips coated evenly in Heinz tomato ketchup and my homemade pasta sauce. I’ll suggest keeping some prepared in a bedroom mini fridge and see if that makes things easier. He can make a bowl of cereal but would rather choose not to eat if something isn’t prepared for him. Oftentime won’t eat even if it is a safe food and is prepared for him! 🫠 Same goes for drinking. He will drink diluting juice if poured for him but would rather not drink than pour one for himself. So tricky. I think he fits criteria for a PDA profile but he isn’t willing to engage with any services at the moment so we are…stuck. 

How long has your HT been home full time? 

I realise mine is very likely in burnout. 

CRANKY40

The HT is 19 and in university. It helps that I can drive from home to university in 15 minutes, His classes are only a couple of hours a day and he can do some of them from home so hopefully he will finish with a degree and then find a sitting down job. He has a whole list of accommodations that the disability team at uni have arranged for him but they all require him to do something/make contact first so none of them have actually been put into place,

I like cooking so it's been hard having a child with more or less zero interest in food. One of his favourite things of all time are Asda smart price noodles. 

HearThem

I’m having such a down time at the moment. Our daughter will be turning 9 in a couple of weeks and is now at home full time due to unmet needs at school which has resulted in her plucking her eyelashes and eyebrows out. 

18yo is making very small strides of progress (will make a bowl of cereal and has been showering more). 

We have a child plan meet for the 3 year old at the end of the month as he is showing signs of ASN. 

Ashamed to say I am feeling low with the reality of our situation. I will never stop advocating for them but I am absolutely exhausted. 

Husband has taken a few weeks off work to try settle into a new home educating routine but I’ve lost my mojo entirely. 

Debt trickling down, currently sitting at £15,860. 

dawnybabes

It’s so hard - can you access any respite at all ? I’ve just one ‘concentrated’ YP, he’s 21 with ASD, Hypermobilty, dyspraxia, ADHD plus all the other stuff that comes part and parcel 

HearThem

We are on a waiting list to access respite care for our 18 year old but he is unwilling to have anyone else in the house. Hopefully by the time we get some hours he’ll adjust to the idea. 

Aimingforthegoodlife

Makes sense that you are exhausted, loving people doesn't make life easy, they are lucky to have a wonderful advocate. I hope that some options for respite open up for you, sounds like it could be just what is needed. Great the debt is still going down!

HearThem

Just here for a debt balance update. £14567.45 

I had a bit of a breakdown after our third child was flagged as likely ADHD/ASD. He has an initial screening and has been added to the waiting list for full assessment. 

Not making as much progress debt wise as we’d like at the moment due to my husband being home to help care for the kids. He is going back to work in 4 weeks but will be having a staggered return, starting at 2 full days (14-16 hour shifts plus commute time) and working back up to 3 or 4 days. 

We have just ordered a semi-decent sofa bed for the living room to give all kids their own bedrooms, essential with their individual needs and ages.

We will also have a trundle in each of the younger kids rooms for night time care needs but looking forward to having somewhere we can lie down on an evening before the first call out.  

All three children will be home full time for the foreseeable, although we may opt to put the littlest in nursery 1 or 2 days a week if we can find a suitable setting. 

We would absolutely love to buy a house with a bit of land over the next few years and I’ve crunched the numbers. We should be able to make it happen if we really hustle for the next 2 years. Not going to lie, I’m super overwhelmed at the thought of my husband going back to work but dreaming of our little croft house is keeping me going. 

HearThem

Well, what a difference 10 days can make. 

Had frank and open conversations with the husband regarding work/home life balance and meeting the children’s varying needs. 

He has decided to hand in his notice at work and register as self employed. While this is daunting in itself I am so relieved we will have him home for bedtime each evening. 

I will do a new SOA and post shortly. This will be changeable depending on available work so I will work it out on our lowest projected income with any extra going towards debt. 

I have just today bagged myself a little £100 a week Saturday job cleaning a large holiday home. Excited to have something external to busy myself. 

Onwards we go! 

HearThem

***Updated SOA***

Household Information

Number of adults in household........... 3

Number of children in household......... 2

Number of cars owned.................... 2

Number of pets 🐶🐶🐱 …3  

Monthly Income Details

Monthly income after tax................400

Partners monthly income after tax.......2298

Benefits................................ 1020 

Other income............................ 500

Total monthly income.................... 4218

Monthly Expense Details

Secured/HP loan repayments..............0

Rent.................................... 558

Council tax............................. 215

Electricity............................. 170 

Water rates............................. 0 (Scotland)

Plusnet broadband……..26.99

EE mobile x3 ………35 

TV Licence.............................. 0

Satellite/Cable TV...................... 0

Groceries etc. ......................... 1000 (2x ARFID kids) £200 a week so £800 on a 4 week month 

Clothing................................ 0

Petrol/diesel........................... 200

Car Road tax................................ 28

Car Insurance........................... paid annually 

Vehicle maintenance (including MOT).........0 (we usually take this from the emergency fund) 

Other child related expenses............ 250

Pet insurance/vet bills/food etc................. 150

Life assurance ......................... 35.46

Disney plus………………………..7.99

Hp instant ink……………..3.99

Presents (birthday, christmas etc)......100

Haircuts................................ 0

Entertainment/Miscellaneous/holiday ..........................500

Emergency fund.......................... 0

Total monthly expenses.................3280.43

Unsecured debt payments

Lloyds CC ………………………250

Lloyds CC (2) ………………..150

Unsecured debt balances

Lloyds CC (1)….9100 0% until July ‘25

Lloyds CC …….4000 0% until Feb ‘24

Total unsecured debt……13100

Monthly Budget Summary

Total monthly income....................4218

Expenses (including HP & secured debts)…………………3280.43

Available for debt repayments.........937.57

Monthly UNsecured debt repayments.....…………….400

Amount left after debt repayments.....………537.57 

If we stick to our budgets and spending categories each month the excess will go straight to paying off the credit cards. 

HearThem

Just a quick check in. Husband had his last day at his job on Tuesday. I attended a family wedding with the 3 year old on Wednesday which included driving in the city for the first time in 12 years of driving! Very proud of myself. 

Husband then had his first day of self-employed work moving boats for his former employer! Ended up being a long day for him after a mechanical fault but he earned approx £380 for the day. I have been busy sorting paperwork making sure we’re doing all the right things. 

I have opened a help to save account for each of us and will hopefully deposit £50 each per month into there. 

Husband cut the grass at a holiday cottage today earning £25 and I made £100 doing my Saturday job. 

No plans set in stone for tomorrow. 

We have however been offered 14 hours of respite for our eldest (almost 19 yo son) but struggling on how best to “spend” them. They must be used on a Saturday or Sunday and we have 3-4 months to use it before the funding expires.