April By Rebecca Kahlsdorf

It is autism awareness month. I love/hate April for that reason. Two years ago, I was still struggling with the thought that my two year old son might have autism. I didn’t want to believe it, but the strong possibility glared me in the face. Since my mother brought it up months before, I had swung back and forth. When I had him tested through the early childhood intervention program, I asked the evaluator if she thought he might be autistic. She said she wasn’t an expert, but he didn’t seem like he was to her. I latched on to that for a while, and I was truly angry at my mother for scaring me like that (regardless of the fact that he did qualify for therapy owing to his significant speech and fine motor delays). The night my mom suggested the idea, my daughter was only 3 months old. Chadd had been at a seminar in Las Vegas and would be flying home that night, so she had come over to stay with the kids while I picked him up. I had just finished nursing Audrey to sleep and stood at the bottom of the stairs, holding her in my arms, when my mother started in carefully, clearly uncomfortable and concerned. “Does Charlie answer when you call him from across a room?” “Does he play with toy cars by pretend driving them across the floor, or does he flip them over and spin their wheels?” “Does he make very much eye contact?” “What?” I remember asking, “Do you think he’s autistic or something?” To which she replied, “You said it. Not me.” And then came the hollowing out. I was holding my little girl in my arms, just five minutes ago thinking I had a normal life with a normal family and a pleasantly normal future... and then my heart froze and I could barely feel my extremities. Probably because I knew somewhere that it was real. I held it together, but just barely, when I collected Chadd from the airport. I waited until we were laying in bed together and it was dark to say anything. Chadd held me. If it were true, he said, then Charlie would just be the best autistic boy in the world.

The support for the autism theory did not last. Chadd really didn’t want to believe it. So, he kept pointing out ways that Charlie was doing “normal” kid things. But, as time wore on and we waited on that accursed list for an official diagnosis, I began to slowly accept the doom of autism as something happening to us. So, it became a contentious point between us - at least inside me, anyway. I remember a fight we finally had about it. “Be careful what labels you put on him - they will follow him for the rest of his life!... You just want there to be something wrong with him!” he said as the argument heated. “Are you serious?” (I am a terrible fighter, I don’t think offensively on my feet, but this one meant something to me, so I kept duking it out) “Of COURSE I don’t want there to be something wrong with our son!” I said - having following him up the stairs and into the shower as he tried to evade me with the last word, “All I’m trying to say is that if there IS something wrong with him, I want him to have HELP!” That was the climate in which we entered our first Autism Awareness April.

Autism Speaks had a commercial on that year with a little boy throwing a football with his dad in the back yard. Printed over the sweet footage were lines that went something like this: “Chances of your child being a player on a professional football team: 1 in x-million. The chances of your child having autism: 1 in 150.” Chadd played football in college. All my hairs stood up... and I tried, without looking right at him, to see his reaction. It was unreadable.

Johanna and Ashley, Charlie’s early intervention therapists, were wonderful. They came over once a week and played with him and showed me how to talk to him, how to give an effective time out, what toys to buy, how to engage him... In short, how to give him what he needed. I will always be grateful to them for their gentle guidance. I remember asking Johanna if she thought he had it, and she answered kindly that autism was a medical diagnosis only a doctor could give... But, that she would not rule it out as a possibility. In retrospect, I asked some really tough questions for a person in her capacity to navigate successfully. She did it beautifully - with support and hopefulness - not hope that he was “normal,” but hope that everything would be all right. I needed that hope more than anything.

Sitting on that waiting list was torture for me. I remember feeling the same when my father died, only it dragged on and on. I lived with that gutted feeling. It was the last thing on my mind as I fell asleep every night. I woke at least once to nurse Audrey, and I thought about it half-asleep. And then in the morning, even before I opened my eyes, it was there waiting for me. When my father died, it was the end of someone I loved. For me, I felt I was facing the end of the life I had expected, the end of the son I thought I knew - as the one I had felt taken from me and replaced by a stranger. Possibly. The desperate and silly teensy bit of hope still remained, although I tried to smother it. And I was alone, mostly. Chadd still hadn’t come around.

