Hi all,
    I am having to start Aimee at nursery in a few weeks for 2 full days a week as I will need to start looking for a job now that maternity is over. She is only 8 months (5 months corrected, I have a meeting with the head of centre, health and safety advisor for the local authority and a school nurse. They want to sit down and discuss Aimees condition and everything that could possibly happen so as they can assess all her needs and decide if they are equipped to take her and if they are make a care plan for her.

Aimee has been really lucky since she was discharged in June, she hasn’t had to have any dilations so far and hasn’t had any aspirations. She choked slightly the first time she was given pureed food but apart from that no choking. I’m sure once she moves on to more lumpier food things will proberly get alot worse.

I’m just looking for a little advice as to what you think I should be informing them off, they already have the leaflets, I have wrote down all her medical history, what to do incase of choking, all her medications etc. I’m just finding it hard as I know that the tricky areas have still to come and they will prob experience this with me. I hate the fact that I need to leave her so young, I feel sick at the thought of it as I want to be with her all the time especially as she moves on food wise incase it doesn’t go well :(

Hi all who are reading, just an update and a little advice needed. The local authority have decided that they are unable to take Aimee at the moment, they said they could possibly take her when she is 2. Has anyone else had issues with childcare, their reasoning is that it is too much of a risk for the staff due to the blue spells and the amount of medication she is on. Aimee had her first bad blue spell the other week and it terrified me, I don’t think I am able to leave her at the moment but going to have to at some stage so just wondering what all you other tof mums do for childcare x

Hi Marilyn
I’m sorry that no one appears to have responded to your first posting here, and am saddened to see your update - it is sole destroying, especially having made the decision to go for nursery placement and go back to work and then to have this bombshell come down on you.

I’m not sure how much advice I can offer.  There may be some form of appeal you could follow, but I’m not sure given Aimee’s age, it may only be from when she’s over two that establishments have to (by law?) make necessary adjustments to accommodate a child with extra needs..

So, as for advice, all I can offer is my personal experience.. Laurie went to a childminder from 9mth old.  He was born long gap TOF/OA, full term so, unlike Aimee, didn’t have the prem element.  He had 2 dilatations in his first year.. suffered constant chest probs/aspirations.. for the first few years, almost every day we’d have a choking/stickie episode of some form.. Now he’s fast approaching 5.. started school last Sept.. it seems an age away when we were where you are now!

I battled with myself deciding to go back to work but felt I had to (personal sanity!!!).  I didn’t pursue nursery for one reason, I needed Laurie to have 1-2-1 .. not 1-2-4 or whatever the carer/child ratio was in a nursery.. So, unfortunately, never looked into it so can’t offer any thoughts on that..

For us, childminder was the only option.  I was lucky, found a lady (Julie) who lives pretty much in the next street from our house.  I went to see her and we clicked instantly.. she read all the leaflets, listened, asked questions, came onto TOFs and I was convinced she was the right person.  I only worked 3miles away so I could, if needed, be there double quick.. As it happens, he was with her for a full year, 5 days a week, and I seem to recall he had only 1 or 2 mild stickies during that time.. He only stopped going when she had to give up minding as she got a job in the local school - where she still is today, and she is his meal supervisor!! I continued with childminders thou, found two more fantastic people, splitting his time .. and he still goes to one of them during school holidays now.. and my second son is with Donna now too..

I returned to work, 5 days a week (my employer at the time were not sympathetic so part time was not possible!!)..  I gave him breakfast, provided ‘safe’ food for lunch (became a dab hand at making wholesome soups!!) and I gave him his tea.. Obviously his day time food did develop to lumps, but they were what we come to know as safe.. bite & dissolve types etc.

I guess one thing we did, was not try to rush his feeding/transition to lumps/lumpier food.  I was happy for Julie to have very safe baby purees and do the rest at home myself.. Don’t feel that you have to go with the rest of them.. our little TOFs don’t ‘have’ to keep up..

I hope I’ve given you some food for thought and I’ll try and rustle up some more responses…

Good luck and keep us posted.
Rachx

Hi Marilyn,

Reilly has just turned 3 and was quite a straight forward repair. I have him at nursery 3 days a week now but my parents had him until he was 2. Nursery have coped really well. He hasn’t had the same problems as Aimee. I went round all the local authority nurseries etc and found that they just weren’t sympathetic and was told that all I might get was respite care of 2 hours and no choice of when. He goes to a private nursery (small groups) and the staff have been great but to be honest he hasn’t really challenged them - he takes safe food. He was recently turned down for an early application for his pre-school funded place with the council nursery. His birthday is 9 days after the cut off. I would suggest that you find out who is responsible for early years childcare in your area and take your situation to them. Yes there are a lot of possible problems but that doesn’t mean that you will experience worst case scenario. Have you asked your health visitors advice - maybe they have come across similar with other children?

One lesson I have learned is that you have to fight every step of the way for every little thing. If you don’t ask you won’t get!

Have you applied for your DLA? If you are unable to work you may be entitled to more. Welfare rights can keep you right on benefits, there are disability elements applied for children to some things like tax credits and income support. Sorry I can’t be more help.

