I'm a single mum to my 16 month old DD. She has VACTERL syndrome which affects her heart,kidneys,bowls, spine and limbs. She has hospital appointments every week (sometimes more than once) in various hospitals. The furthest being 2 hours away. She takes medications at certain times throughout the day, needs daily physio e.t.c and has a colostomy bag. She also is on the waiting list for a number of major operations.
My problem is that to make a better life for me and my DD I need to go to uni so I can get a stable career to support us both. Does anybody know what sort of support there is available for us? Having to put her in nursery would make me worry as I know she is very high needs. Are there specialist nurseries that deal with disabled children? In addition to this, would I be able to commit myself to something where I would need time off so often for example to attend appointments or for when she has surgery planned. Even if I did a part time course I would need to take off at least a month for her operations.
I feel like the best and safest place for her is with me but at the same time I need to get a degree to provide a better life for her.
It sounds like a really tricky situation. I think studying at university would be difficult, but there is support available and you shouldn't write it off completely. Do you have some unis in mind? Also what course would you like to do? Some degrees will be more flexible than others.
Are you very keen to study on campus? Otherwise the OU might be a good option. You may find it easier for you both to study at home and hire a specialist nanny for your daughter. I'm not sure how funding works for full time distance learners, but I know the student finance application form asks if you are doing distance learning due to a disability.
It's really hard. I went back to try and complete my masters when dd2 was two. She has cerebral palsy. I have two other kids as well.
I found a nice nursery that agreed to take her (yes, it's possible - she qualified for some early years funding from 2 due to her sn - she had been on school action plus since 12 months and was eventually statemented for yr r) and the nursery provided a full time 1-1 key worker with the funding and their own top-up funding. Discuss with the Area Inclusion officer for your local authority. She has always been in mainstream nursery and mainstream school. You can investigate sn nurseries in your area, and you may be lucky. I prefer having dd2 in mainstream as I believe she is challenged more, but only you can make the decision whether it's appropriate for your child. (She wasn't walking or talking - her key worker cried when she managed to crawl for the first time)
So, I had three kids in three different settings, and a half hour drive to uni. I'd turn up exhausted, having essentially run around like a headless chicken to get everything in place to attend a lecture.
Later, I used a nanny. I needed someone who could take her to physio and OT and SLT for routine stuff, and I could just go to the 'bigger' appointments. Are you in receipt of DLA? It helps. Have you had a carer's assessment done? Do you qualify for any respite? My nanny wasn't a specialist. I needed someone who could be relied upon to treat my child as an individual, and learn to cope with her individual needs, not as another child with a disability. I wasn't an expert in sn when she arrived, so I was happy to train up someone else in my daughter's needs.
Uni were very good.
Unfortunately, a disabled student on my program died during my course, due to complications surrounding his disability, and I essentially had a breakdown after listening to his mother talk about his early years at his memorial service. The good thing is, Uni gave me the counselling I should have had over dd2's birth long before... So, I still haven't finished, but as luck would have it, I'm starting again in September. She's in school now, so much easier!
A friend of mine is a single parent and has a child with Downs Syndrome. She is studying an Open University Degree and taking her time to do it. I think she got it for free as well, because of her circumstances, but I am not sure.
There probably are SEN nurseries out there. If your child is high needs she probably would have a one to one key worker that she would bond with. You may get assistance with a special care Nanny. I'm not sure. You can try SNAP Childcare. Some of their nannies have hoisting certificates and other special care experience.
I'm a single parent of an abled child. I'm on a 2 year Masters degree and it's not easy. I'm doing this to make a better life for the both of us, so I understand your motivation. If you really want to study, you should try to find a way.