Many years ago when my oldest daughter (now 29 yrs old) was little I remember hearing from other parents how their teenagers didn’t know how to make their own formula, and this just shocked and stumped me. I can still remember always thinking to myself “This is a lifelong thing and these teenagers don’t know how to make their formula? How will they do it when they leave home?” I can remember talking to our dietitian about it, and she confirmed that many of the patients at the time had their parents making their formula for them. At PKU related events I can remember talking to parents with older kids, and they would also tell me they still made their teenagers formula (or milk depending on what they called it....in our house we call it both formula and milk). I would ask them why, and some said because they were concerned their teenager wouldn’t make it right, or their teenagers just refused to make it, and I really struggled with this. If this diet is supposed to be for life then to me this was a life lesson our kids needed to learn.
After repeatedly hearing this, and repeatedly hearing families talk about how their older kids refused to even drink their formula, and after going through it with my own child/early teenager I knew something had to change. Therefore, when I had my second child with PKU (now 21 yrs old) I had a plan to make things different this time around. I felt as though I needed to do better this time around, and I took what I learned from having 5 other kids (at the time) and from having one other child with PKU, and decided we would start very early. Probably around the time Erica was 5 or 6 yrs old I would have her come into the kitchen when I made her formula and started with simple things like having her gather her formula, the cup, her straw, etc. Then over time I had her start to measure out the formula powder and the water. I would do the shaking (we shook the container back then), and I would pour it into the cup. As time went on I did less and less and she did more and more. By the time Erica was 8 or 9 yrs old she could make her formula all by herself.
I found that by giving her control over making her formula it also encouraged her to take control over when she drank it. She knew how much formula she had to drink in a 24 hr period, and she knew that she needed to spread it out throughout the day, and she just did it.
When I had my third child with PKU, Genavieve (now 12 yrs old) I did the same thing, and she also does a great job making her formula and drinking it. Genavieve at times can get to be a little bit involved with things, and time passes her by......this is just her personality in general. We found she really struggled with remembering to make it and spread out drinking it throughout the day, so her and I came up with a plan. We have Alexa devices in our house, so I programmed in reminders. Genavieve and I sat down and discussed the times she wanted the reminders to go off, and I made that happen for her. When the Alexas go off in the house saying “Gena make your milk” she just goes and makes it and drinks it. That simple reminder using the Alexa has made her feel empowered, and made me feel like less of a mean mom making her stop what she is doing to make her milk.
I believe that the more we empower our kids the easier having PKU will be on them in the long run. I think not only making their formula, but also involving them in meal planning and meal prep can also do wonders for them (I wrote a different blog on that subject).
Don’t get me wrong.....I love my kids and would do just about anything for them, but part of my job as a parent is to also prepare them for life without me. I want to know that when my girls grow up and move out (two of them have done so already) that they know how to take care of themselves. I want them to know the importance of drinking their formula/milk, and how to make it. I don’t want them to see it as a burden, but instead just an every day thing.....being no different then brushing your teeth, or showering, or getting dressed.
About the author: Michelle Hardy lives in Wisconsin. She and her husband are the proud parents to nine children (3 with PKU), and is a grandmother. If you would like to connect with Michelle you can email her directly at michelle.d.hardy@gmail.com
Comments
Post a Comment