Charlie, Fitzwilliam and the Puzzle

Look at these two boys. Are they not the cutest, most beautiful little boys on earth? It sure seems that way to me. Looking at them in this picture, don’t they just look healthy and normal and wonderful?

Well, they are wonderful, but they’re not healthy and not normal (a word I detest, by the way). Charlie was diagnosed with an autism spectrum disorder almost three years ago. I began to suspect Charlie was different when he was around 15 months old, became very concerned by the time he was 18 months old and knew before we ever stepped foot in the Kaiser Autism Spectrum Disorder Clinic that he was autistic. When we received his diagnosis, my only surprise was that it was PDD-NOS rather than classic autism. Of course, there was some denial, but that was mostly external. Inside, I knew.


Charlie started receiving speech and occupational therapy and on his third birthday began attending a pre-school class with other autistic children, where he continues to get one-on-one therapy. There has been some progress, but it’s been very slow. And these days, he seems to be using verbal communication less, rather than more. I am the first to admit that I have done little to nothing to help Charlie progress. I have felt extremely overwhelmed since the day of his diagnosis, have done almost no reading or research on autism or treatment and have happily turned over his education to his teachers at school. I can’t see immediate answers to the problems we have with Charlie and so they go unaddressed. Instead, I have hoped that showing him affection, feeding him, bathing him, changing his diaper, dancing with him, tickling him, singing to him, comforting him when he’s sad and trying to understand him would be enough. I have told myself it’s all I have to give. But I don’t think that’s true, just convenient.

Fitz for a long time seemed normal to me. His language delays have been obvious for a long time, but for a very long time, he seemed just like other kids his age. When I began to express my concern about his lack of speech, everyone would tell me stories about other kids they knew who hadn’t talked until they were older and were just fine. I didn’t really notice that Fitz didn’t seem to be getting older in other ways, besides the fact that he wasn’t talking, that he was kinda frozen in time as a young toddler. It was only as I was completing the ASQ (Ages and Stages Questionnaire) for him that it became obvious Fitz wasn’t just experiencing speech delays. Then the call came from Kaiser for Fitz to meet with a developmental pediatrician. I thought she would confirm that Fitz had delays, but that all signs pointed to him being a normal child who had just fallen behind, that with some personal attention, maybe pre-school with normally developed peers, he would catch up and all would be well. I wasn’t expecting for the word “autism” to cross her lips.

But it did.

I couldn’t focus on anything she was saying after she suggested he might have an ASD and said she was referring him to Kaiser’s clinic. I tried to listen, but mostly I concentrated on not crying. Because I was not going to cry in front of her. And I concentrated on not crying as we walked out into the hallway. And I concentrated on not crying as I waited with Fitz for Josh to get done using the restroom, not daring to look at the little boy whose hand I held fastly to mine. And I concentrated on not crying as we rode down the crowded elevator. But as we walked out the front doors of the Kaiser building, the tears began to lightly stream down my face, all the way to our van, where I buckled myself in and let myself feel.

And the waves came crashing in.

How did this go unnoticed for so long? What is wrong with me? How can this be happening again? Why are all my sons “defective”? (Alek almost certainly has ADHD and has had behavioral issues at home, church and school.) It’s a lie when people say God doesn’t give us more than we can handle, because I can’t handle this. I can’t mother these children. I’m rarely even home. I can’t even keep my house clean or cook dinner on a regular basis. How can I raise two autistic sons? Someone else should be their mother. My kids need someone else. All of them. I’m a failure. I don’t want to do this. I’m sorry, Josh, for giving you broken sons. It’s all my fault; I’m the one with the bad genes. You won’t have anyone to carry on your name. I’m sorry you got stuck with me.

It all went roiling around in my brain and spewed forth from my mouth after we left the doctor’s office. Josh quietly listened, with no expression on his face. He seemed calm. I thought perhaps he was at peace. After I ran out of tears and words, I asked him what he was thinking, hoping he would say something comforting.

But he didn’t. He was angry. He felt robbed, cheated. There was a lot he said. But it’s not my place to repeat it.

We comforted ourselves with Chik-Fil-A, which is never a bad choice. And we drove back to Josh’s parents’ house to pick up Katie and Jane (Charlie and Alek were both still at school) and deliver our news. I called my mom. She made me feel better with her love and kindness.

Josh and I decided we needed to go out, to get away. We got a sitter that evening and went to dinner and a movie. We didn’t talk about autism. We just had fun. But on the drive home, it just came up and suddenly we were discussing it.

The anger was gone, but the sadness remained. But there was something else, too. The peace of knowing that Charlie and Fitz are our boys, that we love them and that they make us happy. Earlier in the day, when the news was still fresh, I thought about how after Katie was born, so many people commented that having one boy and one girl was perfect, indicating that was where our family should end. It never even entered my mind to consider it; I knew I wanted more children and that more children would come. And come they did, three more in the next 5 years. With the news that I might have two autistic sons, I thought maybe I was wrong to have continued on. Maybe I should have stopped after Katie. Life would have been much simpler.

But immediately, I knew this thought was wrong. I couldn’t imagine my life without Charlie, Fitz and Jane. I knew our family would not be complete without them, that I would not be complete without them. I told Josh about this on the way home that night, after our date, and he expressed that he felt the same way.

He told me something else that I have been treasuring in my heart since, something that made me more in love with him and more sure than ever that he is the right man for me. Josh said that at one point it occurred to him that he could give Charlie a priesthood blessing, a healing blessing, and that his autism would be taken from him. I told him that I didn’t think it worked that way, but he said why not? Jesus and the apostles healed people of blindness, leprosy, the palsy, even brought people back from the dead. He said he had felt at one point that he could lay his hands on Charlie’s head and make him whole. But then he thought if he did that, he wouldn’t be doing it for Charlie’s sake, but for his own. He told me that he feels that Charlie’s ticket is punched, that his place in the next life is secure. “Why would I take that away from him?” he said.

I found an autism website today that I hadn’t read before. And as I read about all the theories of why and all the gaps in their knowledge and all the various types of autism and the varying signs and how every person with autism is different, I began to feel overwhelmed again. So much information but so few answers. This is a common symbol for autism:

And it’s an appropriate one. This disorder, this mental and medical condition, is like a 1000 piece puzzle, with only a few pieces yet in place. And I’m lousy at puzzles.

But I have this assurance: “And if men come unto me I will show unto them their weakness. I give unto men weakness that they may be humble; and my grace is sufficient for all men that humble themselves before me; for if they humble themselves before me, and have faith in me, then will I make weak things become strong unto them.” (Ether 12:27)

What Fitz and Charlie need most are parents who humble themselves before God and can therefore be made strong by His power instead of relying on their own. I know this puzzle will likely never be completed in my lifetime, but one day when I stand before my maker that the pieces will fit, and I will see the beautiful grand design that is now obscured from my eyes. That I may keep that faith in my heart and allow it to motivate me to greater diligence, goodness and love is my prayer.