Active discussions

Please or to access all these features

Talk
SN children

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

Original poster

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

27 replies

Jo5677 · 25/08/2009 15:00

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

OP posts:
lou031205 · 25/08/2009 15:24

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 · 25/08/2009 15:33

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 · 25/08/2009 15:34

whoops my ds is 4.3 now

Jimmychasesducks · 25/08/2009 15:38

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

ilovepeppapig · 25/08/2009 15:46

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

Original poster
Jo5677 · 25/08/2009 15:54

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

OP posts:
Mitchell81 · 25/08/2009 16:06

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.

Original poster
Jo5677 · 25/08/2009 16:24

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

OP posts:
Mitchell81 · 25/08/2009 16:46

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

TheDMshouldbeRivened · 25/08/2009 16:58

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

Original poster
Jo5677 · 25/08/2009 16:59

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.

OP posts:
Original poster
Jo5677 · 25/08/2009 17:05

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.

OP posts:
TheDMshouldbeRivened · 25/08/2009 17:07

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.

Original poster
Jo5677 · 25/08/2009 17:21

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.

OP posts:
Mitchell81 · 25/08/2009 17:28

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.

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.

Original poster
Jo5677 · 25/08/2009 17:30

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.

OP posts:
Mitchell81 · 25/08/2009 17:32

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 · 25/08/2009 17:33

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

Original poster
Jo5677 · 25/08/2009 17:35

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

OP posts:
5inthebed · 25/08/2009 18:33

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 · 25/08/2009 18:54

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 · 25/08/2009 23:13

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 · 25/08/2009 23:14

Sorry ages are 16,14,12 and 8.

Original poster
Jo5677 · 26/08/2009 09:20
OP posts:
Original poster
Jo5677 · 26/08/2009 09:39

5inthebed,Marne and devientenigma....thanks all for saying hi.

5inthebed,i hope it all goes well for your son starting mainstream with full 1:1. Thats what my son has and for him and us it works very well thankfully. From day one i've took the approach of making good friends of the teachers and T.A's helping him. I've found this has really helped as the people involved with him at school really seem to be willing to go the extra mile to support him. It hasn't been without its moments however but then i think thats the same for most kids at school. Best of luck in September to him and you though,i know how anxious i was on my sons fisrt day.

Marne,its nice to hear from you,so thanks for stopping by,2 sons on the spectrum must be quite a challenge some days !

devientenigma,thankyou for saying hi,6 kids,you must be exhausted at the end of some days,especially given some of their conditions. We're considering if we might have a last baby or not. 4 of my children are from a previous realtionship and my fifth child is the only child between me and my new husband. He doesn't have any other children,we're waiting until our youngest reaches 2 and then we're going to try and decide if we go for it or not. My ex has no involvement or contact with my first 4 so my husband has really taken on being a Dad to them so he kind of feels like he has 5 children of his own rather than 1 already bless him.
It's great to see you on this forum though as you must have a lot of experience and knowledge from having had so many children with diverse needs.
Take care,Jo.

OP posts: