A month after dx - it has really hit me.

[Jenkeywoo]

DD (14 months) got diagnosed with CP (right hemiplegia) a month ago. We left hospital with promises of physio and OT - which hasn't happened as they are waiting for a new member of staff to start at the end of June. We were promised a full written report - which is still waiting to be 'typed-up'. We were told her CP is mild - aren't we lucky? How many people have told me we are lucky this last month? I don't feel lucky.

No-one has told me how to manage DD's behaviour - she cries all the time unless in my arms (and often in my arms too) - I cannot even go to the toilet. I have to carry her everywhere around the house and I now have shooting pains and numbness in my arm when I pick her up. I don't think anyone understands how hard it is to carry around all day a little one who should be crawling or walking.

I'm sure half of her behaviour is utter frustration. She doesn't want to be stuck in one place, she wants to be running around the garden with her sister (2.9), she wants to be making a den under the kitchen table, sliding down slides, climbing through the veggie patch. It breaks my heart. We were at the swing park today and there was a little boy who looked the same age as my DD - he was toddling around and got onto a little round-a-bout with my older DD- they were both squealing with delight. I want that, I want my two girls to be able to run around together. We have been told she will walk but have no idea when - at the moment she is nowhere near even crawling. I can't see any end in sight and the prospect of another how many months of carrying her everywhere makes me feel quite desperate. I feel upset the the paeditrician goes on about how it's all very mild and we are told about the physical bits but no-one mentioned how you are actually meant to cope with a tiny little angry girlie who doesn't know why her body doesn't work properly.

We got our diagnosis on the 1st may and I feel like we were so god damn innocent before, maybe blissfully unaware who knows? but now I just feel so so sad.

[emkana]

Oh sweetheart, I know so very much what you mean, we are still waiting for a dx but I also look at ds and think "I want him to be able to do this"

The only thing I can say to you is - sometimes babies at this age are clingy and miserable anyway, I know my dd2 was, and she is perfectly healthy - so things might get better - hang in there, I know it is hard, the uncertainty is terrible isn't it, I started a thread the other day about wanting a crystal ball...

[morocco]

I felt the same when my ds got his initial diagnosis (he has a kidney condition), it was a kind of grieving, sad, angry feeling. I was so angry with the world and so upset for my ds. it is especially hard when other people go on about all the 'positives' when you just don't see it that way. I still feel like that sometimes but less often than before. I don't have much advice but can offer empathy. trying not to think too far ahead and take things one day at a time has helped me, although i admit not always managing it.
as someone else told me once, 'I used to have a handle on the world, but then it fell off'

[jenk1]

jenkeywoo
our daughter has left sided hemiplegia, we too have been told its mild, its not mild when we have to carry her anywhere or she cant walk in the morning because her legs are stiff or when she.s crying with constipation.
as time goes on you will become accustomed to what helps your dd and what doesnt, we,ve found at night the best thing is to let her wind down with colouring and a nice warm bath and a massage.
we too are still carrying her around a lot and i think partly it is due to behavioural issues but then so what? how do we know how they feel?
our dd didnt walk until she was over 2 and i feared the worst but she has come on really well, she walks with a limp but she is now climbing on frames,riding (not using peddles) a bike and with the other kids, she just gets very tired.
its totally normal to feel how you do, i think i spent the first 2 years of her life in constant tears, there is a very good website called hemihelp.org.uk they will give you lots of tips.
please feel free to ask any questions.
HTH
jen
xx

[Jenkeywoo]

Hi, thanks for the support - Riven, I'll email you for those links thank you, it is so hard waiting around for physio as if I was told what to do I would do it! We sometimes come up to bed and her arm of her affected side is stuck up in the air rigid and is really cold. poor little girly.

Jenk1 - thanks also, I know what you mean about how it doesn't seem mild when you have to carry to your little girl around. One of my friends said that because it's 'mild' we won't have to even tell DD she has hemiplegia! somehow I think she'll notice don't you? I think most of my family feel that mild means unoticeable which I don't think is quite the case. I'm pleased that your little girl is walking and able to play with other children now but sorry to hear that she is still suffering with constipation. My dd has been constipated continually since weaning at 6 months , no doctor will take it seriously and basically all I've been told is to give her lots to drink and a suppository every 3 days - do you think constipation could be related to the hemiplegia?

