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The M.o.C.h.A. Tribe Diaries - AUDIO

We met in eighth grade science class. We were silly kids who started “going around” when we were both fifteen. We were in love before we knew what that was. We got married at twenty-two assuming we were ready and knew it all. At twenty-four we decided we were ready for a baby because obviously we still knew it all. Over twenty pregnancy tests later I felt like a total failure. I could not do the one thing that society told me my body was supposed to do easily and without much effort. What if it never happened? What if I never gave him a baby? What if I never made us a family? Would he still love me? Would he still want me? Would he become bitter? Would I?

Then a specialist comes along and says my ovaries are crap. Oh awesome. So, it is me. Yup, no way a “quality” egg will happen without intervention. How is it that I can do everything right in my life… choose the secure career not the lofty dream, marry my high school sweetheart and both get college degrees before getting married, wait a couple of years before trying to have a baby, be educated, have support, be so in love, put God first, have faith, be financially ready and still not be able to get pregnant? Ridiculous. No, just plain mean.

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It had been so long since I had thought back on that time of my life but all those memories flooded back as I listened to M.o.C.h.A. four share a similar story. She knew since her early teens that she would not be able to have a baby. The infamous ovarian problems. She said her doctor was very clear since her high school years that due to the size, shape and quality of her ovaries she would not be able to conceive children.

Who would want her? Who would love her? How would she find a man that didn’t want to know the pride of a son or the heart of a daughter? Well, she found him and boy did he love her. He didn’t fall in love with her because he wanted children or because he expected anything from her. He just loved her.

They were married and M.o.C.h.A. four started working at a daycare in the infant room. She may not be able to have her own but she sure did love taking care of others. Until… she got pregnant.

Miracle? Coincidence? Wrong diagnosis? You be the judge.

When she was six months pregnant a sonogram confirmed, it was a boy and ready or not this baby boy would be born into a big ol’ Texas football family. His daddy had many brothers which meant countless uncles and cousins that played football and this baby boy would make a welcomed addition to the team.

M.o.C.h.A. four brought all her skills home with her as she became a stay-at-home mom. She set up the sleep and feeding schedule to mimic the daycare schedules. She had timed sessions of tummy time and floor time with songs and hands-on learning just like in the daycare. But after several years of experience in a daycare newborn room, M.o.C.h.A. four was also an expert at identifying the “abnormal” so she noticed right away when her son started covering his ears with both hands and rocking back and forth during song time.

Up until about six months this cutie baby boy hit every milestone, until he didn’t. At six months the babbling stopped. The eye contact stopped. The smiling stopped.

Sitting down for a meal became a toss-up. Either the meal was sensory friendly with no issues, or the meal was a sensory disaster that brought on instant gagging, throwing up and sometimes all of this with the mere sight of food. She described a typical restaurant visit which would include all the family propping up the menus on the table to make a “menu wall” between their faces and the restaurant. This was to prevent their son from seeing someone else getting served food because sometimes that would cause him to throw up immediately and involuntarily. What stood out to me the most about this “menu wall” was that instead of feeling embarrassed or weird, they would all huddle behind the standing menus and giggle and tell jokes and wait for their food. Come on guys, cutest family ever.

This little boy was also not talking, but it was the staring spells that shook his momma to her core. M.o.C.h.A. four described moments when the house was quiet and she would find her son sitting on the floor or on a chair or standing up, staring. He wouldn’t rock or hum; just frozen and staring.

At each of his well-baby checkups she would bring this to the attention of the pediatrician but since her son was still so young, M.o.C.h.A. four was told to wait it out. All kids progress at different rates and yes BOTH her kids did progress at different rates. M.o.C.h.A. four had a little baby girl shortly after her son turned one. So much for crappy ovaries. She laughed when I jokingly called her “fertile myrtle”.

Her son was about eighteen months old when the “lines” started. He would line up everything. Toy cars, books, letter magnets, anything that could be lined up he lined up. At first glance this was adorable. Seriously the cutest little kid playing and being so organized with his toys. Naturally you can imagine this prompted many pictures and mementos until it was a little too constant to be cute. It began to take on a compulsiveness that made M.o.C.h.A. four a little uneasy.

