Newly diagnosed 9 month old with CP. Im Worried about going back to work and how we will manage

phoenixpd

Hi my son has recently been diagnosed with cerebral palsy  (spastic quadraplegia). It's been a tough couple of weeks since the diagnosis. I have lots of thoughts buzzing around in my head but my main worry at the moment is how I'm going to manage going back to work full time at the end of October and juggling all his physio and all his appointments. He is going to a childminder 3 days a week and staying with family for 2 days. I'm also worried that because I have been at home with him constantly and constantly done his physio through play with him that once someone else starts to look after him they are not going to have the time to do it with him like I do and that he is going to fall behind. I've worked so hard with him in the last few months and I don't want that to slip because he has made some good progress. Does anyone have any experiences to share about going back to work and having a child with CP? 
Thanks 

Hippo_Rugby

Hi, unfortunately our experience are your fears. The time taken up with appointments, physio and the rest of the party pack of features that come with CP have meant my wife was not able to return to work.  The thing with CP is the more you put in the more you get out and whilst younger getting it right is critical. 

Though your own mental health it key! and if you can continue to work, even if it is on a part-time basis do so.

Make sure you are claiming the DLA, Carer's Allowance and working tax credits. Don't be proud to ask for help because working with your little one is a full time job! Every little bit helps. You can also get help from the SS with a carer for a few hours a week that will help.

It is hard, but no matter how willing or good people are, you are the one that can give the most to your son.

abstractLucas

I don't have any advice about going back to work but just wanted to say hi - I know exactly what you mean about everything buzzing around your head, and making any kinds of choices and decisions at the moment must feel so hard.  My son doesn't have CP but I know the physio and other stuff I did with him over those first few years made a huge difference. The other thing (and I genuinely wish I didn't have to tell you this) is that there will be many appointments each year that you will have to be at (for your own peace of mind, so you know exactly, first hand, what is said).
Is there any way you could extend your maternity leave for just a few weeks to give yourself a bit of time to get your head around what's going on?  
Got to go - school run time!
Lucas

phoenixpd

Thankyou so much for your response. Even though my fears probably are going to be the reality, it's good to know it's not just me over thinking things!

I think if I could work part time that would be a good balance but intend to make use of whatever help I can also. I love doing his physio with him and it will be really difficult to give that up.  I just know how far he has come in the last month and I don't want him to go backwards. 

I've just started to fill in the DLA form as well

I could have extended it but I most of all couldn't afford to but I had also notified work I was going to return before his diagnosis so I'm stuck at work for 3 months so I don't have to pay my maternity pay back. I'm taking holiday at the moment so I will have done a month before I go back 

abstractLucas

Depending on your employer there are also things like unpaid parental leave and emergency carers leave to look into, as well as flexible working, just to throw that into the mix!
DLA forms are notoriously horrible and upsetting to fill in, which will be even more difficult so soon after diagnosis - there are certain things you 'have' to say, as otherwise they make assumptions...
(Sorry, off on a bit of a tangent here!)
...but for example on a question which asks 'how far can your child walk' you need to cover other related movements, even if you have already mentioned them elsewhere. So, you might (dependant on your child's issues) state "X cannot walk. He cannot run. He cannot climb. He cannot crawl. He cannot shuffle on his bottom. He is not independantly mobile in any way."
THAT is why it's so hard/upsetting to do the forms! Lots of help and support around here if you need it though - do ask if you'd like more of my worldly wisdom (she says looking pious) - seriously, I've done so many I know a lot of the traps/things to mention/ways to survive filling them in.
Back on track!
I completely understand the money pressures, but remember how much experience you have in working that physio into everyday stuff - so all the time you're around him you'll still be doing lots without even realising it. You mention family are having him two days a week - could you show them some of the easy bits and pieces so they can build some of it in for while they have him?  And don't underestimate all the positive things that come from you being at work (and I don't just mean the money!) - the stimulation you get from interacting with others; the confidence he will get from regularly being around other adults and kids; the close relationship he will have the chance to develop with extended family; the sensory stimulation he will get from spending time in different environments - you will both benefit from this.
Lucas

danielorr41

Hope you don't mind me asking antenna namely was anything picked up on scans

danielorr41

Sorry my last post didn't make sense due to predictive text. What I meant to say is was anything picked up antenatally on scans. Just me and my partner have been told our baby has some damage on right side of brain which will probably mean our baby has cerebal palsey and epilepsy 

phoenixpd

danielorr41 said:

Sorry my last post didn't make sense due to predictive text. What I meant to say is was anything picked up antenatally on scans. Just me and my partner have been told our baby has some damage on right side of brain which will probably mean our baby has cerebal palsey and epilepsy 

Hi, no nothing was picked up before he was born. My lb was 10 weeks premature and it seems the CP was caused by lack of oxygen due to underdeveloped lungs. They did routine brain ultrasounds on him in the nicu and an MRI to confirm he had PVL (periventricular leukomalacia) which is damage, what they call 'cysts' to the white matter in the brain. It does sound similar to what you have described but as far as I am aware (correct me if I'm wrong) there are many different things that can cause CP so it may not be PVL. Hope this helps a little

Alex

Hi @phoenixpd, How is everything going? We recently had a new user on the site who has a young boy with CP/PVL who I'm sure would love to chat with you: https://community.scope.org.uk/discussion/31816/hi-my-name-is-tei

NatzG2021

Hey my son has just been diagnosed with spastic quadriplegic cerebral palsy as well would love to chat some time, how is your son getting on? 

Natalie xx