Transcript:

It was the day of my high school graduation. Nobody could find me. I remember the banging on the wall, seeing the handle being ripped off the door through the tiny slit in my eyes. As I came to, I found myself laying on the ground with my arms wrapped around a gas heater. I didn’t make it to the graduation that day. I had had one of the most intense seizures of my life.

I am MOCHA 11.

I grew up in a small town where football was king and everybody wore red. When I was in high school I was quiet, a troublemaker, but quiet. I was diagnosed with epilepsy at a very young age and throughout my childhood, throughout my teenage years I remember being sickly. My diagnosis definitely restricted me. I didn’t really join clubs or organizations or have many friends mainly because I was in this program where I attended school half a day and was able to work half a day.

In my family there were 3 boys and 3 girls, and I was the oldest of the girls. I think that best explains why my whole life I really thought I was going to be a nurse. Most of my childhood and teenage life was spent learning how to take care of people, how to take care of kids, how to take care of a family and run a household.

I knew from experience the value of a good nurse but when it came time to apply to a local program in my area, I was denied because I was not given medical clearance due to my epilepsy.

I ended up going to a local community college and received a certificate in business management.

One of my first jobs was working for a small car company but soon after, the depression hit and I had to move for more opportunities.  

I moved a few hours from home and worked for a big shipping and construction company where I was overseeing almost 400 men. Ha! You think women have drama? My goodness.

We built domes overseas, shipped cranes, handled multi-million dollar projects and at one point I was offered a position in the company office located in Dubai!

Shortly after I turned that offer down, the next wave of economic downturn slapped the country again and I had to move back home.

I took a secretarial job at a small company and quickly befriended this sweet girl that incessantly talked about her brother.

She wanted us to meet. She thought I would be great for him. She thought he would be great for me. “Just one meal”, she said.

After months and months, I agreed to one meal.  That one meal turned into 20 years.

My husband was a widow and a veteran and although plagued with PTSD from these multiple traumas in his life, we were happy.

We got pregnant pretty quickly and as the weeks progressed I had so much hope and love for this little bean that I couldn’t feel kicking quite yet. Then I had a miscarriage.

I have never liked the word “miscarriage” it feels like I didn’t carry my baby right, you know, it just seems like a wrong word. But it’s what they call it so, whatever.

I’ve always been the tough one. I’ve never been the emotional one in my family. I’m usually the one people lean on because I’m pretty strong. I don’t cry often even at funerals of my dearest loved ones and I attribute this to faith and personality but losing that baby… was devastating.

I cried for days. I cried like the world had ceased to exist. I cried as if I wasn’t even alive. I do not wish that amount of pain on anyone. Anyone.

On top of my immense grief, no one could relate to me. Not my mom, my sisters. No one was really having babies around that time and surely hadn’t lost one. The miscarriage broke me.

I worked for a little bit at a school district as a para to keep my mind off of my loss but I didn’t get paid hardly enough and so I decided to stay home because now I was pregnant for the second time.

My little son. He was born and he was precious. Easy. Funny. Happy. Always smiling, crawling, walking. He was the best rainbow baby I could have asked for. He hit every milestone and started in daycare pretty young as I needed to go back to work to help support an always hungry baby.

Quickly after, about a year and a half, I was pregnant again and I was having another little boy. Brothers!

This baby boy was completely different. He cried all the time. No eye contact. Delayed in almost every way. He could hardly sit up or stand or crawl even months after the milestones indicated that he should.

Every doctor visit I was asking the questions but as time went on things got worse. We couldn’t go anywhere. Everywhere we went he screamed, and screamed, and screamed. We would pull up to a grocery store and he would scream and scream and scream. We would go to eat at a restaurant and he would scream and scream and scream. I would find myself in the car with him asleep on my chest as my husband or family brought me food through the window at every restaurant we went to. Every vacation that we tried, just, no way.

After one long night of unexplained fever, our pediatrician initially suspected Kawasaki disease but after more testing and noticing how the flapping and the stimming began to increase, and words were few, my son was diagnosed with autism.

I remember not being devastated by that but more confused and feeling really alone and pretty scared because even the doctor himself as wonderful as he was, as loving as he is till this day, so loved by our community, at that time there was nowhere to send me. He literally was heartbroken telling me there’s not much help. He told me to start my son in school early so I went to the local school district and tried to enroll him but after testing, the district said that their exams did not show that he had autism. Meanwhile, we were struggling with new dangerous behaviors like running. My son became a runner and I couldn’t leave him alone for a second. We tried different medications for ADHD but nothing really seemed to help enough to justify continuing the meds.  Me, having been on medications my whole life for seizures, I knew it’s not what I wanted for his life.

Eventually, the school district agreed to use the label that you give the kid that you know there’s something wrong but you don’t really know what, OHI or other health impairment. So my son was allowed to start in a PPCD class. He was three years old.

He was in PPCD until kindergarten and for his kinder year we were told he no longer qualified for special education.

The school continued to insist that my son had a learning disability and not autism.

The elementary years were not filled with behavior problems but instead more confirmation that he was really, really behind in academics. And it seemed like, OK I know this sounds like a very one-sided view from a frustrated momma but it seemed like, no one cared. They kept passing him every single year. Every year. Every teacher. Passed him. Kinder. First. Second. Third. Fourth. Fifth. Sixth. Every year with me asking and asking and asking for more testing.

In middle school my son was very much alone. All by himself all day. I remember seeing the school district Facebook page with pictures posted of students in the cafeteria or at PE and on the playground, and there would be my son. In the back of the picture, off to the corner, sitting all alone… picture after picture. It’s interesting how nobody thought about that. Nobody really saw him. Nobody noticed him, you know? I believe he was so isolated not so much directly because of his autism but because of what he loved. It is so true that we find friends when we share common interests, right? Well, how about a 6ft tall preteen in middle school who loves dolls? He loves dress up. He talks nonstop about cheerleading. It is his obsession.