Another odd thing that M.o.C.h.A. four noticed was that when her son would get very excited or angry or just overstimulated, he would start making movements with both hands that looked almost like a very fast wave.

Then one lazy weeknight, after putting their babies to sleep, M.o.C.h.A. four and her husband sat down to watch their usual television special. Little did they know that this particular hour of their normal weekly routine would change their lives forever. The television special that night featured a little boy with autism and this sweet couple recognized their own son instantly. That same thing she saw her son do with his hands, they learned was called hand flapping and was a classic presentation of stimming. The lining up of toys, the staring spells and being nonverbal; it all fit.

They held each other. They wept together. They did not need a doctor to tell them that their son had autism. They knew that night, together.

I couldn’t help but feel overwhelmed at this point of the power of seeing and hearing someone else’s story and how you never know the impact your story will make until you are brave enough to share it.

M.o.C.h.A. four marched right back into the pediatrician’s office and explained through tears all they had heard and seen on the television special and AGAIN she was told to wait it out. Wait six more months. So M.o.C.h.A. four did the only thing she could think of. She stomped out of that exam room, stood in the middle of the hallway and with EVERYONE in earshot she DEMANDED to be referred to a specialist. She yelled it. In fact, she made such a fuss that a social worker waved M.o.C.h.A four inside her office. The social worker helped to set up two specialist appointments, one to test for hearing and one for a pediatric neurologist. The social worker also gave her a pamphlet about autism and she was told the wait for the pediatric neurologist would be many months for the soonest available appointment. Meanwhile M.o.C.h.A. four’s son failed the hearing test, had tubes placed in his ears and started speech and occupational therapy. She said that one of the most effective tools they learned from therapy was the simple bear hug. The therapists recommended doing this when her son started stimming, or withdrawing, or had an outburst, or anytime he seemed uneasy or uncomfortable. It was not a restraint. I want to make that very clear because there is a difference. They would simply get close to him slowly, wrap both arms around him and squeeze him gently meanwhile telling him things like, “Son, I love you so much.” “It’s ok son. Everything here is safe.” “I am here with you son. Everything is good.”

After months and months of waiting, and hours upon hours in a waiting room, the pediatric neurologist sat down in an exam room with this family for five minutes. The pediatric neurologist was cold, apathetic, gave the diagnosis of autism spectrum disorder (ASD) and pervasive developmental disorder not otherwise specified (PDD-NOS) and handed them a referral for a psychologist.

They never went back.

Meanwhile the signs of autism were becoming more noticeable, more continual and impossible to ignore. As M.o.C.h.A. four sat with the psychologist she sobbed and expressed how fearful she was and begged for direction. The psychologist said, “If you don’t work with him, you will lose him.”

This was the first pause in our conversation. This was that “stop typing and be in the moment” spot. M.o.C.h.A. four shared this one picture with me and gave me permission to use it to express how terrified she was to lose her son. Lose him to who or what? Darkness? Psychosis? Loneliness? She didn’t know, but this is the way she would find him in his quite stares.

Think about that for a second. Think of the pressure, the responsibility and the overwhelming sickening fear that comes when an expert tells you that only YOU have control over your child’s outcome with this disorder, this thing that you can’t even begin to comprehend or understand. And on top of that EVERYTHING depends on YOUR decisions, YOUR interventions, YOUR effort, and YOUR ideas to get the best outcome for your child or you will LOSE him forever.

The psychologist wrote a letter recommending immediate admission for this little boy into the local Head Start and Preschool Program for Children with Disabilities (PPCD) unit. M.o.C.h.A. four left that office knowing there was no way in hell she was going to lose her son to anything or anyone.

She went home and started journaling for both her children. She wanted them to be able to read back about the times of their life that defined them, that molded them, and that guided them. She wrote to her son about his new diagnosis and ended that entry with “you are perfect.”

