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Do you get fed up of the intrusion into your life because you have a disabled child?(53 Posts)
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
Yep. Got SW coming soon...
Absolutely, I think that is because your privacy is constantly violated too. I think this has a fundamental impact on people's well-being!
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.
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.
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
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.
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..."
I found the intrusion almost intolerable. It's a huge source of stress to me and I try hard to keep all professionals out of our home. I am in awe of those of you who cope with carers in your home. I would find that very very hard.
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!
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]
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.
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!
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'
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
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.
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
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
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
Now that really would liven up 'news time' insanity .
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
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.
And the bear... don't start me on the bear. I've posted before about that one
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.
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.
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. 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.
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!
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.
"Cope" grrrrrrrrrrrrrrrrrrrrrr the word makes my skin crawl.
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!
Ooh just read back my last post. Who knew I still felt so infuriated by all this??
I am proud to announce that barring the SALT report I'm waiting on I have absolutely no contact with professionals anymore at all. . We are under Ze radar. <dons black clothes, paints face black and ninjas through life joyfully "living" not "coping">
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.
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.
I meant relatives trying to "fix" DD...there hasn't been a stream of professionals trying to do so, strangely enough
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
You are allowed to object to the presence of students, btw.
Though I know that's easier said than done.
I think this sort of thread should be mandatory reading for commissioners tbh.
DH's grandad keeps telling me about "cures" he's found. Some people should be banned from google.
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
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.
".... But it comes to something when I don't feel comfortable using the loo in my own house."
You have made me chuckle. So true!
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
that's where I am going wrong with 'respite' then
I bet the OT didn't make recommendations about that technique <snort>
I bet the OT didn't make recommendations about that technique <snort>
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!!
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.
excuse themselves and ..ahem.. get on with something
maybe we all should opt back into the system
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.
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.
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!
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!
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