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

[Owllady]

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

[hazeyjane]

I think at the beginning it is hard to know the people who are going to be the important people in your dcs life. Our portage worker has become very important to us, I don't think I would have predicted that at the beginning, and found it odd to have this larger than life character in our house, playing these big exaggerated games with ds. But he adores her, and the way she connects with him is brilliant, he loves the slapstick and big dramatic gestures we have her picture up on our fridge!

But it took us a year to realise that ds's ot was just crap, I didn't even realise what she should be doing, and it was very cathartic to sit in a room with her and ask her what she was supposed to be doing for ds, and after she explained, to say that I didn't think she was doing any of those things, and could we have someone else please.

We have had the opposite of a lot here, in that we have struggled to have people do home visits, despite ds being very difficult in other environments. I have become a lot more bolshie about the whole thing, and now we do get more home visits, and I prefer that because they get to see ds, rather than him climbing in my lap and hiding.

In fact ds's physio is coming over at 10, so I had better clear a path amongst the toys!

[Bluebirdonmyshoulder]

That's good advice moondog, I know just who I'm going to cut loose. Been wanting to do it for a while and was trying to think of a socially acceptable excuse.

Now I'm just going to be honest and say we have so many appointments and I'm prioritising!

[moondog]

I am often amazed at the level of intrusiveness that people put up with and advice would always be that if people are not offering you anything tangible or measurable then cut them loose. (Having said that I am also bemused at the fact that some people seem to enjoy, nay thrive on the attention that being involved with myriad busybodies from the 'caring professions' (hurl) brings.

Of course, it's easier for people like me to say 'Get rid!' as I have experience of hundreds of kids with SEN. Not quite the same when it's your child and your first experience.

I let one well meaning but ultimatley useless ed psych in once for a session of 'solution focus' input (oh and a lot of conversation about her earnest and right on holiday choices).
Utter waste of time and energy.
Any soution focus has and always will be provided by me.

[Bluebirdonmyshoulder]

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.

[MareeyaDolores]

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

maybe we all should opt back into the system

[elliejjtiny]

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.

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

[starfishmummy]

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!!

[TooBloodyFedUpForWords]

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

[TooBloodyFedUpForWords]

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

[Owllady]

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

[wentshopping]

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

[NoHaudinMaWheest]

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.

[insanityscratching]

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

[elliejjtiny]

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

[working9while5]

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

[ouryve]

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

Though I know that's easier said than done.

[ouryve]

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 :(

[fanjoforthemammaries7850]

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

[fanjoforthemammaries7850]

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]

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

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.

[elliejjtiny]

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!