The Golden Rule of Raising a Child with a Metabolic Disorder
Several of my followers have asked what my parents did or any tips they have for raising a child with PKU. Once they got past the initial shock of a PKU diagnosis out of the blue, it was business as usual.
Thankfully, my mom is an amazing cook. She was raised with a mother who was actually a master's prepared registered dietitian. Side note- this was in a time when many women did not even go to college. I feel very blessed to have so many strong, well-educated women in my life. Obviously, being a strong woman and raising a child with a metabolic disorder go hand in hand. If you didn't know you were strong before the diagnosis you definitely know it now. That goes for dads, too, don't worry.
(Favorite foods- applesauce and watermelon. Normal. Am I right?)
To get back on track, as you all know, cooking is important for managing a low protein diet. The good news? ANYONE can be a good cook. You just have to want to want it.
Over the next few weeks, I will share a few crucial tips from my parents that helped me growing up. They really feel this first bit of info shared below is the golden rule.
The FIRST and most important tip is to raise this child as "normal".
(picking my nose...maybe not normal?)
We are normal. Let's get real, everyone nowadays has some sort of weird food issue. The new norm is having an abnormal diet. What is the big deal? If you think it is a big deal, IT WILL BE.
This might sound bad but do not celebrate this disorder. It doesn't deserve that. Do not get me wrong, I am not ashamed of having PKU. I just prefer for people to get to know me for my accomplishments and personality rather than my disorder. It does not define me and I do not want others to recall me as the "girl with food allergies". I am more than happy to talk about it and answer questions but do not volunteer this information because I have so many other important things to share with those in my life.
Raising your child as "normal" means:
NO 504 PLAN
...because we are not disabled
NO CARE PLAN WITH THE TEACHERS OR NURSE'S OFFICE
...because we do not go into anaphylaxis from unknown exposure
NO SPECIAL MODIFICATIONS FROM THE CAFETERIA
...because a packed lunch is so much healthier than the junk they serve
NO EXTRA ATTENTION ON THE STUDENT DURING MEAL OR SNACK TIME
...because your kiddo doesn't need other students looking at them cross-eyed while the teacher attempts to educate the class. Why is that necessary??? It is not.
This may all sound very harsh. This disorder is not always easy and is actually far from that at first. I can't imagine what a new parents goes through when learning their child has an inborn error of metabolism. I am by no means trying to make light of metabolic disorders, the amount of time that you as parents are pouring into keeping your child healthy, or the cost associated with this disorder. BUT, if you want your child to live a "normal" life then you need to act like it is normal. YOU NEED TO SHOW THEM.
Don't ever forget how STRONG you are. You have been through more in your child's first year than many parents go through in the first ten years of their child's life. It will be worth it. I promise you.
More to come next week. Please reach out with your thoughts and questions.