Transcript:

I was born and raised in a border town deep in south Texas. I wish that I had a great story to tell you about my childhood. I really do. I wish that you would feel warm fuzzies as I shared of all the love and giggles and support that filled my day to day when I was young. But that’s not my story.

My story is about a little girl who so desperately wanted to pursue medicine and tried several high schools and magnet schools to achieve that dream but instead, I would sit at my desk each day wondering if my mom would be OK when I got home. Would she still be there? The domestic violence was relentless.

I ran away from home in my early teens. I guess some would say I was rebellious, which I would agree. I was rebelling against a really unhealthy home. A home where I did not feel safe or valued.

I ended up getting my GED but I met a lot of wrong people along the way as I hopped from couch to couch, apartment to apartment. I still see that little girl literally scrambling for her life and I feel like I can’t save her. I feel so sorry for everything she endured but all I can really do is move forward. It was necessary. Running away for me was necessary.

At 17 years old I stood in a registrar’s office and explained that I didn’t have parents to sign for me so that I could enroll in college.  They helped me.

I started college as a political science major which was inspired by a program I was in with the local police department where teenagers help other teenagers as they maneuver through the court system. Ever since then I knew advocacy of some kind was in my heart and in my future.

I met the man that would be my husband in 2002. He had three children. Overnight I became the momma to three children.

Soon after, I was pregnant. That pregnancy, oof, all I can tell you was it was a mess. Constant pressure, pain, bleeding. Just not the pregnancy that you dream for and then at five months, at five months pregnant, the unspeakable happened. Something that in my life, despite all the challenges, nothing will come close, nothing will compare, nothing.  It started as light cramps, then forceful contractions and at 5 months pregnant I delivered a little girl. I didn’t know it was a girl. She was stillborn. All of those moments, those days, were such a blur. I was an emotional wreck and I never imagined this would happen to me, you know? I had headaches such crazy, painful headaches that I thought my head would explode. Depression. Contemplating suicide. It was just overwhelming. I cried so much. So many of my days I spent crying. When I left the hospital they gave me a box that had everything that belonged to my little girl. Her little hat. Her little clothes. The picture they took of her little body. That box was mint green. I’ll never forget it. In an anxious rage I destroyed it. I destroyed everything. Till this day the color mint green makes me want to scream.

Very shortly after that I was pregnant again, with my rainbow baby. My first son. He was so good.  He was that perfect eat, sleep, burp repeat type of baby. When he was two years old I had my second son and the differences were blatant.  

He would not sleep more than 15 minutes at a time and to put him to sleep meant putting on a show, I mean we had to throw a huge production to get this little baby to go to sleep. Right away I knew. I knew he was different. He never looked at me. He would stare off into a world where I had no invitation. At two years old he was talking in jibber jabber, almost like a made-up language that nobody understood.  At 3 years old, the behavioral pediatrician, said it was autism and I wish I could tell you that I handled it well. I didn’t. I felt like my world was crashing down on me again. Again something else that was happening to my baby that I could not fix. There was no medicine. The future was a mystery but the fear of how the mystery would unfold was so potent it was practically tangible.

I was not strong enough at that time to hear that. My mind, my heart, my body, still so fragile.

I allowed myself two days to be completely devastated and then, it was go time.

We put him in Head Start and his first teacher was SO great. She quickly realized that my son loved dinosaurs and so dinosaurs were used for all things academic so he would stay interested and engaged. Dinosaur stickers, figurines, you name it she tried it and sure enough that first year of Head Start my son said his first word, banana.

At home we were struggling. We continued to have issues at home with sleep. You see, in my son’s world, daylight meant out of bed and dark meant in bed. So when the hour changed and it was dark before 6pm, well you can see how this posed many challenges for us. If he was not in his bed when it was dark, the meltdowns were severe. My son was also struggling with huge eating aversions. He could not eat, and till this day does not eat anything green. When he is served rice, his hands physically shake uncontrollably just at the sight of it. Food aversions are not fake. Food aversions are not byproducts of a spoiled, picky child. No. Food aversions are very real, true sensory issues that have to do with the texture, the color, the smell and it is so unique to each kiddo.

Back at Head Start, the second year brought a new teacher who did not know what to do with my boy. It seemed crazy to me that our quality of life and my son’s overall progress could depend so heavily on this luck of the draw. Teachers make ALL the difference in such extreme ways.

We removed him from Head Start and began the process of early intervention exams and pre-K placement in PPCD.

The school that we were zoned to did not have a special education program so my son was bused each day to a school close by.  We have fond memories of pre-K and kinder. The kids loved my son’s spiky hair and to them, he was cool. His teacher was AMAZING, so patient and kind and intelligent and went above and beyond to gain my son’s trust. Everything was going so smoothly until the district made some changes and every school was given a special education classroom which meant we had to move back to the school in which we were zoned.

