I have no quirky, dramatic, or fun introduction for this post. This is your only warning that this post will break you, for a while. I don’t know what part. I assume it will be different for everyone that reads it or listens to it. This story that was shared with me on a weeknight by a total stranger was so powerful, so impactful, I knew that I could not portray it with written words alone. You will now have an opportunity to either read or listen to this story being told as a monologue. It is the only way I can give this momma’s story the justice it deserves.
When I started this journey I anticipated this would happen. I knew there would be a story that impacted me so profoundly that it would be hard to share and duplicate. I had a feeling it would be about a M.o.C.h.A. in her darkest days, when things weren’t great and blessed and wonderful. A story where autism wasn’t always beautiful. What would I say? How would I respond? I worried about this so much as I sat with each person and it is EXACTLY what happened when I sat down with M.o.C.h.A. three.
Come lean in with us.
Click this link to listen to AUDIO version.
When I was in high school I wanted to be an attorney. Yeah, small dreams. I was nowhere near the top ten and it felt like they were the only ones getting all the college talks, you know? No one asked me in high school what college I wanted to attend, or if I needed help filling out college applications or Free Application for Federal Student Aid (FAFSA) forms. No one asked me what I wanted to be or what my career goals were but it sure did seem like the top ten had their ducks in a row for sure. I knew I wanted to do something with my life that focused on children. I wanted justice for those that couldn’t defend themselves. My parents were divorced when I was really young so I stayed with my mom who worked full-time while my dad was somewhere on his own. It was definitely a time of strained relationships and with a big extended family on both sides and a lot of friends, I’ve seen things. Some kids need a protector when their parents aren’t there to protect them. Some kids need a strong person to be their voice when they can’t speak up for themselves. Anyway, besides lofty attorney dreams, I was really just a wild high school teenager. It was back in the day when skipping school to go to Mexico was not so crazy dangerous and was actually fun and pretty common. It was on one of those Mexico trips my senior year that I met a guy. We met for the first time at a bar called Eclipse so we tell our kids that we met on the moon which obviously sounds way more romantic than it is. Oh my God, I know. Don’t judge.
So we graduated from high school and well, that was it. We both got entry-level jobs and I had my first baby at nineteen. We were babies, having a baby. She was so perfect, my girl. The first year that all three of us were a family was so good but went sour pretty quickly when I lost my job. Basically everything in general took a turn for the worse and eventually we separated.
For some reason I have always been mindful that one of the few things that can’t be taken away from you is an education. Really think about that. People can rob you of all sorts of things, material things, joy, happiness, self-respect, self-esteem but no one can steal your education.
So after one year of being a stay-at-home mom, I started college when I was twenty-one with no earthly clue what I was doing. No really, all I knew was that I had this little girl that I needed to provide for and be an example for and that was plenty motivation for me. There was a daycare on the college campus that let me leave my baby girl for fifty bucks per week and was flexible with class schedules so I went for it. A full-time student studying psychology and anthropology and business. Whoa. Yeah. I know.
Throughout my first couple years in college my boyfriend and I were on and off like all the time and during one of those “on” times, I got pregnant again. This time, it was a boy. I remember those first weeks after we found out the gender how much I daydreamed about that little guy. Oh man. Even though we were so hot and cold as a couple, I was still so proud to give my boyfriend a fishing buddy. We love to fish. It’s what we do. I would daydream of the man I would raise. I didn’t grow up around my dad and my son’s dad was in and out of my life at the time so I remember feeling this overwhelming responsibility to make him a good man, a good husband, a good dad, a good person. And also… I dreamed of wearing his football jersey on parent’s night. In my dream I am blinged out with his team’s colors and his name on my shirt and maybe on my jeans. OK maybe on my nails too. You have to stay humble. I would be glowing with pride as I walked the field holding my cheap carnation and my arm in my strong son’s arm and him looking so proud to be standing with me too.
