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Question:

From Lincoln, Montana, USA:

Two years ago, my son was diagnosed by the school superintendent with ADD, and a brief trial of Ritalin was tried, but he had bad side affects (headaches, zero energy after school and moodiness). About five months ago, his grades started slipping, so the superintendent asked me to put him back on the Ritalin.

I took my son to a psychiatrist for a second opinion who said he does not have ADD but a type of depression called adjustment disorder. She (along with anyone who really knows my son) saw a lot of anger towards his diabetes and the fact that his identical twin brother is healthy. His twin participated in the DPT-1 and was found to have less than a five percent chance of developing diabetes.

I conveyed this to the school, and a meeting was held to discuss my son being retained in the seventh grade. My husband and I are against retention because first of all, my son already resents his brother, so moving him ahead and keeping my son back would only make it worse. Secondly, he is seeing a counselor for the adjustment disorder, and to throw another adjustment as big as being retained would only cause further delay in his adjustment. The meeting group was divided: one side agreed that a 504 plan be implemented, while the other side wants to retain him. I tried to explain how much stress is in my son's life, how he needs help adjusting and how painful as a parent it is to see another setback, but I came up empty.

This is a very small school and there is only one other (younger) student who has diabetes but has adjusted well. None of the teachers have lived with or cared for a child with diabetes. I am constantly being told by school personnel that my son has to learn to be accountable and responsible for his diabetes. When I explain that he is only 13, and I cannot put all of the responsibility on him, I am asked if I am going to be there to take care of him forever. Of course not, but I will be as long as I can. I have even had a teacher lose track of his diabetes supplies on a field trip and call me frantically about what to do.

The mother of the other child with diabetes and I hold meetings with all of the teachers at the beginning of every school year to discuss and educate them on the basics, and we train one person every year for emergencies. The other mother is available at all times and goes into the school for everything, but I have three other children and am not available to the extent that she is since my husband works out of town during the week. The school has conveyed to me that I should be "doing it like the other mom."

How do I get my son's school to take both academic and emotional needs of a child with diabetes child seriously? Isn't a public school required by law to meet my son's diabetes needs?

Answer:

It sounds as if you have been struggling to advocate for your son to help him receive the best possible education. He is very lucky to have you as his mother!

Your concerns are very serious, also very complicated, and cannot be easily answered by a few sentences over the Internet. I strongly encourage you to ask your son's diabetes team, your local American Diabetes Association chapter and/or your son's pediatrician for a referral to a psychologist with expertise in children with chronic illness. You will want to find someone (perhaps a neuropsychologist) who can help you look at the role your son's learning style/learning skills play in his academic performance versus the role his emotional reactions to diabetes play in his academic performance. The strategies and solutions you use will be very dependent upon this information.

Also, please continue working with the counselor you have to help him work through his depression related to his diabetes. Keep in mind that many children benefit from medications to address the depressed mood association with this adjustment disorder, and that your son may also benefit from a medication trial.

Finally, you may wish to speak to the members of your son's diabetes team about advocating for your child around diabetes-specific issues. It sounds as if some of the staff at your son's school have unrealistic expectations about what your son should be expected to do related to his diabetes (as opposed to his school work).

JWB

DTQ-20030603145456
Original posting 5 Jun 2003
Posted to School and Daycare

  
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Last Updated: Tuesday April 06, 2010 15:09:46
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