My son started at the new school his first grade year and all I can tell you is that we got a teacher that didn’t get it. I’m not sure if it was lack of training or lack of compassion, maybe it was both but there was a lot of emphasis on making the students sit up straight, walk a straight line, don’t talk out of turn, obey the rules at all times.  Big issues were made from small things. So right about now is where we push PLAY and I tell you my ice cream story. At my son‘s first school, they would give him a mini ice cream sandwich at the end of each day. After a whole day of work, good work, and obeying and listening to the instructions they would love on him and at the end of the day he would get to enjoy a mini ice cream sandwich that I would supply. He would get one. He never asked for more. The new school, the new teacher did not allow me to bring those mini ice cream sandwiches. They didn’t even allow me to send money for him to buy one at the cafeteria. The teacher told me that my son needed to be weaned off. “He has to know that you can’t get rewarded all the time,” she said.

So I looked this lady in the eye and said, “But as a teacher aren’t you rewarded? Don’t you work every day to get a paycheck? Would you work for no paycheck?  I mean you wouldn’t be working without being able to enjoy your expensive coffee each morning and getting your acrylic nail refill each weekend, right? Aren’t those rewards? Hum. Perhaps you need to be weaned.”

Ha! Oh my Goodness. Yes I did say that. Yes I did.

The other issue was water. Believe it or not I am about to push PLAY on one of the most traumatic school experiences as a special needs mom and all because of a glass of freakin’ water.

My son loves water. In fact, it’s the only thing he will drink. In Pre-K and Kinder the teachers knew he loved water so each day they had a gallon of water labeled with his name and would serve him water in his personal cup when he asked. This new school, this new teacher refused the gallon of water. They also did not want him getting up to drink water at the fountain so frequently. Again, “he needs to be weaned” she said.

So after one hot and sweaty PE morning, back in class, my son asked for water. The teacher said no. He kept asking. She kept saying no. He threw himself to the floor. He flopped. He cried. He screamed. He was restrained. I need you to understand what that really means. I want you to look at your kid right now, whoever you call baby, the most precious gift that you’ve been gifted and I want you to imagine an adult restraining him. Holding her down. Holding him down by his arms. Pinning her hands. Adult arms wrapped around his shoulders. Physically restraining him all because he wanted water.

When I showed up to the school I was sick to my stomach as I began to count and document the bruises and scratches on his arms and hands. I knew that if I allowed myself to feel all that I was feeling I would puke, so I switched gears to rage. It was my breaking point.

I confronted the teacher and it escalated quickly. It was one of the most fierce verbal arguments I have experienced in my life and ended with me shouting and veins bulging, “This is my child first. He is mine. This is my child I will not tolerate this. I have trusted you with his life every day and you are breaking him. You’re breaking him.”

He was six years old. Six. All of this was happening and he was six. I know he’s not perfect, but my God.

I drove my son to his first school, showed his previous teacher his arms, his bruises and scratches, and I begged. I tucked away whatever pride I ever owned and I begged for the principal to take him back.

The principal said yes.

When my son was in seventh grade we started having conversations about his diagnosis and he took it very well because we were very positive about it. I know that I am so blessed that now he is able to verbalize more of his feelings and thoughts which gives me incredible insight into his world where I now have an invitation from time to time. He shuts down when he feels like he does something wrong or when he’s being blamed for something. Like let’s say he is missing an assignment or has a low grade, just those words alone will trigger a total and complete shut down. One time I asked him if he could explain why he shuts down and he answered, “I get quiet because I’m trying to think of what I did wrong. What is it that I did wrong? My brain is trying to process and it just goes so fast.” He told me that the hand stimming, when he clutches his hands faster and faster it helps him focus on the video that is playing in his head. A few weeks ago he said, “Mom, what does the word impulse mean? I don’t have a picture in my head for that word.”

Isn’t all of that so fascinating?

During his seventh grade year we both became advocates together. It is a bond that I hope lasts forever. In eighth grade the bullying was severe but now, he is in a good place.

He is learning Chinese. He loves theater and business management. He wants to go to college. He talks a lot about being a movie producer and he actually is an actor in our community theater right now!

My biggest dream for him is that the video he plays in his head of his future becomes a sweet reality.

I have a lot of regrets in my life but when it comes to my son I feel like I was so naïve and ignorant for too long. If I had worked on becoming more educated and more knowledgeable about his rights sooner in the story, I think that the school situation would’ve been so different.

My advice for any momma on this journey is to remember that he or she is your child first. Forget the diagnosis. Forget fighting for services. First and foremost, he or she is your child. There is no amount of services your child can receive that will outweigh the impact of you being their first teacher. Having the love only you can show them is the best therapy there is. I want nothing more than for my son to grow up, push PLAY on the video in his brain of his momma, and see me cheering wildly but standing patiently at the entrance of his world just waiting for my invitation in. I am willing to wait. He is worth the wait.