June 26, 2012 will now be added to the list of dates I carry with me every day. September 15, 1995; November 15, 2001; June 27, 2002; June 2, 2005, May 29, 2007: the dates my funny, loving, smart, and sweet nieces and nephew were born. January 20, 2005: the date Mr B proposed. May 27, 2006: the date I became Mrs B. March 29, 2009: the date my sweet Granny left us to join her husband, siblings, and parents. September 20, 2009: the date I discovered I was pregnant. May 9, 2010: LJB entered this world; June 26, 2012: the date I knew we had autism.
Since LJB’s first birthday when he wasn’t walking and was only making a handful of sounds, was terrified of strangers and strange places, and was incredibly, exhaustingly needy I knew we were up against something. All of our well-meaning friends and family noticed it too, but they dismissed the signs by saying things like, “He’ll catch up.” “So and so’s daughter didn’t walk until she was nearly 2 and she’s fine now.” And my personal favorite “He’s a boy, they’re always a bit slower than girls.” I, too, was able to pacify my concerns with these rationalizations, for a while.
Between 18 and 24 months, we became hermits. LJB’s unpredictable behavior in public places turned Mr B and I into frazzled, nervous people. That coupled with the fact that he didn’t respond to his name or restrictive language (No!, Stop!, etc.) and his tendencies to run off and refusal to hold our hands kept us at home all the time. Planned overnight trips turned into middle of the night drives home with a screaming, inconsolable child in the back seat for hours. Finally, I knew it was time to talk to his pediatrician and try to get some answers.
LJB suffered from chronic ear infections from about 10 months old to 22 months old. He had 7 in the span of 4 and ½ months. His first set of PE tubes came in June of 2011. Those only lasted a few months before they worked their way out of his little ears. The second set came in March of 2012. His pre-tubes hearing test in March of 2012 suggested his hearing was about 15% of normal. His post tubes hearing test came back at 85%. I figured all of this delayed his language and these tantrums were likely a result of him not being able to hear during such a critical time in his development. So our pediatrician referred us to the local early intervention program. We filled out the questionnaires, participated in phone interviews, and an in-person interview. Then we had an Intensive Level Evaluation. The whole time the therapists were with LJB, he seemed more engaged than ever before. He was saying words and identifying objects. He didn’t start one of his famous tantrums. I was convinced they would tell me that I had simply spoiled him too much and he was a typical 2-year old with a language delay.
At the end of the evaluation, LJB was very tired. He melted down while we tried to ready him for a nap. As I put him down, the OT told Mr B that his results were not going to be very good. We should be prepared that he is not going to score with his peers in multiple areas and that he is going to qualify for the early intervention program. She also let him know that she would recommend trying to see a developmental pediatrician. But I thought he had done so well….? I guess I hadn’t realized just how far behind he was. The next several days were a mix of anger, self-pity, sadness, and denial.
We got the completed report on June 20, 2012. I saw it in black at white. His scores were just as she prepared us for. In 3 of 5 areas he was between 1.5 and 2.95 standard deviations below the norm. In the other 2 areas, he was just shy of average. We had a week to digest these findings before we were meeting with the team again to create his plan for treatment and discuss the evaluation results. Mr B had a work meeting that could not be rescheduled on June 26th, so I was flying solo. LJB was napping while I sat at the dining table with our service coordinator and the OT who conducted the test. She said she didn’t have the authority to diagnose him after just spending 4 hours together, but based on her findings and the questionnaires we had answered, our child showed all the markers for an autism spectrum disorder. I wasn’t surprised to hear this, I had known for 6 months what we were facing. I turned into a robot and helped create his plan. Objectively, emotionless, I talked about his weaknesses in each area and made a list of short term goals. When we were creating the list, I met my threshold. I was making a plan to teach my 2 year old how to enjoy playing with his peers, how to enjoy family outings to the zoo or the park, how to make eye contact and interact with his parents at least 50% of the time. I just started crying. Embarrassed, I excused myself from the table and was relieved when Mr B called and he was coming home early. He came inside in about 5 minutes and we finished the plan together. In a few moments everything had changed. Soon after the OT and service coordinator left, LJB woke up from his nap and I realized that I was wrong, truly, nothing had changed.
His sweet, warm little body hugged in my arms gave me comfort. The marks from his blanket on his face and the bit of sleepy drool dried on the side of his mouth was so totally normal. He was still our LJB. He still has my curly hair and Mr B’s bright blue eyes. He is going to grow up to be tall like his Daddy, and wise like his Granddaddy. He is going to be kind like his Gramma. He is my boy and in many ways he is a typical 2 year old. He loves to take a bath and throw a ball (or any other round object he declares is a baaaaaall). There are crayon marks on our walls and I can always find matchbox cars in the couch cushions. I wish he didn’t have this disorder. I wish this wasn’t our battle to fight. But it is ours and he is mine and I wouldn’t trade that for anything!
Leanna
