Full transcript
0:05i was married to the perfect partner
0:08had an amazing child and i had a great
0:12career
0:13with what seemed like an unending
0:15ambition and drive
0:17no serious worries no setbacks but then
0:20i became pregnant again
0:21unexpectedly to tell you the truth
0:25i really didn't want this pregnancy or
0:27to start this journey all over again
0:30the doctor told me that the pregnancy
0:32was high risk
0:34that this baby growing inside me was
0:37at an increased risk of health problems
0:40before during and yes
0:41after delivery becoming pregnant this
0:45second time had snatched my
0:47ideal life right from under me except
0:50the possibility of what was happening
0:52inside my womb was even more
0:54gut-wrenching and me and my husband
0:58both were petrified i didn't know at the
1:01time that having to raise a special
1:02needs child would present questions that
1:04i
1:05never phantom and take me on a journey
1:08to find the answers that i needed to
1:10survive as a mother
1:12a partner and even a business owner
1:15my prior pregnancy was normal and my
1:18firstborn son mark
1:19was born perfectly healthy with no
1:21complications
1:23i think my expectations of pregnancy and
1:25childbirth was
1:27i was healthy healthy therefore my baby
1:30would be healthy
1:32researchers have found that differences
1:35in the brains of babies born
1:3627 weeks who were later diagnosed with
1:40autism but medical professionals didn't
1:42know this at the time when my jason was
1:44born in the 80s
1:46so i delivered jason at 24 weeks 2
1:49pounds and 2 ounces he was so
1:50little he remained in the hospital for
1:53three months
1:55meanwhile i felt isolated at home
1:59as the anguish of postpartum set in
2:02the ideal our society perpetuates is for
2:06a mother to birth to child right
2:08and allow that child to give her a
2:10reason to live however
2:12birthing this child honestly felt
2:14exhausting
2:16and i sometimes felt like dying
2:21jason's challenges then didn't end with
2:23just being a preemie
2:25we noticed developmental issues in jason
2:27around 16 months he wasn't walking
2:30talking or meeting other developmental
2:33crucial developmental benchmarks we went
2:36to various doctors yes
2:38the listening second third and even
2:40fourth opinions finally
2:42my jason was diagnosed with autism in 18
2:45months
2:46my husband and i were unsure what this
2:48would mean for our child even for
2:50us at this time
2:53the only thing we knew about autism was
2:55the the movie rayman right you all know
2:57about the movie rain man
2:59but was my child gonna be a card
3:01counting savant in vegas
3:04non-verbal or all of the above
3:07so in the 80s autism was believed to
3:10impact
3:11only one in 10 000 persons but people
3:14and very little was known about what we
3:16know now as
3:18the spectrum in fact
3:21american psychiatrists had just updated
3:24their diagnostic manual
3:26to list autism as a distinctive
3:28diagnosis
3:30and described it as pervasive
3:32developmental disorder distinct from
3:34schizophrenia
3:36it describes symptoms of autism as a
3:39lack of responsiveness
3:41severe impairment and communication and
3:43language and bizarre responses to their
3:45environment
3:47research on treatment was minimal we
3:50were doomed
3:52so as jason grew so did his challenging
3:55behaviors oh my god he had tantrum after
3:57tantrum
3:58random outbursts when he was in
4:00unfamiliar places and even
4:03an instance when his normalcy a routine
4:05was tampered with
4:07now we know about 40 of autistic
4:10children are non-verbal
4:12or struggle with speech and my jason is
4:15of that 40 percent
4:18so though he solely found his way
4:22found ways to communicate he spent most
4:26of his younger life
4:27just screaming but not able to talk to
4:30me
4:32during jason's earlier years my husband
4:34worked nights and my family lived away
4:36so
4:37i was left to care for our son virtually
4:39on my own
4:41i sacrificed my career my personal life
4:44to navigate
4:45jason's life as a growing boy with
4:47special needs
4:49and as the parent of a developmentally
4:51challenged child
4:52i didn't have anything for myself i
4:55didn't have my own time
4:57i didn't have control i felt alone
5:00frustrated and yes
5:02overwhelmed so according to a study
5:06published by family systems and health
5:08journal
5:09mental health issues are more common
5:12among parents of differently abled
5:14children than persons of typically
5:15developing children
5:18not surprisingly parents of kids with
5:20special needs report that it's difficult
5:23to seek seek support or treatment
5:27or even recognize that they need help
5:29with their mental health yes
5:31their mental health between doctor
5:34visits
5:35specialist appointments endless
5:37researching and other caregiving
5:38responsibilities is no wonder we run out
5:41of time or money
5:42to take care of ourselves as parents we
5:45need answers
5:47but we barely have the energy to
5:49formulate the questions
5:51barely have the energy no matter where i
5:54turned
5:56i didn't find answers or the support i
5:58needed especially
5:59in my under resourced neighborhood but i
6:02did fan drugs
6:05moments of weakness and not having the
6:07ability to cope with i couldn't control
6:09i began to use cocaine
6:12my husband didn't have the answers
6:13either time after time
6:15i would ruin my family's finances to
6:17feed my addiction but he wouldn't give
6:19up on me
6:22i'd always run back to the drugs
6:24thinking that they would numb my pain to
6:26overwhelm the burden of having so many
6:29questions and so few answers
