This is Day 4 in the series: 31 days on Living with ADHD, Autism and Sensory Processing Disorder: What We Have Tried, What Has Worked, What Hasn’t Worked, and Never Giving Up. Click here to see all the posts in this series.
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Can you imagine what it would be like to be walking along and suddenly you are covered from head to foot with spiders crawling all over your body. I know I would completely freak out and start screaming for help. I probably would even fall down and start rolling on the ground! Imagine if this happened to you and all your friends/family, instead of helping you, were just standing around shouting “Stop it! What’s your problem! You are fine. Get up.”
Or imagine you are sitting down to dinner at a friends house and they serve up a plate of beetles and worms for dinner. Would you just eat them? What if your friends started heckling you about it? calling you names? trying to force you to eat it? I would totally gag if asked to eat some crunchy bugs or slimy worms. Yuck.
Or imagine you are suddenly stuffed into a room where there is ZERO standing room. Packed in as tight as sardines and it is deafening loud. Would you start hyperventilating? I don’t think I would be capable of rational thought it would be so claustrophobic.
When Mr Rockstar’s clothes are bothering him or he spills water on himself it is the same feeling as we get from being covered with spiders. If his foot falls asleep he actually describes it as “I have ants inside my leg”. When we serve up mashed potatoes he gets the same gag reaction I would if I ate bugs. At a large family gathering he has the same magnitude of response as I would at the mall right before Christmas. To us his meltdowns might seem overblown but if we understand what he is experiencing we can see that yelling at him to “Get up” when he is melting down doesn’t help at all. In the spider example, I would either wish a friend would help me get the spiders off (or in Mr Rockstar’s case help remove wet clothes) or at least talk calmly to help me regain some rational thought so I could deal with the spiders. Depending on the melt down severity we try to talk Mr Rockstar through fixing the problem himself. We have learned though that if his shirt is bothering him, he should just change it. Trying to get him to ignore it for any length of time is a losing battle. One of the hardest things over the years has been to work out which meltdowns are sensory related and which are just behavioral (more typical childhood tantrums). The sensory ones we try to calmly work with him on. The behavioral ones we either ignore or give him a time out.
The first real diagnosis we got for Mr Rockstar was that of Sensory Integration Disorder (SPD). The speech therapists first started mentioning this when he was 2. At age 3.5 we finally got to see a developmental pediatrician. The developmental pediatrician said Mr Rockstar clearly had SPD but also might have ADHD and other issues but he was too young to tell.
So what is SPD? “Sensory Processing Disorder is a neurological disorder that disrupts the way an individual processes and responds to sensations. Individuals with SPD may over- or under-respond to one or more sensations (e.g., a loud sound, or light touch), crave sensations or may have problems with motor skills and coordination. SPD affects more than four million children in the United States alone—an average of one child in every classroom.”*
There is a ton of information and videos on spduniversity.com. Here is a video on what is SPD:
Two kids can have SPD and respond very differently. One child might be overly sensitive (sensory over responsive) to sounds and another child might be under responsive (sensory under responsive) to sounds. The one child would avoid loud noises while the other child might crave them. We had a playdate once with another SPD kid about Mr Rockstar’s age. It was SO hard because what one of them liked drove the other one crazy. This video explains Sensory Over Responsivity:
Sensory Modulation Disorder (“SMD”): Over Responsive
This video explains Sensory Under Responsivity:
Sensory Modulation Disorder (“SMD”): Under Responsive
“The inability to process sensory information correctly creates problems that manifest as behavioral, emotional, or attentional problems. Many people think behaviors exhibited should be within the child’s control if only he/she cared enough. Sadly these children almost always have difficulty with relationships, playing with other children, being accepted, and learning. Their lives tend to go from crisis to crisis and their families lives revolve around them. Everyone is walking on eggshells so they don’t start a meltdown.” This quote is taken from the next video linked here and is eerily similar to what we see in our family and Mr Rockstar. Therapy is used to increase social participation, increase self-regulation abilities, and increase self-esteem and confidence. As you learn more about SPD you start to realize how hard it is to separate out SPD from autism and ADHD. Many times these all go hand in hand.
