WELCOME TO THE OCULARMOTORAPRAXIA.ORG WEBSITE!
If you found this website because you have been just told that you or your child has Oculomotor Apraxia, you are probably worried and wondering what to expect, trying to find all the information you can, and trying to make sense of it all.
First, let me assure you, it's OK to feel this way. We all have been there. But you have come to the right place! We will try to make this journey a little easier for you. You may benefit from this website in many different ways, but first let's point out a few important notes:
- OMA affects people to different degrees. One person may be just slightly affected by it with minimal head thrusts, and no other significant side symptoms. Other children may encounter significant developmental delays, specially during the first years of life, but may be able to catch up with their peers in most everything by the time they are teenagers. Others may find a few struggles well into adulthood, specially with balance and coordination, or may struggle with performing tasks such as driving a car. Some people may encounter social and behavioral issues along the way, from just being "shy" to having ADHD, Sensory issues or even Autism (it's still debatable whether the latter ones are related to OMA). It's common to feel that you or your child may be the ones in the high end of the spectrum, however it's usually the complete opposite.
- OMA is Rare, and also a fairly new discovered condition. This means there is not much research, clinical reports or even enough people living with it to set a record straight on everything that OMA implies. Chances are that you still will have a few questions that we won't be able answer. Also, don't expect your doctor to know it all - they are too in this search for answers as we are, but this website is a step closer to get all the information we need, and to motivate doctors and researchers to learn more about this rare condition.
- OMA is often a symptom of another medical diagnosis. In some cases, OMA is a symptom of a more serious health condition, and this health condition may be the one dictating how much is your child affected, and what other symptoms your child may have. It's advised that you address your child's health condition based on the major issue, and use this website just as a reference to help with the minor symptoms. That being said, good chances are that the only diagnose you have is a "smaller/underdeveloped cerebellar vermis" if an MRI has been performed, or it's also possible that not significant brain differences have been found (idiopathic OMA). These are so far the most common cases of OMA, and the easiest ones to deal with.
- People affected by OMA are working with specialists to make this website. Some of the things you will find here, are from accounts from parents of children with OMA and adults living with OMA. Our comments and suggestions come from things that we have experienced first hand or through our children. Our hope is that the medical professionals, by seeing our active OMA community on this website, takes interest in doing more research about OMA, studies more cases of people living with OMA, and therefore more publications and information is available from the medical perspective. As of right now, we have gathered the existing information from doctors, institutes of health, researchers and other professionals who had something to share about OMA, and we have included their links and their information on this website as well. We are constantly updating the website as new information comes in.
- Be your child's best advocate. We have included a number of resources that will help your child, but nothing will do, if you are not committed to help your child yourself. The best help they will get is from you. Ask questions, ask for better support and care from hospitals and schools. Be the best support to your child. Be involved in every step of his/her development, from playing to learning. If you are an adult with OMA, be your best advocate. Get involved with OMA related projects, inspire others by your journey. Raise awareness among those around you.
Someone in your life has OMA. This means you are in for a special ride. A ride that may be filled with doctor appointments, therapists, sleepless nights, worry and doubts. But it's also a ride of infinite cherished moments, of accomplished milestones that are more rewarding because of the effort and the time invested, of discovering how strong and capable you are of beating the odds, of friendships that wouldn't have been formed if it wasn't because of OMA. Yes, you are in for a special ride, so make the best of it!
Welcome to our OMA community.