A Foundation and A Song for Autism

The way we encounter connections and conversations with one another has always led me to believe that life works in mysterious ways. As a writer I find myself an equal part  introvert and extrovert. Maybe it's just inate to who I am, how I was raised, or the perceptions of others. When we think of personalities, differences, and people in general it isn't common to think about or discuss disabilities and special needs. Tammy Tran Nguyen, founder of KNOW Autism would like to change that. 1 in 68 children born are affected by Autism. This doesn’t include other types of special needs, or disabilities. Tammy founded KNOW Autism, located in Houston Texas in 2013. Their goal is to support families and reduce the burden of an Autism diagnosis by providing financial assistance, education, and resources. As a fellow mother and advocate to a child with Autism she saw the dire need in her community for early screenings, awareness, inclusion, and training. As we all know there is a relevant need for knowledge, acceptance, and early intervention. Thankfully, there are people who want to help. Kelly Levesque is one of them. A singer, songwriter, and mother Kelly told me that she knew of Autism, but didn't 'know' Autism; adding that her newly found awareness has been extremely eye opening. Her decision to donate a song she wrote titled 'I Won’t Let You Down' to the foundation has sparked a desire in her to continue to do more. I was asked to interview both of these beautiful souls and I felt honored to do so. The connection with each was undeniably remarkable.

KNOW Autism

I was certainly impressed with the overall idea of KNOW Autism so let me explain a little bit about it. The Stewart Center in Houston, TX is where children are screened st and early age and parents are not only informed, but given the tools to satisfy their child's individual needs, for free. There are special projects including Theatre Under the Stars which launches a Community Arts Residency for fine arts education to preschoolers and includes training on Autism Spectrum Disorder to increase awareness, encourage early intervention, and facilitate more autism friendly events. The hope is to eventually offer this up to 5th grade. Tammy hopes to help foster a better environment for ALL children, regardless of disability. Each and every interaction, whether a child is on the spectrum or not is important. She feels it is vital to equip children with the knowledge needed for healthy interactions amongst their peers.

Tammy Tran Nguyen

My conversation with Tammy went like this: I asked her what was the one most important piece of advice she'd give to other parents, as a parent herself of a child on the spectrum. She felt this was a difficult question, but quickly replied advising that 'It's going to be ok'. When she first received her son's diagnosis she cried, she wondered what will happen, how will they do this, and more. There were so many unanswered questions. But she realized that she must keep it simple. She said you will figure a way to navigate the journey, you will find yourself appreciating your family and discovering so much about one another. I then asked about expansion of the Community Arts Residencies and Tammy advised as of right now they are working with Pre K, first, and second graders and  hopes to secure this upwards to the fifth grade. She wants to show typical children what to expect, that everyone has their own characteristics, how to help them be ambassadors to those with special needs, and end ultimately end bullying. This led me to ask if KNOW Autism has any new ideas set for review, of which she responded that teachers are important. They are working on a project that will train teachers to teach children about the differences and interactions of typical and special needs students. I am a huge fan of the fact that Tammy and Kelly met because I believe Autism and music go hand in hand. Tammy met Kelly through her performance at Unicef, loved her voice, and  requested she play at their 2018 Gala. Kelly felt compelled to help. She donated her song and her entire music video to KNOW Autism. All proceeds go entirely to the foundation. Tammy expressed how grateful she was for her generosity and talent. Tammy explained that the song is to help others understand that the parent is often neglected through their sacrifices, efforts are either expected or go unnoticed. This song can connect all of us no matter what disability, worries or experiences they've gone through. Finally, I asked how others could help her to promote her cause. The reply was this: 1) Learn the signs of Autism. Knowing for early detection is a must. Whether it's your child or someone else's. 2) SHARE. Share their website www.know-autism.org

Share and download the video to help fund their tuition program. Every dollar goes towards the foundation. Each click, share, and download adds up. We can't all be as involved, but we all can do this. I was impressed with Tammy's positive mindset and feel her contribution will affect many for the better.

