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5 children,1 is quadraplegic with brain damamge and one with autism

(28 Posts)
Jo5677 Tue 25-Aug-09 15:00:47

Hi,im new on here and just thought i'd say a quick hello,it's been good to find this forum.
I have 5 children altogether. My eldest daughter is 11 and quadraplegic with extensive global brain damage. I also have a son who is 7 and on the autistic spectrum,he has an expressive and receptive speech disorder and mild dsypraxia.He does however attend mainstream school.
I don't work as my eldest daughter doesn't attend school and i'm her full time carer.
I have recently started to recieve direct payments that have allowed me to do some voluntary work for Home Start which i really enjoyed.
Anyway after almost 12 years of our family life being constantly punctuated with hospital visits,O.T's,Portage,Speech Therapist,Phsyio's,social services etc etc i thought it might be nice to finally hear of other parents who are going through and been through similar.
It's good to finally feel like i'm not the odd one out somewhere.
Take care all, Jo x

lou031205 Tue 25-Aug-09 15:24:46

Wecome to SN, Jo. I have 3 DDs, 3.8, 2 & 4 months. DD1 has a brain folding disorder, which results in GDD and epilepsy. There are lots of people on here who will have similar experiences to you, enjoy.

bubblagirl Tue 25-Aug-09 15:33:59

welcome to mn i have 1 ds who is 2.3 due to start school in sept he has HFA and possible dyspraxia never been confirmed although has been mentioned due to how his speech forms

hope you get as much support from here as i have done

bubblagirl Tue 25-Aug-09 15:34:14

whoops my ds is 4.3 now

Jimmychasesducks Tue 25-Aug-09 15:38:16

hello and welcome to the sn board.
I have a dd who is 14 and has cp. hope you find this place helpful

ilovepeppapig Tue 25-Aug-09 15:46:13

welcome - i have a dd (7)who has cf, epilepsy and dyspraxia. I have found this board a god send you get so much support from people

Jo5677 Tue 25-Aug-09 15:54:14

Thankyou for all your replies,it's good of you all to take the time. It's also really good to hear from/about other parents that are going through and have been through so much x

Mitchell81 Tue 25-Aug-09 16:06:46

Welcome to the SN board. I have 3 children, DD and 2 DS(8, 3 and 1). DD has a unknown genetic syndrome, she is unable to walk and talk.

Jo5677 Tue 25-Aug-09 16:24:02

Thanks Mitchell81,i'd just done a profile page so i had a quick look at yours when i saw your reply. Just wanted to say you have a lovely family,the pics are gorgeous.
Take care x

Mitchell81 Tue 25-Aug-09 16:46:25

Thanks, Can I ask how long you have homeschooled DD?

TheDMshouldbeRivened Tue 25-Aug-09 16:58:21

welcome. I have 4 kids, one (the youngest is quadriplegic with severe brain damage) and the oldest boy has ASD.
Makes life interesting doesn't it!
My dd is 5 so I'm behind you on the path of OT's SLT's direct payments etc etc

Jo5677 Tue 25-Aug-09 16:59:14

Yes ofcourse. We did try sending her to local 'special schools' if you like but unfortunately she hated them there. She'd get so anxious she'd hold her breath until she turned almost blue (she has a heart condition so this wasn't good),she'd pull chunks of her hair out etc too so it sent us down the route of home education.
I have been home educating her since she was 4 (so 7 years)and it's been brilliant. Her education needs aren't the same as most childrens obviously so i tailor her education to suit her needs. Our day involves quite a bit of physio and O.T and i incorporate lifeskills into our day to help her become as independant as she can be. She is a whizz on the p.c and loves whatever i set her to do on it. It has required a big commitment from me but i don't regret it and i'm extremely proud every time my daughter achieves something i was told there was no hope of her achieving.

Jo5677 Tue 25-Aug-09 17:05:08

Re : TheDMshouldbeRivened,

Thanks for saying hi,i'm just signing of for the day now but good to hear from you,will be good to catch up sometime (i don't know many people at all with more than 3 children,let alone 2 with disabilities).
Speak soon,Jo.

