Hi everyone.
I have 11 week old twin boys. One of which has spina bifida and hydrocephalus.
I’m finding juggling having twins, one having additional needs, catheterization, changing dressings, hearing loss app, physio and a. Multitude of other appointments quite a shock to the system.
We don’t know how my little boys condition will pan out in the future but he’s amazing and already defyed so many odds!
Look forward to speaking to some of you soon.
All the best
Kate
Kate,
Are you getting any help at all at the moment?
Hey,
We have a nurse come out once a week to check his stats and weigh him but that’s it really.
I feel like I’ve had to turn into a nurse myself over night and it’s so very daughting… I’m sure I will get used to it but it’s so much responsibility!
If all I had to do was look after the boys it would be OK… Its the million and one app that come along with his condition I find hard.
People have mentioned looking into certain benefits as I’m not claiming anything atm but don’t even know where to start!
Thanks so much for your reply.
Kate x
Hi I’m in a totally different situation to yours but I too find the appointments add to the burden significantly and one disabled man"s got to be easier than two new borns! Good luck. There’ll be plenty of more relevant advice along soon. There always is. Like you say becoming a nurse overnight. Remember very quickly you will become an “expert by experience” and indeed the world expert on your twins’ needs. Make sure your point of view is heard and don’t be daunted by highly qualified experts who seem to you to be wrong. If they’re any good you will be able to discuss things with them. If they won’t they may well be covering their own inadequacies so all the more reason to question them.
My circumstances are different to yours. Others will be along to welcome you, as I do.
Remember, a mothers instinct is very important, and usually right.
Hi Katie,
Congratulations on your two beautiful new arrivals. Double trouble!! You certainly have your hands full! One new born is exhausting, let alone two; and one of those having special needs.
Juggling appointments with the two of them, can’t be easy. Do you have any family members/friends helping you out?
Where we live, we have Home-start and the scheme has volunteers who can visit and offer practical/emotional support, accompany parents to appointments, allow you to take a break even for a soak in the bath etc
https://www.shinecharity.org.uk/ is an organisation that supports families affected by spina bifida and hydrocephalus.
Contact-a-family connect families of children with special needs, runs local events and is a good source of support and advice
Cerebra is also a source of advice https://www.cerebra.org.uk/
Melly1
Hi Kate
I’m the Mum of a one (now grown up ) healthy boy and the best advice I was given (even in that easier circumstance) is not to try to be Supermum. It is difficult and exhausting with one well baby let alone 2, so get used to to asking for, and accepting help, whenever and where ever you can.
It’s all too easy to fall into the trap that only you are responsible and can do it all. Even if you can, don’t let on 
and start spreading the knowledge and expertise. You will need to build a small team of trusted helpers as you will need breaks, maybe not now, but in the months and years to come
You haven’t mentioned their Dad, is he helping and learning or is he still in shock and coming to terms?
Kr
MrsA
Kate,
Apply for a Disability Living Allowance form on Monday. If you ring them and ask for a form, they will put the date you need to return it by on the front. As long as you get the form back by this date, payment will be backdated to the day you apply.
Also ring Social Services and ask for a Carers Assessment, which looks at the support you need. It will take a while for someone to come out, so just make the call asap.