Her and her husband together fought for their son every chance they got. They took him to parks and places where there were other children and would use role play to help him get comfortable with social situations. They would act out scenes in the park with each other while their son watched and listened to how they introduced themselves or how they asked each other if they wanted to play. They never gave up and they never gave in. They also never forced him. They would just sit in the park and wait. They would wait for him to get on one swing, go down the slide one time, or introduce himself to one kiddo, ANYTHING to keep him engaged and to not “lose” him. They were a team, a united front and a strong one. Anytime he seemed to withdraw or get “lost” they would give him the proverbial “oh no you don’t” and they would work together to draw him back in with love, patience, understanding and undivided attention. Never lost.

From the time he entered Head Start he had the same paraprofessional (para) in the PPCD classroom until the end of the third grade. This was around 2005 when the internet was just starting to make its way into the public schools of the Rio Grande Valley and even then, it was dial-up. This para was already in the later years of her life and career and had every excuse to do the minimum. She had every excuse as a para to say, “They don’t train me so I will just take care of him the best way I know how just like all the other kids.” It was one of the first times she had a student with diagnosed autism in her class and so this lady… oh my gosh… this lady went to the school district library and started researching. She read about autism, the history and the signs and characteristics. She discovered applied behavioral analysis (ABA) as it was mentioned so frequently in these books and there were articles upon articles of how much it had made a difference in student’s lives and education. Then she started researching just ABA and the principles and the techniques and she started implementing this behavior modification model for M.o.C.h.A. four’s son.

People, she was a paraprofessional. She didn’t wait for training or an ARD (Admission, Review, Dismissal) meeting. She made picture cues and visual structures and social stories and first-and-then cards. She made a difference in this boy’s life. She made a substantial impact on his mom’s life. And even now as she has passed away she has made a tremendous mark on my life. No excuses.

Teachers we need you so desperately.
I don’t care if I sound pathetic or begging, I don’t care. Teachers, paraprofessionals, don’t you see? We need you so much. If the schools are not preparing you for our children please speak up. Please don’t be scared or fear retaliation. Please talk to your administrators, your leaders. Please tell them what can be done in your classroom and in your district to improve the quality of education and the quality of so many families’ lives that have children with special needs. Tell them what you need to help our children, your students, the best and most you can. No family, I repeat, NO family should have to go to bed at night worried, scared and dreading to send their child to school the next day because there will be lack of supervision and no one that understands or shows compassion to them due to lack of training or resources.

Around the time of first grade M.o.C.h.A. four moved her family into a new home and now they were not zoned to her son’s elementary. After years of him getting acclimated to the campus and teachers and therapists and classes the principal told M.o.C.h.A. four they would have to leave. She was called into the principal’s office almost DAILY with reminders that her son needed to withdraw and go to the school he was zoned too.

CAN YOU EVEN FATHOM THIS?

Just hearing this story up to this point made me hot in the face. M.o.C.h.A. four refused. She would smile and say “OK” and move on. The principal didn’t let up, so one day when M.o.C.h.A. four was pushed to the limit…oh my God you will never guess. SHE CALLED THE FREAKING TEA! Yes she did! She called Austin, Texas and spoke to a representative for the Texas Education Agency. She tried to convince them to visit the school her son was attending and visit the school where they were now zoned to prove that it was in her son’s best interest to stay. AND THEY CAME! The TEA came to both campuses, visited the classrooms, observed the student and gave their decision. Their recommendation was for her son to stay put. After their recommendation was made known, the principal called M.o.C.h.A. four into the office one last time. The principal made it clear that even though the TEA rendered their recommendation it was still the principal’s ultimate decision and they were going to ALLOW her son to stay after all. M.o.C.h.A. four did what we M.o.C.h.A.s have learned to do with no hesitation, dig up that six-foot-deep hole for our pride and thank them profusely as we cover the hole.

