Fighting for Taylor
Insomnia has begun once again. It has been a few years since I have had to look at its’ dark and lonely ways. I haven’t had more than 3 1/2 to 4 hours each night, with images of Taylor’s upcoming tuition for his school, the enormous bill for the feeding clinic they are recommending for his severe eating disorder…and then the images of his beautiful smile, eyes that sparkle with a light I have never seen before and a laugh so insatiable, I start laughing just thinking of it!
Every morning I wake up to smiles and love.
This is what living with a child with Down syndrome and Autism looks like. Join me in the joy, pain and extraordinary world of these beautiful, powerful children.
It has been 11 years of fighting for his health, wellness, education and safety. And I wouldn’t change a day of it for anything. He works twice as hard as I in everything he does, overcomes challenges I cannot imagine, and being non-verbal, cannot even tell me how difficult it is. Instead, he embraces each day with strength, courage, and only greets everyone with love, hugs and laughter. If everyone had his compassion and light, there would be no war.
One of our visits to the doctor’s office.
Taylor was born September 30, 2004 in Marin County, a small suburb of San Francisco. He was diagnosed with Down syndrome, and later diagnosed with Autism and Speech Apraxia. My brief marriage was plagued with domestic violence as Taylor’s birth came nearer, and after his birth, and his 8 day stay in the NICU, I knew I had to protect him. While recovering from a c-section, and breastfeeding, I had 3 days to pack our beautiful home and leave. He was my strength. I was a survivor. We would do it together. From those dark days- I never looked back- only forward. We fought the broken systems of health and education. Lived on food stamps and welfare, while I worked a 50 hour a week job and wrote a book; ‘Fighting for Taylor, A Mother & Child’s Journey of Inclusion’. After years of fighting for him to receive the education he so desperately needed, I submitted my book to the University of Vermont and not long after- was accepted for my Masters Degree in Early Childhood Education. Taylor would then have access to all of the supports he needed, and I would learn more of how to care for him. We never looked back.
At age 9, Taylor was diagnosed with Autism and Speech Apraxia, as well as a severe eating disorder that only allows him to eat 2 different foods; spaghetti and yogurt. Since, I have spent everything I could trying to find the best school where he would thrive, and one that would further his independence and happiness, and perhaps even promote his first words….
(How Taylor Communicates.)
We finally landed in the beautiful state of Virginia, and I found a miraculous school that uses 1:1 Applied Behavior Analysis for children with Autism. I held a fundraiser to get here, kayaking from the swamps of New Orleans to the Gulf of Mexico, but we did it! Together, and surrounded by those that love and support us. Unfortunately, our local school district here in Virginia is fighting me on his placement at The Peninsula School even though his needs are above and beyond anything they offer. So, I am having to fundraise for the tuition of $50,000. per year. Where he does receive Occupational Therapy, Speech Therapy and Physical Therapy. His feeding disorder has increased to a point where he is avoiding food altogether, and gagging at the food he is able to eat. Only vanilla yogurt and spaghetti. He is now in Failure to Thrive which affects his school participation, as well as everyday life. Imagine not being able to tolerate your food, or not be able to tell you why? We were referred to The Kennedy Krieger Institute in Baltimore, MD which adamantly said the only treatment that stands a chance of success is their 8 week intensive feeding program. It averages between $45,000 and $65,000.
As I look over the years of fighting and struggling for him – I see the flashes of his smiles, the laughter swirling in my ears and the joy he has brought to not just my life, but everyone that we are surrounded by. He is my inspiration, and I will do anything to help him. After all, wouldn’t you if he were your child?
Goals
To keep that smile on Taylor’s face by being able to pay for Taylor’s tuition fees, medical bills, and Therapy, I am hoping you can donate with any size contribution so together, WE can help give Taylor the life he deserves.
