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 phantom 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 firstborn 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 2 pounds and 2 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 to 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 the listening 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 even for us at this time the only thing we knew about autism was the the movie rayman right you all know about the movie rain man but was my child gonna be a card counting savant in vegas non-verbal or all of the above so in the 80s autism was believed to impact only one in 10 000 persons but 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 and 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 a routine was tampered with now we know about 40 of autistic children are non-verbal or struggle with speech and my jason is of that 40 percent 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 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 is 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 fan drugs moments of weakness and not having the ability to cope with i couldn't control i began to use cocaine my husband didn't have the answers either time after time i would ruin my 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 to 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 remain 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 high as 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 demand and special need even more demand than special need the overwhelming feeling of raising a child was 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 what god felt i was strong enough to handle a special needs child and i wonder 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 despise 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 he 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 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 to 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 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 white 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 of 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 search for to other parents of children with special needs so i started the answering to create resources and 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 home socialization skills did you know autism now impacts one 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 the 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 and 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 you

Channel: TEDx Talks

Views: 47,496

Keywords: Addiction, Disability, Drugs, English, Life, Mental health, Parenting, Recovery, TEDxTalks

Id: AC9Q3IJeH1w

Length: 13min 9sec (789 seconds)

Published: Thu Jul 29 2021