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

[CouthySaysEatChoccyEggs]

Yep. Got SW coming soon...

[Inappropriatelyemployed]

Absolutely, I think that is because your privacy is constantly violated too. I think this has a fundamental impact on people's well-being!

[cansu]

yes very much so. I feel that I have to be perfect mum in a way. I am excessively anxious if the dc hurt themselves when another parent wouldn't even think about it. the worst part is that it will always be like this. If your child is NT then as they get older they take on more responsibility for themselves. ds and dd will always need as much supervision as young children and yet they are bigger and stronger than young children and have more behavioural problems. I find this a massive soure of stress. I also get fed up of intrusive questions when in meetings. At my dd annual review a prof suggested that we might have a special meeting to share our hopes and dreams for dd future. Why would I want to do this with her school and strangers? it is a subject that causes me a lot of grief because I try not to think about it as I worry a lot about the services for dd as she gets older. Would all parents be happy to do this? I don't think so. It is infuriating.

[bigbluebus]

Cansu I think the 'hopes and dreams' bit comes in at the 14+ review when the school is responsible for including Transition planning into the annual review. I agree it is a double edged sword. You know what you would really love for your DC when they reach adulthood,but at the same time, you know that it doesn't actually exist!

I have certainly found my life to be 'intruded' upon especially as we have carers come into our house to look after DD. We were given 9 hrs a week, but never use that amount, as I don't want to be here when they are and neither do I want to be forced out of my house for 9 hrs a week - not in the middle of winter anyway! But my whole house and family life is open to inspection every time these people come in through the door. I once had a Commissioner from the PCT tell me that as there was no suitable respite facility in adult services for DD, they could arrange around the clock care in my home for her. She did not understand that sometimes, I might just want to spend the weekend slobbing around my house (and I don't want to do that with strangers around) and that I cannot afford to go on holiday or away for the weekend just so I can get respite.

[Owllady]

I completely get that about carers being in your house, I try to refuse tbh and say they have to take dd out for respite as it is just easier. You know sometimes in the Easter holidays I don't want to be upa nd dressed at the crack of dawn either. I have had a carer here only last week who turned up at 9am and she said 'oversleep did we?' and I felt really about it as I had already got up, got a teenage child with sn, bathed, her bed stripped, medicine done, overseen the other two children, got a bag ready etc. I come somewhere last on that list
and it wasn'ty a school day. I didn't have to go or be anywhere

Today is about a bruise though. A face to face conversation and two telephone calls. I have no idea where it is from, but it'a that having to explain thing when she gets bruises because she is physically disabled and falls over/walks into things etc

It's great people are protecting her but sometimes I feel under attack :(

[lougle]

I get it. I am swallowed up by the monotony. I have a package of care for DD, which I'm grateful for, but she's still just 7 years old and I don't like the idea of her being taken away for 2 hours each day to give me support, so we have carers who come to us.

The carers are both lovely, but there is no room in my week for spontaneity. Monday Carer 1, Tuesday Carer 2, Wednesday KIDS Club, Thursday Homestart, Friday -our one free day.

I have to rush to school after DD1's bus takes her, which means that I can't offer the girls the chance to walk to school. I can't let them play in the playground after school, because I have a 3 minute window between when we return and when her bus arrives, and that's with her being last drop.

[lougle]

I'm super-cautious with bruises, also. I always write in DD1's home-school book about new bruises: "You may notice a linear bruise on DD1's left upper outer thigh. She tripped and landed on the threshold bar of the front door..."

[bigbluebus]

Owllady I'm not even brave enough to let them in unless I am fully dressed, hair done and a full face of make-up!
I know what you mean about the bruises though. DD goes to a hospice, and they have a chart in the careplan to mark any lumps/bumps/scratches or bruises on, so you have to declare any existing ones when you are booking your child in!
A couple of years ago, DD broke both her legs - 'spontaneously'. She has brittle bones and no-one made any accusations, but I couldn't help wondering what everyone was thinking behind our backs. (DD is wheelchair bound, so it wasn't an injury she could have sustained by herself).
Lougle I remember that tiny window between fetching one from school and the other arriving home. DS was never allowed to stop at the park either, and when he was at nursery, I remember having to take a narrow country lane to avoid the level crossing as there was always a train due and I didn't have time to wait for it!

