My little sensory seeker

I’ve mentioned here before that my son has had some developmental delays since he was about a year old. He has displayed a lot of sensory issues and was diagnosed with Sensory Processing Disorder SPD) by his Occupational Therapist at 18 months. If you are not familiar with SPD, the best way I can describe it to you is that a person with SPD has trouble regulating their sensory input. It presents in many different ways, some kids are sensory avoiders and dislike loud noises, fast movement, and over stimulation. Other kids are sensory seekers and crave constant motion and movement. Many kids are a combination of both. Boo Boo is a combination. Kids with SPD are sometimes anxious and overly cautious. Many are misdiagnosed with ADHD and medicated unnecessarily. If you are interested in learning more about how SPD works, you can visit the Sensory Processing Disorder Foundation’s website.

BooBoo is constantly in motion. He craves movement and sensory input as much as possible. He loves to swing, run and jump. As a toddler he used to watch tv upside down because he liked the feeling of the head rush. Even as an infant he sometimes only could only be soothed by TV. He would fall asleep with the Baby Einstein DVD’s playing on the TV. Now he is really only sitting still if he is absorbed in the tv. It focuses his senses so he is able to hold his body still.

Sensory issues often cause development and speech delays. Some kids have trouble forming words correctly in their mouth. Others are so distracted by the all the senses coming into their bodies, they are unable to focus on learning. For Boo Boo this was the main cause of his delays. Once his SPD was diagnosed and we began finding ways to calm his body and senses, he was able to start taking in new information.

He has made amazing progress over the last few years and I am incredibly proud of him. He went from not saying his first words until age 2.5 to being extremely (and I mean extremely) verbal at 4. Developmentally he has remained somewhat behind his age group. He is in a class with 3 and 4 year olds and he seems to relate better to the younger kids, and that’s okay. I’ve thought for a while now that I may end up delaying his entrance to kindergarten for a year, or possibly have him do 2 years of kindergarten.

Over the last 6 months, new concerns have cropped up. He has a lot of issues with food. I read recently about the difference between a picky eater and a problem eater. A picky eater had a limited repertoire of foods they will eat, but will still sometimes try or add new foods to the list. A problem eater continues to remove foods from their list. They sometimes will eliminate entire food groups, colors or textures. Boo Boo’s diet now consists of various forms of peanut butter and jelly sandwiches and pizza. He eats some fruits, and snacks like chex mix and goldfish. And that’s it. He has continued to remove foods from his diet. He used to eat chicken nuggets, fish sticks, hot dogs, typical kid foods.

For anyone who has ever had the attitude of, “my kids will eat what I make them and if they don’t like it they can go to bed without dinner,” has never had a child with sensory issues. He WILL go to bed hungry. And he won’t, “eat if he gets hungry enough.” (Side note: unsolicited parenting advice and cliches offers by people who don’t have a child with special needs is NOT appreciated.)

In addition to the eating issues, we are struggling with behavior issues. Boo Boo becomes very, very focused on certain activities and it can be difficult for him to remove himself from them. He often will continue to do things after clearly being told to stop, like touching things he is not supposed to or playing with a toy. Of course, some of this is age appropriate for a 3 or 4 year old. It can be difficult to gauge how much of his behavior is age-related and how much is caused by or amplified by his extra sensory needs.

He has become extremely sensitive to loud noises, bright lights and cold temperatures. He can often be observed enjoying activities while holding his hands over his ears. When he is over stimulated he will often complain of being cold and will even start shivering when it’s not cold outside. He also has problems being touched on his head in any way.

Hair cuts are literally torture for both of us. He cries as if he is being tortured for the entire time. His hair is usually either super long and shaggy in his eyes because I have put off having it cut, or cut short and unevenly because he would not hold still while having it cut. Hair washing is a daily battle, as is combing hair and brushing teeth. Washing his face, wiping his nose and cleaning his ears each involve their own fight. I can rarely use a thermometer to take his temperature. He has. It yet visited the dentist because I just don’t see how he would be willing to allow anyone to look in his mouth.

Now that we are approaching school-age, my concerns about how BooBoo is going to function in a classroom are increasing. I scheduled an appointment with a developmental pediatrician at Children’s National Medical Center next month. I don’t really know what to expect. SPD is not a recognized disorder in the DSM IV (the manual the medical community uses to evaluate and diagnosis psychiatric and developmental disorders.) Some symptoms of SPD are very similar to those of autism. In fact, most kids with autism have some form of SPD as well. But, many kids have SPD without having autism. As a single mom who works full-time, I don’t know how we will manage occupational therapy or other recommended services.

But, we will find a way. The first step is getting some answers and some solutions to help him. The rest will work out somehow, someway.

I had a point for sharing this, but it spent a lot more time explaining the history than I planned. So I will save my vent about being a single parent to a child with special needs and the rant about my mother’s horribly offensive reaction to a recent conversation about my child for another day.