Parents of Children with Special Needs Have Needs, Too | Debra Vines | TEDxOakParkSalon

I was married to the perfect partner, had an amazing child, and I had a great career with what seemed like an unending ambition and drive. No serious worries, no setbacks, but then I became pregnant again unexpectedly. To tell you the truth, I really didn't want this pregnancy or to start this journey all over again. The doctor told me that the pregnancy was high risk, that this baby growing inside me was at an increased risk of health problems before, during, and yes, after delivery. Becoming pregnant this second time had snatched my ideal life right from under me, except the possibility of what was happening inside my womb was even more gut-wrenching, and me and my husband both were petrified. I didn't know at the time that having to raise a special needs child would present questions that I never fathomed and take me on a journey to find the answers that I needed to survive as a mother, a partner, and even a business owner. My prior pregnancy was normal, and my first-born son, Mark, was born perfectly healthy with no complications. I think my expectations of pregnancy and childbirth was I was healthy, healthy, therefore my baby would be healthy. Researchers have found that differences in the brains of babies born 27 weeks who were later diagnosed with autism, but medical professionals didn't know this at the time when my Jason was born in the 80s. So I delivered Jason at 24 weeks, two pounds and two ounces. He was so little. He remained in the hospital for three months. Meanwhile, I felt isolated at home as the anguish of postpartum set in. The ideal our society perpetuates is for a mother to birth a child, right, and allow that child to give her a reason to live. However, birthing this child honestly felt exhausting, and I sometimes felt like dying. Jason's challenges then didn't end with just being a preemie. We noticed developmental issues in Jason around 16 months. He wasn't walking, talking, or meeting other developmental, crucial developmental benchmarks. We went to various doctors, yes, soliciting second, third, and even fourth opinions. Finally, my Jason was diagnosed with autism in 18 months. My husband and I were unsure what this would mean for our child, or even for us. At this time, the only thing we knew about autism was the movie Rain Man, right? You all know about the movie Rain Man, but was my child going to be a card counting savant in Vegas, nonverbal, or all of the above? So in the 80s, autism was believed to impact only one in 10,000 people, and very little was known about what we know now as the spectrum. In fact, American psychiatrists had just updated their diagnostic manual to list autism as a distinctive diagnosis, and described it as pervasive developmental disorder distinct from schizophrenia. It describes symptoms of autism as a lack of responsiveness, severe impairment in communication and language, and bizarre responses to their environment. Research on treatment was minimal. We were doomed. So as Jason grew, so did his challenging behaviors. Oh my God, he had tantrum after tantrum, random outbursts when he was in unfamiliar places, and even an instance when his normalcy or routine was tampered with. Now we know about 40% of autistic children are nonverbal, or struggle with speech, and my Jason is of that 40%. So though he solely found his way, found ways to communicate, he spent most of his younger life just screaming, but not able to talk to me. During Jason's earlier years, my husband worked nights, and my family lived away, so I was left to care for our son virtually on my own. I sacrificed my career, my personal life to navigate Jason's life as a growing boy with special needs. And as the parent of a developmentally challenged child, I didn't have anything for myself. I didn't have my own time. I didn't have control. I felt alone, frustrated, and yes, overwhelmed. So according to a study published by Family Systems and Health Journal, mental health issues are more common among parents of differently abled children than persons of typically developing children. Not surprisingly, parents of kids with special needs report that it's difficult to seek support or treatment, or even recognize that they need help with their mental health. Yes, their mental health. Between doctor visits, specialist appointments, endless researching, and other caregiving responsibilities, it's no wonder we run out of time or money to take care of ourselves as parents. We need answers, but we barely have the energy to formulate the questions. Barely have the energy. No matter where I turned, I didn't find answers or the support I needed, especially in my under-resourced neighborhood. But I did find drugs. Through moments of weakness and not having the ability to cope with what I couldn't control, I began to use cocaine. My husband didn't have the answers either. Time after time, I would ruin our family's finances to feed my addiction, but he wouldn't give up on me. I'd always run back to the drugs, thinking that they would numb my pain, the