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Needs ideas how to pass the time


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#1 AIR

Posted 10 January 2019 - 11:38 AM

Honestly not sure what to call the topic lol


A little bit of background info here goes, so bare with me

I have a dd that is starting highschool this year, she has Pddnos, Adhd and a life limiting health condition called pulmonary hypertension which she has a Picc line in her arm that supply’s life saving medication to her heart.

after 6months of sorting out risk management and working with the school,Sep and medical team and everyone else involved my dd is starting highschool this year , after her not being well enough to attend school since 2016 (which I fought really hard to get it to happen)

Now my question is what to i do to pass the time as I have to be on the premises incase something happens with her or her pump.

#2 Lallalla

Posted 10 January 2019 - 11:45 AM

Do an online course via a uni or tafe? Read a book? See if there are any volunteer roles the school needs doing? Or maybe develop a Twitter/instagram obsession?

#3 Nanns

Posted 10 January 2019 - 11:57 AM

Gosh, that is  a lot of pressure.

Ideas - write a book, read a book, study a course, learn a language, volunteer as the teacher's aide.

Ask the school for an office and be a VA during school hours??

Watch netflix series.

I am not sure if you have the desire to do any of these things, I just wanted to say you are amazing.

#4 MrsT2018

Posted 10 January 2019 - 11:58 AM

I agree - study online to be a Teachers aide. You'll have access to classrooms for experience and then once you're qualified you can get paid to be there when you were going to be there anyway!

#5 AIR

Posted 10 January 2019 - 12:14 PM

Thanks for the ideas ladies

Nanns “Gosh, that is alot of pressure “ considering that I make the medication that go in her pump and do all the line changes and Picc dressing changes I’m kinda use to the pressure lol

I’m just worried that spending so much time at school isn’t going to be manageable for me if I don’t find something of interest to do.

And I don’t want to fail in providing the opportunity for my dd to try and be as normal as she can be and make friends instead of being stuck at home being isolated if that makes sense, I’ve already failed because my dd inherited the genetic disease from my side of the family 😔

#6 Freddie'sMum

Posted 10 January 2019 - 12:17 PM

You haven't failed OP.  Can you ask the school if they would like your help while she is attending school ?

#7 Nerdette

Posted 10 January 2019 - 12:22 PM

AIR you are amazing!
I reckon online course would be the best option.
You didn't fail, genetic diseases suck, but it isn't your fault at all! You are doing a fantastic job trying to give your dd a normal life, that is truly admirable

#8 Expelliarmus

Posted 10 January 2019 - 12:32 PM

Online study for sure and there must be so much volunteer work that you could help them with. I can't guarantee that all the volunteer work is exciting ... but it would be so helpful :) .

We have children at our school with nurses onsite to attend to peg feeding and other medical conditions. Was that not an option in your state?

#9 luke's mummu

Posted 10 January 2019 - 01:05 PM

Another option would be to approach the school canteen about you working in a voluntary or paid capacity in the canteen. Our primary school employed 2 parents as part time canteen managers

#10 AIR

Posted 10 January 2019 - 01:08 PM

PP

I’m in Qld apparently that’s not an option due the severity of her illness we have a QAS Ambulance management plan inplace as well as a caution note, so having a nurse onsite isn’t possible (generally hospitals don’t know how to manage the illness so nurses don’t either)


Even if a nurse was on site I wouldn’t feel comfortable with someone else dealing with possible issues



When my dd was in a major hospital for 3months we were the ones that had to do the meds and medical stuff to do with her pump and line even though we were in a cardiac ward as the nurses are generally don’t have anything to do with the types of meds and the pump

Edited by AIR, 10 January 2019 - 01:10 PM.


#11 jojonbeanie

Posted 10 January 2019 - 01:20 PM

Audio books. Download them for free from your local library.

#12 SelceLisbeth

Posted 10 January 2019 - 01:38 PM

HI OP. I had a friend with the same condition. Very scary for all. Good on you for helping your child participate in school. Hopefully the time you spend there will be more boring than not.

Like a few PP's have stated, maybe a short course to start with? Especially while you are in the early days of her back and I am assuming there will be some settling in.

#13 Chaotic Pogo

Posted 10 January 2019 - 01:49 PM

Start an online business?  

Write a book?

Blogging

Anything you could do on a laptop

Assuming the school is going to give you somewhere 'pleasant' to sit with a table, chair etc.

Edited by Chaotic Pogo, 10 January 2019 - 01:50 PM.


#14 Drat

Posted 10 January 2019 - 02:00 PM

That's amazing that you are so dedicated to your daughter.