I'd best get going now as I can hear dd has woken up from her nap - her ears must be burning!

Thanks again.

[mymatemax]

Hi jenkewoo
Our ds has mild CP, we are better off than many but it still hurts when your lo is suffering.
Ds2 is 4.5 & has always suffered from constipation, most of the time we manage to keep him going every other day with plenty of fluids & lactulose but every so often he needs a little extra to help. Don't let the dr's fob you off our ds is really miserable when he is "bunged up".
We also find warm baths help with both muscle & constipation so he is bathed night & morning, our water bill is huge but it helps!
I certainly remember feeling sadness after dx which took a while to fade, the frustration of waiting for appnts just adds to the upset.
Take care Max

[Arabica]

Hi, just read your moving post and wanted to send some support. I don't have experience of CP (am awaiting a DX for DD, but don't think they're considering CP) but can relate to the feelings of frustration about waiting for promised physio services that don't ever seem to materialise, and also seeing what other children can do compared to yours.
Look after yourself.

[heartinthecountry]

Hi jenkeywoo - totally understandable that you are feeling sad and struggling at the moment. It is all still very new to you and of course you are going to grieve a little for the girl you thought you would have.

If your dd's CP is mild then just hold on to the fact that she probably will be able to play and run around with her sister - it might just take a bit longer.

On a practical level, do you have a hippy chick seat? I used one to carry dd1 around for ages, probably until she was about 3. I'd still get tired but at least it keeps your back straight and takes the weight away from your arms a bit.

If you don't do it already I'd also suggest massage for the constipation. Its hard to describe massage strokes but I imagine most books on baby massage would have a few ideas for constipation.

Also when dd1 was a baby, before we got a physio I used to go to baby yoga classes with her. It turned out when we finally did get a physio that many of the exercises were similar. Your dd is probably a bit old for baby yoga classes but you can get dvds which would give you an idea for exercises.

[heartinthecountry]

Sorry, just re-read that message and the bit about how she will play with her sister is probably a bit annoying - doesn't really help you now does it? And I know that's what you need when you have a child with special needs. Things that make your life easier now.

[Jenkeywoo]

Thanks heartinthecountry -- I do have a hipseat somewhere but haven't used it yet with dd2 as she hasn't been sitting well enough until recently, I'll dig it out and give it a go.

Dh and I had a good chat about it all and I had a good cry, thank you to all those who have mentioned the word 'grief' - it seems such a horrible thing to say but i think it's a kind of grief for what could have been and an acceptance of what is. I fell apart last night when I saw a picture of dd1 at this age running round in her wellies splashing in puddles when dd2 spends most of her time in the pushchair. I had a good cry for the first time since the diagnosis and I think it really helped. I've been trying to be a bit more pro-active today and have been moving and stretching her little arm and leg today, it's funny that at some times of the day it is really floppy and easy to move and other times totally stiff and I can't even uncurl those little fingers. onwards and upwards I guess.

[2mum]

jenkeywoo, im sorry to hear about your daughter i wish i could give you some advice that would help you. i dont have any experience of cp my 2 sons have sn my ds2 more affected he has low autism and gdd. He was diagnosed well over a year ago and im only getting back to normal whatever normal is these past few months. Last year i would say i was on the verge of a breakdown. Like you it didnt hit me until after the diagnosis. I took my ds1s diagnosis not too bad but my ds2s diagnosis hit me for six and i was getting really depressed i couldnt imagine what the future would hold and it felt like my world was crashing down. All i can say is i hope you have a good network of family support and friends around you. And although there is help out there, ive learned for myself you have to ask for it. Ive asked for my ds2 to be referred about a number of things which he wouldnt get if i hadnt asked. Hope you are feeling a wee bit better from when you posted original message. take care 2mum xx

[heartinthecountry]

I think it is quite well recognised that you go through a kind of grieving process when you learn your child is disabled or has special needs. It is really hard because often it is mixed with a lot of guilt. I mean, why should you be grieving for a child who is still alive? still amazing and special in their own way? I know I often felt/feel so disloyal to dd1 for feeling sad about her. But we do have to allow ourselves to grieve. It doesn't mean we love our child any less. It just means we need a little (or a long) time to let go of some of our dreams and adjust.

Its great that you cried. It's tough. You are allowed to.