Headstrong 5-year old

[TurtleCavalryIsSeriousShit]

I went to the disability and SN boards, but there is really no traffic there and I'm at my wits end.

In January of this year I was in a car accident along with my 5-year old. It was a horrific head-on collision which kept us in hospital for 6 months.

We are both in wheelchairs. Difference is, I will be able to walk again at some point. Probably towards the end of this year. My son had a spinal cord injury and is paralyzed from the waist down. Chance of walking again is 1%.

We have had excellent care and rehabilitation. Lovely psychologists and play therapists. Everything went well and we were discharged to go home permanently (previously we had been home on weekend visits).The problem is that I cannot get DS to do anything he is meant to do, like drink his medicine or enough water, or do his exercises.

He was always a headstrong child who did what he wanted, when he wanted. Now however, we cannot skip certain routines (e.g. not drinking enough water, as paraplegics struggle with uterine infections and exercises to stop his leg muscles from shortening).

He just simply refuses. If you force medicine down him he vomits it back up. I can sometimes get him to do things if I make it a competition. I'll tell him I'll beat him to drinking my medication but that only works about once a week.

He is a lively, happy, very intelligent little boy. When he's in his wheelchair, he is never still and gives me heart attacks during the day with his antics. He has his moments where he would say it is unfair that I can feel my legs and he can't. But he also gets over it pretty quickly, and seems to understand that he will not walk again.

He has to catheterize every 3 hours and even that is an effort. He knows he has to, he understands he has to, but he will just shout 'no' and lash out. I completely understand that he is lashing out because he has no control any more (and he was always in control), but how do we get past this?

Between DH and me we've gone for different approaches. DH does the stern 'you will do this now' thing where I take a more round about route of cajoling. Both sometimes work, but mostly it doesn't.

I've thought of a reward chart, but he's not particularly fazed by toys. It feels mean to diminish his screen time when that's basically all he can do at the moment.

We were never big on routine when the kids were small, but I'm beginning to see how it would've come in handy now. We have to do everything right for DS now, while he is young so that he doesn't have more problems later in life and I'm finding it so hard.

Anyone has any tricks up their sleeve to get him to do things? It's exhausting to think of new ways 10 times a day.

I didn't want to read and run. My word you have been through the mill as a family. You sound fabulous in how you have coped. I have no advice really on how to deal with him but you sound like you are doing great.

I don't know if this would work with him, but I have started a slightly different approach with my kids in the last few months (since I left the fmaily home and became a single parent, Ex was very military in his approach to discipline) is to try not to say No all the time. I give them reasons, and leave it up to them to decide.

For example we go to the beach for the afternoon. They need a shower. One of them kicks off, so i explain to them it is up to them, but why they should wash the sand and salt off their skin. Then they make the decision they will have a shower.

Or at tea time, they won't eat all their food. That is fine, but if they ask for more food later, they get what I originally put down in front of them.

It causes a lot less arguments, and they are learning more about consequences and choices. It gives them ownership.

They are a bit older than your child (6 and 9), but it might be worth a try with some of the less important battles. Other than that, if it carries on maybe talk to your health visitor again or the specialists at the hospital.

And routine, for sure. Does he understand what happens to him if he doesn't take his medicine?

My god, you poor things; what a nightmare you've been through, and what an amazing, thoughtful mum you sound. Of course you still have your DS, who sounds wonderful just as he is, but I imagine this change in circumstances must be a huge loss for you as parents, and of course for him in many levels.

I don't have experience of anything like this, but I do have ample experience of a child of this age with a severe chronic illness that required a lot of horrid medical compliance enforced by me (hideous meds, enemas etc). My DC is now older and much more well, but interestingly the lasting psychological damage has been from the parenting relationship having to change to one which is medicalised and requires enforcement... DC is in therapy now working through this, which is helping a lot, but it has left a lot of anger and anxiety about complying with other normal stuff like homework.

