Wednesday, 8 February 2012
Sausage rolls in my knickers!
Having a child with autism brings many challenges. One of these challenges is the daily battle to get FD to eat. Eating difficulties amongst autistic children are not uncommon. I used to work with an autistic man who would only eat white food. So therefore his diet consisted mainly of potatoes, milk, bread, cauliflower and porridge! Its also not unusual for those on the autistic spectrum to have an extremely limited diet whereby they only eat one or two foods. A friends child only eats chicken nuggets and chips. That's it!
When FD was younger we didn't have any problems with her eating. If it was on her plate then she ate it! Sometimes she even ate things she shouldn't. We used to have a Yorkshire terrier who lived in fear that she was never going to get to her dinner as FD often could be found chomping her way through the dogs food. Disgusting I know! Made for some interesting nappies too! However, over the last few years FD has become more select about what she eats. These problems seem to have started at around the same time she was diagnosed with epilepsy - approximately 5 years ago. The medication that she was prescribed not only made her hair fall out but it seemed to affect her appetite. She just never felt hungry. She started hiding food if she was left alone at the table and we would often find sandwiches hidden in the bin or sausage rolls hidden in her knicker drawer!
A change in medication seemed to alleviate the symptoms but a worrying new precedent had been set. FD now had a strained relationship with food. If she had been a neurotypical child I would have been concerned that she had an eating disorder and had body image problems. But, as she was a child with a learning disability and autism I felt it was connected to that. Was it learnt behaviour. Had she now just got into the way of not eating. I don't know and suppose I'll never know. But it has given us many problems over the last few years. FD has not put on any weight in 2 years and for a teenage girl who has hit puberty, this is not good. She is 5ft 5 inches and is very thin looking. I can wrap both hands around her waist. Because she is due to have major spinal surgery she needs to build up some muscle and generally improve her overall health to help her through the operation.
One of the difficulties FD has with food is that she has suddenly gone from loving particular foods to absolutely hating them with a passion. Take burgers for instance. She used to adore them smothered in ketchup. Now she almost gags eating them or just point blank refuses them. Is it the texture of the meat? Perhaps. FD hates to eat in the mornings. However, because she takes her medication in the mornings she has to have something in her tummy. So, we have gone from huge bowls of cereal to no cereal at all - apart from this weekend of course when she has suddenly decided that she likes Shredded Wheat! This is a good move from cereal bars or just a glass of milk for breakfast. Whilst its great that FD has found something new that she likes we know that a pattern will soon develop. She will eat her new found favourite food so much that within a few weeks of liking it she will soon hate it and we will be forced to find something new for her to try. At this point I will throw myself onto the floor and sob! (No I won't really! ........well maybe a bit...........oh OK sod it......I'll just open a bottle of wine).
One of the other difficulties that FD has is choices. Presented with too many food choices she will go into meltdown and feel under pressure. How does she deal with this? She stops eating! I initially thought I was being a great mum giving FD lots of choices of lovely foods but unfortunately it had the opposite effect and just distressed her. I have found that preparing menus for the week helps her see in advance what she will be eating. Its become a case of taking away her choices and simply telling her what she will be eating. This isn't always successful either and she can sometimes dig her heels in. Quite often she has her own alternative at meal times. I think the stupidest piece of advice I ever received about her eating habits came from my mother (which is not unusual). She felt that because FD enjoys takeaway food on a Saturday night that perhaps I should just give her takeaway all the time! Apart from the obvious expense, there is absolutely no nutritional value in doing this. I would be filling my daughter with so many additives and horrible fats that she would end up with a whole host of new illnesses and her behaviour would also be affected. Takeaway is OK for a weekend treat but not for every meal! I did subtly point this out to my mother. Yes hard to believe but I can be subtle!
FD's paediatrician prescribed her a milk shake drink that could be used to replace one meal a day, preferably breakfast. It was fortified with a host of vitamins etc and came strawberry flavoured. FD hated it! I tried buying ordinary milkshake drinks, emptying them out and filling the container with the supplement. FD knew it wasn't proper milkshake! I even tried adding ice cream to it but nope that sneaky child of mine could tell! She used to do this when I tried to go down the Gluten free route. I swapped some foods for Gluten free alternatives and put them in the usual food wrapping etc. But she knew! If presented with a plate of chocolate biscuits she could tell the difference between the Gluten free ones and the ordinary ones!
So, where do we go from here? Well, we have managed to secure an appointment with a dietitian who runs a clinic from FD's school and we go to see her in a couple of weeks. We had avoided dietitians up to this point because the more of an issue we made about her eating, the more problems it created and upset FD which resulted in less eating. A totally vicious circle. However, I am confident that because the clinic is in her school and many of her school friends attend it, she won't feel that it is such an issue or that she is very different from other people at her school. We are fortunate (or unfortunate, however you want to look at it), that FD was re-assessed as having a severe learning disability over the Summer. The move from moderate to severe appears to have opened up some new doors for her and us in terms of accessing some services and making people sit up and take notice. Of course we have also been instrumental in getting some of these things for FD after re-evaluating the direction that FD's life was going and how her needs seem to have quite dramatically changed over the last year. We realised that we couldn't do it all and needed help. We'd been stuck in a rut for a long time.
So, hopefully we will get some help for FD and try to resolve or manage her eating requirements a little bit better as I am sure there are things that we could improve on as I'm pretty sure we are probably doing something wrong. I don't mind admitting that some days there are holes in my Superwoman knickers and that my superpowers do leak out and that's when mistakes are made or I don't manage the situation quite so well. Oh actually that sounded like an advert for superhero incontinence pads! Ewwww! Errr excuse me.!!!!This superwoman did her pelvic floor exercises!
Posted by JB JOHNSTON at Wednesday, February 08, 2012