M.o.C.h.A. four talked about that feeling she would get when she would walk the school halls and hear the whispers, “She is the one. Yes, that’s her, the one that called the TEA.”
She would think to herself, “Damn straight I did and I will do it again if I have to.” But it was hard. It was embarrassing. It was unfair. Undeserved. Nobody wants to feel that way; I don’t care how tough or thick-skinned you are.

OK it’s time to make some people uncomfortable…ready? Let’s talk about stigma. Not the stigma of autism. Let’s talk about mommy stigma. Let’s specifically talk about the stigma that comes with being a mom of a child that has special needs. Oh yeah. Depending on what you do for a living, you’re already squirming. All I ask is for you to be honest with yourself. Have you ever heard someone talk about a mom like this? Have YOU ever talked about a mom like this?

-“Ugh. There she comes again. She thinks she knows everything.”

-“You better make that mom happy because we don’t want a lawsuit.”

-“Puhleese, she thinks just because she is educated she can get whatever she wants.”

-“Crap! The ARD meeting is tomorrow so you better make sure those reports are correct because that mom will bite your head off in front of everyone. ”

My personal favorite…

-“Oh man watch out. That mom is a total bitch.”

-Sigh-

I don’t know what else to say about this except to share with you an adaptation of an excerpt from my book.
This is one of the many parts of Chapter 6.

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“I want to direct this part to anyone that is a special or regular education teacher or paraprofessional, public school speech or occupational therapist, public school diagnostician and/or administrators and all clerical staff. You know what? Let’s also include doctors, nurses, specialists and medical staff/receptionists. I want you to know that I don’t pretend to know your job. I have always been mindful that we cannot judge others if we don’t walk in their shoes. I do know your days are crazy busy. I do know that you deal with behavior issues, restraining students, emotional disturbance, abuse and neglect. I do know that you deal with insurance and schedules and billing and bosses. I know you see it all and I know that sometimes, like all of us, you hate and love your job at the same time. I want you to know that I know you have the best intentions for every child. I also know that you may not have the time, resources and sometimes training to deal with all the special education students or patients in your school or practice effectively or to the extent that you want to. On the flip side when I got pregnant and had this little baby inside me I dreamed of Gifted and Talented meetings, not ARD meetings. As a parent I do not want to have to attend meetings or doctor appointments like this just as much as you do. I did not plan on having children to watch them struggle, be so intellectually, academically and speech delayed that they couldn’t be in a regular classroom or would need behavior modifying medication. It is sad and hard and lonely and the feeling of loss is great. So, since we all have to attend these meetings, let’s do our best and give each other our best every time. And doctor, I am asking for more than five minutes of your time after I waited to see you for six months for a diagnosis that will change the trajectory of our entire lives. From the parent perspective, we are trusting you with our most precious gifts who mean everything to us and whom we have sacrificed for and whom we are advocates for. Instead of calling us “bitches” or “difficult” or “demanding” why don’t you throw your arms to heaven and thank God that our child, your student, your patient has a person in their life that loves them so much they are willing to carry these stigmas freely and gladly. Be thankful that you have an educated, invested parent that really just wants to work with you to get the best and most out of their child and you in the career that you chose. Yes, I know not all of us are as nice or courteous or patient as others but most of us do try very hard to be kind and in being kind we have to be honest which is not always easy. Do you think we like to be that mom that everyone talks about? Do you think we enjoy confrontation and awkward conversations with grown adults? We didn’t ask for this role. We were given this role and we have learned to embrace this role. BUT more importantly you need to understand that when you give us this stigma, those around you feed off of it and may judge us unfairly which ultimately could tremendously affect our child’s education or the care they receive and how you view them. They are the innocent ones in all of this and they are the ones that sometimes suffer because of unfair mom stigmas.”

“Waiting for the Light Bulb: The ramblings of a crazy, gritty mom.” by Dr. Lisa Peña

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OK. Off my soapbox. Let’s continue with M.o.C.h.A. four’s story.

The winning combination of gritty parents that never gave up and a gritty paraprofessional that gave her best allowed for this young boy to enter third grade in the regular education classroom with the help of an inclusion teacher.

