I was looking through some old emails for a link and came across a message I had sent to my family and friends about Ronan. The note was from a time when I’d just started to ask that question no parent wants to raise—could something be wrong with my child? It was 2005 and Ronan didn’t seem to be that far behind his milestones. I could tell something was a little bit different though, and a gap had started to widen. After almost a year in an early intervention program, it was now time for an annual review that would accompany his first transition of services. He was about to graduate into the preschool program.
The annual review included answering many questions about Ronan’s development, his abilities and of course a set of skills he lacked. In preparation for this transition I spoke to several specialists who had access to Ronan’s records. When it came time to conduct the parent interview with each specialist--a pediatrician, a social worker and a psychologist--I started to get a little nervous. I’d never spoken so formally about Ronan before, but I knew it was a necessary step in the evaluation process. Each interview was an hour or so in length so I prepared talking points to share. I didn’t tire talking about what I thought was going on with Ronan, what I hoped he’d be able to receive as far as his education went and how I was going to remain an integral participant in all of the decisions being made for Ronan.
I don’t remember too much about the psychologist or the social worker’s interviews. I was most nervous for those two since I hadn’t spoken to either type of professional before personally. We’d had a case worker for Ronan as he entered the early intervention program, but I did more work that she did. Having no previous experience with these two fields, I thought it funny at first that I had to talk to them about Ronan when Ronan couldn’t tell me what he was thinking or feeling in the first place. Both the psychologist and social worker were pleasant and agreeable, so my fear subsided soon into that long day of evaluations. The next part of the process included my speaking with the pediatrician who was attending Ronan’s case. I didn’t realize how long that session was going to be. Nor did I realize how much I would be educating the doctor.
We went over a slew of topics—prenatal history, birthing process, first few months at home, typical milestones, vaccine record, childhood ailments, the usual questions one would answer at any initial consult. The further we got through Ronan’s history, and the closer to when I noticed his delays, I interjected my theory of why Ronan acted the way he did. I said I thought Ronan had a reaction to his vaccines. I also told the doctor I was going to fix that. I don’t remember how he reacted, but I know he was taking a lot of notes while I spoke. Ronan was going through his own set of tests and evaluations by the same team members as well as with his teachers. Once Ronan’s tests were over, everyone would reconvene so I could receive feedback from their reports.
I don’t remember everything that happened between the break and the final update. I know that it was agreed that Ronan would graduate from the infant-toddler program to the special education preschool program. Most services were to remain the same and an appropriate preschool would be included in that decision. It seemed that would be the next step but then, I got a little nervous again because I now had to go back to talk to the pediatrician. This was not in the original agenda. I wondered if the doctor had discovered something else. Maybe Ronan actually had a disease or some anomaly that I’d overlooked. I wondered if this thing Ronan had was much worse than I originally thought. I returned to the interview room and waited for the doctor to come in to have this final chat.
I got the unofficial reports that yes, he was a charming little boy with a strong will. Yes, Ronan continued to have delays. Yes, your son needed intervention. Yes, Ronan would stay in the system. Then, the conversations slowed a bit. The doctor started asking me questions again. He went so far as to mention the “A” word to me. “Have you thought that these things Ronan does…could be…?” The way he said it, coupled with the reports offered by Ronan’s teachers and therapists were not a positive autism diagnosis. Call it a “soft” warning to buy time, and that maybe no one wanted to be the bearer of bad news, but Ronan had already walked away with no specific diagnosis. I stated what I had said before, that Ronan had some sort of reaction to his vaccines. Those caused these “issues”, and I was going to look at how other parents helped their vaccine injured children get better. Maybe the early intervention team thought I was nuts and didn’t want to burst my bubble. The doctor nodded his head as I spoke, took a few more notes and responded. He said the reports were compiled and Ronan would continue with the therapy he had already started when he was enrolled in early intervention: maximum amount of time for speech, occupational and physical therapy with full-time placement in the special needs preschool.
I kept Ronan on the biomedical route of hopeful healing for the next few years. Ronan did well with dietary intervention, an introduction to more supplements and lots of encouragement from his family. I have remembered that conversation with the pediatrician a few times over the years. That doctor said that how much I already knew would surely benefit Ronan. I had obviously done a lot of work already and the medical questions I had about Ronan were ones he couldn’t answer. I made a big impression on him and he followed up with me a year later despite not having any further professional relationship with Ronan. He was genuinely interested in the choices I made for Ronan’s health and asked for an update on what was working for him. He also offered to be of assistance if I needed help understanding any of the medical things we might run into.
2005. It feels like a century ago. That transitional meeting was one of my first milestones as a special needs parent—being brave enough to say what I had to say, being wise enough to have already started to look for answers, being smart enough to stand up for and promote biomedical intervention, and being vocal enough to say Ronan has some problems and yes, I need help. I never thought I’d still be working as hard as I do daily for my child, and I didn’t think I’d be at this for so long either.
My previous experience with children who had problems during childhood is far different than what I experience with Ronan. Most of those children eventually outgrew their problem or skilled out of therapy. One or two remained crippled with their disability, and others were miraculously cured of whatever ailed them. Normal life wasn’t so far from their reach, but I fear it is a galaxies away for Ronan the longer he and I walk this walk. I was so sure I’d beat this thing that turned my son from typical beautiful baby into global developmentally delayed toddler. I haven’t though. So, sometimes when I least expect to be touched by something, when I think all my emotions are tapped out for the day, I come across something like this email. I’ve reread it several times while writing this piece just to remind myself what I have had to do as a new special needs mother. Yep, I wrote it. It was me, young mom on a mission. Making things happen and standing up for others is what my life is all about now. Ronan can’t be vocal for himself just yet, so I will continue to stand up for him. I’ll stand taller, prouder and be louder for his needs. It’s part of who I am. I’m not so young anymore, but I am, and will forever remain, that little boy’s biggest advocate.
(…an excerpt from an email to my family at the beginning of this journey…)
The first day of the interviewing was grueling since I was the one answering countless questions to the county’s early intervention pediatrician, psychologist and social worker. At the end of the medical exam and history session, an almost hour-long interview of recapping what's going on with Ronan, the medical doctor closed Ronan's folder and just sat in his seat. He looked like Dr. Freud and I thought I was going to be nailed as that nagging Mom that I am. The doctor kept quiet for at least another full agonizing minute before saying, "Mrs. Jameson, if you had come into any doctor's office 30 years ago, you would have been kicked out." I said to him, "Because no one would be able to diagnose Ronan?" "No," the doctor said, "…because you know too much."
Then he looked at me and said, "If you had come to my office ten years ago and said that you think foods caused behavioral changes I would have laughed in your face." [He had already commented on wanting more info on digestive enzymes and was impressed they worked—Ronan, at 29.5 months old finally started walking 3 days after starting enzyme and dietary intervention.]
The doctor still looked like he was going to yell at me, and I sat pensively in my chair. I thought I was going to get slammed since I knew he wasn't finished. The doc slowly looked up at me and said, "If I was a special needs kid, I would want you for my Mom." I walked away from that conversation very hopeful. I was so proud of me and that little boy who is such the sunshine in our lives. Days can be real tough, but we'll keep doing what we're doing to keep Ronan’s little world going round and round.
Cathy Jameson is a Contributing Editor for Age of Autism.