Post op issues finding it tough

[80sbabe]

Hi this is the first time I've posted in Special Needs and I'm just wondering if anyone has any advice or tips for us? I apologise in advance if this is very long as I try and explain what we are going through.

I have a SN son with purely physical disabilities, he had multi-level surgery earlier this year to improve the flexibility and movement in his lower limbs.
This involved operations to his hips, knees, calves and ankles and looks to have gone really well from a surgical viewpoint.

We have been told right from the start that the recovery and eventual success will be a long haul possibly taking years, it's not an instant fix and we have to keep working on physio and movement for a long time to come. We understand that and he's not been pushed or forced into doing too much too soon.

However pretty much straight away once his wounds were healed and he was pain free, he could feel the difference and in certain areas, especially his ankles and feet it was noticeable - which is great.
Initially he was keen, enthusiastic to recover and responded really well to all his post op exercises. Within a short time he was finding everyday tasks such as going to the toilet, getting up and downstairs, getting dressed and in and out of bed much easier to do.
He has always needed help and supervision with these sort of things but it was clear that moving around was not as difficult or as awkward as it had been immediately pre-op.
We have encouraged him and praised him throughout and tried our hardest to give him confidence to move on a bit more the next time - it all seemed to be going well.
However over the last couple of weeks he has totally lost all confidence and not only is this heartbreaking, it's also really frustrating because we know he can do these things - he's been managing and improving very well.

He is now having a total meltdown at the thought of going upstairs even with help, he cries at the suggestion of standing in his frame to brush his teeth or wash himself, says he "just can't" get onto his bath board and as for actually getting in his walker and taking the few steps he was managing a few weeks ago - well it's just a complete refusal.

DH (his SD) and I are at the end of our tether, we are trying to calmly encourage him and talk to him logically about why he suddenly cannot do these things any longer. We are struggling though to keep being calm and rational about it day in and day out when we have witnessed him doing so well before.
For example it's taking him over an hour to get up and down stairs with us having to encourage and talk through every small movement. Three weeks ago this was taking about 10 minutes with us just needing to be there in case he lost his footing or grip.

I know all about reaching plateaus and not improving for a while and we had expected this may happen, but this is not a case of not improving, it's just going backwards.
His physio and OT have no advice and both have told us to just keep going and trying with him and hope he comes out of the current stage very soon.

So I don't drip feed we do have an idea where this started - he had a contact visit with XH at the start of the Easter holidays and from what DS has said it didn't go well. XH has never come to terms with having a SN child and from what we've heard got quite short tempered and said some unpleasant things about DH and I about how we made DS's condition worse.
None of this is true, we've never harmed him and have have always done everything possible to make his life as comfortable and easy as we can.
We are wondering though if this has caused the setback but we don't know how to reverse the situation.
We are waiting for an appointment with DS's consultant which should be next month, but are worried that with each passing day it's all getting worse again and we so want these operations to have a beneficial effect.

Does anyone have any experience of a child in this situation who has stalled with recovery or hit a brick wall like we have and if so how did you resolve it ?

Thank you if anyone has any advice or suggestions at all.

hi 80sbabe, welcome to the sn board and sorry your family are going through a tough time. Although your ds' primary needs are physical they and coping with the recent changes are clearly impacting on his mental health as well. Plus getting mixed messages from your xh may well be undermining the encouragement you are trying to give.

We have a somewhat similar situation with a dd with severe eczema who is all too quick to give up on all her treatment if she hits a problem eg a flare up can undo overnight an improvement which has taken weeks to bring about. We have asked gp to refer her to CAMHS - child and adolescent mental health services.

It may help your ds if he can talk to a counsellor about the probably conflicting feelings he is experiencing - being told different things by mum and dad, feeling frustrated that improvements post op are not continuing in a predictable fashion etc. If he is old enough to access it, he may find a course of cognitive behavioural therapy useful. He would do this with you present to support.

link here to description of cbt: www.rcpsych.ac.uk/mentalhealthinformation/therapies/cognitivebehaviouraltherapy.aspx

Hope you mange to get some help.

80'sbabe
I'm not sure how old your ds is or what his understanding & expectations were, could it be that although he has made huge improvements HE was expecting more & is feeling down.
He does sound a little depressed which can be quite common after a hospital stay particularly surgery.

Hopefully it will pass in time with you doing exactly what you're doing but defiantly worth disussing with his consultant, if you think the appnt is too long to wait can you give his secretary a call & discuss. IME they are very helpful & ds2's consultant is always happy to talk things through on the phone.

Thank you for you responses, my son is 12 and although he has physical impairments is very articulate and bright. He has been lucky to have a great medical team who have involved him in every discussion and decision so he fully understands the recovery time lines and expectations.
I don't think he has expected too much too soon, but I do think his contact visit with XH has brought him down considerably. Probably my fault there because I know what his father can be like and in hindsight I should have held back on that a bit longer.
He has a very stable home life and routine with me and his SD so I think your advice about keeping on with our encouragement and staying calm is probably the best way forward. Having said that, it is hard though because we have three other children and it's all such a balancing act. DS needs our support and to feel secure but all of them have needs.

Your advice about CAHMs could be something to consider if we still continue in this vein but his consultant appointment isn't too far off. In the meantime I think we'll continue with an approach of lots of love, patience and support. He's also going back to school this week so maybe being back with his friends will be of help.

Thanks again - much appreciated.

80sbabe. My DD is also 12 and has had 26 procedures so far. Two more are due this summer. She always gets very low after a painful procedure, and this generally lasts for at least a month each time. The last time I sought advice from the clinical psychologist attached to Plastic Surgery. It proved to be very helpful to prepare her for the surgery, and for me to handle the aftermath. It does get harder and harder each time I'm afraid. You just have to keep your sanity and your patience. He will get there.