Meanwhile the struggle was real in regards to extended family interactions. It was clear by this point to the entire family that this little boy was different. Some family members took it so far as to act scared of him and were cautious when around him. Many felt like he didn’t belong and treated him accordingly. Others treated him with complete normalcy but insisted that he would “grow out of it.” The stigma is real at home and in the world my friends.

But guess what else third grade brought along? Football. This kid was strong and big so M.o.C.h.A. four’s husband dove right in. He knew the only way to ensure that the little league coach would be patient enough, kind enough and communicate well enough with his son was to become the coach himself. Well, their son LOVES football and he is actually pretty good too. As the coach, his dad was very careful with controlling his facial cues to not seem angry or frustrated or annoyed which could potentially be a huge distraction for his son on and off the field. M.o.C.h.A. four’s son requires a lot of visual teaching and repetition but his autism actually helps him focus on the technical aspects of the game which allows for his physical form to be consistent play after play.

For this young boy’s fourth grade year there would be more new experiences. He would have to learn how to transition from one class to another a couple of times per day in preparation for the multiple classes that junior high would bring about. During a parent-teacher conference the fourth grade teacher brought up some concerns to M.o.C.h.A. four. The teacher said that each time the class had to transition, M.o.C.h.A. four’s son would start crying as they lined up at the door. Right away M.o.C.h.A. four asked for clarification, “Does he cry out loud and have a meltdown or is he quiet and you just see tears?” The teacher said that he stands quietly and with no emotion tears just start streaming down his face. M.o.C.h.A. four knew this look well. It was how he quietly coped with things that were hard for him. You see not all children with autism act or respond the same way. Not all of them have outbursts or meltdowns when they are trying to cope. This sweet boy would cope internally. He would prepare himself mentally for the transition because it was genuinely hard for him to make that switch. So, many times tears would fall down his face as he worked so very hard to be normal and to just go with the flow when all of his body and brain told him otherwise.

Ugh, this just broke my heart.

M.o.C.h.A four explained this to the teacher and said it was normal for him and it was actually a good sign because that meant he was trying very hard to fit in and accommodate for the transition without being disruptive. The fourth grade teacher then said, “Well, if he keeps doing that he won’t get far in life.”

I’ll pause for your gasps of disbelief and disgust.

Oh Lord, I literally clapped my hands over my mouth and then put them on my head with all the dramatics that Starbucks allows and I shrieked, “WHAT DID YOU SAY? OH MY GOD WHAT DID YOU DO? Oh girl, I would have gone to jail for real!”

M.o.C.h.A. four smiled and just nodded her head in agreement and said, “Yup those were her words. I will never forget those words as long as I live.”

She said that with all the confidence she could muster she pointed to the fourth grade teacher, looked her right in the eye and said, “You just take care of fourth grade and I’ll take care of his life.”

MIC DROP.

BOOM!!!!

I laughed so loud everyone in Starbucks turned to stare.

So M.o.C.h.A. four is like the most calm, sweet-natured person who doesn’t get easily bothered and if she does, you really can’t tell. She has no dramatics about her. She is also the type that would do anything to keep the peace and doesn’t want to make waves so when she said this, oh my goodness, I wanted to do cartwheels all around her.

This proves that we aren’t born crazy my friends. We aren’t. I am not crazy, I promise! We have become advocates for our children out of necessity. We have become outspoken because it is the only way we will be heard. We have become the sassy “don’t-mess-with-my-kid” mom because we are their voice and no one else will stand up for them if we don’t. We were not born like this, we were born for this.

It was over the course of his last years in elementary that this little boy together with his determined parents and faithful teachers began to learn that he himself could use his own redirection techniques to lessen the stimming or social anxiety that he felt in certain situations. Over time he became really good at redirecting his thoughts and mind which helped him to stop hand-flapping, stop gagging at the sight of food, and stop lining up toys or objects. He has never had to be on medications and hasn’t dealt with bullies because of his size. He is a big, strong teenager and many times M.o.C.h.A. four feels that his autism helps him to not give in to peer pressure or bullies. For example, while all his classmates are nervous to present a research project in front of the class, it doesn’t faze him at all because he is oblivious to the stares or judgment and doesn’t care either way.

