J's Story

This is J. He turned 2 years old this month. A couple months ago we started to have some concerns about his development. Our biggest concern was his speech/language skills. At 18 months J was using about 60 words pretty regularly, and everything seemed fine. But over the next few months he began to drop language skills. He stopped gesturing, he stopped following commands, and he almost completely stopped talking. It happened gradually and during the time when I was very sick with pregnancy nausea and vomiting, so we didn’t notice at first. But one day we realized that he really didn’t talk much anymore, and then only if he needed something. He was down to using maybe 12-15 words, and on an average day he might only say about 4 words. He also wasn’t using much nonverbal communication, and he seemed almost entirely uninterested in any social interaction. It was like he had withdrawn in to his own little world, and we were watching little pieces of his personality disappear before our eyes. Once we realized this, we were of course very concerned. I took him to the pediatrician, hoping she would tell me that he just had a speech delay, but that otherwise he seemed just fine. I knew what Chris and I were both secretly thinking in the back of our minds, but still we were hoping that the pediatrician would dismiss our fears and reassure us that he was fine. Unfortunately, that’s not what she said. She agreed with our concerns, and she encouraged us to take him to a specialist at Vanderbilt to have him evaluated for the very thing we had been fearing: Autism.

Once she said the word aloud, that tiny fear in the back of my mind became an all-consuming, overpowering terror. How could my child have autism? Surely he doesn’t. I mean, he still smiles and gives me hugs. He’s probably just really smart, and that’s why he studies all of his toys so intensely. And a lot of boys this age are not very verbal. Plus maybe he’s just really introverted and doesn’t like to be around new people. Surely there’s another explanation. But I knew enough to know that something wasn’t right. A 22 month old child should not just lose verbal skills like that. He should not suddenly lose all interest in social interaction. And he definitely shouldn’t spend 20 minutes just staring at the speakers instead of dancing to the music. I knew deep down that we needed to be concerned. So we immediately called to get him set up for an evaluation, and we were told that there was a 6-12 month waiting list. There was no way we were going to wait 6 months, so we started calling everyone we knew, using any connections we had, praying for a miracle. Fortunately, God is still in the business of miracles. As it turns out, the director of the Center for Child Development (the clinic where he would be evaluated), is a colleague of Chris's. Chris knows him, he just didn’t know he was the director of the CCD. He called him up to tell him what was going on, and the clinic called me the next day to schedule J’s appointment – just 2 weeks away. So for those 2 weeks we waited and we prayed. And we prayed and we waited some more. We watched everything J did, I took pages and pages of notes every day, I made lists of what words he could say, what words he used to say, what new words he had learned. We turned off the TV completely, and I spent every minute I could sitting on the floor with him, trying to get him to interact with me. And he began to improve! It was amazing how quickly he began to respond. It’s not that I had been neglecting him before, but he responded so well to my intentional efforts to draw him out and encourage him to use more words. By the time his evaluation appointment rolled around, I had once again convinced myself that he was fine. He was making eye contact (sometimes), responding to his name being called (sometimes), playing appropriately with toys (sometimes), using more sign language, and even picking up a few more words. During the 4 hour evaluation J was happy and playful, very socially engaged. He even sat in the psychologist’s lap and kept playing peek-a-boo and laughing hysterically. Chris and I both thought that he had done great and that the doctor would dismiss our concerns and clearly say that our child does not have autism. Once again, that’s not what happened.



The doctor sat down with us to tell us his conclusions. He said that J’s profile is very complex. He has a lot of strengths – he can use eye contact, he is very socially engaged, he’s affectionate, and he plays well in reciprocal, back and forth games. But he also has many areas of vulnerability – he only occasionally responds to his name being called, his attention can only sometimes be captured and diverted, he struggles to communicate his wants and needs, both verbally and nonverbally. And he does show some repetitive behaviors, limited shared enjoyment of activities, lack of imaginative play, and impaired/inconsistent functional play with toys. Many of those are fancy words for the concerns we already had about him, but hearing the doctor say them aloud made it all seem so much more real and threatening. He said he did not feel confident making a diagnosis at this point, given J’s young age and inconsistent behavior patterns. But his final conclusion was “At the end of the day, I am very concerned about the possibility of an Autism Spectrum Disorder.” As soon as I heard those words, I was crushed. That was not what he was supposed to say. That was not what I had been praying for, and definitely not what I had been hoping for. This was not supposed to happen. Surely my sweet baby boy is just fine!

