Tuesday, October 25, 2005

The Lighthouse Concept

Whether you consider it intuition or spriritual discernment, as I do, many times parents just know when something it isn't right with their child even when there aren't obvious signs.

There have been many times with Billy Ray that the professionals involved in his care and education just didn't have the answers and neither did I. What I often refer to in my writing as bootstrap learning came to me as I turned back to my faith and began praying something I came to call the lighthouse concept. You can read it about it http://www.lighthouseparents.com/Lighthouse_Concept.html.

We have been experiencing that with Billy Ray recently. I having been asking for guidance because I knew something was up and no one seemed to come up with answers to his continuing to be sick after he should have recovered from his surgery this summer.

When I wrote you yesterday I sensed that something was up and that he was not just having a good time over the weekend. A few hours after I posted my blog I got the lab results from tests done at the end of last week. I knew that I knew Billy Ray has diabetes. I suspected it for the past few weeks. His primary medical provider has been on vacation but I pushed to get someone to order a fasting blood sugar. It was confirmed yesterday.

Diabetes might seem common and easy to treat. When your child has complex special needs, sensory, reflux and other issues make it difficult just to find something your child is willing to eat. Whenever Billy Ray has to take antibiotics, experiences constipation or is ill with something else he basically stops eating and sometimes gets dehydrated. It has been necessary to be creative in what we give him. For example, I made milkshakes with dietary supplements like Ensure and fresh fruit besides the normal contents. I started making him stuffed baked potatoes with finely ground sirloin, cheese, etc. just to get as much nutrition in him as possible.

We have been here before in terms of trying to be low cal and sugar free because one of his former behavior medications caused him to gain 60 lbs. Thus we have substituted sugar free syrup for his waffles, skim milk for whole milk, sugar free jelly for his favorite strawberry jelly, etc., etc. He stopped eating!!

It is pretty clear I am going to need the lighthouse concept (praying for guidance) for this one. It is going to be maybe the biggest challenge we have had with Billy Ray. The risk is that he will stop eating if he can't have what he wants or that he will become so aggressive because he can't have his favorites he won't be manageable at home.

It is my intention to share this challenge with you. What we do with Billy Ray may not be the answer for your child but maybe it will jumpstart your thinking with your child. The purpose of my writing in general is to help you adapt not to what works for you and your child not to get you to do things my way.

Until tomorrow,
Peggy Lou

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