It has been a challenge for me to keep my mouth closed for an entire week, but I felt that sharing this on International Angelman Syndrome day was well worth the wait. Enjoy!
It has been just over four years since my firstborn son was diagnosed with Angelman Syndrome. We escaped to Canada the day following “the phone call” for a little family time. We weren’t surprised by the diagnosis, per se. As his mother, in my heart I knew we were facing something a bit scary months before we even began the search with geneticists. As we sat in the hotel room with snow falling outside the window, we read through the packet of info that was given to us about AS. My son laid on the hotel bed playing with his 2 year old feet and doing his best to escape the confines of his dad. I read through the darkness of the information, desperate to find light, any glimmer I could muster. What I came up with was “The ID group… may speak up to 50-60 words.”
That…that was my hope. Coming from a writer, 50-60 words, I felt limited to 0 words — It was barely a light at the time.
We jumped in straight away with his speech therapist, AAC specialist, and Spec Ed therapist. We were introduced to the Big Mack.
The Big Mack is a device that allows an individual to communicate a single record-able message, up to 120 seconds. We used it to teach “more”, mostly at mealtimes and play times with highly motivating food or items. Marshmallows will always have a fond place in my heart, these motivated my dear boy to do so many of the things we feared he would never reach. They are no longer a part of his diet due to the ketogenic/low glycemic route we have taken for epilepsy, but that is for another post.
The Big Mack was great, don’t get me wrong, it was our starting place. But I longed to communicate, to know his thoughts, and if he was tired or hungry without always assuming his needs. We moved on to devices that offered four requests or responses. Then we moved to PODD, which stands for Pragmatic Organization Dynamic Display. PODD is a system of communicating that many families with Angelman Syndrome used and highly recommended. While at a conference, we attended seminars on how to use PODD with our children and why it was superior to other options. We came home, told our speech therapist about it and began the process of printing, laminating, and cutting over 50 pages of icons. We modeled this book of icons for months and slowly but surely, our boy started to gain interest and grow excited when it was pulled out of the bag to “play with”.
After we moved back to South Bend, we started therapy services at the Children’s Therapy Center where we met our current speech language pathologist (SLP). She has been one of the most hope-filling, life-giving, loving people to have been placed in our lives. After months of working with her, she suggested we use a program called LAMP, which stands for Language Acquisition through Motor Planning. We were hesitant because of all the information we had been given about how useful PODD was for AS, but after learning that the school system was familiar with this AAC (augmentative and alternative communication), we decided to give it a try.
My loving parents purchased the device that my son used this program on. We modeled for months on end, often feeling frustrated that he wasn’t listening or paying attention. He was mostly interested in turning it off or pushing random buttons. I feared that he would not be interested in communicating in this way and often felt hopeless and desperate. It was a lonely fear, one that you can’t very well convey to another person (unless they have experienced it, of course).
Fast forward to 2016.
We began to give our son more freedom with his device, letting him “play with words”, hearing the sound of them on the voice output and put sentences together that we attempted to bring to life for him. (for example, if he repeated the word “ball” over and over, we found a ball).This showed him that the majority of the time he was saying “ball” that was NOT what he wanted to be saying. He quickly learned to explore other words. We began sending his device to preschool with him. This turned out to be a big learning curve for many people involved with him. I worked hard at giving advice on how to use it within the classroom, set up therapy conferences where our SPL would come into the classroom for a help session, and talk it up as much as I could. You see, our son was using this device at home appropriately 50% of the time, but was not as interested in the classroom. I have my theories as to why (other stimuli, children, setting, etc), but I persisted.
As we began Kindergarten this past fall, our son was given an aide to be with him throughout the day. She is a second mother to our sweet son. I could not have picked a better woman to spend 5+ hours a day with our boy. His speech took off! He began using the device appropriately nearly 95% of the time. Now, I’m not suggesting he uses it every single times he wants to communicate, but when he does use it, it is done properly. This is a big deal.
The BIG news!!
Just last week, after a year of paperwork, gaining a disability waiver, spending hours on the phone with medicaid and insurance companies, and lots of prayers – our boy with given a dedicated speech communication device. A device costing over $6,000! I stood and cried in the kitchen as I opened the approval letter and later as I opened the device a few weeks later. Looking back to Rochester and being made aware that these devices were a thing, it never crossed my mind that we would be here a few short years later, opening our own!
I cried not because insurance finally approved it or because he was given a waiver that made it a possibility. I AM thankful for those things, please know that. I cried because my boy, who “may” speak 50-60 words is well over that limit. That he is in a place where this device is a necessity for his learning and growing. That he is motivated enough to seek communication.
No greater words have been spoken by a computerized voice than “hug mom”, “facetime nana”, “cry, Maeby” as he tries to get Maeby to fake cry, “dad” as we pull up to pick up his dad after work, and “baby” (in response to his baby brother needing assistance).
There is no stronger boy. Happy International Angelman Syndrome Day.
AS, you have changed our lives for the better.
I should mention that the device my parents purchased was running the same program his new accent is also running. The accent just allows for a life time of growth and fun interactive features. At this point in the process given his level of success, we see no reason to change programs for the foreseeable future (if ever).