Sorry; that's too much about me. The points that spring to mind that might help:

• Try and get as much of the medical "enforcement" as possible done by HCPs. If there's stuff that has to be done at home, get an HCP to speak to your DS about how it has to be done and why...let them lay out a bad guy approach, which you guys can then refer to without being the primary source of it.
• Read "How to talk so kids listen"; it's not aimed particularly at kids with medical issues, but should give ideas for how to negotiate things with him.
• Get him ongoing psych support, if he doesn't already have it (I'm not clear from your OP whether it's ongoing). The fallout from this is so massive physically, but it's also immense psychologically. If he's got expert support externally, he's got somewhere to put the angry feelings, making it easier for him to comply at home rather than acting it out.
• Remember (I'm sure you do!) that five year olds are capable of huge and v complex emotions, but however articulate they may seem, they're probably not fully "verbal" in terms of being able to vocalise feelings. There's probably a huge amount going on that he may need to symbolise/play through/act out rather than verbalising.

I really understand the huge tension as a parent of knowing you have to keep them well, but needing to be the parent they can trust, who's separate from the flipping millions of HCPs they've been poked and prodded by. Unmumsnetty hugs to you xx

Ps I xposted with Pudding. I think the choices technique works well...so "shall we do catheter now, or do you want to watch your programme first and do it after that?" The prob I found was that medical stuff is pretty non negotiable, so a v cross kid won't necessarily be won over just with choices. But definitely as much of that as poss!

Oh thank you so much for answering. And your ideas sound great. I will do more of the choice thing. I understand how hard this is for him. We are looking at on going psychological help. We are not in the UK so it's a little different.

His of therapist did say that there will be days that he won't go along with the program. I'm just so worried about doing anything wrong that has long lasting consequences..

Thank you again x

What a lot for your family to deal with, I'm sorry.
My experience is with childhood cancer and like someone else mentioned it was stressed over and over again how parents need to try to remain parents and not doctors and nurses. But the advice on how to actually do that was a bit vague.
A local cancer charity offered support for a while sending in a befriender twice a day who helped do medicines instead of parents. That was great but I guess catheterization is a bit different to encouraging a 10 yr old to swallow some medicine so that probably wouldn't work the same for you. The health visitor came in when she can too. Is anything like that remotely possible for you? Even a couple of times a week?

And maybe similar, my cousin was diagnosed with diabetes aged 11. She went through an awful spell of being in denial about it, sneaking sweets, refusing to test her blood. She was really ill a few times before the reality began to sink in and she accepted what she had to do. Is your son maybe in a similar place right now? And he's only 6, it's so hard. How can he possibly u understand the implications of not taking his medicines?

Another thing just occurred to me: if you can find any support groups for families with kids in a similar situation, it might really help your DS to get to know the other kids...even if it's on a photos and pen pal basis. This really helped my DC to feel less "different" from all other kids. And a support group, even online, might provide you with a lot of support and suggestions.

I have nothing helpful to add but wanted to say that I'm glad to see you've had some suggestions and support here. I wondered if the amazing staff at Stoke Mandeville might be able to help you with more strategies , even though you're abroad?

Thank you. I think after the euphoria of going home wore off, I got into a bit of a depression slump.

You've all helped me think of positive things again. Support groups is next on my list. I'm so sorry that other people also know so much sadness and heartbreak around sick children. My heart goes out to all of you x

Agree with offering him control where you can (the, would you like to do this now or after your tv show, kind of choice) but also distraction and reward are your friends. Could you get him to choose a game on your phone which he is allowed to play while the catheter change happens? Can you put together a reward chart for something he really wants if he manages to drink enough water? Sometimes, when our kids have medical needs we think that they need to accept and get on with it and we don't want to "bribe" them to do things they will need to do for the rest of their life. But on the other hand most people would use a reward chart to help a five year old brush their teeth properly etc.

Do you have ongoing psychological support?

It is very difficult to maintain the parent rather than nurse role when your child has interventions multiple times a day. Could you try to apply a six to one rule? Six interactions about something unrelated to his medical care for every one related to it?

I'm sorry that you are having to go through this.

I'm sorry, reading again I see you have considered a reward chart. Just to say it doesn't have to be about toys. Can you let your son decide what a reward that might motivate him is?

OP, I wonder if you'd get some more replies if you made the title a bit more specific and asked for the thread to be moved to Child Health.