A month or two before Charlie’s diagnostic clinic, Chadd went to his sister’s wedding in California. His nephew, who is only days younger than Charlie, was there. I think that was a turning point for him. He suddenly had a comparison, and a stark one at that. One Sunday, we were driving to church and Chadd said he wanted Charlie to have a Priesthood blessing. He would ask our home teacher, Brother Gillins, to help him after church. He believed now that something was amiss. Charlie sat in my lap and wriggled under their anointing hands. Chadd asked brother Gillins to offer the blessing. I remember blessings of health... but, I don’t remember much of what he said. Afterwards, brother Gillins shared with us that he didn’t have the impression that Charlie needed healing... that the feeling he received was that Charlie wasn’t “sick”. I understood what he meant, and I know Chadd did too. Yes, he was not typical. But, Charlie was not broken - he was as God intended him to be. After our home teacher left, Chadd and I sat and had the most emotional conversation of our marriage. I reminded him of a talk we had long ago, while we were still dating. I had forgotten it completely, until my mom reminded me. I told her about it, because I thought it was interesting. We had been driving somewhere together and I said, “Sometimes, I get the feeling that I’ll have a child with special needs.” He looked over at me quizzically. “That’s funny... I’ve had that feeling, too.” Sitting on the couch that Sunday, I asked if he remembered that conversation. Through weeping I had not seen before or since, he replied that he did. I comforted him with whatever strength I had left in my soul. We cried together for our broken hopes and our fresh fears. And, from that moment on, I was no longer alone.

The clinic was not fun. I had talked to the social worker on the phone about how positive I was trying to be - how I just wanted to know so we could give him all the intervention he needed, armed with a medical diagnosis. I wanted our life to officially start, whatever the outcome of the evaluation. So, she looked like she expected me to be unsurprised with their answer to our life-changing question. I stared back blankly and felt any preparation I thought I had mustered over the last seven months disintegrate as terror flooded through me like a tidal wave.

I delved into research, but it only depressed me. Autism is such a spectrum and so individual, the possible affectations are many, and they are heartbreaking to learn as possibilities for your child. He may never speak. He may be eight before he’s out of diapers. He may be aggressive. He may inflict pain to himself. He may never live independently. He may never have meaningful relationships outside of the family. And on and on. I had my first migraine headache the first week after his diagnosis. I had reached a level of anxiety I had never experienced before. One look at Charlie, and I stopped breathing. I had to say out loud over and over, “He’s the same little boy he was before. You’ve been doing this all along. He’s the same little boy as always. This doesn’t change anything.” (Phrases blessed Johanna had comforted me with). I was surprised that I felt angry about it, too. I didn’t want my life. I wanted the one I had planned for myself. But, it isn’t my plan that’s important... and I understand that now.

Therapies were aplenty and sometimes conflicted each other. The cost of private therapy began at around $100 per hour. Insurance labels autism as a “learning disability,” which makes no sense, seeing as it can only be diagnosed by a panel of medical professionals. But, it’s a coverage cop-out. ABA methodology suggest 20-40 hours of therapy per week. Our insurance offered 90% coverage up to $2000 for any therapy per YEAR (after the $500 deductible). You do the math and figure out how quickly that runs out. I made lots of phone calls, and I kept a special notebook for everything I researched.

I figured out how to stretch our therapy money, and when to plan it. He received private speech therapy as well as occupational therapy for several months. I started taking him to horse riding therapy, although gross motor skills are actually one of his strengths. I stumbled upon autism assistance dogs and felt excited at the prospect, and then deflated when I learned the average cost was around $12,000. (Later, we were blessed to find the Joys of Living Assistance Dogs, and to have had the amazing experience of a community rallying to fund raise on Charlie’s behalf. Bonnie the wonder dog joined our family earlier this year.) Charlie started at the Early Childhood Center in an autism-specific classroom just after he turned three. I started attending a pro-active autism support group. I was a woman on a mission. And I crashed. I continue to cycle through manic super-charged-therapy-mom, crash - overwhelmed and depressed, and then go through a denial phase when I pretend we are a normal family. The grieving took a long time. The trouble with grieving is that you can’t do it all at once and have it over with. It creeps up on you when you aren’t expecting it, and reminds you of something else you’ve lost... some new element to mourn that you hadn’t thought of before. And guilt ensues, sweeping away any productive energy. My cycles are getting further from the bottom now. They are working their way up. I hope someday to master the balance that is essential in my situation. I’m working on it.

I like the fact the Autism Awareness month is in April. It is the month we celebrate the resurrection of the Savior. It is the season through which life begins to come out of the sad remains of winter’s depression, and the sun comes out again. There are new Autism Speaks commercials on the television. I wonder how many families there are who are watching, oblivious that their gorgeous little baby is fated to be different from his peers... a puzzle attached to a trillion of his parents’ heartstrings. Charlie is the source of my most intense joy and pain. I want for him what I want for Audrey: happiness, fulfillment, and the realization of his potential. If I didn’t believe in a life beyond this one, I don’t think I would have made it through that first year. Thankfully, I believe deeply in a perfect Creator who makes no mistakes. So, here we are. It is April again, and here we are... for many more April’s to come, carrying with them uncharted territory. Unknown, atypical, uncharted... but, full of hope.