The vsiting professionals before DD started school were a nightmare too. There were loads of them - specialist doctors, community nurses, physio, S&L, Health visitor, teacher of visually impaired, Portage worker...... the list was endless. In the end, I just told them all "You can come on Thursday at xx time". I wrote off Thursdays as the day I would not leave the house, but at least that gave me Wed & Fri (as at the time I worked all day Mon & Tues).

I know they all think they are making our lives better and we should be grateful for their input ... and in most cases we were, but I think sometimes the professionals just need to take a step back and look at the impact it all has on family life, and whilst there probably isn't much they can do about it, at least a little bit of understanding of the situation wouldn't go amiss!

[vjg13]

When my daughter was at the pre school stage I can remember all the home visits only too well. She doesn't have a diagnosis apart from developmental delay so I always felt there was an undercurrent of 'are there problems or are you just a really s**t mother'. [ sad]

[insanityscratching]

You aren't alone I hate it. Sent ds 18 to school today and feel obliged to list what activities he has done during the holidays because I feel I will be judged if we just chill for the two weeks. Even though I know my nt ones often spent holidays mooching about with friends and it wasn't frowned upon and ds would far rather chill with his games,books and dvds than go out anyway.
Dd has done her homework but then I am expected to work on IEP targets on top as well as all the other stuff involved with having children with ASD and the two ARs imminent so need to prepare for them.
Life is harder anyway but then there are more hurdles to jump and more people to feed back to as well. No wonder we are stressed.

[bigbluebus]

insanity I know what you mean about reporting activities too. DD brings a 'Big Mack' switch home every weekend and holiday so that we can record on it what she has done for a sort of 'show and tell' session on a Monday morning.
I often put "quiet weekend for DD this weekend" and usually blame the weather being too hot/cold etc. This is subtext for "did sod all this weekend as we couldn't be bothered. She is 18 FFS - you wouldn't normally tell your teachers what you did at the weekend if you are 18!
Its a bit like bringing home the nursery teddy with its log book all over again - competitive parenting and Big Brother at its worst!

[Owllady]

:o I know we have, went swimming on Saturday, did a roast Sunday - which equates to doing nothing
played on computer
chilled out in garden - same thing!

Sometimes I have been tempted to put, 'On Saturday, overslept, dd had crapped the bed in the night so it was a full bed change and bath, during this I cried for a bit and was swore at twice. Put tv on for half an hour, dd unhappy so went a ride in the car sainsburys where she screamed by the magazines and threw herself on the floor by the sausages. Several customers were spat at. 10.30am, we drove home'

[insanityscratching]

My older ds took ds and his two friends from school to the pub during the holiday in his home school book today his teacher reports that all three of them had talked about it. No doubt their mums had listed it as one of their activities too

[wentshopping]

We used to get a mac button sent home to record something original for show and tell every morning. Quite often I would record "aargh the bus is here" because it really was, and I was still stuffing arms into sleeves.

We used to have therapists come to the house before DD started school, which I hated as they were always late, early etc. One gave me a questionnaire to fill in about the service and offered to take it away with her in an unsealed envelope. I posted it as it was not filled with sweetness and light.

[mymatemax]

no, but my friend gave me some advice when ds2 was in SCBU & i have stuck to it.
I welcome any support offered but I only allow continued involvement fromagencies & professionals that offer some benefit to us or ds2.
So we stopped involvement with the SALT who was only offering 6 monthly reviews & no actual therpay, same with the pre school SENCO many yrs ago when she said she had assessed ds2's needs without meeting him.
It is very important as a parent & carer to feel in control

[bigbluebus]

Go on Owllady I dare you

Insanity One of the things that DD did this holidays was went to a 21st Birthday party of a young man who used to go to her school. So loads of teachers and TAs from the school were there too. Don't suppose they reported their news though

[insanityscratching]

I'm wondering if there will be any mention of one of ds's friends requests to make the next visit to a lapdancing bar My older ds nearly choked when he asked

[bigbluebus]

Now that really would liven up 'news time' insanity .

