Have dog, will travel

Trapper puppy

Trapper puppy

When I was 20, I was fortunate to spend six-months as a working student with an Olympic dressage rider. Because I had only ridden hunters and came with no previous dressage experience, I really wasn’t an ideal candidate, however, I’m pretty sure she was swayed by her other working student who said I was the only one that could carry two full water buckets, so I got the job. Unfortunately, I never really hit it off with my boss. After a long brutal Boston winter, I knew the exact moment when she decided to let me go. While I was repairing, or should I say patching, a fence again, she rode up to me on a horse, put her hand on her hip and watched me struggle. This lasted for several minutes. Finally, I said “do you want to tell me how you would like this fence fixed, or do you want to tell me after I am done?”.  As soon as the words came out of my mouth, I knew I was doomed. This was so disrespectful!  I was young, but there is no excuse. Even though she let me go, I do have the utmost respect for her. She was a single mom working in a tough business. At this time, the big money was with the hunters and jumpers than in the dressage discipline. With that said, any good hunter rider worth their salt has a dressage foundation. (After I had left, I learned that she had hired her German trainer’s young daughter. Word was, she didn’t work at all).  It was during the winter at this farm, when I adopted my first dog, Trapper. Continue reading

Princess and the pee

One of our favorite reads!

One of our favorite reads!

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! Continue reading

She’s no angel

IMG_1029Just 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 children could be referred to as 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. Continue reading

It don’t come easy

First impression. November, 2012. On permanent display at the Plainsboro, NJ Library

First impression. On permanent display at the Plainsboro, NJ Library

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. Continue reading

Differences; they shouldn’t matter

Jess ready for Karate

Jess ready for Karate

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. Continue reading

Voiceless But Still Talking; Looking back

It is true, the best way to understand someone is to walk a mile in their shoes. In our case, one week in October 2013, I did not speak. My only communication was through the App Speak For Yourself (SFY). Not until the challenge had begun, did I realize that it was AAC Awareness month. I do not believe in coincidence.

Having a week of immersion allowed me to get a better understanding as to how my daughter, who has Angelman Syndrome, has to navigate through an AAC device. This was the hardest yet most rewarding week I’ve ever had!  It didn’t take me long to realize how many assumptions I had made. I wish everyone could/would do this challenge. I guarantee that if you do, you will walk away with a new appreciation of how difficult it is to be non-verbal in a verbal world. If you can’t commit to a week, do this for a weekend, a day or 12 hours.   We learn language through immersion and using a device is not much different than speaking with your voice. You need to use aided language. Your part is to model, model model.  If you had thoughts that all you had to do was hand your child an AAC device and they will magically talk, think again.  This is a team sport and everyone has to participate. Continue reading

There’s no such thing as too old.

We experienced every possible reason, no, I need to say, every possible excuse as to why our daughter could not use a high-tech AAC device. Today’s post by Speak for yourself sounds like our story. What I want to emphasize is “your child is never too old to learn”.  You may have to change their way of thinking. You will have to change your way of thinking too.

During the seizure years, Jess learned at a very slow rate. It was very difficult to watch her peers reach milestones, much less watch younger children do all the things she couldn’t with ease. Continue reading

SFY: the first two weeks

Getting the iPad was the first step. Deciding on the App Speak for Yourself was a no brainer. The learning process never ends.

February, 2012,

The first week we had the iPad, it was obvious that the physical set up was not working. Jess was not having much success with the iPad when it lay flat.  She needed a stand and one that didn’t require too many steps to set up.

I learned even more the morning the iPad didn’t make it into her backpack for school. There is nothing more informative than showing up when least expected. It was at this time, I saw that not only did we need a stand, but the para didn’t know how to turn the iPad on, much less put it in guided access (which prevents Jess from leaving the program or her from re-programming). Now I’m starting to panic. We have been down this road before.  It does not work to have someone teach language* when they themselves are learning as they go. Continue reading

And then there were the seizures

1993 –

When Jess was 18 months, I saw her first seizure. It lasted for 5-10 seconds, her body stiffened. When I asked our neurologist if this were a seizure, she dismissed me and said I didn’t know enough to diagnose. Much later, I learned that these were tonic seizures. When Jess was in her late twos, everyone thought she was falling down because of her ataxic gait, but what we were seeing were atonic seizures. We were also daily witnessing absance seizures.

Absance seizure, hepped up on Depakote Fall, 1995

Absance seizure,  Fall, 1994, before she was diagnosed with epilepsy.

I did express my concerns with our neurologist about what I was seeing, however, at this time, with this doctor, it isn’t a seizure until the doctor sees the event or records it on on EEG. Continue reading

Getting school on board

December 27, 2012

Immediately after our session with Heidi, I contacted our school case worker. She was very supportive. The school wanted a presentation before they would make a decision. After it was approved, we then had to wait for school to figure out how to get an iTunes account so they could purchase the SFY App.  I guess, up until this time, school had only used dedicated devices. We were the first in our school system to use an App. While this was in process, school scheduled a group training (which included other parents) on SFY  This was held on January 28, 2013. However, it wasn’t until Friday, February 5th that we got the iPad in our hands.

We were excited beyond words to get started!  No pun intended, ha ha… Jess explored her new voice. During that first hour of exploring, I stepped away to let the dog in, and within that split second, Jess had deleted the SFY app! In a panic, called Heidi. She was able to walk me through how to reinstall from the cloud (thank goodness).  This was when I learned about the invaluable feature guided access. Continue reading