Here some suggested organisations that offer expert advice on SN.
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come and kick me up the arse, feel like a shit mum after an awful physio appointment..(38 Posts)
..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.
Oh no, thats awful.
I dont know your situation but I am shocked that the OT/PT would allow him to be upset for that long.
Can they not treat 'through' you until he is happy to go to them?
You are not a shit mum.....you care enough to bring him for the help he needs and you listened to the advice you were given. Be fair to yourself.
Well... I will raise you in the shit mums stakes then. I have never let DS1 cry in his life if I can help it, one of us always sleeps with him and I have given up work right now so I can spend more time with him at home. He is a very anxious child and we are doing ABA at home which is hard work for him and I want him to feel secure.
Oh btw, I am not the mum, I am his dad. if we were to compare, ours have got two of us wrapped around his fingers, so I am definitely winning in the shit mum/dads stakes.
Look, if it was so easy for our kids, do they think they would be anxious in the first place!! Yes being tough on them might help in some situations but when they are already anxious being tough on them is surely going to be counter productive.
Chin up, from what I have read of you, you are doing very well for your DS.
it should be the physio and ot that are feeling bad, not you. What on earth were they playing at and what have they achieved? DD3 wouldn't do things with her therapists when she was little (loves them all now btw and has a completely new team since changing school with no problem) and it was never an issue, they just used to get me to do things, assessing her was never a problem.
Firstly I have to say I really don't know what OT's are supposed to do? Are they parenting experts? Psychologists?
I have 5 children and have never left any of them to cry. 2 of mine have sn dd3 has life threatening epilepsy and med induced anxiety, ds1 has a severe language disorder and associated problems, and hyper mobile joints.
What was leaving him on the floor crying supposed to teach him? If he is more vulnerable isn't it sensible tha he is more attached?
Last term I allowed 2 adults to discuss my son in a "meeting" in front of him. Both are caring professionals. They went through each of his "friends" discussing weather it was a "real" friendship or pity/mothering. I sat their nodding and commenting. I will never forgive myself. Ds is nearly ok now, 2 months later.
The point is we all do things we regret, both professional and parent.
If something is tearing at your soul it is probably wrong.
You are the parent, you must judge weather controlled crying is the right thing for your son, and you must decide how and when it is aporopriate.
I am going to sarcasticaly clap my hands and say well done to the OT for probably adding more stress to the situation than necessary and the end result will be that your lovely DS wont look at them twice ever again without you. [anger]
Cant see what the problem is with you there anyhow.
There is no way in hell that I would leave my child cry for 10 minutes and surely this shoud be practiced at home maybe in shorter bursts to gain confidence ie. in the back garden, the bedroom etc etc
They put you in an awful spot because they made you feel you are doing it all wrong. Its the other way round they did it wrong xx
completely agree with coffee and others. I hope they feel ashamed of being so epically wrong. I would like to send the pair of them to a country where they don't speak or read the language AT ALL, and see how long it takes them to feel withdrawn/anxious etc.
What arses!!! Very upset for your lovely boy and for you Hazey.
You should complain about this.
Hazey. don't feel bad please, it was the professionals who were in the wrong. Your instinct is to reassure and support DS. Your instincts are RIGHT!!! How many times are we told to listen to our instincts by the professionals. What sense does it make to make a child who feels insecure more insecure by leaving him in a distressing situation. Do what YOU feel is right, let him sleep with your if he needs to. Children, even NT ones, are all different and no one size fits all. Have faith in your convictions and if a similar situation arises say firmly, this isn't right for my child, so I will do what I feel is right!
Hazey, what an awful experience - I would have felt like you did.
Yes, our DCc may be difficult to assess at times, but surely that is a given. It's not unreasonable to expect that two professionals with different areas of expertise might between them be able to work with a child who is difficult to assess, for whatever reason - they must deal with it every day after all.
Doesn't look like anyone is going to kick you up the arse, Hazey. You should have tried AIBU!
God that's awful. What's his dx? I would complain tbh. Do you have to see them again or can you have some sane ones?
(And I can see the point of encouraging independence by not doing everything but you don't try and do it when a child is completely distressed ffs, what were they thinking of).
You shouldn't be feeling bad at all.
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!
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
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.
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.
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.
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..
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.
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?
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.
I know nothing of OTs but have worn the shit parent crown many times. ((hug)).
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?
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.
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