Personally i'd use it as an opportunity to do some study of my own and also do some volunteer work at the school. There's always so much stuff that needs doing at schools and it could possibly lead to a paid position.

#15 Tyfle Hour

Posted 10 January 2019 - 02:11 PM

Ask the library if they need help covering books, reshelving, etc?

#16 just roses

Posted 10 January 2019 - 02:30 PM

Congratulations to your daughter on getting to start high school! I hope it's a wonderful and productive year for you both.

I'd think about what you want to get out of the time. If you have had a plan or desire to study, this could be a really good opportunity.

For me, I'd need more structure than just an intention to read a good book or go for a walk. That said, if your life is otherwise quite exhausting (sounds like it is), it could simply be a good opportunity to rest.

#17 AIR

Posted 10 January 2019 - 02:45 PM

To be honest I think that’s part of the issue I’m so mentally drained and exhausted I can’t really think what I want to do, and making the effort almost feels like too much effort if that makes sense.

But I’ve got to be realistic about needing to do something, dont even get me started on how much will need to get done once I get home  everyday ,like running a home and  making medication etc  😳

Think I’m going to need to be super organised and have structure which will be fun with two kids , one with special needs🙃

#18 AIR

Posted 10 January 2019 - 02:47 PM

Again thanks everyone for your imput it’s definitely given me some things to consider 😊

#19 sassya

Posted 10 January 2019 - 02:49 PM

Is there somewhere you can nap, or do yoga (use a you tube class?) or a guided mediation? Maybe not for the whole school day! But you say you are exhausted - unsurprisingly - so maybe it would be helpful seeing it as a chance to nurture yourself and fill your cup.

#20 MrsT2018

Posted 10 January 2019 - 02:53 PM

Ah OP, I wonder - does your school have a good kitchen???

Wouldn't it be great if you could cook your dinner etc at school and take it home already done so that's one major after school job already ticked off your list!

#21 Ruf~Feral~es

Posted 10 January 2019 - 03:02 PM

There are some great ideas here, especially around volunteering for the school and doing courses that would help you be employable for the school.

I jsut wanted to add - don't let yourself become a 'full time' school volunteer or be so useful to them that you don't get time for yourself.

it sounds like you will still have a more than full workload when you get home, so make sure you get some 'down time' and relaxation whilst at school.  A place to nap and chill out sounds like a great idea.

Also maybe a timetable where you plan or 'roster' yourself - a bit of study, time to go for a walk or run, volunteer time and down-time.  I'm just thinking if it was me, I'd quickly get de-motivated and bored if I wasn't sticking to a routine of some sort.

Is there a space to where you could have a friend visit you for coffee or lunch?  As you might do if you were home or had flexibility to go out?

As with the other posters, great kudos to you AIR.  I am in awe of your dedication.

#22 Drat

Posted 10 January 2019 - 03:45 PM

View PostRuf~Feral~es, on 10 January 2019 - 03:02 PM, said:



Also maybe a timetable where you plan or 'roster' yourself - a bit of study, time to go for a walk or run, volunteer time and down-time.  I'm just thinking if it was me, I'd quickly get de-motivated and bored if I wasn't sticking to a routine of some sort.


This is a great idea. Make yourself a school timetable! :)

I'd just end up randomly surfing the net and wasting my brain cells all day without some sort of order. I'm not the type of person that should be left to their own devices ;)

#23 IkeaAddict

Posted 10 January 2019 - 04:20 PM

Crochet....knit.....cross stitch....colouring in.....

They are some of my hobbies and they are massive time eaters LOL

#24 BeStill

Posted 10 January 2019 - 04:26 PM

Is it essential that you are on school grounds full time? Do you have ndis funding that would cover a support worker who could be trained in her care needs? Realistically being the full time carer for the rest of her life 24/7 is not sustainable and not healthy for her or you. I know it is scary to let go but maybe now is the time to let others have some role and give yourself time and space to breath and think about the future.

#25 AIR

Posted 10 January 2019 - 05:47 PM

Bestill

Yes it  is essential I be on school grounds while she is at school she’s 12yrs old , she isn’t able to manage her pump if something goes wrong you only have a few minutes to fix it before things become critical , nore should she have that  kind of responsibility at her age.

Its got nothing to do with it being scary of letting go,

honestly would you allow a child to be solely responsible for there medical care that had a potential to become life threatening?

I’m already a full time carer for her 24/7 until she becames of an age to self manage i have no other option.

We finally got respite fir 10days a year in the only qld hospice child facility guess what i have to go too because they aren’t trained in her care




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