TheDMshouldbeRivened Tue 25-Aug-09 17:07:25

congrats on home edding. I home edded my older 3 but sent dd to mainstream because her needs are so great. She needs a communication device as she has no speech or hand function at all. (she uses a headswitch at school) and I just couldn't see how to HE her.

Jo5677 Tue 25-Aug-09 17:21:11

I don't think i could have managed home educating 3 but admire that you did ! I also think its good that you went with what you felt was best for your dd and that it was to send her to school. Often when i say i home ed people think i'm anti school but thats not the case at all. I just went with what i felt was best for her as an individual, as all our children are different and what suits one may not another. I never judge people when they decide to either home ed their child,or send them to mainstream or special needs school as i think as parents we all know our own kids best,and what will work best for us.
I've got to dash for now but will defiantely be popping back into Mumsnet soon.

Mitchell81 Tue 25-Aug-09 17:28:26

Thanks for answering. I have been thinking about what is best for DD for secondary. She still has 4 more years at primary school. She really enjoys MS school but am petrified at the thought of sending her to MS secondary school. (Special needs school are 35 miles away) So we either move or she is Home educated. It is nice to meet someone who has done this. smile

DD is happy when in the sensory room, staff are playing with her, computers, playing music (All fun things- not much educational needs though) The school is great for her and all the other children come say hello and DD smiles back at them.But don't know what the future will hold.

Jo5677 Tue 25-Aug-09 17:30:38

p.s,i meant to say re home educating a physically disabled child at home,well it has meant we've had an assortment of equipment at home and still have. I've always contacted O.t's and the LEA when i've needed things though and on the whole they've been pretty good at helping and supplying things. It has added to the task of Home educating in a pretty major way though.

Mitchell81 Tue 25-Aug-09 17:32:35

Please don't think I think anything about you Home schooling. I also agree certain things are good for certain children. Someone would say that my DD should be at a SN school, but for now she is at the best place for her.

TheDMshouldbeRivened Tue 25-Aug-09 17:33:32

our LEA refuse to supply a communication device to a HE child. They reckon you've opted out. Given those things are £10,000 plus its not an option for us sad
And dd is so demanding (despite her blindeness and severe CP she has a normal intellect) I need the break grin

Jo5677 Tue 25-Aug-09 17:35:07

Mitchell81,

I'm just of to feed my hungry hoards lol but will be back on probably tomorrow sometime and will be good to catch up and chat some more properly.

Hope you have a nice evening,speak soon x

5inthebed Tue 25-Aug-09 18:33:31

Welcome to the SN board.

I have three boys aged 6, 4 and 9 months. My 4 year old has autism and dyspraxia. he is due to start MS school next month with full 1:1 (gulp).

Marne Tue 25-Aug-09 18:54:36

Hi,welcome to SN board, i have 2 dd's dd1 (5.5) has Aspergers and dd2 (3.5) has ASD and speech delay.

devientenigma Tue 25-Aug-09 23:13:39

Hi, we have 6 kids, 2 of the boys are gdd in special school, 1 of the girls is ADHD,ADD and ODD in mainstream. Our youngest is down syndrome and is refered to as challenging and complex for short. Hope you find the board useful.

devientenigma Tue 25-Aug-09 23:14:15

Sorry ages are 16,14,12 and 8.

Jo5677 Wed 26-Aug-09 09:20:16

<'our LEA refuse to supply a communication device to a HE child. They reckon you've opted out. Given those things are £10,000 plus its not an option for us
And dd is so demanding (despite her blindeness and severe CP she has a normal intellect) I need the break'

The kind of help LEA's offer and experiences people have of them really vary widely dont they.
What always disgusts me though is the price of disability and communication aids. I've spend ages looking for the right bit of equipment for my daughter sometimes only to find the only way i could afford it was either to take out a loan or apply for funding to charities etc. Obviously the local authority supplies equipment for free but its often the most basic stuff and choice is very limited.
Re needing a break lol i can totally identify with that. I love my daughter to bits but her not going to school has meant i don't get a lot of time of and i've had to sacrife being able to work etc. Thankfully my Mum is brilliant and helps out a lot when my husband is at work and she often gives us a break at weekends. I am very lucky in that respect.

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