Back story

This is our short story about our long road to night-time continence. For most parents, there’s an expected time frame, but this is often not the case when your child has special needs. Sometimes there are issues to be solved before beginning, but lack of expectation/understanding is a bigger part of the problem.

When Jess was a toddler, she developed urinary tract infections. I’ve never heard of this for a child so young? We learned that one of her kidneys had not developed normally. The urologist prescribed a low dose of Bactrim. If we could keep the kidneys from getting infected, then it was possible for her kidney to recover and grow properly. 18-months later, the ultrasound showed a healthy, fully functioning kidney! [Read more…] about Princess and the pee

Just because my daughter has Angelman Syndrome does not mean I refer to her as an angel. It is a popular term used in the AS community, but not one I’m keen on. For those that don’t know, Dr. Harry Angelman identified children with similar symptoms thus the reference. I guess it could be worse, instead of angels AS was referred to as dancing puppets. AS children tend to be sweet-natured people, but this does not make them angels. As time goes on, I believe that underneath Jess’s AS diagnosis, there is a typical person. Someone who has a full array of emotions and someone who is clever. Jess can be strong-willed, restless and very sneaky too. I guess for some people, angel is a term of endearment, but long ago, I realized this did not fit her. Maybe this is because we didn’t get the AS diagnosis till she was 13. Hindsight makes me believe that not knowing was to our advantage, to not be defined by a list of traits. Just like when we read a horoscope, it uncannily resembles our day. The same goes for generalities associated with AS. There is truth here, but it is a matter of how much we accept this truth and how far along we are willing to go. [Read more…] about She’s no angel

My intent was to post a few of Jessie’s paintings. As I started to write, I realized that there was more to the story that should be shared. As all stories go,….. this all started because one man saw the spark in her eye, and her life forever changed. He researched Angelman Syndrome and found no helpful data to suggest that this undertaking would be successful. This was a challenge and he was a gambling man. Little did he realize that she would become one of his toughest clients.  A strategic plan was set in place beginning with building a foundation*. From this point on, the bar would be raised, Jess would be expected to listen, focus, communicate and attempt new things put in front of her.  Up until now, Jess had been passed along. She had learned that if she didn’t do her work, someone would do it for her. Not only did this erode her self esteem, but she got away with it. The mistake people make is that Jess is not simple, but is a complex young lady. She learned to deceive and manipulate people with her smile and easy going personality. This had served her well. at least she thought so. [Read more…] about It don’t come easy

As much as people like to stand out, they only go far enough where they are still in reach of other people. They want to be unique, bot not so much so that no one identifies with them.

When Jess was in elementary school, she made friends with a younger boy. Jess was known as the girl that couldn’t walk well or talk and Jake* was the boy that walked like a sailor. His mom was concerned that he wouldn’t fit in because he wasn’t like any other child that she had known. Jake had a form of SMA (spinal muscle atrophy,( If you did an ice bucket challenge, this is under that same umbrella. In fact, did you know the 2nd leading cause of death for children under the age of 2 is SMA?). In Jake’s younger years, he was able to walk, play baseball, attend Karate and swim. In all ways, he was a typical young boy except for this one thing that made him unique. Often times, his mom would share her fears. She wanted him to fit in and not be different. She wanted to protect him from the hurtful things that people say when you have a disability. The best advice I could give her at the time was “take his lead. If he is not concerned, then you shouldn’t be either”. As much as she wanted to protect him from other people, it was unwarranted because he was well equipped to protect himself. [Read more…] about Differences; they shouldn’t matter