I've been blessed to meet and develop friendships with multiple special needs families and several online advocates. We’ve carried each other’s burdens, celebrated one another’s successes, and given tearful apologies when we’ve been envious about those successes. (It’s easy to find yourself longing for your child to make the same progress as your friends’ children.) Throughout these friendships, we’ve shared our stories about receiving a diagnosis. Some friends were relieved to have a diagnosis and no longer be gaslit (“this is normal, he’ll grow out of it, you need to work on behavior management”.) Some are frustrated by the amount of time it took to get a diagnosis. Without a diagnosis, an autistic individual cannot receive the support he desperately needs. Sometimes, a diagnosis is like a puzzle piece finally clicking into place, giving a fuller picture as to why a child might be experiencing the world differently. One commonality is that we’ve all found ourselves grieving the loss of the lives we envisioned for our children. I walked into Henry’s neuropsychological evaluation fully expecting to be handed an autism diagnosis. I thought this mindset provided me with a layer of emotional Kevlar. Nope.
Henry was 5 years old. His genetic variant had been identified, we were gaining ground on seizure control, and he was coming back to us in pieces. This extra bit of stability allowed my mindset to shift from keeping him alive to giving him the best quality of life. He was displaying autistic traits and characteristics, so we requested a neuropsychological evaluation to determine if he was autistic. I will always believe that the better we know and understand Henry, the better we are able to care for him. That includes identifying a diagnosis and responding to it. We went in for the evaluation, and it was miserable. We couldn’t find anything that soothed Henry, so he squealed, cried, and tried to leave the room the entire time. I remember my head pounding from his screaming and sweat dripping down my back as I redirected him from the exit to the task we were working on repeatedly. Finally, the testing was over, and we took a break until the follow-up meeting when we would receive his results.
During the break, Steve and I talked about the tasks that we knew our ornery little boy could do at home but refused to do for the psychiatrist. For example, we knew he could hold/turn the pages of a board book, it just had to be “Brown Bear” or “It’s Pumpkin Day Mouse”. But the truth is, if Henry had been having a great day and given his best effort, the activities still would have been too advanced for him. Almost every task was an activity that could be accomplished by a toddler but was impossible for Henry…stacking one block on top of another, pointing at the largest item, using everyday items like a comb. Knowing that Henry was an undiagnosed autistic was entirely different than seeing “autism” in a clinical setting. Watching our five-year-old struggle with activity after activity that other children consider play highlighted how difficult this life was going to be for Henry.
In our follow-up meeting, no surprise, the psychiatrist explained that Henry was autistic. What did surprise me, is how deeply her words affected me. She was professional and used appropriate terms, but they all felt like they came with a complimentary kick in the stomach. Henry is “nonverbal” *BAM* “Level 3” *POW* “Severely Delayed” *BOOM* “Profoundly Delayed” *KAPOW*. My response to Henry’s SCN1B diagnosis was a grieved relief. We had finally learned the cause of his seizure activity and had a plan to fight it. The autism diagnosis, while expected, left me thinking about the things Henry was going to miss out on. My mind reeled with “nevers” on our four-hour drive home from his hospital. He’ll never go on a date or to a dance. He’ll never play sports, never drive, never get married, never…
What I wish I could go back and tell myself is that he would experience all the joys of this life. It just looks a little different. Different doesn’t mean less fulfilling or an absence of joy.
I wanted Henry to get married because I love the relationship I have with Steve. Henry won’t get married, but he gets to have a relationship with Steve too, the most incredible man I know.
I wanted Henry to go on dates and attend dances because everyone should have those experiences. We discovered an annual sensory friendly dance, and it turns out Henry’s not embarrassed to take his “mom-mom” as his date!
I wished for Henry to know the excitement of getting behind the wheel of a car. He finds that excitement by helping his dad drive around the neighborhood.
I hoped Henry would feel the pride of participating in sports. Since his diagnoses, he’s been in an adaptive triathlon and 2 special needs races. I still feel overwhelmingly loved thinking about the fans who traveled from other states to support him and cheer him on with “Go Henry” signs and Tees.
I wanted to teach Henry the value of serving others. Today, he can hold a door for friends, help pack groceries, and help stuff a calming kit to donate to a special friend.
Henry spent his entire childhood fighting for his life. It’ll be a joy for me to spend the rest of my life trying to give him every good experience this world has to offer.
“Making a home in an exhausted body and an exhausted mind is an act of deep Christian rebellion. It is a declaration that God’s presence is not restricted to perfect, healthy, high-functioning spaces. The Holy Spirit dwells in you right now-in this body, on this difficult day,....and the limitations that are not going to be resolved by next week. God’s not in the waiting room of your life waiting for you to be fixed before He moves in. He is already here.”
~James Wade “No Compromise”