My son Josh is not a picky eater. He’s always been good about trying new foods. If Josh resists eating something the problem he has is not usually with the taste or texture of something, but the smell.
As a young adult Josh now manages most of his sensory problems with ease. He has discovered that he enjoys cooking and decided he needed to expand the number of recipes he knows how to make. I’ve taught him the basics of meal preparation, and I compiled a list of easy-to-prepare recipes that I thought Josh would enjoy making and eating. One such recipe was “Easy Lemon Chicken”. Josh would gladly consume the final, baked version of this dish. Unfortunately, and I didn’t know this about Josh, he can’t stand the smell of lemon juice.
He’s fine with lemonade, lemon-scented soaps, cleaning wipes, and lemon jello. In fact, I can’t think of anything lemony that Josh reacted negatively to as a child. This experience revealed that there is something different and acrid for him about lemon juice and it was so hard for him to smell that concentrated lemon scent that he had difficulty just measuring it out to make the recipe.
Adding to the challenge was Josh’s tendency to be impulsive, which of course is consistent with his ADHD diagnosis. With all the ingredients, even very common and frequently used ones, Josh automatically gives them a sniff before adding them to a recipe. He tells me he needs to check to make sure the smell is consistent over time and that things should smell exactly the same way each time or something seems wrong and he feels suspicious about that ingredient. In any case, sniffing food items is a well-developed habit by now, though thankfully not in public anymore.
Josh gave the lemon juice a whiff, and had an immediate nose-wrinkling response followed by thrusting his arm as far from his nose as he could extend it. Blinking incredulously, Josh proceeded to…take another whiff from the bottle of lemon juice. Why? Partly due to impulsivity and partly due to his sensory system demanding consistency over time. He had to check again just to make sure it smelled as noxious to him as it had the first time. Yep! It still smelled awful to him, but at least he knew what to expect the second time.
Predictability is comforting to the sensory-challenged. It helps to know what to expect, even if it is still an unpleasant sensation. Better the bad sensory experience you know than the unexpected sensory experience which could prove very unsettling merely by the unpredictability factor. Josh powered through the olfactory assault as he prepared the recipe, although it wasn’t as “easy” for him as the recipe name implied.
I’ve met many parents who are pretty sure their child has AD/HD or some other learning challenge but they are hesitant to make it official by having their child evaluated and diagnosed. The fear that a label may limit their child, be inaccurate, or be used in discriminatory ways is valid. When my son, Josh, was approaching school age I thought about the advantages of private schools with smaller class sizes. Several people suggested that I go ahead and enroll him without telling the school personnel about his AD/HD diagnosis so they couldn’t turn him down. That was before we knew he also had an auditory processing disorder. I was assured that once he was enrolled in the school, they couldn’t kick him out just because he had a diagnosis and they would be forced to work with him. Wow! For one thing, Josh was pretty easy to pick out of a group as being different than his peers. I’d give it 5 minutes tops before things became unavoidably noticeable. So basically I would have had to keep him out of sight until school had officially started. Then there was the whole idea of the people he would be spending hours with each day being tricked into having a student that they weren’t prepared for and apparently didn’t feel equipped to deal with in their classroom. That made me feel sorry for Josh and for the teachers, since having someone who was “forced” to work with my child because I had hidden some vital information from them just didn’t sit well with me. I loved that boy, and the thought of sending him somewhere that he might not be wanted didn’t make sense to me. I had the same dilemma when it came time for Sunday School at church. I didn’t want to bias the teachers against Josh by telling them all his struggles, so I coached him on the way there and dropped him off like all the other parents with their children. The Sunday School teachers, bless them all, are volunteers in the church and most don’t have training as educators – and for most kids that’s just fine. But to do the “drop and run” with a special needs or challenging child is not a good idea, as I came to realize. Every week, the other parents would pick up their children and happily leave. When I came to pick up Josh, I inevitably got pulled to the side and told, “I need to talk to you about Josh.” Then I heard, week after week, a full litany of complaints from frustrated and bewildered teachers who were describing things that were not unusual for Josh but were not typical for most children. For example, Josh was not adept at sitting still for long. He was not deliberately disruptive and was never disrespectful, but his need to stand at the table while coloring his page instead of sitting in a chair like everyone else was considered problematic. His sensory issues led him to sit at the back of the group on his carpet square, and everyone else was huddled together and bumping into each other which Josh was carefully trying to avoid. But that meant he wasn’t “with” the group because he had made a row of one – just himself! And the list would go on and on until I was finally allowed to leave with my miserable son who knew that somehow just by being who he was he had screwed up again and people were unhappy with him. Those experiences led me to advocate more and be preemptive with anyone I left Josh with for any length of time. When there was a sub or a new Sunday School teacher, I made a point of telling them a bit about Josh and strategies that would help them, and I was careful not to dwell on the negatives. I shared Josh’s strengths, too, for I found that if I became negative about my son others felt free to share every little thing they saw as being wrong or weird about him. I was well aware of Josh’s struggles and it served no purpose other than to discourage me when others felt the need to complain about him. All this, and he wasn’t even doing anything “bad” on purpose! When someone was going on and on about all the things Josh did or did not do, I learned to quietly point out something that he had done right, or I’d share something that Josh had enjoyed learning in their class previously. This seemed to derail some of the negativity some of the time. Just as with our kids, nothing works all of the time but something will work some of the time. We need strategies for working with those who are in a position to care for our children, and hope that something will work some of the time. Whether you are a natural advocate or a reluctant one, if you have a child with a learning difference or special challenges, you must be an advocate unless and until your child one day develops the skills to advocate for himself. In my experience, being deliberate in my advocacy was hard but preferable to what happened when I just waited and hoped things would work out for the best.