Kelly Levesque

When I spoke with Kelly she was pleasant as could be, while sitting poolside in LA nervously watching her 18mos old take swimming lessons you couldn't hear it in her voice. I told her how I was literally in tears after listening to her song and that it  touched me on multiple levels. I must say, she truly has the voice of an angel. Her reasons for writing 'I Won’t Let You Down' came after realizing a parent's love for their child is unknown until you experience it by having one for yourself. As a lover of music since childhood, she chose this  passion over completing college, and hasn't looked back. I asked about her affiliation with Tammy and she explained it was after she sang with Michael Bolton at a Unicef Gala that she spoke with Tammy. Kelly said of Tammy that her energy was there, she is such an incredible woman, and she knew immediately she wanted to help. Of course because she's a singer, I had to ask her who on the music scene has influenced her musically, and who was she the most excited to perform with. Her answer was that there are so many artists who have influenced her, but she would have to start with what her parents loved to listen to. Her dad was an avid Beatles fan, and her mom adored Christmas music and Johnny Mathis. Her own influences have been big voices like Joanne Mitchell, and Aretha Franklin, but the first artist that impressed her was Debbie Gibson. Writing, singing, and producing her own music at age 16.. how impressive is that!  Michael Jackson and many others have inspired her along the way. Kelly told me it was very exciting to perform with Sting. He was professional and talented. The one performance that pushed her to great lengths was singing with Andrea Bocelli, because she not only had to perform in front of 30,000+, but had to learn two songs in a foreign language - one in Spanish and one in Italian. Do you think that stopped her? No. She believes all her training, long hours, and dedication is part of being ready for anything that comes your way. When I read her bio I was drawn to her quotes, one of which particularly stood out for me - "What if...  I pushed aside the voices that say you can't and you won't. Powerful. Kelly further stated that in the music industry they seem to want to put you in a box. She wants to be authentic, and listen to her heart. After her first record deal at age 18 she always wanted to be proud of who she saw in the mirror. To my question about upcoming projects or collaborations she advised how she's always touring (you can find the schedule on her website), there's a Christmas single in the works, and she's doing a whole lot of writing right now. Kelly explained that music hits her at different times and random places. A lyric can develop an idea, while going to the piano helps her to find those lyrics. I asked her what she wants others to learn from her song. Her reply is that she wants the community to know that she cares, that she's willing to offer a lending hand when they need it, and she's here to help. Adding if everyone could give and help what a better place it would be. I have to agree. And then her voice faded off as she nervously tells me how glad she is that she doesn't have to be in the pool teaching her daughter how to swim. It's necessary to allow an instructor assist her daughter in a skill for betterment, but she's a mommy, and mommy's are going to worry whenever their children are involved. The quote in the beginning of her video says " There is nothing more powerful than a parents love for their child". This is oh so true. We all want what is best for our children, we want them to excel, we want them to be the best they can be. The way to do ensure these things is to intervene as necessary.

Please CLICK, SHARE, and DOWNLOAD 'I Won’t Let You Down' by Kelly Levesque.   https://www.youtube.com/watch?v=wP0LIR2Xlgg&feature=youtu.be

I promise - you won't be disappointed. 

www.know-autism.org

Irma's Impact

While Hurricane Irma visited the Sunshine State, my sweet T & I were hunkered down with a few of our favorite things, safe from Irma's wrath. It was an emotionally charged week leading up to Mother Nature's impending disaster, which left most of it's devastation South of us. With it's flip flop track no one knew if they should flee or just prepare to ride it out. When hurricane Jeanne whipped through, we lost our roof to a mini tornado and was displaced from our home for 9 months. While I'm usually worried about hurricanes, that one was the least of my worries- go figure. At any rate, I knew I wanted my daughter with me as she's always been. Her group home was evacuated along with multiple neighborhoods, but she would stay with me regardless.

Initially I almost drove to Georgia, but Irma dropped from a category 5, to a 4, and finally a 3, so I figured we'd stay. An 8 hour car ride into the unknown, with a special needs young adult probably wasn't the ideal situation. My gas tank was full, but gas was scarce and traffic jams were inevitable. My anxiety level was at an all time high, especially when the hurricane intensified and was tracking straight for us here on the West Coast. A friend invited us to their work place, which could withstand high winds and they had a generator. The decision to go hunker down there was made. I was trying not to incur panic onto T, and keep things as light and normal as I could, but she's one smart cookie. Seeing me pack, then moving again to yet another location she became anxious. She wanted to leave immediately, began crying and lunged towards the door. I remembered breaking down in private the night before. I told her not to be scared, mommy would be with her, and everything would be okay. I tried to believe it myself.. And said a prayer with her. She calmed a bit, and smiled. Her safety was key.

