come and kick me up the arse, feel like a shit mum after an awful physio appointment..

[hazeyjane]

..ds had an appointment with the physio and ot today, it was awful. They have said before about how difficult it is to assess ds, as he has bad separation anxiety, is very clingy to me and is very wary of other people, and certain situations.

So today, he isn't doing too badly, playing next to me, whilst I am talking. Then the ot asked me to move away from him to the other side of the room, which I did. Ds fell to the floor crying, and the ot, said right now how would you normally react in this situation. I was kind of thrown, and they said i should just sit and say - 'ds, if you stop crying i will pick you up' and ask him to come to me.

After 10 minutes (I checked the clock) ds - still screaming,started to wriggle across the floor to me, he can't get up off the floor on his own because of his low tone, and by this time he was absolutely hysterical and just collapsed again, I picked him up and there was snot and drool everywhere, he was sweating and cold, and then he screamed for the rest of the session.

I don't know whether I feel more awful for not picking him up straight away when he was in such a state, or whether I feel so bad because I am obviously causing ds's seperation anxiety, by being too soft The only way we get him to sleep is by having him sleep with us, this must make it worse. I have sat the girls down with some sweets and ds is curled up on the sofa, and I am trying to hold it together because I just feel like crying my eyes out.

[porridgelover]

You did well to go back over it, and to be calm at the same time. I agree with coff33- make a list and bring it with you.
I would be asking why he cannot access specialist OT at the CDC. Do you think the PT will be ob board to advise you where and how to pursue the best possible service for him? Alternatively could the sn nursery OT advise you about where and what he needs?

[hazeyjane]

haha, well i didn't say out and out that i didn't want to make an official complaint - i will try to catch some bees with honey, and then if that fails, i'll definitely go for fly catching with poop!!

[Firsttimer7259]

Oh no its bees with honey - flies like poop!

[Firsttimer7259]

Impressive hazey - well done, the complaints always still there if your softly softly doesnt work and you may find you win more flies with honey as they say. Good luck

[coff33pot]

You are a bigger person and more rational than me as I would have complained so well done to you for taking the diplomatic approach :)

It does sound ok and with your DH their too you have a chance of getting your concerns over and your feelings on the matter.

I would write down a list between yourself and DH on what YOU would like to see happening xx

[hazeyjane]

Just to let you all know, I have just spoken to the physio.

She said she completely understood why I was so upset, she felt that because I know her so well that I would say something whilst I was there.

Apparently we fall between 2 borders wrt ot equipment, and if we were part of the other pct's equipment service ds would have had specialist seating, a bath seat and stuff to help with his oro motor/feeding issues. Because we are in a different pct (where he hasn't even been assessed!) they have deemed him able enough to not even get an assessment. What i don't understand is that his sn nursery is in this other pct, and there is an occupational therapist there, who has never even talked to me (ds has been there for 14 months). They also don't liase between the sn nursery and the child development centre where he is seen by his paed, physio and ot - what a bloody mess!

She asked if I wanted to make an official complaint, but I said I didn't really want to go through it all over the phone, so i asked if we could have a meeting with her, the ot, me and dh and talk through what happened, what ot's role is supposed to be, how we can access the best ot service and how we can all best try to get ds the support he needs considering his clinginess and seperation anxiety.

Does that all sound ok? I was shaking like a leaf when I was talking to her!

[babiki]

Hazey can you pm me your email and I'll send it tonight

[hazeyjane]

Also going to google Hopscotch (although ds is probably too young)

The sensory thing interests me because ds definitely has some things that increase his anxiety and clinginess, and at nursery he is much more willing to move away from me and play with the keyworker in the sensory room and soft play room - both are small and fairly dark and much less noisy than the main room. He also likes the weight thing, he often sleeps with a beanbag bear resting on his tummy - or maybe that is the reflux.

Babiki can joing dev9, in being interested in what your feeding salt says. We have been struggling to sees a salt who will provide more advice than - try him with chewy tubes, offer him different foods and give him a kazoo (ds chews it)!

Anyway one battle at a time. I wrote down all the points I was concerned about with the ot and have left a message with the physio to call me back - I want to discuss it with her, because we have more contact with her atm and she is much more approachable and knows us a family well. So hopefully she will call today.

There was a message on my phone from the OT yesterday saying that she had found a bath seat on ebay for us for £60 - only 18 months too late!

Thanks again for all the very supportive messages - you really are all lovely.

[SallyBear]

Off to google Hopscotch

[dev9aug]

Thanks Silver softplay sounds fun..I have just called them and left a message. DS1 does have issues around anxiety/confidence so if anything can help, it will be brilliant. Really excited at this...

[silverfrog]

she was 5ish, dev. it was for our Tribunal, so would have been the spring/summer of 2010ish I reckon. if you search my posts for SI OT (sorry, typing one handed as have ds asleep on me) you'll find some descriptions of how dd1's behaviour changed - for us it was mostly to do with behaviours in public, and an increased ability to listen and focus in noisy places etc.

we only went for about 3/4 months, iirc. but the changes were enormous (and dd1 had an absolute ball doing it - was like softplay for her!)

[dev9aug]

Interesting Silverfrog, can I ask how old was DD1 when she started with them?

[silverfrog]

we used Hopscotch (in London) for an SI OT. he did some absolutely fab work with dd1 - really calmed down a lot of her anxieties, and we saw huge improvements literally overnight, after the first session.

[porridgelover]

This is the professional support group for therapists who are trained. And here are the professional links.

I wouldnt have thought that it was that difficult to find one- but as therapists tend to do SI training after a few years of practice, you wont find any many Basic Grades who have it. Therefore, an SI trained therapist is usually older, more Senior and therefore more expensive to employ (cynical moi?).