When he was in seventh grade he was not allowed to try-out for cheerleading because the school said he was high-risk. They did not have anyone to be with him all the time or monitor him or supervise. Shortly after that heartbreak, we discovered a nonprofit organization in our area that started a cheerleading squad for special needs children. I was so nervous when I called to ask if they would accept a 6ft tall boy, and they said of course. He loved it. He was able to perform about once a month with his group and for me, it allowed me to make some very good friends. Cheerleading moms. I loved hearing stories of other parents that were going through a lot of the similar things that I was. It lightened the load, made me feel a little less alone.

Meanwhile my son was still struggling in school so seventh grade is really the year that I buckled down and I knew that if I didn’t speak up for my son, if I didn’t start to really fight, not request, not ask, but really, really fight for what he needed it wasn’t gonna happen.

So in the seventh grade, after relentless effort, they finally labeled him with autism, probably just to shut me up.

His eighth grade year, representatives from the ninth grade campus came to our annual ARD to help us choose electives. My son was thrilled to see that dance class was an option! They assured me in writing that he would be able to join dance.

All summer long this kiddo practiced and watched videos and was so excited to finally be a part of an official dance class and come registration, they didn’t allow him to join. “High-risk”. They used those words again.

Plus, the students that were in the dance class must have attended a summer camp as a prerequisite and we were never told about that camp.

It broke his heart.

This is where I drew the line.

I sat at that table and with more anger than I can remember showing in public in my life I told every face in the room, “I’m not gonna tell him. You’re gonna tell him. All summer long that innocent boy thought and dreamed about this class and you’re gonna be the one to let him down. Not me. You are going to tell him that you lied to him and to me.”

Then I did the one thing I never thought I would do. The one thing that I know mom‘s get a heavy stigma for… we get so attacked, for getting a lawyer.

But let me tell you, when you are at your wits end and when your son has been stigmatized, bullied, literally beaten in class one time, when you have felt such heavy shame and guilt for not fighting harder and sooner, yeah, you get an attorney and you fight for whatever you can fight for because if you don’t… no one will.

The lawyer requested the district provide a tutor for my son to catch up on basic math and reading. The school representatives responded with a random math assessment that showed he already mastered basic math. So I said, “OK let’s go to the store. Let’s send my son to the store with five dollars and see if he can make change when he buys a coke. He can’t. He doesn’t know math, it doesn’t matter what your worksheet says.”

At ninth grade, my son was at a third grade level in almost every subject.

The attorney was able to get the district to provide a psychologist to help him with his loneliness and depression.  My son was provided a personal tutor for math and reading basics. He was also approved to attend a culinary class part of the day.

I’ve been asked before with all that I’ve gone through in the school districts what’s the biggest problem. What do I think is the biggest issue for me as the mom to my son, also having worked in a school district for five years as a para myself.

And I would have to say, it’s a staffing problem. There’s not enough staff to be able to separate the needs of our unique kids. All of these children need such different resources to succeed.  

Some are in life skills and are severe. Some are in general education and will never need a special education service in their life but what about those in the middle?

What about my son? So here is my theory, if it is a staffing problem it is an administration problem. Most administration problems come from funding problems. Usually this is not for lack of funds but appropriation of funds. Determining who and what the school will prioritize and who and what is valuable enough to receive those funds.

How valuable is the special needs population in your school? Are they worth the time and money?

Besides school, our biggest struggle is this complete obsession with cheerleading.  My son is obsessed with a particular professional football cheerleading squad and it’s probably not for the reasons you assume.

He doesn’t see these women on YouTube videos and TV and feel physical attraction. He is mesmerized by the way the fringe on their boots move in unison. He can’t get enough of the sparkle that is a direct result of light as it bounces off every single pom-pom or the way the belt buckles glimmer.

How do you tell a 6 foot 3, young man, with autism, with academic delays, that he’s not going to be a professional football cheerleader?

We have been able to attend camps where special needs children are given time with professional cheerleaders but we have had issues where they don’t allow my son to stay for the entire day because he’s a boy.

We have also had some really kind people that have seen us struggle outside these camps as my son sits heartbroken and exceptions have been made.

My biggest fear for him is a shared fear by many moms that I have talked to. When I die…  what happens? Financially, mentally?

My biggest dream for him is that he will get to live life to the fullest and experience things without being judged or made fun of or pushed aside.

I have a lot of regrets that I didn’t push harder, sooner, faster for a lawyer and his education.

So I think that would be my biggest piece of advice to any mom or parent just starting this journey. Ask for help. Get an advocate. Get a lawyer. Raise your voice. When something is not working, don’t give up until it works.

These days I am spending most of my time trying to teach my son how to be independent. How to do laundry. How to clean a toilet. How to cut with a knife. How to prepare food.

All the while with him talking cheerleading 24/7 and having the same one item on his Christmas list every year, new pom-poms.

If my son has taught me anything it is that we love what we love. This is a 6 foot three man with autism that loves professional cheerleading and not because he’s attracted to the women but because he loves pom-poms and he loves fringe on boots and he loves shiny belts and he loves the camaraderie and the smiles and the music and the dancing, he loves it. And  that doesn’t make him any less of a man, of a person, of a human being, it doesn’t make him any less of my son, it doesn’t make him any less of a student who deserves respect, who deserves funding, who deserves help, who deserves attention, and who deserves friends.

My prayer for him and for all of the children that I know are like him is that the world will start to see and accept the fact that human beings like my son are just as valuable, just as worthy of time attention, education, love, respect and worthy of opportunities to follow their dreams.

We love what we love.