Hi, my youngest son has CP and I need advice on being a better father and supporting him better

subg

My son is 3 years old and as he's grown physically and mentally, I've struggled more and more with giving him the support he needs. He's very motivated to try to do stuff, but his body (mostly balance and coordination) doesn't let him and lots of frustration builds up.

For example, he loves tidying things, carrying objects from one place to another, but I need to support him physically all the time. I need to hold him up at the hips or the waist while simultaneously ensuring he doesn't bang his head against the drawers or cupboard doors - and it's very hard for me to physically do as his lack of balance means he can tip over at any time and sometimes he just loses his muscle tension and can bang his head against any object within range or just become a dead-weight that I have to hold. The constant worry that he will hurt himself coupled with the obvious frustration when he wants to do things, but I can't help him, is a big emotional challenge for me too.

I'm wondering if this sounds familiar to anyone on here and whether there are ways to overcome this?

WestHam06

Hi @subg, 
                Welcome to the community and thank you for joining us. How are you? How is your son? When a child is living with a condition which affects their day to day life, it is only nature for them to become frustrated and to show this, however, it also natural for parents and carers to have a mixture of feelings about this too. It is a journey and you are most likely to find that it impacts at different points and it is difficult to know when these points may be. From what you describe, it sounds as though you are doing a great job in supporting your son in being able to try and do the things he would like to do. As with any child, the best way to support a child with any disability is to show them love, care and understanding as these are core foundations to build security. I am going to tag our Special Information Officer for Cerebral Palsy @Richard_Scope who may be able to offer you so more advice. In terms of support for your son, please can I ask is he receiving input from an Occupational Therapist or Physiotherapist? They may be able to recommend an aid such as a frame which may help your son with his balance and give him some more independence and mean he will need a little less of your support. Please note, this is just opinion and it is important to speak to professionals who will be able to support your son accordingly to his needs. 
I have Cerebral Palsy and it can be emotionally tough at times for both myself and my family, but there is no reason why your son should not be able to achieve the things he would like too, with the right support in place. I hope this helps and please do ask if you have any further questions. We are a friendly and supportive community, thank you. 

forgoodnesssake

Oh that sounds so familiar!  My son is now 23 with athetoid CP and he was just like that.  He could/can weight bear so that helped but we needed to support his trunk to be able to do exactly the things you say.  Like the above poster do you have any input from a physio or OT?  A walking frame helped us a bit (one that was quite bodily supportive rather than just a kaye walker that they have to hold onto) 

We also had to enable him to do things we didn't really want him to do but that we knew his older brother had done at similar age...like get all the books off the bookcase!

Sounds odd maybe but we just knew that he needed those experiences; but we did have to say no sometimes cos it's just not sustainable on backs!

We had a very hard time with a dreadful social worker trying to say we were "overstimulating" him....but it wasn;t us driving it it was him!  In the end he went to nursery at quite a young age and also got a powered wheelchair at 3 which helped a bit.

So, no quick fix but just to say you are not alone..

subg

Hi @WestHam06 and @forgoodnesssake - thanks for the kind messages.

To answer the questions:

- how am I? I'm exhausted, thanks.

- how's my son? He's doing ok, thanks. We have a summer break from kindergarten, so a bit of a gap in the usual routine, but all things considered, ok.

- is he receiving input from an Occupational Therapist or Physiotherapist? He visited a physiotherapist twice a week for the last couple of years (in between illnesses and lock-downs). And that was ok for him. I often attended the session so could see how the physiotherapist did it and she told me about the bad habits to avoid. But it hasn't been enough to help me in the situations at home. He's just started a Peto kindergarten three months ago, so now the physio is happening on a daily basis, in a different form. He's really made a jump developmentally since starting there 3 months ago, but after the induction phase, I'm no longer there with him so don't get any tips on how to physically support him.

We have applied for a NF Walker for him, and the Peto kindergarten has lots of experience with them and will take care of getting him used to it. We tried one out for size for 5 minutes and he already took to it well. After he gets used to it, we may also use it at home, though I am a little wary of the rigamarole of getting safely strapped into these things. We have an Upsee Firefly which we rarely use for this reason. Moreover, since starting the kindergarten, my son is now able to use a standard Bobby Car (when he's in the mood ).

@forgoodnesssake - we have exactly the same experience as you with the books - and also with records! He adores his older brother and wants to do exactly the same kind of things (including all the mischief). Your comment made me smile!

The process of trying to describe in writing exactly why the situations are so difficult for me has been very useful - so thanks already! Let me describe another common situation: my son will be on the bed, where it's soft and safe, and will crawl/roll to the edge and want to launch himself off the edge, head-first. So I need to constantly be on guard for that and when he gets to the edge remind him to turn around and let his legs down first. Which he invariably does, but only if I'm there. Then I need to be able to catch him if/when he falls backwards once his feet are on the floor, as his sense of balance isn't working great. Depending on which corner of the bed he's aimed for, sometimes I can be just kneeling behind him, but sometimes I have to lie on the bed and stretch to reach behind him in case he falls. He'll then want to try to walk along the bed, holding on to the mattress, towards a corner, where there are lots of hard wooden corners. So I have to shuffle along behind him, at the same time as anticipating any hard objects within range if his legs give way or if he just falls. Often he'll fall backwards, knowing that I am there (which is a bad habit, I know, but otherwise he'd have a painful fall). And then after landing in my lap, or in my arms, try to get back up to holding the mattress by over-arching his back, pushing his head/shoulders against me and reaching forward (which I know is 100% wrong from a physiotherapy point of view, but here we are in this position and there is no elegant way to get out of it).

And since posting here I've come to a small realisation that I have guilty feelings when I am not letting him do all this - it's often easier for everyone involved if I put him in his support chair where he is safe and can play toys on the table, but I feel guilty for not maximising the time where he can practice his balance, build up his leg muscles and explore more spaces.

Whew, apologies for the mammoth post - I guess I'm not the first around here to ramble on having met such a friendly community!

forgoodnesssake

He sounds physically quite like my son was.

 How about just padding the floor area well with duvet, cushions etc and let him fall?  My son couldn't sit unaided on the floor til he was about 26 months but long before that he was climbing all over the couch etc and loved it, esp the falling! 

(and yes he has hurt himself a few times...)

I really know what you mean about the guilt when you have to say "enough is enough" though.  Sorry to say that doesn't really go away even now if I have to say "sorry I can't take you [to wherever]"  but he is pretty understanding about it but it doesn't help me when I feel that he is missing out on something purely because of his disability.

But in the end your back and physical fitness have to last you a long time so look after yourself as much as you can and don;t beat yourself up if sometimes you have to plonk him in his chair with some tots TV type video or whatever!

Cress

I remember when my son who has ld was small and still struggling with movement we got him one of those small trampolines with a handrail on and he was never off the thing and really improved with it.

His physiotherapist at the time said it was the best thing to have got him and she wished her other patients had them, but didn't like to say 'go buy a trampoline'

Very low to the ground and about a meter square.

chiarieds

Hi @subg - & welcome to the community. Thank you so much for joining us all, & I'm pleased you've had such helpful replies above. Coming at this from a different angle, as a physio student, who had decided I wanted to work with babies & children with CP after qualifying, I was thrown in at the deep end in being asked to help a Uni student that was a little older than I that had athetoid CP whilst I was still a student. I still remember his name, &, more importantly, him. He certainly taught me a lot.

I did get to work with young children that had CP. I think the important thing is to work out what helps each individual child. Please also remember that your son knows no different than to how he is (I realised this myself when I found out I had a genetic disorder), so how he is, is just his normal. As a parent it's a fine line as to what facilitates his functional abilities with your help, & what aids may give him some independence; perhaps often a bit of both.

Please don't ever feel guilty; you are doing the very best that you can, & your son is fortunate to have you as a Dad. As a parent, it's a learning curve for you both, whether your child has problems or not, & you need time out for yourself too.....all parents do. I'm sorry you're no longer involved in your son's physio; might you query this, in at least getting some updates? Oh, & perhaps get a trampoline! My best wishes, & please keep in touch.

subg

@forgoodnesssake Thanks for the message - really helps to hear that others have similar experiences. Thanks to the posts here and to an appointment with a new physio yesterday, I have some more tricks to try with my son e.g. trying to position myself in front of him, rather than behind him more often, and letting cushions etc do the backwards catching.

