Romper

I Adopted A Child With Special Needs & It Changed My Life In Ways I Never Imagined

Courtesy of Shannon Evans

“That’s cool that you adopted; I could never do it. I mean, you just don’t know what you’re gonna get!" The mom at the city play space lowered her voice to say the last sentence while I stood next to her, mouth agape. It’s not that I wasn’t aware that such sentiment existed; of course I was. I just wasn’t accustomed to total strangers blurting out comments on my decision to adopt a child mere moments after our introduction.

My mind reeled back six years earlier, to the memory of sitting on a flat, green futon with my husband, a mountain of paperwork in our laps. We agreed we both wanted to start our family through adoption, knowing that the need for loving parents for orphans was so great around the world. Although the decision to adopt had come fairly naturally to us, having to mark on a piece of paper the needs we would and would not consider was an emotionally grueling process. Who wants to turn down a child who will need heart surgery? But who can afford to pay for heart surgery? That evening we finally agreed on two stipulations: no older children, and no children with special needs. Those might be things to take on in the future, we reasoned, but as a young couple with no parenting experience and very little expendable income we didn't feel confident accepting more challenges than we were equipped to handle.

But the day we walked into that little Ugandan orphanage and held our son for the first time was the most surreal day of my life. He was almost 10 months old and he was beautiful: big brown eyes with eyelashes that curled practically back to his eyelids, plump little lips, no teeth, and a tuft of coarse curls in the middle of his head. I had never before held anything so incredibly precious.  

Courtesy of Shannon Evans

We had received his picture via email three months before and had copied and plastered it over every inch of our home. Every single day we waited for news of the scheduling of our guardianship court date (which would give us the green light to buy plane tickets and enter the country), or at the very least, for an update on our son. Our Alyosha. Even before we met him, we loved him. But holding him in our arms was something completely different; it was like a new and an old love both at the same time. We were strangers, but we were family. We were awkward together, but we belonged to each other.

We learned that to parent a child with special needs is to become an advocate, because the professional expert you’re expecting to swoop in and give you all the answers doesn’t exist. You’re the expert, but you have to claw your way to the title.

Although we had specified “no special needs” in our paperwork, we understood that it's rare for institutionalized children to not have some form of developmental delay. Infants our son’s age typically need several months in a healthy family to catch up on developmental milestones due to the lack of maternal care and one-on-one attention that babies need to thrive. My husband and I arrived in Uganda prepared for that. Yet by the time we laid our heads down on our pillows that first night, we knew we were facing a much deeper well.  

Courtesy of Shannon Evans

We asked each other questions, tried to piece together signs that we were seeing with what we knew of his history. The other babies his age and younger can sit up. I’m not sure if he can roll over. One of his eyes wanders. He is so silent; he almost never babbles. Have you noticed he doesn’t laugh? We knew he was malnourished before he came to the orphanage, but do you think he’s getting enough food now? Could he still be malnourished? We talked late into the night, and by the time sleep found us,we'd agreed we could very well be on the road of special-needs parenthood. But we never questioned whether or not we would still adopt him; in our hearts he was already ours. Our love for Alyosha and desire to protect him only grew fiercer. Yet at the same time, an unknown future hung over our heads.

Life for my family may never look the way it does for others, but I’m OK with that because of something I never anticipated: parenting a child with special needs has changed me.

The next five years were a marathon of seeking answers, one where we rarely got to stop and rest, lest the world crumble down over us and our little boy. We learned that to parent a child with special needs is to become an advocate, because the professional expert you’re expecting to swoop in and give you all the answers doesn’t exist. You’re the expert, but you have to claw your way to the title.  

Courtesy of Shannon Evans

We swam in an alphabet soup of possible diagnoses Sensory Processing Disorder (SPD), Autism Spectrum Disorder (ASD), Attention Deficit-hyperactivity Disorder (ADHD), Post Traumatic Stress Disorder (PTSD), Oppositional-Defiant Disorder (ODD), anxiety, rickets, Trust Based Relational Intervention (TBRI), Occupational Therapy (OT), Speech Therapy (ST), Child-Parent Relationship Therapy (CPRT). Some fit, others did not, but we left no stone unturned. Not because we were greedy for a label, but because life was too hard for our child and he deserved better. From the records available from our adoption agency we knew just enough information about our son's history to know he was at risk for an improperly developed brain (due to early trauma), but not enough to give the definitive answers we wished for. I felt deeply attached to him and experienced daily moments of tender connection, but I also daily carried the weight of his emotional volatility and inability to engage in society in a healthy way. I myself eventually began to suffer from panic attacks, anxiety, and hypervigilance. And through extensive research in the world of adoption, I came to learn that my reality had a name: secondary trauma.

