For two years, I would sit at his basketball games and silently sob.
Not because Little Man (our youngest son) wasn’t as good as the other kids were. (He wasn’t at the time.)
Not because I was embarrassed to be the only parent with a kid on that team not keeping up.
I would weep because he was cognitively stuck. Like a computer sluggishly trying to process a hard drive full of information, he would stare. The game went on around him, and he lagged 30 seconds behind. He would run down the court just as the team was turning around to head the other way down the court. Then he would remember, briefly, to “guard his man” before getting lost in the loudness of the gymnasium, the overstimulation of the ball bouncing around him, the fast pace of the kids racing past, and the pure anxiety of being in slow-motion when everyone around you is on pace. He would peel his hangnails and wear a perpetually worried look on his face.
My heart would ache and shatter not because he was different but because it was an indication that once again, he was suspended in that time and place called dysregulation, for whatever the reason, and we would need months to partly climb back out again.
I could take the massive amounts of energy: the Tigger Bounce. I somehow managed the incessant chatting. For years I dealt with the fast-paced mind. But when he started shutting down from anxiety, depression, overwhelm, overstimulation, and self-esteem in first grade, I found the combo meals that came with Attention Deficit Hyperactivity Disorder (ADHD) to be especially cruel and merciless. I raged against our world being thrust knee-deep into obsessive-compulsive disorder (OCD) behaviors and depression. Eight year olds are not supposed to feel anything other than an occasional hurt feeling or a bruised knee now and again. They are not supposed to hate themselves, crawl into fetal position and rock, tormented by who they are.
We felt like our son was trapped inside a deep cage, and no matter how much we reached our arms in between the bars, he shrank back and away, fearful to come out. What’s more, none of us could find that key!
We now know that my son not only has ADHD, but, in his case, it comes with anxiety and sensory processing deficiencies as its sidekicks. There were also some fine and gross motor weaknesses, visual motor and planning struggles, and related executive functioning issues. When anxiety spiraled, depression and OCD behaviors followed. And the best way I can describe his “lost in space” funks was stuck. He would often become stuck from November through January, starting to come out of that place by the end of February. Stuck would be perseveration on germs and difficulty in starting tasks. Even putting on socks and shoes became a game of “if the socks don’t match rims exactly, I can’t wear them.” Getting ready for school in the morning could become an hour and a half—or more—event because rituals were so important, thinking was so inflexible and rigid, and the slightest deviations from exact routine would unravel him. Arguments come from rigid thinking, and rushing a child who is processing slowly at the moment never got us anywhere but in tears together. Some days I felt like I had already lost my mind by 8 AM, and then there were my two older children whose nerves were ragged from the mere exhaustion of listening to my coaching, coercing, reasoning, strategizing, and sometimes just plain begging. I would regularly fall into a heap and weep.
I knew that deep inside my boy was smart, kind-hearted, empathetic (which contributed to anxiety, actually), and funny. Suddenly jokes about puppy farts and light-hearted teasing disappeared and were replaced with obsessing over germs, time, routine, etc.
As parents, we went from fairly straightforward parenting, mild health concerns, and somewhat predictable developmental stages in our oldest two children to two years of nonstop searching for answers: pediatrician, child therapist, child psychiatrist, occupational therapist, and psychologist with plenty of regular surveys, questionnaires, inside-the-school evaluations and neuropsychological evaluation outside the school for our youngest child. We hopped from specialist to specialist, therapy to therapy, IEP meeting to regular team meetings, and between us we made sacrifices in work time missed, career advancement, hours of driving sometimes an hour away weekly for professional help, and even the initial emotional tolls of family counseling. My publishing business launch halted right in its tracks, and my daily, sometimes hourly life, became full-time advocacy for my struggling child. My dreams were on hold, the little involvement I had in social circles dramatically halted; we reduced activities, stayed home so he wasn’t overscheduled beyond necessary appointments, and made big changes even in the activity level of our older two children (middle and high school). My husband travelled less for work.
At the time, I knew it wasn’t forever, but I also knew I only had so much energy, and it was often already 50 percent spent after morning battles to get out the door. We discovered as a family we had to:
Check in with each other
Talk honestly and frankly about how these things affect us
Find times when the child in crisis or need didn’t suck up every ounce of parent energy and spend it on the neurotypical children
Make time for fun
Engage in dog therapy (we have two cuddly Shih Tzus who have brought us much comic relief and comfort)
Abide in Christ, and He will grow the fruit in our lives
Laugh our heads off; seriously, potty humor became my friend!
Putting my personal dreams on hold, circling inward to take care of the birds in our own nest, and reserving our resources were just for a season, but they were necessary—vital, really—to us adjusting to our new normal. We had a few really difficult family therapy sessions when I just about slammed out the door because so much weight was on me—and that ugly beast called Mother Guilt, which constantly lied to me and told me that I was a failure and not doing enough.
We are a family of Christian faith, and we often asked for prayer, prayed before every appointment and IEP meeting, and drew strength through meeting with a mental health support group for parents in our town as well as a leading a focus (support) group for special needs parents in our church. We learned how healing it was to leverage our growing network and knowledge base to help others. Even our high school son took on the role of a “buddy” in children’s ministry to offer extra help and support to the special needs children in our church. It felt good to take what we were learning and apply it beyond our own home—once we got a better handle on our own challenges and struggles.
Yesterday, I sat at one of the first basketball games of the season amazed at how far we’ve come. I was relieved to see my son able to handle the sensory overloads in the gymnasium better, follow the ball and actively participate in defense and offense, and in general look less stressed during the game. He was having fun!
My son is not healed. We still have our bad days and seasons. I still end up in a ball on the floor crying some days (after he has left for school). The difference is that in two years’ time, we have learned ways to help him self-regulate in our home, he has benefitted from years of therapy, and he is developmentally making some strides. I no longer resent the interruption and the pain. In many ways, we thank it because it made us learn a bit more about being still and loving from places deep within ourselves that used to be covered in selfishness and complacency.
Our hearts have grown into a passion for special needs ministry, our lives forever changed.
We feel God has lifted us to a new definition of unconditional love, one that brings us closer to a love like Jesus’s, one that opened our hearts deeper, wider—and we are less afraid.
Little Man has completely changed our lives and our priorities. The adjustments our family has made have been so healthy. I was admittedly resistant at the time, but I would never go back to the way we were before. I leave you with what my heart wants to say to every special needs parent with this letter from me and this word from Jesus:
John 15:1-9, ESV
“I am the true vine, and my Father is the vinedresser.
Every branch in me that does not bear fruit he takes away, and every branch that does bear fruit he prunes, that it may bear more fruit.
Already you are clean because of the word that I have spoken to you.
Abide in me, and I in you. As the branch cannot bear fruit by itself, unless it abides in the vine, neither can you, unless you abide in me.
I am the vine; you are the branches. Whoever abides in me and I in him, he it is that bears much fruit, for apart from me you can do nothing.
If anyone does not abide in me he is thrown away like a branch and withers; and the branches are gathered, thrown into the fire, and burned.
If you abide in me, and my words abide in you, ask whatever you wish, and it will be done for you.
By this my Father is glorified, that you bear much fruit and so prove to be my disciples.
As the Father has loved me, so have I loved you. Abide in my love.
Blessings on your journey!
Bonnie Lyn Smith
Author Bonnie Lyn Smith writes about parenting, marriage, mental health advocacy, special education, faith in the valleys of life, the healing cloak of Jesus, drawing healthy boundaries, relational healing, renewing our minds, walking with a Holy God, and much ado about grace. Join the conversation at Espressos of Faith.