6:31now don't get me wrong i was both a
6:34functioning addict and a functioning mom
6:37the need to take care of my family had
6:39never left my mind
6:40but i was only willing to do it on my
6:42terms
6:43with drugs even so i wanted answers but
6:48resources remain limited
6:52once i collected discarded computer
6:53parts and actually built a computer so i
6:55would have a way to research autism yes
6:57i was that desperate
6:59i was so desperate to get high but even
7:02more desperate to learn about
7:04what jason was experiencing as an
7:06autistic child
7:07i searched and i searched for
7:10information but i also searched for my
7:12next high
7:15i remember how fast time went as fast as
7:17the actual high itself
7:19the high i chased all day long raising
7:22jason i was
7:23putting all my energy into my son into
7:26my next high as well
7:29jason didn't have no idea how sick i was
7:32or the irony
7:35the world saw him as the special needs
7:38child with issues but i had
7:40even more demand and special need even
7:43more demand than special need
7:46the overwhelming feeling of raising a
7:48child was such a painful imperfection
7:50drove me
7:50to obsess over something i couldn't
7:52control or the thought
7:55i could control my drug use
7:59but the irony continued as my life
8:02spiraled out of control
8:04i began stealing to obtain drugs landed
8:07in jail a few times
8:09the guilt began to wear on me as much as
8:11the crack
8:13what few friends i had left poof
8:17faded away yes i lost faith
8:20i lost faith i remember wanting to know
8:24what god
8:25felt i was strong enough to handle a
8:27special needs child
8:29and i wonder was i i wondered
8:33if this was something that i deserved
8:37i felt like the drugs restored my
8:39control
8:40yes until i until i couldn't control my
8:44addiction
8:45or my actions and it became harder to
8:48help jason when i couldn't even help
8:49myself i despise myself
8:53i remember the very last time i was
8:55arrested
8:56i didn't care about the amount of time
8:59that the judge wanted to give me
9:00all i knew he said i was exhausted
9:04so tired i was tired of waking up
9:07thinking about getting high and ended my
9:10day thinking the same
9:11i wanted something different for myself
9:13and for my family so i was in jail i
9:15turned my life around yes i did
9:18rehab was difficult though looking at
9:21myself in the mirror
9:22was burdensome believe it or not
9:25but the thought of being a healthier me
9:27for my for me
9:29and my family motivated me
9:32i realized i had to love myself in order
9:35to love and properly raise my children
9:39i regarded this process like college i
9:41made sure i participated in every single
9:43group session
9:44attended my individual sessions and
9:46completed all treatment requirements
9:49i wanted to be better stronger
9:52i even decided to stay an additional
9:55three months
9:57past the treatment center plan to send
9:59me home to make sure
10:00i could kick this addiction permanently
10:04it wasn't until i witnessed jason reach
10:06milestones
10:08in his development that i realized how
10:11much i had taken for granted
10:14it was jason's determination to taught
10:16me how to heal
10:17and strengthen myself it was jason's
10:21journey
10:22as a person with a disability that
10:23helped me embrace my ability
10:26my patience was fallible my endurance
10:28was flaky yet
10:29there was jason taking out taking the
10:32world as
10:33as a young man eager to make his own
10:35sandwich
10:36take out the garbage and order his own
10:39milkshake
10:42fast forward to jason today as a grown
10:45man taller than me
10:47with dreams that are as white as his
10:49beautiful eyes and smile
10:51i must be honest i underestimated jason
10:54just as i
10:54underestimated myself not understanding
10:57the purpose and possibility of my being
11:01you can value your mistakes just as you
11:03can your triumphs
11:05it is when i embrace my worthiness as a
11:08person as a mother
11:10and as a partner that i began to heal
11:12enough
11:13to care for jason and myself so i had an
11:17epiphany i realized that so many moms of
11:20special needs children
11:21have little to no support in their
11:24community
11:26it is resulting in so many of us hating
11:28ourselves letting ourselves go
11:30not wanting to face the realities of
11:32what we deemed as an imperfect child
11:36raising jason has slowly revealed my
11:38life's missions
11:40to provide the answers that i so
11:42achingly
11:43search for to other parents of children
11:48with special needs
11:51so i started the answering to create
11:54resources and provide support to parents
11:57so they won't have to suffer as i did
12:00we've established groups to provide
12:01information or resources and create
12:03dialogue for discussion and support
12:06for people with special needs we also
12:09offer family and peer events to empower
12:11people with disabilities to practice
12:13acceptable public behaviors
12:15and home socialization skills
12:18did you know autism now impacts one in
12:2054 children yet
12:23traditional parenting guides or
12:24resources don't offer the answers to the
12:27plethora
12:27of burning questions a parent has when
12:30their child is on the spectrum
12:34so being the mother of a special needs
12:35child allowed me to take a journey
12:38to provide answers where there were none
12:41for me
12:42although there are still more questions
12:44and answers
12:46i hope that this ignites a conversation
12:48to families and to help families like
12:51mine
12:52that have been that families like mine
12:56live enriched and happy lives
12:59thank you for your time
13:08you