When he was born I was shocked at how much curly hair he had. Oh my gosh he was so cute and my daughter who was five just loved on him so much. He could do no wrong in our eyes and then, six weeks after I had my son, I was pregnant again.
I had two sons ten months apart. Three kids before I was twenty-five. I know, I know. You’re judging again. Stop.
It was really close to the time that I had my second son that I started to notice. There is not really a word for what that feeling is but it’s when something just didn’t sit right with you. It’s the feeling you get when your mind is questioning something but your heart hasn’t caught up.
I would watch my first son sitting on the floor and all of a sudden he would lift both hands up to chest height and start rotating them at the wrists. Sometimes after a few minutes he would start rotating his ankles too. At the time my sister, who is really truly my best friend, was studying to be a special education teacher and we would kinda joke about it at first. We would make comments like “uh, well maybe he’ll be a good pitcher? Or a good swimmer?” We would giggle and then again, my mind would race but my heart trailed behind.
By the time my first son was one and a half he wasn’t talking. Socially he was amazing, so happy and all smiles and ate so well and was not a picky eater at all but I still knew it wasn’t normal for him to not have any words by that age. The pediatrician referred me to the only place that would take me at the time, Easterseals. I had zero money, my kids were on the Medicaid Children’s Health Insurance Program (CHIP) and I was a full-time college student, so yeah, it was definitely interesting times. The process was super long. So much for early intervention, seriously. It took six months to get into Easterseals and for me it was not a positive experience. There was a lot of turnover and inconsistency in the therapists which made it so hard for my son to feel comfortable. I mean really, would you want to spend a whole hour in a room just one on one with a complete stranger asking you to do stuff that you may not know how to do or maybe don’t even understand what is being asked of you?
Thank God kids are so resilient.
But you know, I was doing my best. I was a young mom, full-time student, had no one consistently helping me and I didn’t know jack crap about all of this stuff so we followed instructions. We went twice per week and even got them to approve some occupational therapy (OT) visits in the home which, wow, yeah those didn’t go well. I remember one time the home health occupational therapist basically told me that I was making eggs all wrong then gave me a degrading lesson on how to handle my pots and pans on top of a stove. I was like “Hey, this is my house so I’m gonna put the pans where I want and cook eggs also the way I want. Thanks so much.”
But eventually it was the “cry sessions” that pushed me over the edge and I decided to decline the OT service in my home. Of course at the time I just didn’t know any better but pretty regularly my son would throw a fit during OT sessions. He would either not be compliant at all with the therapist’s requests or he would get aggressive or angry. So the solution to this behavior was “OT Time Out”. The therapist would choose a sofa and it would become the “cry couch” and she would let him cry it out. One time it lasted forty-five minutes. I still have a lot of guilt about those days but I seriously did not know any better. They have all these people called professionals, you know? And you just let them come into your home and provide “therapy” to your child and you figure they know what they are doing. I mean they are the experts, right?
We tried Easterseals for four months and then my son turned three which is when you have to move to Head Start programs. So I showed up to Head Start in my town and I asked for my son to be tested. Keep in mind that he was social and looked perfect so this attempt at testing brought on a lot of speculation that I was not prepared for. I had all my records from Easterseals but I just felt like I was missing something. Why was everyone so skeptical of me? Why were they all looking at me like I was lying? WHY THE HECK WOULD I BE LYING ABOUT THIS?! Oh yeah. I was a young single mother with three kids and on CHIP.
I must want a check.
Man, I tell you what. I know that stereotypes exist for usually legitimate reasons, but even though stereotypes tend to tell true stories they don’t tell complete stories.
Against all odds I did graduate with a four-year degree in four years with three kids and all alone. So much for stereotypes.
I got my first job as a co-teacher at a charter school when I was twenty-six and my first son was just entering into a half-day Head Start and half-day prekindergarten program. Right away I started getting feedback from his teachers. He is not playing with any friends or he doesn’t have any friends. He doesn’t follow the rules and doesn’t want to wear his shoes and why isn’t he potty trained?? The Head Start teacher was really kind but I found out through others that the classroom teacher would ask him to be removed pretty regularly by the paraprofessional. So now that he had been in the public school system for the required days and weeks that are legally required before considering special education for a student, it was time for testing.
