A Most Amazing Gift

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Little did I know that when I was contemplating having a second child that I would be blessed with a very challenging, incurable neurological mystery. I didn’t know that there would be so many sleepless nights past the baby stages, that there would be decisions to be made for a nonspeaking child who can give us few clues as to what he is feeling inside. 

Raising a child with severe autism is definitely a frustrating daily dilemma, but at the same time a gift invaluable beyond words. One minute Gregory can be the most loving and adorable, the kindest and kissiest fourteen-year-old, and the next, he can lose control of his body and disappear into a wild rage of frustration and anger, not knowing how to let others around him comprehend the train wreck in his mind—the seizure, the headache, the cramp, or something else that has triggered his rage. 

Gregory is normally a happy, sweet person, with more love bundled up than any other fourteen-year-old I have ever met. He has the desire to be kind and to show affection. This trait, I know, is a special gift in the world of autism. Most autistic children can’t handle touch. Their sensory input is heightened, making it difficult for them to filter the input. When Gregory was a baby, nursing was difficult; and hugging, kissing, or any closeness was hard for him. Keeping clothes on him was next to impossible. It took him several years to develop the ability to maintain eye contact for any length of time. Not knowing the reason for this, I just told him over and over again that he would just have to get used to the affection, because in this family, it wasn’t going away. He eventually did get used to it, and we learned to desensitize him and follow his lead when he needs space to center his body again. 

We were able to find sources of release: swinging, swimming, deep pressure, calm white noise, credits at the end of a show, long, skinny objects, fishy crackers, and short stints of sleep. They provide a moment of rest, a getaway that soothes our souls and brings hope. 

I read books, went to conferences, got involved in groups, and had help come into the home, all the while trying to keep the rest of our lives as “normal” as possible under the constant pressure of a child who screamed in any social setting where his two parents might try to integrate themselves into the party. To compensate, we tried to make our family a learning, growing group, even when we felt so tied to an anchor which wouldn’t let us sail in the direction of our choice. 

As time has gone on, I have realized more and more that the anchor has guided us into an unexpected path of learning, one I would not have charted or found on my own. Yes, it is difficult; but the joy that comes when things go right is so much greater than the average. When I can take Gregory out in a boat and give him a wonderful, peaceful afternoon, it is more than a stellar day; it is a gift, a present, an added bonus. When I get brave and try something new—like taking him to a concert at a huge arena and dis covering that he enjoys sitting in a stadium full of people, taking in good music and lights with the rest of us as a family—it is better than simply a “day out” with the family. It is a triumph, a red-letter day, an amazing finish. 

I love doing races, triathlons, marathons, and hikes. I love crossing the finish line. I have enjoyed accomplishing some of them with my family; but when I ordered a tandem bike to give Gregory a chance to ride with me, not knowing whether it would work, and he started taking me by the hand and tugging me toward our tandem bicycle, that was better than a normal ride around the neighborhood. It was more like climbing Mount Everest because of the effort and risk involved. 

Somehow, relief and restitution seem to follow every crisis. It is like traveling without water in a hot, dusty country for an entire day and then, when you need it the most, finding water. Sometimes my courage falls to the bottom of a barrel while I watch my son writhe in pain or behave like an animal because he can’t express his discomfort or intense feelings. When he acts out in such a way, I know he doesn’t have full control of himself and will regret his behavior later. I grieve. I feel lost and hopeless. But over and over, when this happens, a ray of light clarifies my darkness. Someone throws me a lifeline. 

Here is something that happened just the other day. Gregory loves the water. He loves to swim, to play in it, and to be in the boat with our family; but at a swimming pool the other day, there was a disturbance in Gregory’s brain that I have no explanation for. Gregory did his usual thing; he started circling around the pool, getting his bearings and transitioning to the new surroundings. He usually gets in slowly after doing about three laps of a pool. 

On this day, he walked around the pool a few times, then suddenly crumpled into a ball on the ground, and started hitting the wall and the cement floor. I quickly went to his side but got too close. He was obviously having some sort of seizure and couldn’t control his body. He pulled my hair until a big patch came out, then ripped a sweater right off my back. I knew he needed to calm down before we tried to move him. Still, I didn’t anticipate the shocking severity of this attack, and neither did he. 

Later that day, he was kind and loving and said he was sorry in his own way. The next day he was very calm all day and was very loving. Accompanied by our older son, I took Gregory to have his blood drawn to find out what was going on with him. He sat there quietly, trusting in his big brother and his mom. The Lord blessed us that day. A doctor called me from an airplane on his day off and ordered the blood work done. The light was shining for me again, and it felt so much better after I had been banished to a cave. My happiness was intensified by my prior pain. 

Nonetheless, the results of the blood test were ambiguous. We had persuaded the doctor to order it because we hoped they would give us an indication of something amiss with Gregory that could be remedied with medication or diet. The results turned out to be both good news and bad news—good news because they indicated that physically Gregory was in perfect health, bad news because they gave us no new leads as to what might be making him so restless and easily angered. Sometimes it seems that our search for answers leads only to a whole new list of questions. 

It is almost as if Gregory disappears for a time. Older autistic children say that they “black out” and don’t remember what happens when a seizure hits. Their head hurts, and they can’t control themselves. To make these distressing situations worse, severely autistic individuals don’t have the ability to communicate what they experience, so it makes the frustration level skyrocket. It is challenging for everyone, but we have to keep trying. That is what life demands of us, and what we demand of ourselves as parents. The good outweighs the bad, and the love overrides the pain. 

I have four children, but I have only one child who is perfect. Gregory. From the outside, he looks so broken, but inside he is as pure as new snow. He is one who I know is spiritually ready. It strengthens me to know that he is here to teach me and the rest of his family and the rest of the world a new perspective, asking us to stop, take note, and do something for the multitude of God’s children, who, like him, suffer. How else could we learn the lesson of love? How else could we learn to enlarge our moral selves rather than pursue wealth and fame? Gregory and those like him are the essence of a difficulty transformed into a blessing for humanity. 

To My Child With Broken Wings 

You wait while others learn the lessons of mortality. 
We who are your stewards are only apprentices. 
You have a right to speak, to understand, 
To share labor with comrades, to worship and be grateful,
And most of all to love. 
We want to give these things to you 
But we are not perfect, merely learning. 
I will keep trying. The Lord will make up the difference.
I love you, son. Thank you for trusting me. Mom.