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Do you get fed up of the intrusion into your life because you have a disabled child?

(53 Posts)
Owllady Mon 15-Apr-13 10:05:14

I am having one of those days.

But I don't think i can even put into words how demoralising it can be sometimes. You try your hardest every single day, sometimes you can't cope but you get up put one put in front of the other and someone else's needs always come before yours and yet you get criticisms, often unhelpful, from people who are supposed to be there to support you. It's as if somehow you have become public property, you are no longer just someone's Mum you are accountable for all of it, everything. As if it wasn't overwhelming enough


zzzzz Tue 16-Apr-13 13:17:38

Oh yes, the marvellous "it will be easier for you" to have to clean up offer coffee and discuss and explain every bloody sign or barricade.

I point blank refuse now, last time (2 or three years ago) the blasted HV phoned 3 times to try and persuade me. hmm I have5 small children, 2 with sn, one at that stage needing round the clock supervision, run our own business, have several close family members who require über support due to cancer/divorce/transplant/war, HE one very challenging child. I have not the faintest intention of spending a day tidying up (I am not interested in the fact YOU don't care if its messy, I do), a couple of hours listening to tripe, followed by half a day calming both me and ds down.


Tootsandblanket Tue 16-Apr-13 13:31:07

I don't even clean up when they come ! Hahaha what a slob I am !
All of DD's appointments are at home as we can't get out. I am far too busy with her demanding self to tidy up for the nosey brigade!
We have night nurses every night too. At first I would make sure I was dressed etc, but they have now come to recognise my pyjamas and slippers very well!
One thing I cannot abide is the tagging along student. I know they have to learn, but not by coming into my house and gawping at DD, whilst uttering the immortal words " how do you cope" aarrgggghhh!

eggandcress Tue 16-Apr-13 13:39:39

Sometimes I feel like attaching a turnstile instead of a front door, we get so many home appointments.
I try to arrange them all together so I only have to clean up once. I don't have carers in the home now which is a bit of a relief in a way as I felt like we were on show.
Appointments about ds in the home with him here are a nightmare as I cannot concentrate on what the visitor is saying as I have to keep looking out for ds. Unless it is vital that they meet him I usually arrange these when he is at school. Sometimes I get them to come at 3.30 get the forms etc. out of the way and then meet him when he comes off the bus at 4.15.

zzzzz Tue 16-Apr-13 13:39:47

"Cope" grrrrrrrrrrrrrrrrrrrrrr the word makes my skin crawl.

elliejjtiny Tue 16-Apr-13 14:23:59

I used to hate it when students came to sit in on DS2's paed appointments pre-diagnosis. Paed would ask them what they thought, they would whisper something and paed would say "well done". I know they were probably saying things that I knew already but always wondered if they had thought of something that they weren't going to tell me about.

zzzzz glad I'm not the only one who has a DC who gets upset with home visits. I always got told not to be silly and that surely I had friends who came round. My friends don't tend to bring official bits of paper with them though, or a set of baby scales so DS1 can easily tell the difference!

zzzzz Tue 16-Apr-13 14:29:02

Ooh just read back my last post. Who knew I still felt so infuriated by all this?? blush

I am proud to announce that barring the SALT report I'm waiting on I have absolutely no contact with professionals anymore at all. grin. We are under Ze radar. grin <dons black clothes, paints face black and ninjas through life joyfully "living" not "coping">

fanjoforthemammaries7850 Tue 16-Apr-13 14:47:42

Completely..everyone and his dog is trying to "fix" DD hmm

And constant stream of people in house, someone is about to come 3x a week between 5 and 6 pm to work with her on signing..which is wonderful but still feels like an intrusion.

Am constantly cleaning the house.

Often wish we could just live our lives like anyone else.

fanjoforthemammaries7850 Tue 16-Apr-13 14:49:46

Also not a big fan of students coming..there was a student at DD's school annual review, which I felt should have been private and not had some teenage girl sitting in that we didn't know.

fanjoforthemammaries7850 Tue 16-Apr-13 14:50:22

I meant relatives trying to "fix" DD...there hasn't been a stream of professionals trying to do so, strangely enough wink

ouryve Tue 16-Apr-13 14:51:32

yy regarding bruises. I've lost track of all the ones DS1 has - he's covered in them sometimes from his meltdowns and general clumsiness. He crashes into everything and actively throws himself at stuff.