When the day came for the first Admission, Review, and Dismissal (ARD) meeting I was so nervous. I mean I had graduated by this point and I was working within a school but I still knew nothing about ARD meetings or Individualized Education Programs (IEP) or Behavior Intervention Plans (BIP) or any other ridiculous acronyms for that matter.
There in that room I had several professionals tell me that my son tested as autistic and with speech impairment.
My son has autism.
Oh my God. OK, I was just breathing in and out slowly and I asked what that meant as far as services. Well, I was told that I had to choose one. I could only choose one label of non-categorical with underlying autism or speech impairment. I asked, “But why if he has both?” I didn’t get a direct answer I was just told I had to choose. So I looked at one professional across the table and asked, “OK which label will get him the most therapy time, like the most speech and occupational therapy minutes or hours per week?” She was about to answer me when another professional at the table stopped her and said, “Don’t tell her. She has to choose first. You can’t tell her that ahead of time.”
I was stunned. It was like I wasn’t even in the room. You know looking back I get it. I probably looked like I was twelve years old and it was true, I was clueless but you don’t have to be a genius to know when something is just morally and ethically wrong. You aren’t fooling anyone. I stopped the meeting. I literally stood up and said, “This meeting is over.” People, I have all of this recorded.
I knew my rights because my sister was now a Life Skills teacher and had at least warned me that if I was not happy with the outcome I could ask for another ARD meeting with re-evaluations. So I did. My sister, she is my rock. I really don’t know what I would have done or what I would do without her. It’s scary to even wonder that sometimes.
So I also found a family friend that was a diagnostician in another district that agreed to sit in with me on the repeat ARD once the Full Individual Evaluation (FIE) was complete. I recorded this meeting too and we decided to go with non-categorical with underlying autism because things were not going well in the regular education classroom and this label would place him in a self-contained unit, like a special education classroom. My friend helped me look over the education plan and the behavior plan to make sure it was correct and complete.
During all this, I was ignoring my baby.
My second son. My baby.
He was now two years old. He wasn’t talking. He was so different than my first son. He would stare and was just so quiet. I had him at a great little daycare where the lady in charge is like my savior seriously and just loves on him so much even till this day.
So I wasn’t really worried at this point because the only thing wrong was speech. He was not doing weird stuff like rotating wrists or anything. He was just quiet. He was accepted into Head Start when he was three. Then around that time, he became aggressive. He wouldn’t sleep. He was tested and placed in a Preschool Program for Children with Disabilities (PPCD) unit with the label of autism.
My baby also has autism.
The next few months were a blur of genetics doctors and sleep doctors and we switched pediatricians and went to Ear, Nose and Throat doctors (ENTs) and behavioral pediatricians and you name it we went. All while both working full-time jobs. By now my boyfriend and I were married and man, we were put through the wringer.
Because my first son had had such a hard time in the combo Head Start/classroom at that particular school I decided to move him to a bigger district. By this year he was four and I finally landed my first full-time teaching job. Basically I wasn’t a co-teacher anymore.
At first he did OK. They tried him out in regular education classes and even had a dog visit the classroom that they called an “emotional” dog which made all the kids happy, especially my son. The counselor was awesome and everything was OK but just for a short while. He started to isolate himself pretty quickly. He would come home with injuries that no one could explain, which really means no one saw them happen, which really means not enough supervision for my boy. He needed a lot of breaks and one day when my husband dropped him off, he overheard a student sitting at the table with him about to have breakfast say, “You can’t sit here because you are going to ruin everything.” Hum. Learned behavior? Would a four year old learn to say that on their own? Was that the feeling overall of the class?
He lasted three months in regular education. Three long months.
Meanwhile my baby, my second son was close behind and was able to start in the same school with his brother. We tried them in the same class for one semester. It was a disaster. The dynamic was just too intense for them both and they needed a break from each other during the day. Don’t we all?
