As most of my readers know, my family and I have been on a tumultuous trip to find a diagnosis of our youngest kiddo. Early on, we knew he viewed life a bit different, but we couldn’t figure out if his behavior was unique, or if he was emulating his older brother, who is on the autism spectrum. He seemed neurotypical most of the time but had, what seemed like, behavioral and sensory issues.
At age 5 and 6 he was observed twice by the autism clinic that had diagnosed his brother, due to the increased chance of a younger child having autism when a sibling does. Both times that the doctor saw C, she felt that he was “too social” to merit a formal evaluation and/or diagnosis. Considering that underdeveloped social behavior is often a key in diagnosis, we felt that this result meant that we could move on from autism and proceed in another direction.
As he got older, he seemed to socialize appropriately, although minimally, with preschool kids and other friends. He asked to have playdates with friends, something we hadn’t yet encountered with E. He excelled in his preschool environment. At home, he still had many behavioral issues though. He was extremely sensitive emotionally, and to things like food textures and loud sounds. Red flags started showing up in my mind, making me suspect that the negative autism diagnosis was wrong.
Potty training seemed to go well enough and he did so well in preschool that he started kindergarten as planned. This is when things got really difficult. He started having potty accidents at school followed by emotional meltdowns from the embarrassment. He felt like no one liked him. It was too loud and busy. It overwhelmed him. The teacher tried his best and felt like C was just a little more emotional than other students but that he’d grow out of it. After-school pickup became the worst part of my day. He’d completely fall apart at home, often as soon as he got in the car. Then morning drop-off became a challenge. He started resisting getting dressed, getting out of the car and so on. His teacher reported that he often would curl up and cry under one of the tables during snack time, rather than choose a snack. Soon, our family life began to suffer. Hubby and I were so stressed and overwhelmed. We were struggling to find the tools to help E with his many issues, as well as figure out what was going on with C.
We made the decision to homeschool. We had already started homeschooling E, due to his intense anxiety. It seemed to help and make things easier for him. We joined an alternative school program where the boys did their work at home, led by me, then met with their official teacher weekly to review what they were learning and make sure that they were progressing. Eventually, C started to fight even going to this weekly meeting. When he did go, he wouldn’t talk much or share with the teacher, especially if I was in the room. Some days, I couldn’t even get him to leave the house.
As time went on, we tried to meet with another pediatric psych doctor for some sort of evaluation. He did a perfunctory evaluation and was very unhelpful, indicating that we were not strict enough as parents and we needed to do better, claiming that there was nothing wrong with our child; there was no need for evaluation or intervention. Looking for a second opinion, we found a local family psychologist who, right away, noticed ADHD symptoms and recommended we get him occupational and physical therapy evaluations. We were able to connect with a wonderful place, several hours away, that did evaluations and recommended therapy for both of our boys. They even caught an eye issue that C had, and sent us for a formal visual therapy evaluation.
After all this time we were finally getting some help. The drawback was that it was quite a distance for us to reach these therapies; about 3.5 hours each way. We would end up staying away from home (including travel days) for three days, every other week. This took a toll on us all. Especially the boys. They would suffer from a “sensory hangover” for days afterwards, which led to less school and activity. Every other week was a wash. It was expensive and time consuming. It was exhausting to me, being the chauffeur so that dad could work.
On top of all that, we realized that C was not using the bathroom as expected. Once it dawned on us, we started keeping track and noticed that he often would go a week to three weeks between bowel movements. At one point, he became so impacted that he couldn’t urinate, requiring a trip in a helicopter to the nearest hospital. Other times, we would end up in a children’s ER (A&E), which was another impressive distance from home.
Because of how far away we lived from advanced medical facilities, we made the decision to uproot and move to a city 300 miles (480km) away. We sacrificed a lot to make that move happen but, if it helped the boys, it would be worth it.
Even in our new home, C’s behavior continued to deteriorate. His anxiety took over. His self-esteem crashed. His GI issues became worse. We found a great pediatrician who gave us referrals to specialists. We started working with a pediatric gastroenterologist (GI doctor). After three hospital stays for bowel cleanouts in a year and a half, we were able to get a referral to a psychologist who performed a neuropsychological evaluation. We were given tentative diagnoses. Tentative doesn’t work for insurance, so we decided to pursue a more official diagnosis.
We were put in touch with a facility that works exclusively with pediatric mental health. After evaluations by a psychiatrist and a psychologist, and much waiting and uncertainty, we finally have results. C has officially been diagnosed with High Functioning Autism, ADHD, Anxiety and Depression; a potent combination of issues. One of the things I suspect got in the way of a true diagnosis for so long was Masking. Masking happens with kids on the spectrum who are aware of their differences and are skilled at hiding them so that they appear normal, helping them avoid social stigma.
Along with this, we realized that our GI doctor was convinced that C’s issues were simply behavioral, with no physiological cause. Since C is very distressed by his bowel issues and tries, without prompting, to do what he needs to do, we decided to get a second opinion. Something that has worried me, is how much medication the previous GI doctor had C taking. Most of the medications are not meant for long-term use due to dependency issues. Were we making things worse?
Our new GI doctor was amazing. He is the head of the pediatric GI department and is a professor at the medical school. Apparently, he doesn’t often take patients but, C’s issues intrigued him (maybe he just felt sorry for us). He took what we already had gone through and moved forward, rather than rehashing everything. He had us take C off all the medication the prior GI doc has prescribed and agreed that there is a good chance that there is something more than simply behavioral withholding going on. He had us meet with a GI psychologist and GI dietitian to see if they could offer any additional advice. Both felt that we have been doing the right things and didn’t offer much in the way of help. Disappointing, but it was worth a shot. Now we are approaching the day that C is to have a small procedure called an Anorectal Manometry. This uses a catheter and a balloon to measure the rectal muscle contractions to see if they are functioning properly. Hopefully this will help us determine how to proceed and let our wonderful nine-year-old boy enjoy a normal life in normal underwear. Until then, all we can do is take it a day at a time.