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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

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Original poster

To feel that SN professionals make you feel even guiltier than normal?

50 replies

laumiere · 08/05/2009 21:35

Is it me or is the general 'everything you do affects your child' message so much worse when it comes to SN kids?

My DS1 has cerebral palsy and autistic tendencies, and we just had a new baby. At his latest meeting there was general surprise that I wasn't doing 25 hours of physio and constant speech therapy every day, and that DS1 would suffer horribly as a result. FGS, it takes all of my power just to get all of us up and dressed in the mornings!

Why is it health professionals always make you feel guilty for what you're NOT doing?

OP posts:

Welshwoman · 08/05/2009 21:51

I do know what you mean! I have 3 Dc with SN and must say now I do what I think is best and know to be do able on a day to day basis - when ds1 was little, I took everything the ?professionals?? said as gospel but then as we saw different ones with different opinions and all of them thinking their ?speciality ?was the most important.

When they start school it gets worse, as every teacher has different opinion and some have very little understanding of the challenge of even getting them to school on time etc and that making a paper Mache parrot for a project might not have been my highest priority in the half term J

I do value and have met some outstanding SN professionals and teachers but have also learned to cherry pick what advice we use!

Parmageddon · 08/05/2009 21:55

Agree, I am sometimes on the defensive when a therapist of whatever sort turns up. The OT insisted that I was 'de-skilling' dd2 by not allowing her to dress and undress herself (she is completely unable to do this - if I waited for her she would be permanently in her pyjamas )! But I think once they get to know you, things relax a bit.

Original poster

laumiere · 08/05/2009 22:05

Parma I so hear you! Portage said not to bring (non-verbal) DS1 a spoon for his food but to bring a knife to try to get him to ask for a spoon.

I tried explaining that a) he wouldn't ask, b) he'd freak out because it was wrong and would be really upset before nursery and c) I have to give him his lunch, breastfeed the baby and get us all out of the house in 30 min so that he actually gets to nursery! No dice of course....

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FairLadyRantALot · 08/05/2009 22:29

parma, you experience with the ot saddens me, that ot's opinion goes completely against the whole philosophy of ot...

(I am a first year OT student btw...hoping to be a good, if not very good OT in the future)

Welshwoman · 08/05/2009 22:39

We have had 2 fab OT's but one who thought ADD and asperger's were parenting problems not neurological ones, and as she knew mine and dh?s jobs, basically told us we should be ashamed of ourselves!

meltedmarsbars · 08/05/2009 22:57

I have a different slant - I used to do tons of the therapy, and I remember the therapists being slightly incredulous that I did all the exercises with my sn child AND had 2 others under 4 AND stayed sane.

Gradually I lost the plot and it became too much, and now I let the professioonals get on with it themselves!

chegirl · 09/05/2009 16:14

I see this from both sides as I have a child with SN and work with children with disabilities/additional needs.

I have to say its bloody exhausting because I think about EVERYTHING little thing I say to parents. I am terrified of some chatty remark being taken the wrong way.

I dread being 'one of those' professionals.

My DS had tons of appointments when he was tiny. He had extra, extra because we were fostering him so loads of reviews, contact meetings etc. I used to go for every single one without fail. Never missed a one. Sometimes he had 3 in one day! It was the professionals who said 'well he looks fine and I cant see any problem but we might as well book him in for another look next month' that did me in. He had his eyes checked every 6 mths for years although there was never any worry about his eyes. I eventually said no more and I was pretty much accused of not caring enough to bother!

Never mind he had not missed an appointment for anything all throughout his sister's terminal illness and even immediatly after her death

I appreciate that the professionals were coming from a careing standpoint but did they really think they cared more about my son than I did?

laurmiere Maybe you couldve offered your LO both and see if he choose in his own way? i.e. looked at the one he wanted or pointed. Then you could have worked on this over the following weeks? Portage should be worked out with the parent not be prescriptive.

Deeeja · 09/05/2009 17:13

With you there, I was once told to withhold water from my non-verbal autistic son, to make him ask for it, by a salt.

TallulahToo · 09/05/2009 17:14

I used to take every word & follow it to the letter until I finally cracked and told a few professionals that we needed time to 'just feed the ducks!'. This was said with a huge lump in my throat - as though the ducks might be starved without us. We laugh about it now & they get it - family time is just as important, if not more so.

sickofsocalledexperts · 09/05/2009 17:28

I'm a mum of an autistic child and just look at my mumsnet name to see what I think! I think half of them know nothing about autism, apart from a few half-baked theories that they trot out with a superior look on their smug faces!

sarah293 · 09/05/2009 17:32

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Original poster

laumiere · 09/05/2009 21:08

che we do this with drinks etc, but he gets very upset if he doesn't know what we want him to do, so free choice can be difficult. Poor baby craves very clear instructions, so for example when a SALT asked him which he liked best, the red or the yellow chair (at 19 months!) he burst into tears.