So let me tell you… last year. Last year we hit an all time high of disaster. It was the most challenging year of my life so far and I am not even sure I will survive or can survive another year like that.
My first son became completely defiant. Always. He started talking to me using cartoons so when I upset him or when he was unhappy with me he would say, “BAYMAX DESTROY HER!” I would think, Baymax got nothing on me kid. Bring it. He would get so angry and mad for very simple things like the time he was so frustrated with his iPad that he slammed it into his forehead and cracked the screen. But overall, after that rough year of aggression and anger, he is finally starting to do better in school and now goes to class one door down from me in the same school where I teach. He prefers to be around adults and we have good days and weeks and more challenging days and weeks but it helps so much that he is now somewhat verbal.
Then there is my baby.
So imagine this. Imagine you are at work. You know, stressed, trying to meet deadlines, dealing with bosses and colleagues that you love and don’t love and paperwork and projects and all of a sudden your phone pings at you. Text message. It’s a picture of your son with a scowl on his face with a text indicating he is in a very bad mood today. Uh, OK? So you think maybe it’s just a bad day. Then an hour later, another ping. This time it is a video of your son ripping paperwork and knocking things off a desk. Crap. You think, OK let me finish this one thing for work and I will call the school, but nope. Too late. Another ping. This time another video of your son crying and howling for no reason at all. I get pictures and videos almost every day of things he is doing or not doing in class. It is … I don’t know the right word … defeating? Pictures of how he messed up the classroom or his clothes, or videos of him screaming and the text asking me what to do.
He is also not sleeping. I have had broken sleep for months. All of a sudden at three in the morning my bedroom door slams open and there he is jumping, hopping, crashing into my bed, stimming. He pours water purposely on our tile floors because he is mesmerized with the way it looks as it travels through the grout and lines. He wakes up with no notice and will go to every single cabinet in our home and sit in front of it and open it and slam it closed, open it and slam it closed, hundreds of times. Hundreds. I’ve counted. He is completely non-verbal.
He also started physically hurting me. Yeah that’s new. I don’t know how to describe how that feels. Degrading? Embarrassing? God that sounds horrible to say.
But last year changed everything. Last year he became a runner.
I still remember the way the door sounded as it slammed against the wall. By the time I realized what had happened and by the time I slammed the door back open he was gone. The next ten minutes felt like hours and were a total daze but I remember three things clearly, the sound of my breathing, the pain in my side, and the way he looked when I found him.
I was sprinting. I didn’t know where to go or what way to turn I didn’t even know if I had shoes on or not and I still don’t remember. I was in full fight for your life mode where the worst sickest fear you can imagine is slapping you in the face over and over again as you breath. The fear is so big it feels like you are going to die. As each car sped by me I kinda panted “oh my God please slow down… oh my God please… my son… please”. I wondered if that car would be “the car”. I stopped for a few seconds to call the police. I just yelled and panted and screamed at the 911 operator. I was hysterical. Shrill. I put my phone back in my pocket and started to sprint again this time telling myself how stupid I was. I am inadequate. I am a bad mom. Why the hell did God do this to me and my family? I was mad at God and I felt like dirt, just so low and so unworthy.
When I saw my son in the distance I just let myself fall into the pain and fear and sadness. A landscaper had picked him up and was carrying him.
He was only wearing a pamper. He was four years old.
Right then and there as I tried to catch my breath with my hands on my knees and my side splitting with pain I saw a flash of him at twenty-five years old, in a pamper. As I walked up to him and held him, I started shaking and literally planning his funeral in my mind. He would not survive this behavior for long.
