Hi. Long time lurker. Need to vent and some support please. Sorry this is long.
Dd is 12. She has ASD and 2 younger sisters who are NT. Her food issues are now really affecting our lives and I just don't know what to do any more. Last summer I made a list of the foods which she was willing to eat to help her to decide what to have at mealtimes. I looked at the list earlier this evening and realised that I needed to make a new one as she doesn't eat most of what's on it any more. So I did. And it isn't good reading. Not only has the variety of different food on the list shrunk, the amounts she will eat have also shrunk. She has no energy any more and is always tired. She is rarely hungry. She has no stamina for anything physical any more - the Senco at school told us she doesn't really participate in PE. If we go on a family outing, she can barely walk for 10 minutes before complaining that she is so tired that we have to go home. And if we don't go she has a meltdown from tiredness.
She will only drink fizzy drinks - she doesn't like drinking full stop. At breakfast she will have a tiny handful of dry crunchy nut cornflakes - doesn't even cover the bottom of the bowl and she often leaves some. If i make some healthy breakfast muffins she will eat just under half of a cake and say she's had enough. Then, with a sip of water, she's off to school.
She will have a packet of certain crisps at break. A small pack of biltong and sometimes a couple of grapes for lunch
Then she will come home exhausted and irritable but you can't talk to her and tell her it's because she hasn't eaten enough or she will melt down.
She will drink diet lemonade and then at supper, have some meat (- if we're having meat and) potatoes of some kind. Not much of either - a few mouthfuls. If we're having broccoli she will bite the tops off sometimes. No other veg. Then 5 pieces of strawberry / grapes - or no fruit. She will eat fried egg and thin crispy french fries to dip in until they're gone. Or pasta or pizza from a certain takeaway. And that's it, apart from certain biscuits, sweets, ice cream etc
The problem with the above is that, as well as it not being a healthy diet and that she barely eats, we have very little wiggle room for family days out - or holidays away from home. We rarely go anywhere - when we do we have to make sure we have her food with us and it is so so stressful. I am so tired of doing this. In my dreams, we go away to a hotel and I can be looked after for a bit but I have just realised that we just can't go. Even forgetting the money side of things - I can't take her to a place where I don't know if she will eat or drink anything. Last year we looked at going somewhere and I phoned up to discuss what they offered foodwise. And there was nothing she would eat so we went nowhere. I am so tired and depressed by all of this and the constant worry.
I did phone the gp and they agreed that there is an issue. They said they would refer her on. And they did - to the healthy weight nurse who deals with obese children! When I spoke to the nurse she said it was an incorrect referral and to speak to the gp again. So I phoned and was told that they would refer her somewhere else. I'm still waiting to hear. In the meantime, we're just barely holding on.
Please help.