[2old2beamum]

Agree with all of the above, especially about in house care I feel so uncomfortable and its my bloody house and also has the audacity to comment on their state of health (always negative)

My biggest bugbear was professionals marching into the home promising the earth and never to be seen again e.g still waiting for a section 7 promised 8 years ago sadly he is still deafblind

[MareeyaDolores]

Nope, cos I don't let them in .

No aiming high respite place. No social worker. No nurture group at school. No home visit from reception teachers. No portage. No OT equipment (got it second-hand off ebay instead). No earlyBird with home visits and video. Waved bye to the various midwives at day 3 and did the 10d sign-off visits at their clinic. Newborn home visit from random HV: kept so short they were delighted to be back on schedule after a late arrival.

Just one proper visit from HV for ds2 2y check, cos she's the same one from ds1 and dd breastfeeding difficulties so I know she's a good-un. And I do let the dc childminder in, she's a good, loyal friend as well as a professional.

[MareeyaDolores]

And the bear... don't start me on the bear. I've posted before about that one

[messhead]

I'm like Mareeya, I avoid anything that requires home visits. Means I've turned down a few services which have offered to 'meet me in my home as it'll be easier for you' - no, it's not really easier to have to go rushing around tidying up for appointments when I'm already dealing with getting DS up and ready. Most of the time the reason is not actually to help the parent anyway, it's because they're so underfunded that they don't have offices or other premises to work from...

I don't have the issue with having to list holiday activities thankfully, DS's school is fab and they encourage students to have downtime with family, they don't even set homework as they acknowledge that most students with AS are pretty rigid about schoolwork being for school.

I've had some pretty intrusive reports written in the past though, some vindictive SS reports made when I was seeking respite (avoid SS like the plague now) and some strange CAMHS staff who want to dwell on events in DS's life from when he was under the age of one (he's now 14 and has no recollection of these). No way would this ever be relevant if DS was NT.

[elliejjtiny]

Totally agree with you all. DS1 used to get so wound up by home visits for DS2 and if he knew someone was coming he'd get all his toys out and spread them all over the living room floor. He was 2, had suspected ASD, a poorly little brother and a mum who couldn't take him to the park/toddler group because of appointments every day.

DS3 has mild hypermobility and development delay. He is into everything at the moment and so is covered in bruises most of the time. He needs to experience things other 2 year olds do but when I let him I get a catsbummouth from the HV and a report to SS (who decided to do nothing thank goodness).

DS2 has severe hypermobility. He is dry in the day but he can't get to the toilet without help unless he goes in plenty of time, which mostly he doesn't. He also gets frustrated when he can't do something. We had respite for a few months when he was a baby but turned it down in the end because the constant digs from the SW about how some families had it a lot worse were making my PND worse.

I'm currently 28 weeks pg with (unplanned) DC4. Various catsbummouths from the professionals who think I should have stopped after DS2. DC4 has a cleft lip, probably because I didn't start taking folic acid until I was 6 weeks pregnant. The HV has done 1 antenatal appointment where she admitted she'd never had a baby with a cleft lip on her caseload before and now wants to do 2 more. Goodness knows why. If she carries on like that after DC4 is born I think I'll go insane.

I think I'm an ok mum. My house isn't the tidiest but not too bad considering I have to change 3 lots of bedding most days and do various other bits of housework that come with children with SN (had to clean poo out of the washing machine seal yesterday). I hate that we get all this scrutiny. My friends with NT children just say, "oh I don't bother seeing my hv after the 6 week check" but mine summons me to the clinic and if I don't go she comes round "to offer support". If I want support I talk to other parents of children with SN, because they know what it's like. I don't mind having children with SN, I can cope with that, it's the people who are supposed to be helping who make everything twice as hard.