Then the police arrived and whatever sliver of self-esteem or hope I had about what kind of mother I was, was completely obliterated. Heavy judgment. Degrading questions. Outrageous accusations. Probably all within their protocol. I mean how could they have known? How could they have known about all the doctor appointments, therapy sessions, ARD meetings, late night crying and praying that we had gone through? They couldn’t know. How could they know about the sadness the loss the pain the grief and the disappointment? They couldn’t know. How could they know what it was like for a “normal” trip to Chick-fil-A drive-thru or a daily drive to work to involve getting punched, kicked, with your hair being yanked out almost in patches with anger and frustration by your own son? They couldn’t know. How could I expect someone else to understand this pain if I myself don’t even have the courage sometimes to let myself stop and feel it all?
After that day my husband, who barely was starting to accept our reality, and I started to get serious about our future. Our family’s future. We decided to build a home on land, far from a road, and even further from water, and installed a good security system. I swallowed whatever pride I had left and added both of my sons to state program lists so they would qualify for services when they are older if they cannot provide for themselves. I bought life insurance for all of us. And lastly, with so much guilt and hesitance, I started my baby on medications. It was not a stimulant and it was just for anger and aggression and for sleep but after a few weeks it just made everything worse. We’ve already exhausted all the crazy diet suggestions and since my sons have such a high intolerance for a toothbrush in their mouth due to sensory issues, we’ve never even allowed sugary drinks or junk food because we know how hard it is to keep their teeth clean and healthy as it is.
Right around this time is when I started teaching in a classroom full-time and honestly, I think my job saved my life. It saved my sanity for sure. Throwing myself into my job each day is the way I cope. I have always felt like God didn’t make me good at anything. Do you know what I mean? I have no skills, no talents. I am not a runner. I’m not a musician. I’m not good at anything. I was good at teaching. I love teaching. It is where I escape and where I excel. As I started to realize the impact it was making in my life I knew I had to work at advancing myself. I had to start looking into upper administration. All of this also helped me to start seeing my sons and my life in a new light. In a different per-spectrum per se. I realized that the more I fought God the more I struggled and the more I followed God the more things fell into place. You see I think I spent so much time asking God to make things happen for me and to give me answers but I never took time to listen for a response or to notice that everything that was already happening was guiding me exactly where he wanted me to be.
Without my little girl I would have never been pushed to get a degree. Without my sons I would have never learned about IEPs and BIPs and ARDs that now made me a prime candidate for an assistant principal job that I landed and will start next school year. Without my children I would have never signed up to get my masters degree. It is so clear to me now that God always intended for me to bring justice to children, in the classroom. God always intended for me to be a voice and protector for children, especially my own.
I started to pray differently. Instead of praying for a big house I started praying for a big job to have enough to buy that house. Instead of praying for God to please potty train my four and five year old sons, I researched, I studied, I picked my sister’s brain and asked God to give me the patience and the know how to help potty train my sons. I used visual cards and Crunch bar wrappers and social stories and finally, after years of finding feces in corners of my house, it became less and less. My sons are now six and seven and are fully potty trained. Instead of scream praying and shaking my fist to the sky in my shower or in my car, I started opening my hand and laying it on my sons. I pray over them. A lot of my anger towards God is gone. I feel like he has been preparing me for years for the mother I was meant to be and the purpose I was meant to serve.
There are still many more bad days than good days. There are many family gatherings where my sons can’t handle the crowd and after a meltdown and family members saying “they just need a good spanking” I end up spending the evening in a bedroom, a random bedroom holding my son as he falls asleep while the party continues. It’s definitely my time of acceptance.
And friends? Please. I have no time to pay attention to anyone else. That’s just part of the package. I have a few great friends that love me unconditionally but I know I don’t give them nearly what they give me. I am not a good friend. I can’t be a good friend. My sister is my rock and my husband is my companion.
This is my biggest regret. Not that I can’t pay attention to my friends but that for a long time I was not my daughter’s friend. All these years, these tough crazy years I didn’t give her my best, my time, my all. My mom would pick her up for girl time and girlie days and I know I missed out on some really sweet years with my little girl. She has seen and lived through it all. The crying the praying the screaming and wild, just wild times. She was five when my first son was born so about the time she was seven or eight is when I know she will have her first memories of me crying and screaming at God in my car to “TELL ME WHAT TO DO!”