Good luck.

Carol x

Good one Carol.. yes, FIGHT ..
Sure Start Children’s centres may also be able to help. 

And yes, if you can’t (or don’t) work because you are caring for someone (in your case, your child) and do so for min 35hrs a week, you can claim Carers Allowance..

Definately, DLA (disability living allowance) too - if you haven’t, you definately should..  There are threads on the general forum about this, and I can certainly help.  It’s a hefty claim form (in total 50 odd pages) but is relatively striaght forward really, you just have to know how to complete it.  DLA isn’t means tested, and doesn’t effect other benefits either.  DLA ‘care’ is given when ‘extra care and attention’ is required.. our TOFs definately fit into that category..

PM if you haven’t claimed and want to know more.. I can also help with Carer’s, although personally I haven’t claimed but over the years, have found myself being benefits ‘point of contact’ with TOFs ..

Keep in touch.
rachx

hi marilyn,

my son started nursery when he was 2 and half, and he was given a one on one support worker, who is there purely for him and is there for the whole time hugh is there. She was appointed to us from the PLA - Preschool Learning Alliance. maybe they would be able to offer similar help to you - your chosen nursery would have to contact them and that gets the ball rolling.

im a stay at home mum now but i used to be a nursery manager, and as a nursery you have to do everything in your power to enable a child to attend nursery - be it, give staff additional training so that they can have specific training in dealing with choking, blue do’s anything that may happen with an individual. Hugh’s nursery got a first aid trainer in just to go over choking and cpr just so all the staff were confident to be able handle hugh if anything does get stuck. if a nursery feels they cant offer the full support etc then they can obviously say so.

if you feel they have said no unfairly then you can always take it up with ofsted as they regulate all private nurseries.

i know what you mean too, it is such a hard decision to make about taking them to nursery and nerve wracking too at the beginning. Hughs been going 10 months now and weve slowly built him up from a 2 hours 2 days a week, to a 3 half days now and he really does enjoy going now.

also what i did at the beginning was to stay with hugh for the first fair few sessions, so hugh transitioned really well to playing ther and getting used to the staff, but it also gave the staff chance to build their confidence with having hugh there too, especially when i was there for the 1st lots of snack times and they could see how we dealt with a stickie etc.

hugo has an action care plan in place too so they all know exactly what to do in the event of chokes, stickies etc.

kim xx

Hi Marylin, my daughter attended nursery when she was two and had one to one at snack and meal times, I gave all the info like you and a what to do list. She attended a local Sure Start and they were brilliant. Can you speak to your health visitor about a keyworker/disabilty link/ portage worker? We got a free place through our HV. Apply for the DLA too and carer’s allowance. I work f/t so could never apply for carers allowance, the DLA really helps and as has already been said it entitles you to other components of tax credits.
You must be really fustrated at the news you received, fight though and look around. At the children’s centre where my daughter attended they had children in their care who required a lot of additional support. Also some councils will pay for a child to have one to one in a setting. I would definately speak to your HV and see what she says. You could always visit a Sure Start, they run classes for parents and children who have disabilities which are ran by disabiliy link workers and they will be able to put you in the right direction. Our sure start had a key worker who came into the group and gave advice on all sorts to the parents. Good luck xx

Hiya, i know it’s been a while since you originally posted and I hope you did manage to find a good nursery to look after your lil one.  We started Ella at nursery when she was 14 months old, would have gone sooner but she spent most of her 1st 12 months in hospital and it was only after that she sort of became stable.  We only actually looked at 2 nurseries, the first I was sure we would want Ella to go to as it was part of a special school for children with disabilities so I knew there would be no problem with the additional support; Ella was wholly tube fed at the time.  Surprisingly we hated the “specialist” school, they didnt seem to be particularly caring and the actual nursery, although its Ofsted was marked oustanding we thought it was pretty mediocre.  We went looking at this other nursery which was a sure start nursery and explained to them the problems Ella had and needed to be tube fed and was on oodles of medication etc and they went out of their way to embark on training.  They all underwent further CPR and choke training and all the nursery staff who’d be caring for Ella went on Gtube training.  She initially started 2 days a week and now goes 3 days.  Within 2 months of started the nursery she went from fully tube fed with oral aversion to being fully orally fed.  She’s almost 20 months now and can handle any texture and eats exactly the same as her peers in the same age group.  Her G tube was taken out 4 months after starting at the nursery and we’ve never looked back.  They cope marvellously on the few occasions she’s had a “stickie” and have never had to ring us in an emergency.  They even let her go in whilst on antibiotics, there rationale that she’d never be in if they stopped her on those occasions lol.  Also would like to add Ella was 5wks prem with short gap O/A, has had 6 dilatations and had a recurrent fistula repaired at 10months and was nil by mouth from the age 5-11months.

I guess what I’m trying to say is that there are really good, non specialist, nurseries out there who are prepared to go above and beyond their usual remit.  All the staff love Ella to bits and she’s got a really good relationship with all of them.  I personally would not want Ella to go somewhere they were finding reasons for her not to go because of an illness and i’m so so glad we didn’t pick the other place.

Hope you did find somewhere xx