I used to correlate the behavior of children to the aptitude of their parents, and was all too quick to mentally shove others into "good" parent and "bad" parent boxes. Now I know better.

As he's grown, we've found our own rhythm and for us, it’s been a mixture of therapeutic parenting, medication, and accumulated experience in studying our kid as a unique individual. We've implemented Trust-Based Relationship Intervention as our primary parenting lens, but we've also learned to read our son's cues and study him to let him tell us what he needs. We now know which social engagements simply aren't possible, when to leave early or scrap our plans, when to stick to our plans for dear life, how to structure our home life in a way that helps him thrive, and what sensory strategies help calm him. But perhaps most importantly of all, we have learned to relax and enjoy him for exactly who he is. Life for my family may never look the way it does for others, but I’m OK with that because of something I never anticipated: parenting a child with special needs has changed me.

I never considered myself to be a judgmental person, but let’s be honest, does anyone? I realized how much I used to correlate the behavior of children to the aptitude of their parents, and was all too quick to mentally shove others into "good" parent and "bad" parent boxes. Now I know better. Before I became a parent I'd roll my eyes over a child who appeared out of control in a public space, assuming their mother was a lazy doormat. Then I became a parent and my child was always the one being out of control in a public space. I knew I was doing the absolute best I could, so I was forced to rethink my own paradigm.

When I'm exhausted at the end of the day and my son is running wild around the house, physically unable to process the words I'm saying to him or respond to any possible consequence I threaten him with, I've been horrified by my own instinct to resort to unreasonable punishment. I'd always believed I'd never be one of "those" people. But am I?

Now I cheer on other women who do things entirely differently than I do, having more perspective that those things matter so much less than I used to believe. I've come to realize that children are unique and complex human beings, and though different parenting approaches are important, they aren't the only factor stirring the pot. I used to think that doing X + Y would always = Z; that children were some sort of math equation to be solved. Now I know that there a million ways to reach the same result: children who know they are loved and who can love others in return.

Courtesy of Shannon Evans

Parenting a child whose brain has been affected by early trauma and malnutrition has meant living under more stress than ever before in my life. As a result, my own emotional outbursts, the depth of my anger, and my lack of self-control have often shocked me. When I'm exhausted at the end of the day and my son is running wild around the house, physically unable to process the words I'm saying to him or respond to any possible consequence I threaten him with, I've been horrified by my own instinct to resort to unreasonable punishment. I'd always believed I'd never be one of "those" people. But am I?

Being Alyosha's mom has also taught me to see the best in other people, to think more about what people are up against and less about what they're doing wrong. He's taught me to embrace the present moment and enjoy both life and people, even when neither are perfect.

I always thought I was a pretty “together” person. Now I realize that it was only because I'd never experienced the same level of hardships others have. In the past I've judged "incompetent" parents, looked at them as something less than human because of mistakes they've made with their children. But now I know most parents are doing the best they can with what they have and know. I know because I've been there. I am there.

But more than anything, I’m thankful to have accidentally become a special-needs parent because it has taught me everything about what it means to be family. We bear one another’s burdens, offer forgiveness and clean slates, advocate for each other, believe the best of each other, and never stop celebrating. I've come to learn that my talk of love is useless if I'm not willing to back it up with action; but that when I'm willing to fight for love I discover new and exciting parts of myself, like tenacity and strength. Being Alyosha's mom has also taught me to see the best in other people, to think more about what people are up against and less about what they're doing wrong. He's taught me to embrace the present moment and enjoy both life and people, even when neither are perfect.

Courtesy of Shannon Evans

What I wish I would have told that mom at play group is that the unknowns of adoption have been its greatest gift to me. I wish I would have told her that I'm glad our family didn't turn out exactly as planned, but that it's richer and more beautiful than I ever could have dreamed. I remember well the days of fearing hardship, of wanting to avoid it at all cost, but life with Alyosha has shown me there is something greater on the other side of that fear — it's love.                               ‌