She is such an amazing person. Nurturing by nature and kind, so kind. I remember when we had her eighth birthday party she invited an inclusion student from her class that had autism. It was all I needed to see. She makes me so damn proud. She has learned so much in her short life it’s kind of incredible and heartbreaking all at the same time. When I ask her what she wants to be when she grows up she has the same answer each time; whatever job I have to do, whatever job I have to have to find a cure for autism. That’s all her young mind knows. She doesn’t know how else to help but to find a cure. All I can do is pray that one day she realizes that people like her are the only cure my sons need. The cure is kindness and patience and the ability to see the potential and love and difference without seeing them as inferior or less.
As my youngest son started to get more physically aggressive last year, she was sometimes on the receiving end. After episodes like this we would just hold each other and cry and she would tell ME not to worry. My little eleven year old girl hugs ME after she has been hit or had her hair pulled and she hugs ME while I cry and tells ME not to worry because she doesn’t want kids of her own. She comforts me and tells me that she wants to take care of her brothers instead.
That is just soul-crushing as a mother. She is innocent of any wrong and she has to endure this with us.
And even in all this, every once in a while, as I sit here in this dark part of my life, in the valley, there is that little speck of light. Like just a glimmer. It is that little speck of light when we walk into the airport and my little son disrobes to jump in the water fountain full of innocence and joy. It is that little ray of light when they are wild and free playing outside without a care in the world. It is that little peek-a-boo of sunshine when my son comes up to me in full pantomime and with his hands shows me the dimensions of a box and with wide eyes full of joy holds my hand palm up and gives me his present. He is happy to give it to only me because only he knows what it is. It is that little shimmer you see in the distance when your non-verbal violent son comes to you and sits in your lap for a cuddle because it was a good day and somehow he just sees into your soul without you saying a word. It is those times that I just pray to God that I did enough to change the world enough to make it the most kind and happy that I can for my children when I am gone.
So right about now you are thinking, uh shoot, what can I do for this poor woman? Well, I will tell you what not to do. Don’t send me your pity. Send me a joke. Make me laugh. We all have a battle, I just happen to be right in the midst of it.
Know that our family understands that this is a marathon we are in, together. So we will be patient. We will run the race. We will fight the good fight. We will never give up. We will persist with love and maybe a few good jokes.
I am M.o.C.h.A. three and I have two sons with autism.
I don’t know about you but I walked away that night after hearing and seeing this story live and in person thinking, no excuses. No excuses ever again. M.o.C.h.A. three has a fire in her belly that has to be seen and heard to understand. She is a powerful testament to the resilience of the human spirit and the true grit of a mother. I am honored to be her friend and I am blessed to share her story.
So that is the answer my friends. When you have a friend, a loved one, a spouse, a co-worker that is in the darkest part of their life, the deep valley…sometimes we don’t have words or answers or help to offer and “I will pray for you” just doesn’t seem to be enough. Maybe we need to learn to just sit with them in the dark for a while. True friends are companions regardless of what season of life is upon you. And if you are a M.o.C.h.A. that is in the dark part right now, let me pull up a chair. Let me give you permission to be pissed and mad at the world. Life is not fair. Life is hard. Life is cruel and the innocent suffer. I get it. I have been there too. So I will sit with you until you see the purpose this all brings to your life. I will sit with you knowing that you are strong enough, determined enough, gritty enough, resilient enough, patient enough to crawl, walk, or sprint out of the pitch black and I’ll bring the glow sticks. Let’s just keep moving together.
Thank you for spending time today to view the world with a whole new per-spectrum.
If you need help leaving a comment feel free to copy and paste this to show M.o.C.h.A. three how inspired you are after reading or listening to her story.
“M.o.C.h.A. three, thank you for showing us that stereotypes can be dead wrong and for inspiring us to NEVER GIVE UP! Just. Keep. Moving.”
Let's just be kind to each other today