My son has ASD and has been on a gfcf diet since he was 3. Prior to going on the diet, he slept horribly- up until late, up at 3 or 4 in the morning, having night terrors or giggling fits in his sleep. He was covered in eczema and had huge dark circles under his eyes, manic mood swings, and acted like his stomach hurt and had digestive issues.
I immediately saw impovement- eczema gone, dark circles gone, mood swings mellowed out, sleeping patterns changed, NO more night terrors/ giggling fits. I KNOW his dad (my ex) saw these results at the time too.
Fast forward to present day: A lot of these issues are resurfacing. They have slowly been building up for months, and I have talked with his dad about it- and he seems genuinely concerned. I feed him a strictly gfcf diet, his IBI program does, his school does, and my parents- everyone goes the extra mile because they know how much it helps him- many of them have witnessed it for themselves.
I have had to argue with his dad about these things in the past. he will bring up conversations like "I don't think this diet is helping.", "I don't think his IBI therapy is doing anything." "Is the school really changing him that much? He's not talking yet."
He has never really attempted to be part of any of my son't therapy or education selection, communication, management, etc. He has always been welcome, and while he is constantly asking me for advice and answers on how to "help" our son, he constantly second guesses all of it- even though everything has had obvious positive results for my child.
Lately, my 5 1/2 yo NT soon- who is very keen on his brother's food allergies- has been announcing that "Dad says my brother can have normal food now!" and tells me they eat things like pizza, cheese quesadillas, ice cream, etc. While I know this is a child telling me these things, those comments started in tandem to my Son (with asd) regressing badly (he was finally fully potty trained and now isn't, having loose bowels several times a day, totally manic, screaming, waking up at 3 am, bags under eyes, etc etc). Both Myself and my son's IBI therapist have talked to my ex about our son's current issues and he seems concerned too- and we have implied it is due to diet but without accusing him.
I have offered din the past just to send meals with my son for his "daddy days" if it is not something his dad can handle, but he is pretty prideful and always says no. I am pretty much at the point where I am just going to start making them and sending them regardless.
I know to some parents this may seem crazy, but to others with children like mine, I was hoping there may be some who could relate about someone- an ex or family member- who will not uphold a key part of your child's diet/ therapy/ treatment etc. HOW do you convince them? I know this is due to inconvenience and not money- he has a way higher income than I do and I manage to feed my child about 70% of his meals, while he probably only feeds him about 10% of them (IBI program the rest). It is important enough to me that I will cover his meals at his dads if he won't bother...
I have heard- and used the argument before that if our child was allergic- like needs an epi-pen allergic, there would be NO excuses to slip up on his diet. But somehow, it's deniable when it is clearly effecting my son in many numerous ways. My child is suffering. HOW do I work this? HOW do I get this through to their other parent (who can be really difficult to communicate with)?
Send the food. Start an email paper trail with dated reminders of what you sent and why you sent it: "To help you comply with DS' medically prescribed diet, on 10/25 I provided you with X, Y and Z. If DS does not follow his medically prescribed diet, he will suffer (insert symptoms here.)"
Then, if he comes back sick, send another email: "On 10/27 DS experienced (insert symptoms here). Please help our son to stay healthy by following his medically prescribed diet."
Basically, make it look like you are building a paper trail that could be used in court to document his noncompliance - though you would never want it to go so far as that. Ignore any ugly emails you get in return - but save them.
I will definitely keep track of sending food, but an issue is while my son's pediatrician is a strong supporter of the gfcf diet for her patients with ASD- because she has seen it work, my son has no medical diagnosis or rx in relation to it. I am about to have him screened for parasites and bacteria to rule those out, the test him for celiacs... Because, guess what, his dad has it (though he doesn't 'live without; and is constantly ill. I witnessed it firsthand for 5 years). And during my last pregnancy I was told I likely have it because of major problems that happened- making our son likely to have it too. But it might come back neg if he has it or not, but part of of me hopes it's pos so I can use that to support my case.
If the doctor has recommended it, then it's medically prescribed. You don't need to have something written down about it. If you ever went to court, they might want to a letter from her, but that would be way in the future and not hard to get anyhow, if she supports the diet.
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