The mission of the Angelman Syndrome Foundation is to advance the awareness and treatment of Angelman syndrome through education and information, research, and support for individuals with Angelman syndrome, their families and other concerned parties. We exist to give all of them a reason to smile, with the ultimate goal of finding a cure.
Angelman Syndrome is so rare, while there are two foundations that supports the Angelman Community, the birth of our AS Journey Cross Country Camper Awareness is to expose the rarity of this condition. We know that in the grand scheme of things our efforts are miniscule but if there are few people be made aware sees it, it is a worthy cause.
We started our awareness with meeting an Angelman Syndrome Family, and as we are wrapping up the last leg before hitting home, we are meeting an Angelman family in Indiana…
A family of 4 — Adam, Amanda, 6 years old twins Baden and Jackson are from Fishers, Indiana. We initially met Adam and Amanda during our 1st Annual Awareness in 2019. It was also our 1st time attending the ASF Family Conference which was held in Kentucky. Adam is a nurse while Amanda is the current CEO of Angelman Syndrome Foundation {ASF}. When you met them in person, you will see the kind of hearts they exude. Even before we can tell them our struggles, even before introductions, the first thing they’ll utter is … “how may I be of help?” In the many communication I have with Amanda, she is never leaving the conversation without making you feel inspired, motivated and energized. She has a big heart for the AS community.
What I love about Amanda is not because of her affiliation to the foundation but the heart she displays when she meets Angelman Syndrome family. If you see her in action, she has a selfless heart for the AS families. In my many observation, in my personal chat with her, her leadership at the ASF … she always provide current resources whether you need it or not. The foundation she leads create programs to provide grants, financial support on items that an Angelman child might be in need of that is not covered by insurance. The ASF partners with other professionals for any mental support they might need as caregivers. When there is new-family-AS-diagnoses, she will be the 1st to reach out, to network, provide resources, but most importantly, she provides parent-to-parent support to anyone who needs it.
Meeting the whole clan is a scene that is very typical for Angelman Syndrome socialization. Before we arranged the meeting, we’ve talked about approach, expectations and routine. Approaching an AS child who isn’t familiar with you can lead to a potential hurt — due to lack of expressive language, they might hit, swing or attack you because you are unfamiliar. Visiting an Angelman family can be long and or short, you never know how each AS child handles socialization. If and when each family visits anyone, be prepared that they might dash out early for bedtime and medication routine. It is not that we don’t like to visit, even if we have dedicated help, there are certain things our kid(s) might prepare specific person to administer meds and or putting them to bed.
It was an early part of the evening when we arrived at their house. We made it light, no kitchen production as the Moore ordered pizza to share. As they invited us inside their home, Matt was profusely shaking his head no! His anxiety is heightened and he pretended to gag. Thirty minutes before reaching at their address, we have given Matthew an anti-nauseous medicine to combat gagging caused by anxiety. When his mind project this kind of thought, Mike and I would never take the chances of letting the elephant in his head peek into the window. You can tell that Adam and Amanda are pros at being so flexible — instead of bringing the get together inside the house, party in the front lawn it is!!! We put all the props … lawn chairs, kid’s picnic table, bubble machine and extra toys … and for a short period, Matt and Jackson cooperates while Baden is in and out the house seeing us here and there. We are trying to set footing on our conversation and we can tell that Matt and Jackson have the same “anxiety-driven-tendencies”. While Matt’s trigger is Dad, Jackson is his Mom. When Mike responds to the conversation, Matt would flares up with a scream and if Amanda focuses her attention to us, Jackson freaks out and starts crying. It was literally less than 30 minutes and the two AS boys are getting more restless by the minute so the two Dads, as best as they can, redirected their focus to the two boys; Adam took Jackson for bath time {his evening routine}, while Mike drove few rounds around the neighborhood so Amanda and I have few minutes of uninterrupted visits. I’ve shared about our recent medical issues and how the quality of life Mike and I have been having the last 1 ½ years due to Matt’s behavior.
Our visit lasted less than an hour and although it was very short, we’ve exchanged the most crucial topic we wanted to talk about. I’ve reached out to Amanda for resources regarding anxiety and behavioral issues and to help us with a contact that can conduct professional assessment on Matthew’s anxiety. While our struggle might not be for everyone in the AS community, but realizing that we are not alone on this journey gave us perspective. There are lots of ups and down with Angelman Syndrome but the pool of resources and support we get from the AS Community is such a blessings to ease the burden of walking alone.
