This past April I wrote the first part of this blog, based on a workshop that I and my writing colleague, Sarah Broady, presented at Key Ministry’s Inclusion Fusion Conference that month and also presented at the Wonderfully Made Conference in October. The workshop is based on a conversation we had last year, in which we thought about all of the times that we, as special needs parents, had been put in the proverbial corner by the world. Whether at the doctor’s office, with our child’s therapy team or clinic, in the classroom or conference room for an IEP meeting, many times we are just not considered experts on our children. We are then relegated to being just a bystander while the real “experts” make proclamations over our children. While they may be truthful many times, they still don’t define our children totally. It is in those moments and places that we must step in and be the voice in the gap between the understanding of the experts and the knowing of our hearts, and speak out the value of our kids that only we can communicate as parents. It is then we are more than parents, rather, we are our child’s greatest advocate, proclaiming their value to a world that many times diminishes them as capable human beings.
In that first part I told a story of the experience that my son had a private Montessori preschool, where he had initially been welcomed. We felt it was a wonderful environment for him and his unique challenges. During his second year there, he was moved up to the traditional primary classroom, which is a classroom for 3-6 year old students. But then his deficits became more obvious, and we later discovered the lead teacher had shunned him. Since she had no background in working with autistic/special needs children, she essentially allowed him to exist in the classroom, but really only had his one-on-one aide that we supplied from his clinic interact with him, and did not seek to more deeply engage him or teach him. The most challenging part though came when we discovered through the aide that even on the playground he was being directed away from other children, because the teacher felt that somehow his behaviors were not appropriate to have there. We were shocked when we heard these things and immediately made the decision to pull him out of that school for the next school year. Yet we were left feeling that we had somehow failed him. Even though we are teachers ourselves, we were not experts in early childhood development, and had just accepted that whatever we were being told was necessary for him, even if it wasn’t right to us.
This month, I would like to share another experience, this time focusing on something from the medical perspective, something that happened fairly recently, about the same time I wrote the first part of this post. I actually wrote a separate blog post about this particular event, as it was so incredibly profound for us, as it involved my son having a series of seizures that were totally unexpected, as he had no history of seizures. The day the seizures happened, he came home from his Saturday therapy and was completely unresponsive coming out of the car. We immediately called for an ambulance. He later had two more grand mal seizures in the ambulance en route to the hospital, and when we arrived he was hooked up to a variety of monitors, and was eventually given a CAT scan. The scan showed something we had no idea about and something we had never even heard of: we were told he had something called a Chiari malformation. Essentially it meant he had swelling in his brain at the base of his skull that was causing extreme pressure, which more than likely resulted in his manifesting the seizures.
While we were told that that his condition was more common than we realized, and that it was perfectly correctible, albeit by brain surgery, there was a feeling of regret that crept over us during our initial five day stay in the hospital. As we met with and dialogued with all of the many specialists who came to visit my son’s room during that time, we continually expressed how this came out of nowhere. The only reason we knew about his condition at all was due to the seizure activity, and since he’s functionally non-verbal, he couldn’t tell us about any headaches or any other symptoms. However, there is one other way that we could have found out, many years in earlier in fact, that is if we had chosen to get him an MRI when he was much younger, when he was originally diagnosed with autism. My wife reminded me about the conversation we had with my son’s neuropsychologist when we received the results of her findings, and she suggested having an MRI done just to get more information. When we asked if it would change any of his treatment options, the doctor essentially said no, and so rather than subjecting our child to the MRI, which would have required sedation, we agreed to just forego it then.
Now that the seizures and resulting discovery of the malformation came up, we allowed feelings of guilt and regret to come in and make us second guess our decision. What if we had agreed to do the MRI when he was three, and it showed that he had the beginnings of this condition, regardless of how serious it was back then. What if we had that information years ago, and could have made a plan to have it monitored over time, knowing that it could be an issue later. What if we had just listened to the neuropsychologist, as specialist and trained professional who knew more than us, and even if she didn’t believe it was critical, maybe she knew it would help. Now we had very severe condition present itself, and now had to make the decision for surgery and do it relatively quickly so that it would not get worse. Our son would be looking at another hospital stay of several days for the surgery, with weeks and months of rehab, essentially missing the remainder of his fifth grade year, and out of all the activities he loved to do.
As we reflected and prayed over the next days and weeks, the realization that we finally came to was this: we did exactly what we needed to do as his parents, and had made the best decision that we could in the moment we did. The reality in this case was that while no doctor or specialist was accusing us of making the wrong decision; we were the ones engaging in the self-doubt and judgement that many parents feel in situations like this. We knew that if it would not alter or change the direction of his treatment, it was probably not that necessary, and we could surrender any of the information the scan would provide concerning anything that had happened in utero. We also knew our son would need to be sedated, which at his age was not something we wanted to subject him to, considering how sensitive he was due to allergies and other conditions. Last, we discovered that in most cases when a Chiari malformation is diagnosed at an early age, the advice given is usually to wait and see how the brain and skull develop, as many times they are corrected naturally. In the end, we had to return to the peace of knowing that we, as his parents, were the most important experts in that decision.
I am happy to share that my son has made an almost full recovery from the surgery just six short months ago. He has returned to school to start his sixth grade year and has resumed all activities with almost no restrictions. We could not have imagined the year we just experienced, but we know that as parents we are the ones responsible for making the best choices for our child all the time, with the counsel of doctors and therapists included. Most importantly, we remember that our decisions are based in prayer and faith, all the while receiving counsel from above, from our family’s greatest Advocate.
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