I had to mention a bruise on DS2's thigh, yesterday - a perfect imprint of DS1's teeth sad

ouryve Tue 16-Apr-13 15:51:28

You are allowed to object to the presence of students, btw.

Though I know that's easier said than done.

working9while5 Tue 16-Apr-13 16:19:23

I think this sort of thread should be mandatory reading for commissioners tbh.

elliejjtiny Tue 16-Apr-13 16:44:52

DH's grandad keeps telling me about "cures" he's found. Some people should be banned from google.

insanityscratching Tue 16-Apr-13 17:43:46

Do you know I thought I was the only one who hated all the "input"
I frightened the HV away before she visited by letting her know I'd pressed a formal complaint against a predecessor and demanding dd was only given health checks by a GP at least.SALT avoided me like the plague because I challenged her report on dd and had it removed from the appendix to her statement.
Actually I can see a pattern here, I'm avoided like the plague these days because I'm a stroppy cow who complains if you don't meet my exacting standards grin

NoHaudinMaWheest Tue 16-Apr-13 19:52:22

We have had support workers coming in for Ds for a few months now and I really find it a double edged sword. I don't tidy up for them -
gave that up a long time ago - but I do feel on show and that anything they don't approve of may be reported back. In fact some things have been. I think it is beneficial for Ds so I am putting up with it but it comes to something when I don't feel comfortable using the loo in my own house.

zzzzz Tue 16-Apr-13 21:13:47

".... But it comes to something when I don't feel comfortable using the loo in my own house." grin

You have made me chuckle. So true!

wentshopping Tue 16-Apr-13 22:37:53

Not in the UK, so maybe things are different here.... one of DD's OTs once told me that she went to someone's house to work with the child, only for the parents to excuse themselves and ..ahem.. get on with something in the bedroom shock

Owllady Wed 17-Apr-13 09:41:08

wentshopping grin
that's where I am going wrong with 'respite' then

zzzzz Wed 17-Apr-13 11:40:22

shock I am speechless!

TooBloodyFedUpForWords Wed 17-Apr-13 11:49:39

I bet the OT didn't make recommendations about that technique <snort>

TooBloodyFedUpForWords Wed 17-Apr-13 11:49:42

I bet the OT didn't make recommendations about that technique <snort>

starfishmummy Wed 17-Apr-13 12:43:33

When DS was smaller he had a lot of input at home and I hated it. I dreaded going out because I knew I would get back to numerous messages on the answer machine, all of which would be someone else wanting to see him. There were times when I told certain of his therapists" that we were not available for appointments so we could have a free week!! The only exception was his physio, who was lovely. She used to come to us at 8.30 after dropping her son off at his nearby school (so the rest of the day was free) and never overstayed!!

My pet hate - still - are the ones who turn up with a student standing behind them and ask if it is OK. I think the student should wait in the car until they have checked as sometimes I just don't want an extra person with no warning but didn't feel I could say no when they were on the doorstep.

For us, DS starting school made a big difference, He goes to a special school so a lot of the people he needed to see would see him there.

But don't start me on the intrusive questions. I have perfected the politely put "why do you need to know that?" reply!!

elliejjtiny Wed 17-Apr-13 13:02:52

I've got a system, a bit like the dr surgery where I have slots for urgent and non urgent appointments and at least 1 free day a week for me to do hI do in school holidays are the dentist and orthotics. A lot of the professionals hate it, and they all think all their appointments should get an urgent appointment. To be fair though, I always ask at the end of each appointment when they want to see us next and offer to book them in. I can't ring one of them and demand to be seen for something routine the next week so why should they expect me to do that.

shock and grin at the bedroom antics during the OT appointment. Maybe I will do that next time.

MareeyaDolores Wed 17-Apr-13 14:02:01

excuse themselves and ..ahem.. get on with something

maybe we all should opt back into the system hmm

Bluebirdonmyshoulder Wed 17-Apr-13 22:15:21

You've all given me a lot of food for thought. I think I've just accepted the intrusion without thinking that I have a choice when in fact some aspects of it have really been bothering me.

I don't mind people coming to the house but I do mind when you get questions such as, "What are you doing for the rest of the day?", "Are you doing anything nice this weekend?" and "Where was that photo taken?" None of these issues are anyone's business and are completely irrelevant to DD's condition. They get to come in my house but not our private life.

I think I might have to think how to phrase it politely but I'm going to decree these kinds of questions as off limits, just to have some boundaries and some space between DD's medical appointments and our actual life.

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