child care and the disabled child

was asked the other day how to combine working full time with child care for disabled child.... is difficult.

I had intended to work so did not see why that should change because of disability or special needs.

the first childminder, from five months old, was a disaster...as Ix's special needs became more apparent and the list of appointments with various -ologists and therapists grew, it became difficult. I would ring to say I would be late and to wait - she would go out and disappear with the other children. This was 11.5 years ago - no mobile phones!

changed to another childminder but it didn't work...found a great nanny share -the other child was older and at school so Ix had full attention during school hours, and K could take him to routine appointments and therapies, speech groups and so on.

when L was born I (not quite) managed for maternity leave with newborn and Ix - would sit him in frontt of TV, plus he was at nursery part time by then. (L picked up a lot from TV, the alphabet, etc - in fact her first clear word at nine months was "Bob" - as in Bob the Builder).

then through an agency got a fantastic nanny, T, who stayed with us for five years and thereafter did ad hoc child care. she was fantastic and helped so much with therapies and so on. the problem with nurseries, childminders - mainstream child care is they won't take time out to take your child to routine appointments. only a nanny can do that.... and there are only so many therapies/appointments that can or will take place at school.

At one time we had regular appointments with:
speech therapist
physiotherapist
occupational therapist

paediatrician
neurologist
gastroenterologist
opthamologist
audiologist

and various others, appointments with nursery SENCO (special educational needs co-ordinator) , home educators and so on...

when G was born, I kept the nanny (a fab temp replacement N, as T was in Australia) - I was paid full salary so it made sense.

as time went by, Ix settled into routine of school plus after school programme of educators/therapists (paid for by my work education grant) plus nanny for the two girls.

in early 2005, N (the now ex) left his work to ostensibly care for the children - i.e. picking up the girls as Ix was cared for by his home programme people. it seemed good - no nanny to be off sick, girls could be with their dad.

but as he sunk deeper and deeper into depression it worked less and less.

he would moan every day about the humdrum routine, travelling twice to school, cooking the "same old food" every day

"you are so lucky going to work"....

suggesting to him to utilise his day time hours productively, go to yoga, seek help, came to nothing... eventually there were days he was so anxious I had to take time off to care for the girls. He was seeing GP. homeopathic, autogenic training etc etc. but sometimes it was a case of him not getting or not asking for the right help, who knows...

fast forward....

now we live separately. me and the children.

today, Ix gets picked up by his school bus about 8.10. I then take girls to school, then go to work. Ix arrives back on bus at about 4.15 and is met by one of his three after school therapists. the gilrs are picked up by a carer and brought home. If I have a late evening either one of Ix's therapists or the girls carer will stay with them all.

school holidays largely covered by playschemes and extra hours worked by carers/therapists.

it is when a child gets sick that it all falls down...and if I get sick! or if the carer gets sick...

luckily have built up a few carers I can call on, and other parents from the girls' school.

it isn't easy... ideally I would work less hours, maybe 80 per cent..but now I am paying large rent on flat is difficult. when I can sort out financial arrangements with ex, it might be possible.