In the imagined perfect world, you could walk into the office of a professional with your special needs child and they would have all the answers you need to your help your child. In the real world, that you and your child live in that is probably not the case.
I love the theme of this years Arc of Oregon conference “Get Real”. When I started writing my book I thought about calling it The Real World Your Child Lives In. Expectations of help and services can be very different from reality. Just because there are laws that grant services to your child doesn’t mean your child will get those services.
The U.S. Congress created the Americans with Disabilities Act (“ADA”) and the Individuals with Disabilities Education Act (“IDEA”). They did not necessarily fund the programs sufficiently to provide the services they mandate. A child must be proven eligible for specific services as well as able to benefit from a service.
In Doing Your Own Clinical Trials we quoted Kate Crow, Genetic Counselor from foreword to Parenting Your Complex Child (April 2006) that medical researchers don’t do many studies on “complex children”. We also shared that when asking several medical schools how much training on special needs patients medical students received the phrase “touched on lightly” was a frequent answer.
How do we wade through the frustration of getting help for our children. I will share my struggle and the approaches I created in detail in Parenting Your Complex Child. For now I want to share you with you the foundation of my system so that you can get a head start.
The foundation is the journal. It will include the quick notes – sometimes only one of two words to jog your memory because you are too busy to write much when your child is in a meltdown or you are involved in something else with him. Other times you will note observations in more detail when you are able to write.
It is like your study notes for a class in school. Your child is your professional and you are taking notes from his presentation. Because it is for your eyes only you can do it however you need to. The data gleaned from your journal can be used to demonstrate your child’s needs in documents for medical, educational, and governmental professionals. It can also be used for transitional planning and estate planning documents.
I like to say the journal is the detail. Presenting the journal itself to the busy professional does not work because it is too long for them to read in a short appointment. I create documents from Billy Ray’s journal that are in a format a busy doctor, for example, can absorb in short visits. I take the journal along so that if he or she has more specific questions than given in the summaries I provide we can refer to the journal for more detail.
The journal can be in any format that works for you. Billy Ray has a computer in his room and it is the one thing he doesn’t throw. He enjoys the screensaver pictures of his activities, family members and friends, etc. thus he is protective of “my puter”. I am able to keep the journal minimized on his computer at all times. When I am in his room while he is going to sleep, while he is dressing or other activities in his room, I am can make quick notes.
What to put in your journal depends on your child’s needs. If sleep is an issue track the naps and night sleep. If he suffers from constipation, etc. you could track bowel movements. Note any issues that a professional is likely to ask you about later.
Behavior issues are helped a lot by the journal. It will enable you to catch “triggers”. Note what was happened before a behavior, what the behavior actually looked like and how it was resolved. When you review the journal later you are able to see that if something was happening (for example, noise or unexpected visitors) it routinely triggers a behavioral. It will help you to avoid triggers to the degree possible and reduce some of the negative behaviors that result.
In a very real way you become the eyes and ears to help professionals understand and treat your child. In a recent email from Billy Ray’s medical provider he mentioned the importance of the documents I bring. I will share those with you tomorrow and hopefully get of a picture of Billy Ray and “my Dr. Brice” when he sees him this afternoon.
Peggy Lou Morgan