Accepting advice and trusting the professionals in my Angel’s life
Good judgment, expertise are part of raising a child with Angelman syndrome
When advocating for a child with Angelman syndrome, it’s not always easy to let up on the reins and trust the professionals. But I’ve come to rely on the expertise of my 13-year-old Angel’s medical providers and her team at school. This trust enables me to make adjustments for Juliana that improve her quality of life.
Of course, before I accept advice about my daughter, I weigh it against the relationship or the connection to us. Our doctors are vetted through referrals, for example, and several of Juliana’s physicians have cared for her since she was an infant. Sometimes, my husband and I chuckle when people who don’t know us well or even understand Angelman syndrome attempt to give us suggestions or medical advice. I know those people mean well, but we’ve learned to tune out the noise.
In addition to Juliana’s doctors, her teacher and therapists are truly invested in her well-being. That makes it easy to trust their advice and act upon it.
Partnering with us
A few years ago, Juliana’s teacher made a bold suggestion during an individualized education program (IEP) meeting. She felt Juliana was ready to wear panties and not pull-ups to school. Juliana rarely had accidents and had been practicing trip training toileting since she was 4. However, I was concerned about taking such a big step. But I put those worries aside and listened to her teacher.
My hesitations stemmed from what I thought could go wrong, not the facts. Her teacher had a log of her toileting, and the data were consistent with this big change. That small adjustment was a huge boost to Juliana’s comfort and confidence.
Although we haven’t had Juliana’s IEP review for this year yet, her current teacher has made some suggestions. I recently made some changes to Juliana’s diet and her school lunch. Juliana’s teacher, Ms. Corn, let me know that Juliana was irate with her because of one of the food choices.
I was certain I had picked a great substitute, but Ms. Corn confirmed that the selection was a huge miss. I know Ms. Corn appreciates it when parents respond to feedback she gives. So as much as I wanted to give the lunch item another try, I let it go. I decided that taking Ms. Corn’s recommendation to heart was better. In addition, I want her to know that her opinions are heard and appreciated.
As I raise my daughter with Angelman syndrome, I’m smart enough to realize that this isn’t something we can do alone. There is comfort in knowing that we have a network of people partnering with us that have Juliana’s best interests at heart.
Note: Angelman Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Angelman Syndrome News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Angelman syndrome.