If anything, I want to document my experiences with my children honestly.
My life has checked most of the boxes on a very traditional path. I don’t want this to sound negative at all. Sometimes I feel like tradition gets a bad rap. As children we naturally learn to mirror the behavior of those around us. I learned quickly that to feel validated, happy and to bring happiness to others there were certain things I should do with my life. Perfect grades, check. Full scholarship, 4-year degree, check. Full-time missionary service, check. Marriage, check. All of these events are integral to the person I have become. I learned a great many things along the way, have many amazing friends, and especially my marriage I consider to be pivotal in changing the way I see myself…Adam is the love of my life.
I anticipated motherhood as another milestone from which I would gain great joy. I was right. Maximus Riley came into the world beautiful and healthy. As a new mother I was a amazed at my inner fits of paranoia. I never knew I could be so nervous to speed in my car. I would continuously check if he was breathing. People tried to explain it to me, but until I held my own little baby and felt the incomparable sense of responsibility and love awaken in me, it is impossible to understand.
Everything was perfect.
Perfect… a word that has new meaning for me now.
Max was developing amazingly. He was eating well. He was hitting all of his developmental milestones: tummy time, holding head up, rolling over, crawling, and even walking by 1 year. He could understand many things that we said to him. When we would name objects, people, or places he would look with his eyes or point. He even had a handful of words. He was happy, expressive, active…
Then at about 15-16 months old something changed. At first he just seemed a little fussier and maybe withdrawn. I tried to tell myself that he was just adjusting to his baby sister, Dempsey, coming home. However, I knew in my gut that it was more than that. The first thing I really noticed is that I couldn’t get him to point at things anymore. Then he wasn’t even saying the words that he knew before and he wasn’t making much eye contact. Within a matter of months he had totally regressed in all of his language and social skills.
I can look back on it now and see it all so clearly, but at the time I was in denial. I had a newborn. We were trying to get back on our feet financially from recent layoffs. So the the next year was spent coping. As Dempsey began growing she was not hitting her cognitive and social milestones either. Early intervention and evaluations by experts had given me very little information as to why my children were like this and what I should do. Doctors said they didn’t want to give either of them a formal diagnosis, but with their early emerging symptoms they both seemed to be on the autism spectrum. I immediately wanted to blame myself. You see, I have epilepsy. During both pregnancies I had to take anti-seizure medication. It had warnings on it, but I naively just took my doctor’s and neurologist’s advice that it would be worse if I had a seizure while pregnant, so I should just continue taking the pills. Now of course, it can never be proven that medication was the cause of anything, but I just want you to know that as a mother I cannot keep my mind from going there and feeling that guilt, responsibility, and wondering how our life maybe different if I had done things differently. Perhaps it was immunizations? Maybe it was the result of toxins in the environment and in the food we eat? My feeble human mind wanted an explanation so badly, but my heart didn’t want to face the reality.
I had diverged from my perfectly traditional life path.
Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood
And looked down one as far as I could
To where it bent in the undergrowth;
I couldn’t see down this path. I was in a very dark place. Every time I looked at my children and thought about their unknown future, it was too much. I would break down and become emotional. I would lash out at the other important relationships in my life. I was at times very self-destructive and self-deprecating. I very literally had to grieve over the future I had envisioned for my children and what their reality was now. Would they every really SEE me? Would they call me Momma and know what that meant? I was trapped in my own sadness and fear. Something that fed into this fear and grief was recalling growing up with my younger brother Tori, who has special challenges of his own. I remember very clearly how difficult it had been for my own parents as they struggled to understand and deal with Tori’s developmental issues. The thought of facing years of aggression, anger, and unpredictable behavior left me paralyzed and depressed.
I cannot name the precise day or moment when the grief began to subside and I was able to start living in the here and now. Much of the credit can be given to my amazing husband, who continually supported me, encouraged me, & reassured me that those babies needed me and I needed them. He loves them so purely. He has always held so much optimism and never compared them to other children. We often had conversation about how it felt like Max had left us. He was a totally different child and we missed the boy we knew for 16 months. After what felt like years of tears, prayers and feeling like I was in survival mode, I was finally ready to take some action.
I began making myself my children’s expert on their brains, nutrition, physical bodies, developmental stages, and behaviors. I started finding other parents who were going through similar issues to give me some direction. I started looking around my town to see what resources there were outside of the government funded programs. When you know better, you do better, right? At least for me, if I knew better I couldn’t live with myself if I didn’t do everything I could to help my children live up to their potential during this life. I signed up for this gig, so I needed to earn the title of Mother.
I feel incredibly blessed. Locally, we have been working with The Brain Balance Center. The minute I went to their open house and they started talking about neurodisorders and how the brain works it was like they had been with me from the beginning, watching my children grow…everything they said described to a tee how my children were experiencing the world. Not only could they explain why my children were acting this way, but they had strategies and techniques that would help to treat the whole child and not just the symptoms. I hope to document my and their journey. It is not always easy to see the everyday changes when you are on the path until you look back at how far you have come.
I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I,
I took the one less traveled by,
And that has made all the difference.
What is my road less traveled? Well, for now it is choosing not to give up on my children. It is making the choice to turn our lifestyle on its head if necessary, to see them thrive. For me, it is figuring out what it really means to have the perfect children and the perfect life, and not just what I have always thought it meant. And although at this moment in time my children each have very limited communication and find it hard to sustain eye-contact, there are times when they allow me…moments. Sometimes Dempsey, who is 2 1/2 and knows barely 4 words, will catch my gaze and hold my face with her little hands.
Time stops. I.see.her.
Max, who is almost 4, sits on the school bus and stares at me through the window. I wave at him like a maniac and mouth “goodbye Max. I love you” unsure if he knows exactly what I am saying, but with faith that one day he will wave back.
I know they are in there. This is my perfection.