Guest Post #2: Surrendering to the Diagnosis
Updated: Dec 4, 2019
*Most authors for this blog series have chosen to remain anonymous in order to protect the confidentiality of their children while still sharing their story. Documenting our stories helps us process our experience, sharing our story helps us connect to others with a shared experience, and reading others' stories help us not feel so alone. Welcome.
Surrendering to the Diagnosis
I remember where I was when I accepted my son’s autism diagnosis. It was long after I knew that he had autism. It was the moment of my surrender. When I let go and allowed this new life to happen to me as a mother. Looking back, I now see the stages of grief.
I had experienced grief before. My father passed away unexpectedly in my twenties before I had children. Because of this unexpected loss, I vacillated between anger and depression for several years. Therapy helped and so did finding ways to celebrate my dad’s life. But, we don’t just grieve over the loss of life. Grief can also be about the loss of a dream and the moment when we realize that we are, in fact, not in control. Letting go of this control was the hardest part for me.
I am a recovering perfectionist. I was an anxious, yet high-achieving, child who learned quickly that the easiest way to avoid those pesky, negative emotions was to do what was asked of me and stay out of the way. When I was compliant, people were happy. When I achieved things, people were happy. I learned that making people happy felt good and I was lucky enough to have the skills to comply, achieve, and control this positive feedback loop. Until I became a mother.
I think all mothers of young children can relate to this loss of control on some level. We lose control from the beginning. We are no longer in control of our sleep patterns, when we can catch a bite to eat, or when we socialize. We have to relearn how to care for ourselves in this new world and it is nothing like the tight, neat control we had over our life before. However, children do grow up and become more independent, so we eventually regain some control.
Yet this hope is threatened if we have a child with a disability. I was afraid of this idea. This fear would lead to the loss of my controlled plan. I was being asked to let go of the dream I had for my family. I knew that this new life would be harder than I had imagined. I was afraid of what others would think. I was afraid that I was not strong enough.
The denial began as tiny whispers in my head. Curiosities that I dismissed but worried about. Why does he play with the mailbox doors instead of with other children at the park? He’s going to be an engineer like his dad, I think. Then a pre-school teacher mentions that he seems overwhelmed in a group and only stands on the side to watch. He’s just an introvert, I think. He’s anxious like me, I think. It’s just his personality; it’s not a “problem.”
The pediatrician is concerned that he isn’t stringing together words at age two. So, we begin speech therapy. We will work on this and he will improve. He begins reading but I didn’t teach him to read. He reads signs everywhere and people tell me, “He’s so smart!”
Preschool teachers ask for a meeting. They are concerned that he’s so distracted by all the visuals on the wall and not engaging with other children. His attention span is short. I continue to deny what I know in my heart and proceed with the evaluation anyway. It’s not just a speech delay. It’s not just an anxious temperament. But, maybe it is.
On evaluation day, I think of all the ways the clinicians are not capturing the strengths of our boy. He’s so social with familiar people. They are not familiar. He’s never seen those toys before. Of course he’s not interested.
The diagnosis comes with lots of data to support what I already know yet am too scared to say. He has autism. He has a language disorder. He also has ADHD and anxiety. I zone out. I will read the recommendations later. Doctors can be wrong, I think.
Most of my anger is directed towards myself. Of course it is. I wasn’t able to avoid this with perfectionism, so it must be a failure on my part. I had a lot of professional and personal stress during my pregnancy. That’s it. I have a thyroid condition. That’s it. We live in an urban area with too many toxins in the air. That’s it.
Then I see a glimpse of acceptance when I acknowledge for a moment that this is happening to our boy and I blame myself for not acting sooner. How did I not see it before the teachers? Wait, I did see it. Why did I not act? Angry at myself, again.
Finally, I read all of the recommendations. Many we are already doing but more can always be done. Maybe if we blitz him with all the therapies, the autism will go away? Maybe by the time he’s in third grade, you won’t even be able to tell he has autism? I’m really good at coming up with a plan. Maybe I can control some of this? Maybe not. Better question: Why am I trying to control this?
Then come really hard days. Aggressive behavior emerges. He hits and screams at the tiniest change. We are walking on egg shells and my emotions have been bruised and so have my arms. I climb into bed, feeling heavy. I do not want to get out. Someone else take over please. My husband and I work out a plan to tag-team, it’s the only way of survival. Therapy helps, and so do authentic friends. I have no more energy for keeping up appearances, so I only surround myself with friends who listen and understand, and with whom I feel safe to be exactly who I am. My career is my refuge. Colleagues don’t throw things or scream at me. I am so sad. This is so hard. I wanted to have another child. But, can I handle it? I’m not sure. Now I’m angry at the universe.
Acceptance crept in like sunlight through the trees. I could see it and think about it, but it didn’t stay. The sunlight reminded me that my son was making progress, although slower than my dream had expected. It's going to be okay, I think, just a different version of okay. I felt hope as I saw gifted teachers and therapists connect with him. I felt pride when I watched him progress in his therapies. I even began to feel excited about what he might become with each new stage of his passionate interests. The light gave me hope. We had another baby. A brother for our boy.
But, that fall, our boy became aggressive at school for the first time. I had lost all control. We were doing everything we could. Teachers were recommending a more restrictive classroom than I had ever considered for him. Yet I knew he needed it. And, I was tired. So we did it. We lowered the stress and he improved.
Then one day, as I was nursing my younger son and staring at the striped pattern in the bed skirt of his crib, a strong wave of emotion washed over me. Like a waterfall of transition had met up with all of the expectations I had dreamed up and was rinsing them away. A clean slate remained of this unknown future that was both terrifying and mysteriously exciting. I could not hang on to what was untrue any longer.
The future was uncertain. I don’t like uncertain. I don’t trust uncertain. I trust plans. But holding on to inauthentic plans that were likely unattainable for my son finally felt worse than the fear of the unknown. I surrendered. My identity shifted. I was no longer the mom I thought I would be. In that moment, I accepted becoming the mom my son needed me to be.
Every day since has been better. I see all of the progress. I focus on all the good. I connect with other parents and we share our stories. I have met people I would have never met. I am proud of milestones I would not have appreciated before. I am a better version of myself than I would have been without mothering my son. He is the light that I needed in my world.
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