The realization that those you love, and all you have, could be ripped from your life so quickly hits you with a force of a cat 5 hurricane mentally. Preparations were underway, as the TV projected Irmas whereabouts and final destination. Friends and family from out of state were voicing their concern. During the storm surprisingly we both slept soundly. The following day partial power was lost and the generator didn't kick in, so movie time for T was interrupted. Those who have children on the spectrum, or with any special needs know how this turns out, as routine is of the utmost importance- major behavioral meltdown. My nerves were shot and my legs were bruised- but we got through it like any other.

Post Irma we thanked our lucky stars our lives, our homes, our community was spared with minimal damage, as sadness for others who weren't washed over us. Clean up began, power outages rampant, and with businesses affected we were already mentally and emotionally drained. It was apparent there was no getting around  physical exhausten as well. We either heard of, or experienced those who take advantage in vulnerable times; but the light of so many angels in disguise surpassed the negative. God places people, situations, and opportunities in our path. I allowed my fear to overpower my ability to trust in Him.

When faced with adversity that is when our strength is found. Irma's impact taught us that leaning on one another, having a tiny bit of faith, and finding hope along the way builds a foundation of strength that will supercede anything that may come our way.   

Learning As I GrOw- caregiving sometimes means letting go

I still remember the older gentlemans face as he helped us choose a new dryer. We had my daughter Tiana Hope with us and she was about 6 at the time. I was distracted, as going to the store with a special needs child is never an easy task. I explained a bit about her and he proceeded to tell me that he understood. He too had a daughter born with special needs, with more physical challenges  and that now she lives miles away in a group home. He explained that it was the closest available for her needs. I felt bad, even though I was at a different point of our caregiving journey, but I told him how sorry I was. Continuing on I showed empathy saying how hard that must be; then I blurted out how I would never place my daughter in a home, how she'll live with me always. He replied how difficult it had become for he and his wife, especially his wife, due to the care she required.  I saw tears well up in his eyes and he quickly left. Before long another salesperson came over.  A feeling of dread washed over me and I wanted to find him, apologize. My intent was not cruel and I'm sure his heart was heavy. At that time I was just at a different place on our special needs journey. Now, I am where he stood. There's so much stigma out there about placement. Too much actually. So much that it took me over a year to talk about my daughters move into a group home at age 18- now almost 2 years later. Until you get there you really and truly do not know. We've had our ups and downs, just as every other SN family has but the most important thing to acknowledge is that each one of our journeys are different. Relatable, but different. My daughter is my only child, my life, my heart, my sunshine, my angel in disguise. I have fought for her since day one and I've got the 'scars' to prove it. That fight will continue on for as long as she needs me. I will always be her advocate, teacher, nurse, lawyer, etc and of course her mom. Placement does not mean I love her any less. We don't always like choices and sometimes there really isn't an option. T is happy, smart, giggles and love. Unfortunately, there's behavior issues along with her diagnosis of Pachygyria, which we did not get initially, only told brain disorder, macrocephaly and seizures. We later learned she had developmental delays, speech delay, autism, pdd,& sensory issues. Back then I didn't have the type of internet and groups available today. I made sure she had what the drs advised  including  medications, therapies, a special school,& additional care. I made her her very  own magnetic picture cards for the refrigerator, picture books, held my own therapy sessions and prayed like I've never prayed before. As hormones changed so did her moods, which turned to aggression. The outbursts were intimidating as her strength seemed to double and I was the target. Locking myself in the bathroom literally happened at times until she calmed down, not to mention attacks while driving.  Meds have helped and T recognizes her behavior  but only after the fact. Sorrys and kisses abound as T is usually so sweet. The day her psych dr had her baker acted after an outburst in his office just about pushed me over the edge.  My heart was broken into a million tiny pieces. I have not even touched the surface of  what we've been through. People have said all kids at 18 are leaving home, and I understand that, I appreciate that, however when your child will mentally be a child forever and their milestones are totally different that's what's gut wrenching. Letting go is not taken lightly and it is still hard to accept. I am very involved, and she comes home often. A multitude of research with a team of specialists helping me along made it possible. No, it's not an institution. T lives in a regular house with 5 other girls her age, shares a room, goes on outings, even has a pool and she's much more independent. We are both trying to embrace our independence. She's growing up, she's happy, and she's going to be just fine.i suppose I will be eventually. Day by day I learn to let go a tiny bit more. With tears of both sadness and joy in my eyes I will never ever totally let go.  Now I stand where he stood. Now I understand. I hope you will too.     *photo of Tiana Hope taken by April K Corbett.          *this post was featured on The Mighty FB&website July 2015