overwhelm, the burden of having so many questions and so few answers. Now, don't get me wrong. I was both a functioning addict and a functioning mom. The need to take care of my family had never left my mind, but I was only willing to do it on my terms with drugs. Even so, I wanted answers, but resources remained limited. Once I collected discarded computer parts and actually built a computer so I would have a way to research autism, yes, I was that desperate. I was so desperate to get high, but even more desperate to learn about what Jason was experiencing as an autistic child. I searched and I searched for information, but I also searched for my next high. I remember how fast time went, as fast as the actual high itself. The high I chased all day long. Raising Jason, I was putting all my energy into my son, into my next highest well. Jason didn't have no idea how sick I was or the irony. The world saw him as the special needs child with issues, but I had even more demanding special needs, even more demanding special needs. The overwhelming feeling of raising a child with such a painful imperfection drove me to obsess over something I couldn't control or the thought I could control, my drug use. But the irony continued as my life spiraled out of control. I began stealing to obtain drugs, landed in jail a few times. The guilt began to wear on me as much as the crack. What few friends I had left, poof, faded away. Yes, I lost faith. I lost faith. I remember wanting to know why God felt I was strong enough to handle a special needs child. And I wondered was I, I wondered if this was something that I deserved. I felt like the drugs restored my control. Yes. Until I, until I couldn't control my addiction or my actions. And it became harder to help Jason when I couldn't even help myself. I despised myself. I remember the very last time I was arrested. I didn't care about the amount of time that the judge wanted to give me. All I knew said I was exhausted. So tired. I was tired of waking up, thinking about getting high and ended my day thinking the same. I wanted something different for myself and for my family. So while I was in jail, I turned my life around. Yes, I did. Rehab was difficult though. Looking at myself in the mirror was burdensome, believe it or not. But the thought of being a healthier me for my, for me and my family motivated me. I realized I had to love myself in order to love and properly raise my children. I regarded this process like college. I made sure I participated in every single group session, attended my individual sessions and completed all treatment requirements. I wanted to be better, stronger. I even decided to stay an additional three months past the treatment center plan to send me home to make sure I could kick this addiction permanently. It wasn't until I witnessed Jason reach milestones in his development that I realized how much I had taken for granted. It was Jason's determination that taught me how to heal and strengthen myself. It was Jason's journey as a person with a disability that helped me embrace my ability. My patience was fallible, my endurance was flaky, yet there was Jason taking out, taking the world as a young man eager to make his own sandwich, take out the garbage and order his own milkshake. Fast forward to Jason today as a grown man, taller than me with dreams that are as wide as his beautiful eyes and smile. I must be honest, I underestimated Jason just as I underestimated myself, not understanding the purpose and possibility of my being. You can value your mistakes just as you can your triumphs. It is when I embrace my worthiness as a person, as a mother and as a partner that I began to heal enough to care for Jason and myself. So I had an epiphany. I realized that so many moms with special needs children have little to no support in their community. It is resulting in so many of us hating ourselves, letting ourselves go, not wanting to face the realities of what we deemed as an imperfect child. Raising Jason has slowly revealed my life's missions to provide the answers that I so achingly searched for to other parents of children with special needs. So I started the answering to create resources and to provide support to parents so they won't have to suffer as I did. We've established groups to provide information or resources and create dialogue for discussion and support for people with special needs. We also offer family and peer events to empower people with disabilities to practice acceptable public behaviors and hone socialization skills. Did you know autism now impacts 1 in 54 children? Yet traditional parenting guides or resources don't offer the answers to the plethora of burning questions a parent has when their child is on the spectrum. So being a mother of a special needs child allowed me to take a journey to provide answers where there were none for me. Although there are still more questions than answers, I hope that this ignites a conversation to families and to help families like mine that have been that families like mine live enriched and happy lives. Thank you for your time.