Does your local hospital have an OT dept with a Paed specialist?

[TaggieCampbellBlack]

I know nothing of OTs but have worn the shit parent crown many times. ((hug)).

[babiki]

Dev I could scan all the things she sent us and send via email? It is quite detailed advice, so could be helpful. Just message me your email and I will do it tonight.

[saintlyjimjams]

Ime though good sensory trained OT's seem rare as hen's teeth! Ds1 has seen on but she was american. When he was little I spent a long time searching for one and just couldn't find a uk based one (ended up going to bibic instead). This was ten years ago. Is there somewhere parents can search for one porridge lover?

[porridgelover]

Hazey.... I am going to disagree somewhat with others saying that the OT has no role in advising re separation anxiety.
An OT who has Sensory Integration training would be able to assess and treat if your son has sensory issues.
If that is an issue for him it would make him 'clingy' as the world is overwhelming and too demanding for him without Mum to regulate it.
It's common to have this in a child with such low tone.
A good sensory trained OT may help him to separate better.

However, it doesnt sound as if your OT was looking at that possibility at all.

[dev9aug]

Babiki DS1 does that eating with his front teeth and we know it's food aversion, he had severe reflux as a baby and just nt interested in food at all. We are on the waiting list to see the feeding salt. Is there any way you can show us what the salt advised you re chewing food properly? Like a leaflet, online link etc..

[babiki]

Hazey don't be too hard on yourself, it takes time and practice to stand up to 'profesionalls', what a cow your OT is :( there are lots of useless ones, our OT is supposed to visit ds in a preschool, will see if she is any good, so far none of her suggestions were useful. I wanted to tell you about the feeding Salt - she looked quite ok actually and after my complaint will take over from notmal Salt who was, once again totally useless. She checked how he eats and apparently he only uses his front teeth to chew and doesn't use his tongue properly to move the food around, I never noticed that. Said it's provably food aversion and gave quite a few suggestions how to proceed - not to change the foos he eats already, slowly change just shape of food first, and showed us how to move food in his mouth to get the tongue moving, also gave us special tube to chew on. Will come home as well to watch us having dinner. Hope you feel better after your experience - and I would definetely complain.

[mymatemax]

what an arse, (the ot not you :)) she was totally overstepping the mark & really not her job.
How is a clinical session going to be of any value when the child is so distressed. This is apart from the fact its just bllody mean of her.

Dont beat yourself though Hazey I think over the years we've all been in appnt where we have followed the lead of the proffesional even when we didnt agree.

[saintlyjimjams]

Definitely it needs following up. I don't think an OT should even be advising professionally on separation anxiety and clinginess - that should be a HV - or for more serious cases a clinical psychologist, not an OT.

[hazeyjane]

Thankyou all for your replies. Ds is 26 months, he has gdd, has severe speech delay (completely non verbal), gross hypotonia and recurrent chest problems. His geneticist thinks he has a genetic condition, and at the moment we are waiting to hear back from Holland where he is being tested for Kleefstra syndrome.

I was in such a stupid state afterwards that I couldn't talk to dh about it, because I knew I would burst into tears in front of the girls.

We had a chat about it, and he was annoyed with himself for not being there (he normally comes to appointments, but looked after the girls instead). Apart from agreeing that this is not the way to encourage independence from a boy who suffers high levels of anxiety, his other point is that we are not even sure what we are supposed to be getting from the occupational therapist. I spoke to her when ds was 10 months about a specialist bath seat, she told me she would contact disabled services, he is 2 now and today she asked me about bathing, and I told her that he has never felt happy in the bath, and so now tends to stand holding onto the side, whilst I sponge him down, or he stands holding his sisters hand under the shower. She said that there was no point in pursuing disabled services, as he no longer has a need for a seat (he started sitting when he was 12 months, and was fairly stable by 15months, but i think by that time had developed a bit of an aversion). After some asking around, i know that disabled services will come and do a home check to see if there are any things that will help ds, so i asked if she could arrange one. That is it, her only other input has been to discuss ds's speration anxiety and clinginess (something that we are working on at his sn nursery and with his portage worker).

Ds's physio has been great on the whole, she tries to do home visits, and has arranged for a session, where dh and I will play with ds with her watching through a two way mirror, and for the session to be videoed. I got the impression she felt uncomfortable today, and she could see i was upset by the whole thing.

It is stupid, because I don't 'do' controlled crying, and neither does dh in fact I know that if dh had been in there, he would have just scooped ds up and said, 'what the hell are we trying to achieve here'. A few times when dd1 was little and her sleep was appalling, we tried controlled crying - we lasted about 20 minutes, of going in and out, with our little bloody timer, before realising that a) we didn't have it in us to leave her to cry, and b) all that was happening was that she was getting more and more hysterical.

I am so annoyed with myself, for being cowed by the OT,and for not following what is for me the most basic instinct, which is to protect him. I fell apart when it was apparent that ds had 'issues', I felt as though someone had taken off my protective shell, but over the last 20 months, I have felt myself toughen up, and have realised that we have to fight for our dcs, and be their advocates, and fight our way through an unwieldy system to try and get the best for them, and my shell has gradually come back. But something about this woman, and the fact that they just sprang this on me without discussing it first, was like someone kicking me behind my knees and watching me fall over.

I am going to write some stuff down, and call or email the physio, and basically say that I don't agree with the approach this woman is taking, ask what her role in ds's team of support is supposed to be, and whether this can be provided in a different way.

Thankyou all for listen to me ramble on, and for not telling me I am a shit mum. I would be lost without this place

[TheLightPassenger]

hazey - is your ds even 3 yet? as that sentence/concept is far too convoluted for a young child with language delay -if you stop crying I will pick you up. Their behaviour/logic really is nonsensical!