Note: I'd like to thank Shelena for sharing this honest, raw post about her life. It's not easy to write about yourself, your family with such emotion. It takes guts. Please join me in welcoming her to Age of Autism. Share your story in our comments. This is a safe place to talk about the unvarnished and yes, often tarnished, lives we lead. Lives rearranged by autism. We do it out of duty and love.
By Shelena Jensen
Have babies. A simple, but strong, carnal female instinct that I had for as far back as I can remember. I never dreamed of a career. As other girls fantasized about being a teacher, doctor or veterinarian, I could never get excited about anything regarding adulthood, other than getting married, having babies, and being the best mother I could be.
My childhood pretty much sucked. You could say I fit the typical statistic of a child of divorce, abuse, poverty, and everything else that comes with that bullshit. My entire reason for not putting a bullet in my head as a teenager was meeting the love of my life and the strong will to have children and give them the kind of life I should have had. The kind of life, every child should have. I wanted to be the perfect mother. A stay at home mom who dedicates her life to her children.
I was going to be the mom who would wake up every day, ready to enrich my little baby's life with knowledge, creativity, optimism, and love. My child's home would always be clean, welcoming, safe, and nurturing. And most importantly, a home where the truth and love of Jesus would be shared.
I would be the mom that volunteers regularly in the classroom, goes on every field trip, never forgets a picture day, always sends her child to school, clean, well fed, happy, and ready to learn. The mom who would teach her child to be kind, intelligent and always remember to treat others as they would want to be treated.
I'd say I did a pretty good job at living up to this dream when my first son was born. A perfect 7 pound, 10 ounce baby boy with a head full of black hair, and a cry that could clear a room. Although I did develop a pretty bad case of postpartum depression, I was able to overcome it through prayer and guidance from God. Also, I’m sure the Zoloft didn’t hurt.
As my baby got older, and especially as he started to sleep through the night, I didn't take one minute of being blessed with a perfect baby boy for granted. I rarely felt the slightest bit overwhelmed. I woke up every day enjoying life. Of course there were days that could have been better, but I was just so happy. I loved this little baby with everything I had. I had pushed my depression and anxiety far back into a place in my mind, far enough that I thought it would stay there for good.
I put off having another baby for fear of going through the dreaded sleep deprivation and postpartum depression again. Three and a half years later, my second son was born. During my pregnancy, I wondered if I'd be able to love another child as much as I loved my first born. But when he entered this world, a plump 8 pound, 4 ounce baby, also with a head full of black hair, and I held him in my arms, it was the exact same love that had consumed every ounce of my being once before.
I had the perfect family. My high school sweetheart and two adorable little boys.
Our new baby was such a sweet, easy going baby. He slept through the night at 3 weeks old! He loved when big brother played with him, and they formed a close bond from day one. He was hitting all of his milestones right on time. He was a very happy, social baby who smiled and laughed often.
Within the first few months of his life, he suffered from chronic ear infections which were treated by one round of antibiotics after another. By the age of 6 months, he had been on antibiotics almost every month due to his ear infections. During his 6 month checkup, I asked the nurse if it was ok for him to continue to be vaccinated even though he had been so sick and on so many antibiotics. She assured me that it was fine as long as he wasn't currently running a fever. So I blindly trusted her.
My baby boy received 6 shots that day. He developed a high fever, he had a red and swollen lump on his thigh were they jabbed him. He screamed all night, his cheeks were beet red, and he was very irritable for days. I called the doctor during this and they assured me these were all normal reactions to his vaccines.
So I continued to vaccinate him, even while he continued to be overdosed with antibiotics and still suffering from chronic ear infections. With each vaccination, his mental and physical health slowly deteriorated. I was too naive and uneducated to recognize it.
At 12 months he received his MMRV. That's measles, mumps, rubella, and chicken pox all in one. Four live virus were injected into the bloodstream of an already immunocompromised child. It was the straw that broke the camel’s back.
