For anbody interested, more thoughts by Julia Hollander

[emkana]

www.motherstory.co.uk/2008/03/

love is all you need. .

So fio, does the book display any of that emotion that seems to be lacking everywhere else?

Great post yurt. Her response to is has annoyed the hell out of me though.

PLus - what's going on with the reviews on Amazon for the book? They seem to be fron the same people (quite a few who're based in Pxford ).

What is she claiming she got legal aid for? And why would she be eligible ?

My God this woman is priceless

All that noble pontificating about caring for a profoundly disabled child, the round-the-clock nursing care, "our family was in freefall" etc...

she gave her up at 5 months old, didn't she? 5 months?

cyber - in the earlier newspaper articles she said that she started off pursuing a claim for med neg on behalf of immie (claim was for immie's disability being the result of a botched home birth). So would assume legal aid related to that. She ultimately dropped the claim as she was fed up of fighting.

Just want to say some good has come from JHs book.Your fantastic comments have given me strength,they really have.You sound strong,articulate,intelligent,not full of self pity.As I was so like JH and have dragged myself over the last 20 years with my ( often violent,nappy wearing,hyperative son)your comments have inspired me.Thank you THANK YOU.Yurt you are wonderful.BTW I worked full time,got bullied by a boss who wanted to squeeze me out,Ive kept going,love my job now.Despite the awful problems I am glad I kept my son.

oh did you post on here about your boss time4me. I remember if so. (problems taking time off to care for your child- & you were working somewhere that should have been disabled child friendly!) If that was you, glad you got it sorted (if it wasn't I'm still pleased you got it sorted!!)

Hi Yurt,yep that was me.But my worse problems was going back to a dreaded job when ds was tiny,I was so unhappy.A colleague had had a nt pfb at the same time and well,it seemed everyone was cooing at her cleverness and I was just ignored.I really wanted to stay at home with ds but dh was like beardy and (a) didnt want me to keep the baby (b) didnt want me to pack in the job. Yeah I know,such a beardy.
Anyway he quickly got to love his diagnosed severely brain damaged pfb,and has been a such a devoted dad.So its a pity that beardy didn`t get the chance,if they could have just hung on with some support.I hawked my poor baby round day nurseries and child minders and it was heartbreaking some of the comments I got.Even now it is extremely difficult if he is ill,I just have to be thick skinned.Anyway,thanks so much Yurt,you are an inspiration,and the others.Took 20 years to stop feeling so alone.Bless you.

The internet makes such a difference. I think I would have been totally isolated 20 years ago. Instead by the time ds1 was diagnosed I was already a fully fledged member of an online autism board.

I can't think what it must have been like for parents of kids with SN without internet.

Even in my job,it has made sooo much difference. Only 10 yearsago my resources were a jealously guarded stack of atricles/papers, all photocopied to death.

Used to literally cut and glue all symbols too.

But I do think that people are much more understanding about sn in general.I know we get negativity still,but integration has helped and more raising of awareness in the media.Also more high profile people coming out,iycwim.Another thing is that even tho my ds was severely brain damaged,there was no dla until your child was 7 from what I remember.Eventually my ds did go to a day nursery.The owner was horrible to me,and was rude to me in front of the parents,eg your son has bitten another child.Also she charged me for bank holidays when she didnt charge the other parents.I tackled her and she made a stupid excuse but i never got a refund.But that is the pity when you work (even now)as you are made to feel so grateful when they do offer to help.It was the same with the after school club,and she told me to take him away,that really hurt.Even his school transport wanted to collect him at 9:30 and drop him off at 3,as he was a problem on the bus.AND even now,his school is closed for INSET and I cannot find child care.The goverment needs to protect us parents who want to work from this situation,like some real legislation.
This is what frightens people like jh and partner,so they end up giving up their baby.
Incidently,my son is big,strong,extremely violent,doubly incontinent,and has no self help skills and appalling fits.Myself and daughter spend some of the time locked in the bathroom in the hols to escape from him.
In this respect I think a pmld child could be easier,or as one Carer put it to me,at least they stay in one place.
Sorry I have rambled,but the isolation is upsetting,which is why mumsnet has been so wonderful.I do so love the comments,you are intelligent and beautiful,I just feel like crying when I read the comments.Thanks so much.

The isolation is awful, I am so pleased that I stuck with my job (part time) & kept working, it has been my respite.
I am sure if I had been with ds2 with no break I would have knocked on social services door looking for help.
DS2 has seen off several childminders (there are no private nurseries nearby) but in the end we found an amazing, fantastic lady & working has allowed me time away from the sn world.

My boss is understanding, the comments that hurt most of all are from some colleagues who have said "I don't know how you can come to work & leave your little boy" Funny they never said it with DS1.

It is the future, the unknown, that scares me.
How do you find childcare for an adult? You are spot on time4me, the government does need to do more to protect parents who need/want to work.

time4me - you story sounds similar to the one written by Gabriel's mum in "Growing Up Severely Autistic - They call me Gabriel'. He also has terrible seizures and all the other things you describe. HIs Mum sounded very isolated.

He features in some books about intensive interaction.

The internet has made such a difference. 99% of useful stuff that I have found out has come via the net in some form.

profound and multiple learning difficulties.

thats why dd has respite at school. I get to meet staff and they are brilliant and have nurses on call 24/7