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SN children

Here are some suggested organisations that offer expert advice on special needs.

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Original poster

I'm a dad, so I hope you don't mind if I'm here. I have 3 kids, the oldest has cp.

33 replies

davidsatthebar · 10/02/2008 03:22

I'm a single dad and I have 3 daughters. The oldest, she's 16, has cp. Does anyone else have kids with cp on here?

I'm always with my daughter and she has a very active life. I don't see her cp as a disability. I take all of my kids sailing, we've been to Nepal, we've done a lot of things.

My wife left a few years ago because she couldn't handle our daughters cp. We argued over everything and I couldn't stand it. I see my daughter for who she is, my wife only saw her disability. She didn't approve of the way I handled our daughter, she thought she was too fragile to do "normal" things.

My other kids are 12 and 8. They're super and very mature and kind for their age.

OP posts:

yurt1 · 10/02/2008 09:06

Welcome David. What did you do in Nepal? There are places like the Caudwell trust in the UK that run activity holidays for people with disabilities (and their families).

Hassled · 10/02/2008 09:26

Welcome! If you search messages (next to Find Discussions) and put Cerebral Palsy or CP in the thread title box you will see that there has been lots of lots of chat. Also plenty of Dads on MN.

staryeyed · 10/02/2008 10:00

Hello Davidsatthebar. This is a great forum for support, any questions you might have and just to rant if you have had a bad day.

2shoes · 10/02/2008 10:01

hello
My dd is 12 and has cp. and I so know what you mean about seeing the child?young person and not the disability.
there are quite a few of us on here with dc's with cp so you should get loads of support.
How is your dd affected?

needmorecoffee · 10/02/2008 10:09

I have a 4yo with severe CP. She can't sit/roll/use her hands or speak.

eidsvold · 10/02/2008 11:17

Some similarities with you. I too have three daughters. My eldest 5 and a half has down syndrome and a heart defect. Sounds like a fab family you have there. We try to do the same things for all of them - seeing that we are a family and do family things.

Welcome to mn and the sn section in particular.

magsi · 10/02/2008 15:40

Hello there!

My son is 6 and has CP (Hemiplegia down the one side). You sound like your children and yourself lead a very full and active life, and quite rightly so.

I am sure you will find this forum a great place to feel comfortable amongst people who are in the same 'boat' (sorry!) as yourself.

theheadgirl · 10/02/2008 17:15

Welcome David. There are quite a few dads on MN, but I can only think of degeorgea (?sp) who posts on the SN section. I'm a lone parent too with 3 children, my youngest has Downs and ASD.
I am impressed with your activities. I felt quite adventurous that I'd booked us all a holiday in Scotland - I see I'll have to rethink that.....

needmorecoffee · 10/02/2008 18:16

How affected is your daughter? I can't imagine even managing to get travel insurance for mine (she has epielpsy and is visually imapired as well as can't move or speak)
Does she us a wheelchair? If so, how did it go in nepal?

Original poster

davidsatthebar · 11/02/2008 06:23

She's in a wheelchair, but we still managed to go one some tours, ride in a hot air balloon (the highlight of the trip), and do a very short trekking adventure. We had an extra sherpa come on the outing to help us.

2shoes, is your daughter a fan of music? I'm convinced that I would have the next pop sensation on my hands if she could talk. She'd be doing duets with Jesse McCartney or Justin Timberlake.

OP posts:

yurt1 · 11/02/2008 08:02

Did you need to take a special "off road" wheelchair - how did it cope with the paths? How did you find the food? I think I'd be worried about getting food for a severely disabled child abroad. I think I'd worry about tummy upsets and other bugs for a child with CP as well. Is your dd toilet trained (and were there disabled toilets?) or did you have to find places to change nappies?

needmorecoffee · 11/02/2008 08:12

hats off to you. I've been to Nepal and even thr main roads in Katmandu aren't wheelchair friendly, being all potholed.
My dd's epilepsy means I'm reluctant to take her out of the country. I'd hate to have to explain what a status seizure was in another language. Its hard enough here when she's rushed to A&E and the doctors are all 12 and don't listen!
Can your daughter speak David?