OP posts:

2shoes · 09/05/2009 21:24

yanbu, bit tbh I have found it is more the pressure from other parents,
you know the ones that have strict routines of when johnny should do this or that.
I always think oops(dd has severe cp)

chegirl · 09/05/2009 21:28

The fact is laumiere you know your child best. Its such a shame when profs get hung up on achieving certain outcomes for development.

'Choosing' is a biggie I am afraid. It features quite a lot in developement. I would assume (but please shoot me down in flames if I am being presumptious) that your little man does choose but in his own way. In a way that you, as his mum, has tuned into.

Was she being serious when she asked him about the chair (i.e. assessing his S&L) or was it an off the cuff comment?

You dont have to tell me, I am just curious because its a pretty hard question for any toddler to answer!

Original poster

laumiere · 09/05/2009 22:00

No, she was serious, it was at one of his assessments.He did get a red brick and a yellow brick and put them on the correct chairs though.

He does choose if he can see the objects or a representation of them, but if you ask him about things he can't see (or that you don't do a sign for) he does get upset.

OP posts:

chegirl · 09/05/2009 23:01

Clever boy! That will be his 'colour matching' box ticked nicely then

My DS has been under assesment since he was teeny. I used to get quite tetchy as the activities seemed pointless. I do understand them better now I work in child development. They are very rigid and are such a small snapshot of a child. But I can see that there has to be some sort of measure of a child's abilities.

I found them disheartening and negative.

I once had a HV tell me off because I had not yet given DS pencils to draw with. He was a year old! She looked at me as if I had told her I kept him in a cage. He draws beautiful pictures now (he is 6) but he didnt start until he was 4ish. It simply wasnt something he could manage and I wasnt going to force him to fit in with her little tick list.

sarah293 · 10/05/2009 08:30

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pagwatch · 10/05/2009 08:57

Oh God no. YANBU

The thing is they hit you with the shitty stick everyway you turn.
One Consultant paediatrician told me that I was worrying to much and needed to get out more, another that DS2 just needed to go to a good parent and toddler. A Dietician threatened to report me to SS for trying the GFCF diet.
I HATE "recovery" stories so beloved of the media where a (usually) woman sacrifices every waking moment and researches with the skill and insight of a trainned research scientist even though she was a dog walker and juggler by trade , only to find a cure for her childs condition that turns out to be oil from a freshly squeezed turbot massage in at dawn every day. The message is always ....'well it was because her love was so great'.
So tiring. To endlessly feel that we don't do enough, don't try hard enough , just don't love enough.
For me, some days, not putting my knickers on my head constitutes an extraordinary effort

sarah293 · 10/05/2009 09:04

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beldaran · 10/05/2009 09:29

I find it is my DD's Physio that does to me. She has the ability to make me feel like a naughty child (im 25 btw), just because i have questioned her over something.

At the moment it is over SN buggies. One was ordered for us (i was forced into it and given no alternative choice), we went home and managed to find the company on the internet but realised that the buggy was far to big to put in the car so we cancelled and said we were going to do some research into smaller ones.
Physio is now determined to make my life hell by bringing this up every time we see her and will not except the fact that we can (and have) found something that will fit into our lifestyle whilst providing the support DD needs.
She even suggested that we take the parcel shelf off and put half of the buggy on the passenger seat of the car! That means that only one person could take DD out in the car and we wouldnt be able to go shopping or anything. DD is not old enough to be eligible for mobility yet.
I don't think our physio is used to people questioning her so i think we have suprised her a little.

FairLadyRantALot · 10/05/2009 09:53

sorry, a little hi-jack, hope no one minds,
Riven, just took a look at your profile (again) and I see you have one of those Bikes with a seat attached for your dd. I saw those at Naidex, and thought they looked fabulous....how do you find it to use? Just genuine interest...because I wondered if they would be heavy to ride?
Oh, and how is your dd doing?

sarah293 · 10/05/2009 10:37

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pagwatch · 10/05/2009 11:09

Riven
did you get a fund raising account going on here. Do you have a link?

sarah293 · 10/05/2009 11:20

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pagwatch · 10/05/2009 11:30

Riven

chicken would you send me the account no? My paypal account is dead slow so it will take a few weeks but would like to forward you a bit
Do you want me to send you my email address?

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