He lost all eye contact, stopped responding to his name, started spinning in circles, flapping his hands, lining up objects obsessively, refused to eat foods he had always eaten before, his bowels were a wreck, he was surviving on PediaSure for "nutrition", he screamed and tantrumed most of the day, and he was a very sick, hurting, and miserable child.
In my heart, I suspected autism, although I knew almost nothing about it. My spouse and I fought over getting him evaluated. He was in denial. I finally made the call to have First Steps come to our home to evaluate him. They determined he needed speech, occupational, and developmental therapy. They sent a psychologist to our home, who after observing him for 60 minutes determined he had autism spectrum disorder. My worst fear had been confirmed.
This was the beginning of our new life. A life we never could have anticipated if we tried. I began researching like a mad woman in a desperate attempt to educate myself and find options to help our baby boy. I found an organization called TACA (talk about curing autism) which opened my eyes to the vaccine-antibiotic-autism connection, and how to detox through diet, supplements, chelation, and other natural ways to heal the gut and undo the damage done to a very poisoned body.
I started to share everything I had learned eagerly with my husband. He was very much a skeptic and said there is no way we could afford it. He also questioned what his son would be able to eat, and that he may starve. He was scared. I was scared. We fought about this issue nonstop until he finally gave in, reluctantly.
At the age of four, much later than I wanted, we started the DAN (defeat autism now) protocol. We removed gluten, casein, soy, dyes, and artificial flavors. We added many nutritional supplements daily as prescribed by his autism specialist. Our son went from a nonverbal, self-abusive, diaper wearing, miserable boy, to being fully potty trained, began to be able to communicate his wants and needs with simple one or two word sentences, his self-injurious behaviors almost disappeared, and he was happy again! My husband feels a tremendous about of guilt for not listening to me and agreeing to start when I wanted to.
His progress has been slow, but steady. He is now 10, and can communicate anything in full sentences, he can read and write, is a math expert, meltdowns are few and far between, and he is a happy child!
We still have a long way to go, and we still have days where we feel like giving up. Living with autism on a daily basis can be unpredictable, stressful, challenging, EXPENSIVE, and exhausting.
No matter how much progress is made, and how thankful we are for any of it, it is always a struggle. Every day is about survival. Trying not to go crazy thinking about the future, what will happen when we are both gone, trying not to worry about IEPs and case conferences, trying not to worry about being able to afford his food and supplements, trying to balance time dealing with autism, trying to be a good wife, and making sure my sweet, amazing oldest son isn't getting left out because of the constant needs of his brother.
Raising a child with autism has aged me beyond my chronological age. I feel my mind and body struggling to function some days. It has changed what I can tolerate and enjoy. It has exhausted my patience and has affected my ability to be around large groups of people or children. It is hard work, every day and I'm pretty much tapped out in every way.
But what raising a child with autism has also taught me, is how to be a better person. I'm a better, stronger mother. I don't take anything for granted. I stop and thank God for the simplest things each day. My son has taught me the true meaning of unconditional love and brought out the warrior mother in me. He amazes me every day. His smile, his hugs, his kisses, they are all pure and genuine. He doesn't have the ability to be fake, to lie, to intentionally be rude or mean. His soul is pure innocence, and angelic.
I struggle with the guilt of the "what if I would have known then what I know now?", every day of my life. His autism was preventable and it haunts my soul. This is when my anxiety, depression, and childhood memories make their way back up to the surface, and I question if I'm strong enough to be the person I have to be in this life. But I will never stop fighting for him. His brother will never leave his side. His father will do everything in his power to make his future successful. This family is strong. The love we have for each other is unbreakable.
Although this is not the life I dreamed of as a little girl, I am no less proud or thankful for the family I have been blessed with. After all, God did answer my prayers for the family I had been longing for. As my children become adults, and look back on their childhood, they will never describe it as one that “pretty much sucked.” This is my passion. This is my career. This is my life.
Shelena is the mother of two amazing boys. Her youngest son has autism. She met the love of her life and soul mate at the age of 15, and they have been together since that day. She dedicates her life to simply loving and caring for her family, and improving the quality of life of her youngest son.