His junior high years went well and he even played football in the seventh and eighth grade. He has a very natural brother-sister relationship with his sister because to her, he is the norm. In her eyes that is the only brother she has ever known so a lot of what he deals with or goes through is not as life-altering for her.

When they were both in junior high M.o.C.h.A. four and her husband sat them both down to talk to them about her son’s history and diagnosis. Her son cried and through tears said, “No wonder I am so different.”

He had felt it all these years. You need to know that these kids have feelings even if they don’t show them the way you expect. Also, they tend to care very much about other people’s feelings even though they can’t portray that the way you anticipate.

After serving in the United States Navy, her husband continued to turn down jobs that would not allow for flexibility in schedule because he was devoted and wanted to be available at the drop of a hat if his son needed him. So, after years of being a stay-at-home mom, M.o.C.h.A. four knew it was time to focus on her education and career. She enrolled in college and received an associate degree in interdisciplinary studies and didn’t stop there. A couple of years later she graduated with her bachelor’s in business administration and then a couple of years after that she received a master’s degree in health science with a track in healthcare administration. You go girl!

M.o.C.h.A. four knows the best and scariest is yet to come. Her son wants to learn how to drive. He wants to go to college. And you know what? She will help him every step of the way. She will make exams and questions and flashcards to help him remember the components of the written driving exam because repetition is key. She will help him apply to college and do whatever it takes to get him there safely. He wants to join high school football and she will cheer him on every step of the way, win or lose, starter or not.

Here’s a little Q&A with M.o.C.h.A. four:

BIGGEST PRAYER OR WISH FOR HER SON: “That he is loved by someone sometime in his life.”

There were several points in this conversation that M.o.C.h.A. four became so emotional she could not utter a single word. This was one of those times. M.o.C.h.A. four longs for her son to have friends and companions. She wants so very much for him to “hang out with the boys” and make the social connections she knows are important for teenagers his age. More than anything else she worries and is sad about the realistic chances of him finding a wife, a partner, and having a family. What if that doesn’t happen? She knows the joy that a family and a great partner can bring to your life and she wants the same for him.

WHAT DO YOU WANT PEOPLE TO KNOW ABOUT YOUR SON: “That he has been through so much. He is resilient and so strong-willed and determined. People don’t know how much work it took from him and me and my husband to have reached this point in his life.”

He works hard daily, every hour to cope with a world that was not made for him. He is determined to train his mind to accommodate the world because he knows the world won’t make accommodations for him. What seems effortless to most people, took years upon years of making him uncomfortable to adjust to social situations, schools, restaurants, people, etc.

FINAL QUOTE FROM M.o.C.h.A. four:
“When we first learned of his diagnosis we made a very important decision to never lose hope. We decided on early intervention. We decided that everything was going to be a learning opportunity. We were going to take every chance to work with my son and explain the whys, over and over and over and over. We were going to love him now, in the present, for what he was now, not what we expected him to become in the future. We have been married sixteen years and during that time we created a strong family. A strong family that has worked together, leaned on each other, cut people off that weren’t positive influences in our lives and put our careers on hold. We constantly tell our son to not let autism stop you or define you and don’t let anyone set limits for you.”

I couldn’t have said it any better.

Thank you for taking time today to view the world with a whole new per-spectrum.

If you want to leave a comment for M.o.C.h.A. four but don’t quite know what to say, you can copy and paste this in the comments below…

“We are 100% inspired by you today M.o.C.h.A. four! We are rooting for you and your son all the way!”

PS
As fate would have it, the day this blog post was posted was M.o.C.h.A. four’s son’s birthday.

Also, I know I’m biased, but I wanted to also share with you that my crappy ovaries created three pretty gorgeous children and on the day this blog post was posted, I celebrated thirteen years married to their daddy.

A very special day to celebrate a very special story.

Let's just be kind to each other today