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16 replies

time4me · 04/09/2006 16:17

Hi,I`m the mum of a young man who is almost 18.
He is severely brain damaged as the result of a brain haemorrhage as a baby.
He has extreme and challenging behaviour and needs constant 24hour care.
We do get respite of 8 nights a month and we also get direct payments of 4 hours every sunday which is when the flashpoints occur.
He needs 2 Carers all the time.He is adorable but I do feel very isolated.I work full-time,I am the main bread winner.I am cheerful,and can see the funny side in most things! Thank you Riever! Love the name!

OP posts:
redbull · 04/09/2006 16:27

hi their time4me and welcome to mumsnet

my ds is 5 and has ASD he need a lot of attention and is always having meltdowns, im sure some one will be along in a bit to welcome you as well and their are others with simular situation to you.
ive allways found it very friendly here and alot of advice good luck

Davros · 04/09/2006 16:45

Hi time4me, saw you on a couple of other threads, now you have your very own! I have an 11 year old son with "classic" autism, he is non-verbal and has challenging behaviour. I also have a 3.5 year old daughter who seems more than OK
I recently joined something called the Challenging Behaviour Network which you might find useful, google it or let me know if you can't find it and I'll dig out the web address.
Welcome to MN, I hope you find it as supportive, useful and funny as I have! It is good to have somewhere to just be yourself and, being on the web, in your own time. Do you have any other children? How is your son doing with (presumably) transfer from education to social care?

mrs2shoes · 04/09/2006 17:35

hiya and welcome.
I am sure you will get loads of help and support on here.
My dd is 11 and has cp

MrsFio · 04/09/2006 17:46

Hello time4me

I have a daughter, who is 7 with an undiagnosed global development delay who attends a SLD/PMLD special school and son who is 5 and fine-ish

welcome to our group

reiver · 04/09/2006 22:19

Hello time4me ........I was hoping it was you when I saw the title. Welcome aboard!

My DD is 7 & has a syndrome which has greatly affected her growth and development. She attends a special school.

Sounds as if you have your hands full. You say your son is almost 18 - does that mean he is still in education or a day care setting?

time4me · 06/09/2006 22:47

Hello everyone!
I`m thrilled to bits to get some replies and you all sound so cheerful and positive which is just what I need!
My son is still going to a SLD/Profound Disabilities school.He loves it there.
What a relief to see him off again after the long holidays.
I was working with children like my son as I full-time special needs Teacher,before I had him .Some of the children I worked with were so similar.
How I wish I could have climbed back through the years and given the mums and dads the sort of support they needed,but I had no idea until I had my own child . Now I look back and admire their courage and resilience.Thanks very much for the challenging behaviour website,I will look it up right now ! time4me xx

OP posts:
coppertop · 10/09/2006 13:00

Welcome to the SN board, time4me.

I have 2 boys with autism (6yrs and 3yrs)and a 5mth-old girl.

MrsFio · 10/09/2006 20:44

how strange that you taught before you had your son, do you often think that?

theheadgirl · 10/09/2006 21:05

Hi everyone, this is a great site. I have 3 girls, dd3 has downs and then when she was 4 I discovered she's also autistic. She doesn't care about the labels herself tho, and is a great girl! she's at a fantatisc special school in sheffield and loves to go off on the bus each day. I love reading all your posts, I known I'm not alone out there

coppertop · 10/09/2006 21:09

Welcome to mumsnet, theheadgirl.

onlyjoking9329 · 10/09/2006 21:28

welcome, i have three children twin girls 12 and 1 son 9 they all have autism, before i had kids i used to work with children & adults with additional needs & always said i loved the job but i could not live it 24/7.

time4me · 10/09/2006 21:33

Hello friends
Great to hear that I am not alone.
Yes I do frequently think it is strange that I taught special needs children just like my son and then I had my son.The only thing that annoys me a bit is that people think I do this job because I had my son.
I was doing it years before my son.
Did anyone watch Eastenders.I never watch it and although it was a bit dramatic I was just like Honey,shock and disbelief when I was told my son would be severely disabled,probably profoundly.
You never forget it.I am busy organising his 18th party and there is much to celebrate.Thanks for replying,really appreciate it Love time4me

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theheadgirl · 11/09/2006 18:06

Yes, time4me, haven't watched Eastenders for years, and although the Honey character was annoying in the extreme during labour (not a time to judge someone, Iknow!) I think they're handling the issue quite well. I particularly remember the feeling of waking up, feeling OK, and then remembering Dd3 has downs and I hadn't dreamt it all. Seems a long time ago now, I'm glad your boy is having an 18th celebration. I hope my girl does too, I know her 6th birthday in a few weeks will be the usual joyous bunfight. Best wishes to you all xx

aaronsmummy · 11/09/2006 18:11

Hiya, Welcome. I have 3 children ds1 nt, ds2 asd and dd nt. Ds2 is extremely challenging but very lovely as are my other 2. Not been on MN long myself but have had loads of great info and support.

time4me · 12/09/2006 17:13

Hello theheadgirl and aaronsmummy
theheadgirl that is exactly how I was,waking up and wishing with all my heart that it had just been a dream.I still get upset and I was bitter for 10 years,now I just feel very sad.
We think the world of him and can enjoy and celebrate how different he is,but when he is been very difficult I am in despair and angry with fate,and wish it hadn`t have happened.
We are about to purchase a wheelchair,one with the brakes on the handle as he runs off and lies down at any opportunity.The one he has at the moment he has learnt to annoy us by yanking on the brake.I hope it means we can take him away for a few days without the stress we had on holiday.The other thing that worked for us was a dvd on the back of the car seat,so he could watch endless repeats of a football final.
By time we got to Cornwall ( 9 hour drive ) my head was buzzing and I felt I could have repeated every sound verbatum! LOL Time4me xxxxxx

OP posts:
theheadgirl · 13/09/2006 13:57

time4me, your holidays sound like such hard work, and I can relate to it, to an extent, although my girl whilst being severely mentally handicapped, is very mobile. We often go on selfcatering holidays, and I have to enter the property first and think, "now what can she trash?!" i always end up clearing the decks at other people's houses, cos I couldn't bear the guilt when she breaks their ming vase or whatever LOL.
I was talking with a friend who has a DD with Rhetts, and we were saying people with NT kids have no idea what planning we have to do, just to experience things that they enjoy everyday. That sounds bitter, I'm not really, but its the truth.

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