For the guilt part, maybe that's a subject for a separate thread - it's a significant part though and interesting to hear from you that it doesn't necessarily go away with time, so it would useful to know any strategies towards reducing that.

subg

@Cress Thanks, that's a really good idea. Do you mean something like this: https://www.amazon.com/Little-Tikes-Trampoline-Amazon-Exclusive/dp/B00AU0O7QI ? I think my son could manage that, with someone around to catch him if his grip slips from the bar.

subg

@chiarieds Thanks for the message.

chiarieds said:

Please also remember that your son knows no different than to how he is (I realised this myself when I found out I had a genetic disorder), so how he is, is just his normal. As a parent it's a fine line as to what facilitates his functional abilities with your help, & what aids may give him some independence; perhaps often a bit of both.

This is interesting - I always assumed he compares himself to his non-CP older brother, who's 2 years older. He certainly wants to do the typical toddler things and, now that you mention it, I guess he does have a very good grasp of his current limits and what is within his comfort zone and what is a bit of a challenge. A nice insight there.

I think the frustration (for both him and me) comes out mostly when he wants to do things that are currently impossible, like walking, as he wants to go from A to B very quickly to, for example, carry something from one place to another. It's definitely a fine line and I think I've gone too far over towards physically helping him (i.e. carrying him), rather than letting him do it himself, e.g. crawling, but under his own power. This might be due to his developmental curve over the last 3 years - at the start, the prognosis was completely unknown and there were no guarantees to his being able to do anything. So when he started showing some drive to do something, I always wanted to facilitate it as much as possible.

For example, he's always been pretty good with his hands and wants to pick up things from one place and put them somewhere else, and this was way before he could crawl or pull himself to stand leaning on the sofa edge. So, to give him the most opportunity with his hands I would hold him and carry him from place to place. And I guess I haven't adjusted for that over the last year as he has gained more strength in his legs and improved his balance. A fine line, indeed - and I need to take stock of both of our needs more often.

chiarieds said:

I'm sorry you're no longer involved in your son's physio; might you query this, in at least getting some updates?

Yes, I can definitely check in with the kindergarten staff, they are very open to this.

Cress

subg said:

@Cress Thanks, that's a really good idea. Do you mean something like this: https://www.amazon.com/Little-Tikes-Trampoline-Amazon-Exclusive/dp/B00AU0O7QI ? I think my son could manage that, with someone around to catch him if his grip slips from the bar.

Yes, that one looks great!

chiarieds

Thank you for your kind reply @subg -  & I'm very pleased indeed that you can discuss your son's physio at his kindergarten.

WestHam06

Hi @subg, 
                Please can I ask how are things? I hope everything is well. Thank you. 

subg

Hi @WestHam06, thanks for checking in on me. Things are getting better, thanks. I think the answers here were a useful piece in the puzzle. My son has also started with some basic sign language and has been able to learn new signs quickly and string two together and that has really helped reduce some of the frustration; it's much easier for me to understand what he wants. In addition, one of the physiotherapists has offered remote support where I can record videos of the situations I find difficult and she can take a look at them and make suggestions - though I haven't taken up that offer yet, the knowledge that the support is there is a big help.

Also our application for the NF Walker was approved and he will be able to start using that, at kindergarten first, next month, and that will also be a big step (excuse the pun) in his ability to be somewhat independent from me holding him up in order to move around.

So all in all, we've kinda met halfway - he's made some really good developmental progress, physically and in terms of communication, and the support that I've received has helped me avoid the bad habits I was getting into and also reduce some of the guilt towards physically supporting him. Still a lot of areas to improve, but feel like things are improving now.

WestHam06

Hi @subg, 
                 I'm pleased to hear that things have improved both for your son and for yourself. It sounds as though learning some sign language has been hugely beneficial in supporting your son in being able to express himself, which is really positive. I'm also really pleased that you are able to share situations that you find difficult with the physio, it's really important that you have that support if you feel you need it at any point. That's also great news about the NF Walker,  please do keep us up to date with this and as you say, it will really help with your son's independence. Please remember, you are doing a fantastic job and I hope things continue to improve. Please do reach out if you have any questions you feel you would like to ask, we are here to support you. Thank you.