The doctor was considerate enough to give us a few minutes alone, and as soon as he walked out of the room, the tears started to flow. Chris sat beside me and held my hand while we both tried to let this realization sink in to our hearts and minds: Our child may have autism. This is real. Our entire lives are about to change. He may never live a “normal” life. He may never be able to develop meaningful, intimate relationships. His future opportunities may be severely limited and impeded. He’s going to be that kid sitting in the corner of the classroom, moaning and rocking (because we’ve all seen Rain Man, right?) Our sweet, sweet, beautiful baby boy. And the whole time we sat there crying and digesting this news, J sat in Chris’s lap, smiling and hugging him, pulling on his tie, completely oblivious to our fears. How could this be happening? It all seemed so surreal.

Once the doctor came back in, he was ready to discuss our plan of action. He believes strongly in early intervention, and he assured us that we were really fortunate to catch on to J’s symptoms so quickly. He told us that with J’s young age and uncertain diagnosis, it was entirely possible that with some intensive intervention, he could significantly improve in his vulnerable areas and end up being perfectly functional, or not even end up on the spectrum at all. My hopeful heart latched on to this information right away, and we were determined to do everything we could do to help J. The doctor recommended intensive speech therapy and behavior intervention, then told us that he wanted to re-evaluate J in 3 months to see how he was progressing, hoping that we would have a more clear picture of what was going on at that time. We knew this would be a little tricky, considering that we were having a baby in 3 ½ months, but we also knew we would do everything in our power to get J the help he needs. So I went home, put J down for a nap, laid on my bed and cried for about an hour, then immediately switched to action mode. I contacted every speech therapist on the doctor’s list, researched every developmental preschool in the city, and set up a referral with Tennessee Early Intervention Services (TEIS). By the time Chris was home from work. I had done everything I could possibly do for the day, and once again all I could do was wait.



These last few weeks have become a whirlwind of phone calls, emails, internet research, touring preschools and treatment centers, evaluations, and investigating insurance/TEIS coverage for autism services. Needless to say, I have been completely overwhelmed. And emotionally exhausted. I wasn’t sleeping well, I went days without eating, I cried almost constantly. When I went to my OB check-up and the doctor told me that I hadn’t gained any weight in the past 4 weeks, and that I had only gained about 7 pounds total (at 24 weeks pregnant), I knew I needed to do a better job of taking care of myself, for the sake of this new baby. Thankfully, we have wonderful friends who immediately pitched in to help. They started bringing me dinner so that I could focus on figuring out the logistics of J’s treatment plan and still remember to eat. They’ve been coming over to play, just to help get my mind off things for a while. They’ve called, texted, and emailed frequently to see if I need anything, or to allow me a chance to verbally process the decisions we’re making. Most of all, they’ve just loved and supported me through this very difficult time. And they’ve prayed. They’ve prayed hard. I know they’re really praying, not just saying it because that’s what you’re supposed to say to someone going through a hard time. They’ve told me what they are specifically praying for us, and asked often for more specific things they can pray for. I can’t begin to express how meaningful it is to know that my friends are praying for us, because honestly, I can’t pray for myself yet. Somehow the emotions are still too raw, too fresh. I’m not angry with God, I just can’t seem to bring my words and thoughts in to anything coherent before Him. So in the beginning I prayed constantly throughout the day “Jesus, help me.” That’s all I could do, all the words I could come up with. Within a few days my prayers evolved in to me saying “Just stay close, Jesus. Don’t let me get angry. Don’t let me pull away from you. Just stay close to me.” It wasn’t much, but it was enough. I know He heard me, and that was enough.

It’s a strange feeling, not being able to pray about something so huge. I know that I need to pray about these decisions. We need guidance, we need wisdom. But I can’t pray about it, except to briefly say “God, give us wisdom. Show us what to do.” That’s as far as I can get. My prayers are rarely more than 1 or 2 sentences long, but it’s okay. I just keep asking Him to stay close and help me, to show us what to do, to take care of our little boy. And that’s enough. Plus I know that our precious friends are praying for us when I can’t pray for myself. It’s the beauty of community. And I’m so thankful that God never asked me to be strong enough to carry this alone. Instead he surrounded us with people who love us and who are helping us through, so that we don’t have to do it alone. He may have given me more than I can handle on my own, but it’s not more than HE can handle. I know that as long as we allow Him to help us, He will equip us with everything we need to get through this. He’s not asking me to be strong, He’s not asking me to handle this, He’s not asking me to have perfect faith and keep it all together. He doesn’t expect me to have everything under control. He just wants me to keep praying “Help me, Jesus.” That’s enough. He’ll take care of the rest, somehow.