Transcript:

I couldn’t believe it. How was I going to tell my parents? They were so, so good to me and this, this would hurt them.

We had such a functional family with parents who were happily married and my two sisters and me, the middle child.

I had so many dreams! I was a great student. I made straight A’s and was in NHS. In just a couple short years I was supposed to be heading to A&M for vet school and life would follow just as planned.

How could I tell my dad? I was strong and athletic and played softball and basketball, and now that was over. How could I tell him that I am not gonna be his athlete anymore? I was in FHA and showed animals that we raised on our ranch in the local stock show every year. That was also over.

My little belly was swelling more and more each day. Does this make me the black sheep? My stomach was in knots constantly and I couldn’t differentiate if it was anxiety, sadness, worry or this little baby boy growing inside me.

I was pregnant. I was 16. I was a sophomore and I broke my daddy’s heart. He didn’t speak a word to me the entire pregnancy.

My dad mentioned abortion to me once but not in a pushy way, just kind of like giving me all the options but it was never an option for me. There was never talk of adoption. I just knew that everything that I dreamed was gone and everything about my future had to change.

And school? Oh my God school was awful. Horrible. Man, the stigma, the looks, the judgement, so palpable, so heavy, so obvious.

I was kicked off every team, of course. Talk about a walk of shame as I cleared my lockers and walked away from athletics and my teams one by one.

A lot of my friends were told by their parents not to talk to me anymore. I mean, I was obviously a bad influence, right? All the pregnant girls, there were three of us in high school at that time, we were put in a portable building away from everyone else so that we could finish our education alone. You know because if we sat too close to someone maybe they would get pregnant to, you know? My goodness.

I graduated high school and started my basics close to home as my baby boy and me lived in my parent’s home and relied on government assistance to help with daycare costs while I was in class.

My son, was great. So easy. He made everything more joyful. I was young and so naïve but knowing what I know now, he really took it easy on such a young momma.

His father and I didn’t stay together. We were just kids but he has remained in my son’s life since day one and even though he was not my forever, he is a good dad.

Those years my attention turned to school and work and soon I was able to move out of my parent’s home. A few years after living on my own I got married to the man that would father my next three children, all pregnancies requiring IVF.

I graduated with a degree in radiology and between IVF appointments, raising babies, working full-time and a husband who was never present due to a career in the oil fields, it was a stressful blur of years smashed together into one life.

After my second son was born, we decided to try one more time and got pregnant with twins.

We would be having a girl and a boy.

They were born at 38 weeks which is pretty good I think!  Big babies. Healthy babies. They were both very different from day one.

My little girl, was so great, so, so chubby and so cute. My son, my little boy, he cried and cried and cried and cried. Gosh he was so pretty but gosh did he cry. I knew the day I brought him home that he was different. I remember sitting in the bathroom so tender and sore from my C-section and with my mom helping me, I began to give him his first bath and just looking at his face, the way his eyes looked right to me but past me, I knew something was not quite right.

When he was six weeks old he lost his ability to suck. It’s like he woke up one day and completely forgot what a bottle was or how to use it.

After a lot of testing, they discovered that he had had a seizure in the middle of the night. Shortly after, his head began to enlarge and was showing up way past the 100^th percentile on charts. His tongue began to hang out of his mouth and a slew of specialists became our second family. Visit upon visit upon visit.  There were MRIs and CT scans and evaluations, genetic testing and genome mapping. No answers. Finally at 16 months old he was diagnosed with autism and epilepsy.

I think for me, my son was so severe that I was relieved to have an answer. When your child is literally, physically pulling out all of the hair on his head and eyebrows and eyelashes, yeah it helps a little bit to have an answer. It helps to have a “thing” to call it.

At that time, people were not in this healthy phase of accepting autism and supporting the differently-wired brain. This was a time when people were trying to “cure” autism. Parents were trying chelation and other things I can’t even say out loud and I just couldn’t wrap my head around any of it.

When I started to realize this was not “fixable”. When I started to understand that even with the hundreds of hours of speech and occupational therapy this was not going to change, it was devastating.  

In the face of adversity people like me cope with hard things by having a plan. There was no plan here.

I feel like grief and sadness didn’t really come at once. It didn’t come with a one word diagnosis. It came in pieces. Really small chunks.

We had some wins along the way like my son walking at three years old but as the bills of therapy began to pile up, the stress was overwhelming.

My husband and I divorced. He was and is still in denial of the severity of our son. Disconnected and disconnected by choice. I honestly don’t have time or energy to spare most days dwelling on this so it is what it is.

At four years old, elopement became such a huge issue in regards to safety that we had to get my son a service dog. The screaming and opposition were so severe and seemed to worsen in the public school system despite good support within our district.

Then somewhere along this path of my life, I was a gifted a good man. Such a good man. My second husband was the first to suggest we needed to send my son to a specialized school for children with autism in our area that paired students functionally and not by age and then transitioned them to a vocational program. It was amazing, but expensive, and never within my reach until my husband made it priority.

My son started in this specialized education center when he was nine years old and at the age of ten, he was potty trained.

Yes. You are reading(hearing) that correctly.

Ten years of big, big messes. Oh my gosh it was exhausting. There are no bathroom accommodations for a ten year old boy in a pamper let me tell you.

But nothing compares to the hurt you feel when a sibling is embarrassed of their sibling with special needs. It’s been really difficult for his twin. They are in middle school and kids are mean and life is hard and hormones are real. There was one particular year where his twin sister really struggled as her brother was known as the “kid with the dog” and he made odd noises and had no sense of personal space. But in just a one year span, she matured so much and their relationship is pretty typical for brother and sister with love and annoyance in perfect balance.  

My son’s favorite part of the day is when he gets in the car and we pick up his sister and he says, “How ya day sister?”

Puberty was and still remains a huge challenge and such a different kind of hard for me.  So hard and I don’t even know what is even appropriate to share. Like where is the limit of retaining dignity for my son but being vulnerable enough with my story to find people who can relate to me?

Friends? No. I don’t have friends.

From a teen pregnancy to a son with severe autism, I am not sure what kind of momma would have befriended me along the way? This is nobody’s fault and I don’t blame anyone. Since my son was not potty trained for so many years, we were completely isolated in our home and already a rural home at that.

My mom, yeah she’s my friend.

I am sure you can guess my biggest fear. What will happen to my boy when I am gone and he is so severe that those that are left behind can’t care for him?

He is so cute and funny and my biggest dream for him is that I just want him to have what my other kids have. I don’t know what specifically but I guess, normalcy? Independence? I just want him to be OK, whatever OK looks like. 

Meanwhile, I will keep wearing my autism shirts in public because my son does not “look” like he should be acting the way he does and I will keep finding my people one at a time. For us mommas that have children with severe autism, it stays hard. It just changes and that has to be OK too.