Before the days when my special needs son was born, we ate lavishly on Thanksgiving Day. Cheese and crackers could sit out on the counter for snacks before the big meal, along with other snacks for everyone to graze. For the feast, everyone piled their plate high with seconds, and bread was always ready and available. We could serve gobs of food, with multiple side dishes. Everyone was well-fed, and no one complained, of course.
Then, my son was born with Prader-Willi Syndrome (PWS).
Thanksgiving and other food holidays drastically changed. You see, my son’s ability to regulate his food intake is very off. He seems to understand when he is full—sometimes—but if his body shifts into what is called hyperphasia (call it food-seeking overdrive), then he can literally eat himself to death, or worse, shove food down his throat so quickly that he chokes to death. In fact, choking is the number one killer in PWS people.
So, no food can be left out on the counter and walked away from. My son’s whereabouts, particularly in relation to food, must be constantly monitored. Controlling his portions of food placed before him, must be rigidly regulated, and he cannot just have second helpings, or “eat as much as he wants.” Food must be locked up at all times, which includes locks on the refrigerator and cabinets. A strict schedule is enforced as to when he eats, and how much he wants.
Too many extended family members in our children’s circles do not understand this, because they do not live with his symptoms on a daily basis. They think it is “no big deal” how much our children eat, and whether or not they have to keep food from them; they think they know better than we do. Or, they cut us off in fear at the weight of this responsibility. It isolates many of us.
Yet, the Creator of the universe….
Created my son. He knew how He wanted our lives shaped. God pushed us to find new things to be thankful for….
1) Eating whole foods—I wouldn’t trade them for one minute!
2) Leaving out processed foods, which leave us feeling sick.
3) A simpler life of cooking, DIY, living and working, praying…
4) Fewer medications and illnesses.
5) Relying on Him to find the next medical treatment or procedure.
6) The gifts of God’s plants that improve our health and heal our bodies.
7) Being thankful for the love in our life.
8) Autism, which has taught me so much about myself and reaching out to others who carry this burden.
9) Building a life with God’s creative solutions to many of our problems, which usually surround my special needs son’s needs.
10) Great health!
For this, I am truly thankful.
I pray the Lord’s blessings to each and every family that crosses our path.~Kim