2shoes · 11/02/2008 08:53

oh yes she loved her music. influenced by her big bro. she loves blink 182(probally because they are half naked in most of thir photos and videos) and MCR.

Mitchell81 · 11/02/2008 09:41

Welcome to Mumsnet

My DD is also in a wheelchair, but not CP. We have taken her to Turkey, South Africa, Portugal. Yes travelling with a disabled child is slightly more difficult, but definetley you can do it.

yurt1 · 11/02/2008 16:10

Depends a bit on the disability. There are children at ds1's school with very severe CP who would not be able to travel to far flung places. I presume there are some problems with taking oxygen on to a plane, and with tube feeding in some places.

lou33 · 11/02/2008 16:13

i have 4 kids, my youngest is 7 in a few days and has spastic diplegia cp, he uses a wheelchair

welcome to mn

2shoes · 11/02/2008 16:58

wonder if they would allow dd's pharaldahyde on a plane.......oh and her wheelchair.....and her seating system.......

lou33 · 11/02/2008 17:03

when i was still with my h, we took all four kids to thailand

the wheelchair was taken to the plane, then stowed , and was ready for us when we landed

we also got whizzed through all the security checks and had someone with us for any transfers

mm22bys · 11/02/2008 17:41

We're just back from Australia, and came back through Dubai, and had to get a bus to our plane, then we had to walk up the stairs. It did occur to me to wonder how people in wheelchairs would have coped (yes I thought it pretty poor!).

Hats off to you for all the travel you have done. DS2 is still only little so we could take him anywhere we wanted, long may that continue!

We found out on the plane that he really likes Johnny Cash!

2shoes · 11/02/2008 19:03

lou33 how do they sit if they can't sit unaided?

lou33 · 11/02/2008 20:13

ds2 was portable enough to carry to the seat, then we used the specially moulded cushion he has on his wheelchair to sit him on

he is seven now and is still portable enough if i had to carry him on a plane, but i thnk they have wheelchairs for the narrow aisles

the rest i am not sure about wrt special seating systems, but i am pretty sure they must be able to accommodate disabled people

hk78 · 12/02/2008 00:03

hello davidsatthebar

my dd1 has cp , right side hemiplegia, she's nine.

welcome

Original poster

davidsatthebar · 12/02/2008 08:33

The food is Nepal was great. I had askedfor some reccommendations prior to the trip. This turned out to be very useful for us. I also packed some things to take along as well. My youngest daughter was, and still is quite a fussy eater, so I found the food I had packed to be quite handy.

Needmorecoffee, did you go to Nepal in a regular wheelchair? How did you do it?? We took an all terrain wheelchair.

2shoes, yes, it's more difficult to travel, especially with 2 younger children in tow. I have found that some airines are better than others when it comes to dealing with passengers in wheelchairs. They have to accomodate sn passengers though, whether they wish to or not.

Also, as long as you have a doctor's note, you can take meds with you on the plane.

OP posts:

Original poster

davidsatthebar · 12/02/2008 08:38

They usually give us the bulkhead seats so we have more room.

OP posts:

needmorecoffee · 12/02/2008 08:50

I've seen those all-terrain chairs but the one I saw had someone who could sit unaided. Do they do inserts for those with no sitting orhead control? We walk a lot but dd's wheelchair isn't up to a lot of things.
dd's epilepsy is so severe I can't see us ever leaving the country or even getting travel insurance. Plus any dysentry type bug (and everyone gets vomming and diarhea in Nepal!) would kill her as she's so underweight.
Flying must be a pain. The aisle wheelchairs they supply to get you on the plane aren't suportive enough for someone like dd. They assume all wheelchair users can sit. Very annoying. And of course, once you're on, no going to the toilet!!
I do despiar of dd every seeing the world but I'm guessing by the time she's 16 then flying will be super expensive as oil prices go through the roof. I'd also need a full time carer to come with me and social services don't fork out for that

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