AUTISM and EPILEPSY

I sit here this evening beginning to blog, my mind is full of words, yet my soul is full of so many emotions that I don’t know which one to begin with…..I look at my sweet little boy that wants so much to please me and as he tries to communicate, he cannot express himself the way that he wants and needs to. This has been a rough 14 months for me personally. I have had to come to terms with the word AUTISM, not that I didn’t know it, but to acknowledge it. As I hear this word being said, a rush of tears begin to fill my eyes…..My heart aches, my soul begins to break from my inner core….I feel HELPLESS….I feel LOST……My heart feels broken and shattered…..I cannot express how I truly feel and that brings me to another emotion, ANGER…..My chest begins to get tight and my mind fills with so many words…..and then the emotion of GUILT sets in……

Epilepsy and Autism…….two words, two medical diagnosis, and two conditions that have so many unknowns. You see I thought, “Well I am so lucky that my seizures are under control and that I really don’t need to worry about epilepsy. Who cares what causes the seizures as long as I can take my medicine and live seizure-free, right?” I was so uneducated……I find myself so uneducated about Autism….Where do I begin? Who do I listen to? Where do I go for help? I find myself running from one person to another seeking out answers. The reality is that sometimes the answer is, “We just don’t know”. How depressing and helpless those words are to hear.…How can we not know? How do you help a little boy that is trying to find his way in this world, but cannot communicate all that he is thinking and feeling? This is a dagger to my heart and a reminder that I took a seizure medication that has now passed the side effects of my epilepsy on to Samuel. I find myself asking about other children that are older than Samuel that are on the Autism Spectrum….What were they like when they were younger? Who did you turn to for help? and the list goes on with so many questions……

This journey of life with Autism and Epilepsy can be so heartbreaking…….Yet, I try to find that silver lining wherever I can. I begin to settle into, “Man, we are making such great progress” and then BAM I get hit in the face….The Autism has made a “STEALTHY” move. Samuel takes two steps forward and then one step back, so I try to focus on that step forward. People tell me all the time….”Brandy, you are so strong. I don’t see how you do it.” The reality is that I have my times of weakness, sadness, tears, and despair…..And I must say that I am fortunate to be able to share them with my best friend and the love of my life. I just want to say thank you for your understanding, patience, and unconditional love while I face the words AUTISM and EPILEPSY. I hope that my heartache, anger and feelings of helplessness, loss, a broken and shattered heart, and guilt will be used to push me in the direction of CHANGE FOR EPILEPSY AND AUTISM. I look forward to seeing my sweet son, Samuel, and I as we face AUTISM and EPILEPSY in the next year, 6 years, 16 years, 26 years and beyond………All my love to everyone as you are on your journey with epilepsy, autism. or other neurological disorders.