How do I deal with this?

[lou33]

Ds2 aged 2 1/2 has cp as you probably all know. I was lying on the bed with him tonight as he was settling down to sleep. It was all calm, and quiet. Suddenly from out of nowhere he looks up at me, and in a really heartbreakingly sad little voice says "I can't walk". I asked him to repeat what he said because I couldn't really believe my ears, so he did, and then burst into floods of tears. My heart is breaking for him, how on earth do I deal with this?

Hello everyone. Thanks again for all your lovely messages. It's been going through my head all day and night obviously. He's quite emotional today, i don't know if it is connected to his statement last night, but he is usually a very happy boy. Maybe he is coming down with something, his sisters have tonsilitis and his brother is recovering from a bout of croup combined with bronchitis. He has mentioned it again this morning, and I was very positive about everything, telling him his exercises will help make his legs stronger, that he's really good at talking, we all love him just as he is etc. He just got cross and said "stop talking to me" !

I do appreciate all your support. I feel like he has lost a little bit of his childhood, now he is aware of his problems. Something we will have to readjust to I suppose.

Lou it must of been heartbreaking for you.
I dont have any advice only know how you feel and like fio2 says I think we will all face things like this one day.

Phew, Lou, that's such a hard one. In some ways, I think it's important not to deny a child's feelings about things by being too positive in the first response, but to acknowledge their sadness, let them know it's valid, and then find something positive to move on to. My DS can walk, but has mobility issues and a leg that is very noticeably different from his little friends'. I am making sure he has lots of role models - I have friends and colleagues with a variety of physical and sensory disabilities, and I make sure that he sees them in positive roles.
Good luck and big hugs.

Lou, as one who couldn't walk until I was 8, I suggest you listen carefully to your other kids, or the kids who play with your little boy. Has anyone teased or goaded him about it (kids, even or especially siblings, can be very cruel when they're not thinking).

He's presumambly still in a pushchair? If he had a wheelchair it would help, most able-bodied kids are really envious of those, but you probably have to wait a bit for that.

Bring him to see me if you're not too far away (Notts). I'm wheelchair bound ATM, and walk with a crappy gait whern I do (assuming right now I eventually will walk again). We'll work out fun stuff together (you can chase round with my 4 year-old)

BTW, I had to hold back my tears reading your post too.

That's a really lovely offer Easy, but we are in Surrey. Thanks so much though. As far as I have ever heard, my other kids have been nothing but loving around him. They are always playing and helping him. He's only 2 1/2 so he doesn't really have friends who come round to play,plus we don't really know anyone locally.The playgroup he attends is special needs, and he is the only talker in his class. I can only assume that he has been listening to us and the physio, and put it all together.

He has a maclaren major pushchair, which is a sn one. It looks a lot bigger than normal buggies, and with the seating insert he has, it pretty much looks like a wheelchair really.

He just seems so young to have such comprehension of his situation.

I tried several times yesterday to compose a response on this thread, but nothing seemed remotely adequate. Your ds has been in my thoughts a lot since then. Life is just SO unfair sometimes. He's clearly bright as a button, but how tough for your both. You did brilliantly not breaking down in front of him; I would imagine that's really important, so that he feels he can tell you in the future when he's upset.
Thinking of you both.xx

Ditto tamum. I've been thinking about this a lot today and can't think of anything useful to say. You're both in my thoughts though.

lou, have been thinking about your heartbreaking post today - lots of hugs to you and ds2, he is obviously such a lovely little chap and as everyone says, he really is very good at talking although that probably doesn't make it any easier.

lou33, just wanted to add to the lovely messages and good advice here already. Can't say I have personal experience but he must be a lovely, sensitive little boy, regardless of his disability. I'm sure you will do a good job of working through it with him.

Lou- i'm so so sorry that you/he are having to deal with this. Thinking of you bother but no other words of advice i'm afraid. Much love xx

Lou - just got back from Ibiza and saw your post - bit my tounge hard to stop from crying. Heartbreaking. What can I say? Maybe just be as honest as you can with him. Will he walk eventually?? Sorry I just don't know. If there is v little chance of him walking can you get videos etc of people who have acheived wonderful things while being wheelchair bound or something like that? Show him that whilst he may not have the use of his legs like the majority of people it shouldn't stop him from being able to do the things he wants. That not being able to walk makes him stronger in lots of different ways and actually a very special little boy. So sorry Lou that must have been a knife in the chest moment and I fel for you big time - email me if you want - lots of love to you.

Sorry I haven't been back and replied sooner, but thank you again everyone for cheering me up.
I've finally got dd's 1 and 2 back to school after tonsilitis, and ds2 back after croup and bronchitis, and now ds2 has croup! And we are living in hell, due to the living room floor being sanded, so everything from there is in the rest of the house. Can hardly find the pc!

Ds hasn't mentioned it really since, but he has been v clingy and emotional. Probably due to the croup than anything else though. I've decided not to bring it up again unless he does. I'm not ignoring it, but don't want his inability to walk to be the only thing I can focus on. There is so much more to him than that.

Your messages have been really lovely to read, thank you all so much. Thomcat, will be mailing you for the goss on Ibiza!

Hi Lou33, I'm so sorry your beautiful, beautiful little boy is feeling sad. I think you are wonderful with him, and agree with Blu that when/if he talks about this again it is important to 'allow' him his sadness and let him know it's OK to feel sad rather than rush to cheer him up. The actress Tilda Swinton was interviewed recently and said that her mother always looked cheerful when sending her to boarding school, and only was sad in private, wheras Tilda would have preferred her to also be sad! That's not to say he shouldn't be reassured about what a fantastic special boy he is all the time, of course. He's obviously terribly bright and sensitive and that's wonderful. I hope you are all better soon.

Lou33 - Just read this. Sending my love to your ds. I hope you're ok too.