I had always been wary of medicating children. I had heard horror stories about numbing them to life so much that they lost bits and pieces of their personality. The doctor tried to convince me by telling me it was very common for children with special needs to need medication. SPECIAL NEEDS???? When did I become a parent to a child with special needs? This realization floored me. It took me digging deep to pull up the courage to give the doctor the go ahead to start a medication plan. They started him on a small dose of Ritalin and although that initially seemed to help him deal with frustrations at school, after about 2 months we were back to square one. Following medication changes over the course of the next year, we seemed to experience every bad side effect you could imagine. It started with increased anxiety, fatigue, irritability and loss of appetite, but the worst part was the insomnia. Here I was with this 8-year-old child that didn’t sleep…..not one wink.
I brought my concerns to his doctor, who was running out of medication options. With the last round of changes, I remember the doctor saying to me “This is the last page of the recipe book”. Well, that last recipe failed, too. Life on the medication seemed to be so much harder for my kiddo than it was without, so we stepped down the meds until he was off them completely…….and he slept.
During this year, my son was in the 2nd grade. His teacher at that time had previously been a special ed specialist. She started to become concerned with his focus issues in the class room and his deficits in the areas of reading and writing. She suggested that we start the process for an IEP (individualized education plan) to get him help in school. Now that he had a diagnosis of ADHD, they could evaluate him in school and figure out what services he needed in the class room. It was at this first IEP meeting that the school OT (occupational therapist) suggested that my son might have Sensory Processing Disorder and not ADHD. This information set me on a quest to research the connection between the two disorders.
I had heard of Sensory Processing Disorder, otherwise known as Sensory Integration Disorder before, but hadn’t read too much about it. To me, it was a given that my son had SPD, I just wasn’t aware of what it truly was. He had always had issues with texture, noise and smell. This was something I always attributed to him being born premature, since that is very common. It got to the point where I couldn’t vacuum or use spray cleaner without him throwing a fit. My mom or sister would have to take him out for a few hours just so I could get some house cleaning done or they would sneak in while I was at work and the house would be clean when I got home. He didn’t like textures, I had to cut tags out of clothes and flip his socks inside out. Food textures made his dietary choices a challenge. He would complain on a daily basis that his feet hurt like pins and needles if he walked short distances and he would cry if I combed his hair, telling me it was painful. So, yes, I knew SPD would make him hear, smell, taste and feel things differently…..but how does that explain the outbursts and tantrums?
What I learned was that SPD is what they call a neurological ‘traffic jam’. The brain is taking in more information than it can process. The best way to describe the frustration people with SPD feel is like a dripping faucet or buzzing, flickering fluorescent light. Most people who hear or see those things will get frustrated after a long period of time and just want it to stop, so we will simply shut the faucet or light off. To people with SPD the whole world is their fluorescent light with no off switch. Most adults with sensory issues have learned over time how to adapt to (or simply avoid) the world around them. With children, it gets so overwhelming, they react in the only way they know how to release frustration…..a tantrum.
I started reading everything I could about this disorder and started seeing my son in the pages of the books. I began learning ways to help him around some of these frustrations. I let him take baths instead of showers because he said the water was ‘pokey’ on his skin. I had him do his homework at my drafting table, having his work angled up seemed to control the light level on his page. I taught him how to vacuum, we found that if he controlled the noise, it didn’t seem to intrude on his senses as much. I found out that another big SPD issue is called vestibular dysfunction, which pretty much means they can’t balance as well. My son would fall out of chairs for no reason or trip over his feet. This had always caused issues in school, where teachers would think he was trying to be disruptive or funny. The only reason I never took their complaints to heart was that he did this at home too and there was no need to be a class clown at home when you’re an only child. He also couldn’t ride a bike, even with training wheels, without falling over. My answer to this was gymnastics class. After a year of weekly classes on trampolines and beams, he rode a bike on his own…..at the age of 9.
The biggest reward from the time spent on these books was my relationship with my son. I was a lot less frustrated with his meltdowns. I started viewing them differently and dealt with consequences accordingly. I would pay attention to what had caused the meltdown and how he handled it. He had a habit of running out into the road in the middle of violent tantrums. I had to install a bolt lock on the top of our door. He would also physically hurt me, his most common action being digging his nails into my arms and hands until I bled. So if he had a meltdown where he tried to run or hurt me, he would have consequences for his actions, not the meltdown itself. I never informed him of punishment during the tantrum, as kids in this situation can’t even process the information you are giving them. I would wait until he had calmed down and then lay out the ramifications of his actions. This started a process of letting him know that I understood his frustrations, but he had to learn other outlets for this frustration that did not bring harm to himself or others.
Although he still had a diagnosis of ADHD for IEP purposes, he was no longer on meds and I decided to focus on the sensory issues instead. During this time things started to calm down a bit. His meltdowns slowly went from 3-4 times a week to 3-4 times a month. I know it was still a lot by normal standards, but a huge improvement for us. I eventually learned that this was the calm before the big storm that was to come.