Thursday, February 9, 2012

The Costello Family

My son is 8 and attends his neighborhood school in the general education classroom in Millard. He has Down Syndrome, reflux and an immune dieficiency that requires weekly infusions. Even with the infusions he gets sick easily. Last year (2010/2011) he was diagnosed with celiac disease. Hashimoto’s thyroiditis, and had two penile surgical procedures. He has a low base temperature so if he reaches 99.3, the school is required to send him home. Additionally, his cousin committed suicide and he missed school to attend the funeral.

Everytime I got the letter, my blood boiled and added to our family anxiety. (My husband also lost his job during this time and my 80 yr old mother collapsed and was hospitalized after my nephew’s death) We had excellent support from our school and the social worker. She told us the school sends a letter with their recommendation, and she assured me that it should help. We received a letter in September, after the kids were back in school, from the DA that our case would not be pursued.

Now Ethan has several specialists he sees that require us to leave school for appts. He had undiagnosed mono for most of the first semester. He was often tardy because if he has a bad night of sleep we let him sleep in or his day at school is unproductive. He must wait 30 min after taking his first pill of the day before he can eat, so we cannot rush his morning. The earlier start is also hard for us. His sleep apnea was also diagnosed this year, to and he has been sicker than usual even with the infusions. His immunologist also believes his body is not tolerating his current medication, causing extreme fatigue, so we have taken him off and hope antibiotics will control his expected infections without hospitalization.

I don’t know how much his obvious disability played into our experience. I will say that our experience was better than most, although we did experience stress. In reading the other stories, it sounds like the schools were not supporting the people much either. Our social worker told us she believes their recommendation carries a lot of weight. Perhaps part of the problem is with schools that fail to look outside the box and support special needs.

Even with the positive outcome last year, I stress about his truancy this year. My Ethan has already missed more than 15 days, and I send him to school when my gut tells me I should keep him home The school and the social worker tell me not to worry, but it’s always possible the Court will decide to investigate my case. I think about the time and money spent on a case that is obviously going to continue.

Mary Costello
Mom to Ethan
Millard Public Schools
Omaha, NE

1 comment:

  1. Thank you for your story, Mary. I'm happy to see common sense being exercised in your family's case.

    I also appreciate your illustration of how this law increases the stress and difficulty of life when it's already hard enough. What it makes me think is, life is already difficult. A good government doesn't add to that that stress with nit-picky, fault-finding, micro-managing laws. Ironically, such laws are usually in the name of "helping" those who are ensnared, just as this law is.