One Scared Mummy…
Hi there
My 6 yo son has had a diagnosis of PDD-NOS for approx 18 months (although this took close to 2 years to achieve!). He is in school and we have seen huge improvements in his play, taking turns, etc. His reading is exceptional but comprehension at times is lacking. Meltdowns are rare thanks to a fantastic anxiety specialist we see who has given us some amazing strategies. Toileting, however, continues to be an issue with soiling a daily occurrence although we have seen improvements with the guidance of a gastro specialist.
Our major issue right now is his eating or lack of. Once upon a time, he ate everything and as he got older he gradually dropped certain foods off his menu. He does have sensory issues and we appreciate that. However, we are the stage where his daily intake would be lucky to hit 500 calories. He is on a mile of supplements for vits and mins and a prescription drink with additional fat. Some days he refuses to eat anything. Given he is in the lowest percentiles for weight and height (he was 3 months premmie), he doesn’t have fat reserves to draw on. We have seen Feeding Clinics. We have tried every rewards chart there is, we have spent whole weeks just looking at a new food, another week on kissing, etc, etc. We have let him choose the new food to try but when it came to having 1 tiny nibble with a massive reward offered if he did we had the meltdown to end all meltdowns which were very scary. Basically, we have run out of ideas. We are at the stage of investigating alternative therapies (if they exist) or moving to tough love. While we know these are not recommended, what else is there left?
He has days with very little energy and he has almost permanent black rungs under his eyes despite 9-10 hours a sleep a night. The lack of food impacts his behaviour at school and his concentration levels (which are a struggle at the best of times).
Can anyone help, offer some strategies, someone to see?? I am desperate and a very worried and scared mum.
Thank you
Emma (Brisbane, Australia)
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Start on vitamins right away. We used to give our chidlren carnation instant breakfast in the morning. They have many idfferent flavors so he should like one. If he can’t have milk then it can be mixed with soy or rice milk as well.My pediatrician gave us the ok for the carnation, so don’t let anyone tell you its not for chidlren.
Next, what does he eat? Stop fighting with him right now. The issue is it it sensory that he has stpped. There could be an oral motor issue. Have you checked him for food allergies? He may have pain from eating food and not knowing which food it is he has decided to eat nothing. He may also have OCD issues, some chidilren really only want to eat a certain color food. it is part of the syndrome and you need to work around it. It can be anxiety related to school as well. Most children can only control their food intake and frequently have eating issues in order to control something in their lives (this happens with NT as well as autistic chidlren). As well as he does in school it is probably very difficult for him and he may be acting out through food.
Tough love is not how you handle an auistic child. Alternative therapies are frequently dangerous. You need to think this through and eliminate reasons for his behavior. While he has someone in school who can help , an outside child therapist who specializes in autism is a good idea for helping him deal with his anxiety/social issues/auditory processing issues/sensory issues. Does he get OT. Alot of sensory issues including oral motor are handled by occupational therapy.