Types of Sensory Modulation Disorder
Some children have difficulty interpreting sensory information. They have trouble differentiating between similar stimuli.
- Visually: a “b” might look the same as “d”,
- Auditory: “cat” may sound the same as “cap”
- Tactile: a penny may feel the same as a nickel
- Olfactory: garlic may be indistinguishable from cleaning products
- Proprioceptive: when to push hard vs push lightly may be tough to determine
- Interoceptive: difficult to determine if stomach ache is mild or severe
- Vestibular: movement upwards cannot be distinguished between moving downwards
No wonder I am having such a hard time teaching Mr Rockstar to read! Usually SPD children have a few senses that are more over or under stimulated than other senses. They are sensory seeking in some areas and sensory defensive in others. Mr Rockstar is sensory seeking in proprioceptive (which is why he has always played too rough with other children) and vestibular senses and he is sensory defensive with visual, auditory, tactile, and olfactory senses.
Sensory Discrimination Disorder (“SDD”)
But is SPD really a valid diagnosis?!?
A recent study was released in 2014 showing Kids with Autism, Sensory Processing Disorders Show Brain Wiring Differences. The article goes on to say “SPD can be hard to pinpoint, as more than 90 percent of children with autism also are reported to have atypical sensory behaviors, and SPD has not been listed in the Diagnostic and Statistical Manual used by psychiatrists and psychologists.”
“One of the most striking new findings is that the children with SPD show even greater brain disconnection than the kids with a full autism diagnosis in some sensory-based tracts,” said Elysa Marco, MD, cognitive and behavioral child neurologist at UCSF Benioff Children’s Hospital San Francisco and the study’s corresponding author. “However, the children with autism, but not those with SPD, showed impairment in brain connections essential to the processing of facial emotion and memory.””
So What Can I Do?
Occupational therapy has been shown to be an effective treatment for kids with SPD in improving adaptive behavior and skills. It also helps reduce problematic behaviors such as anxiety, inattention, hyperactivity and aggression in kids with SPD. Finding a good OT is a great place to start. Just like with speech, if your child is behind in the area of fine motor they may qualify for therapy through the state through the Birth to Three (or Early Intervention….it is called something different in each state) program when they are young or through the public school once they reach PreK. You do not have to send your child to public school to use these services. Your child might also qualify for state PreK if they qualify for therapy services.
Your occupational therapist will give you “homework”. They let you know what they are working on at the moment and what you could do at home to help your child.
Other places to learn more information on what you could do at home to help your child are:
A couple good books that were recommended to us by Mr Rockstar’s occupational therapist are Too Loud, Too Bright, Too Fast, Too Tight: What to Do If You Are Sensory Defensive in an Overstimulating World and The Out-of-Sync Child
Below is a pdf file you can download that was given to us by the Speech Therapy department at Purdue University. It explains SPD in young children and has ideas on activities you can do at home to help your child.
Download pdf file: Sensory Integration and Early Child Development
A few practical tips we have learned:
If your child is over responsive to loud sounds these child size ear-muffs are lifesavers. There is no way we could ever take Mr Rockstar to a movie or to watch fireworks without them. Plus when his sisters decide to start screaming and he can’t handle it he can put them on 😉
These color therapy glasses can help when Mr Rockstar feels overwhelmed. They are kinda pricey so he only has one pair in orange. He was able to try out a couple different colors at the occupational therapists.
Mr Rockstar loves the lycra swing at therapy so we finally got him one. It squeezes him so tightly and evenly, it calms him right down.
Similar to the lycra swing is the body sock. It is great for traveling or just as another option.
Mr Rockstar loves him compression base layer pants and shirts. His occupational therapist thought he might like it because it squeezes him. Mr Rockstar tried them a couple times and then fell in love with them. He calls them his “huggie” clothes because they hug him. This is about all he has worn for the last 2 years. We love it and hate it. It really minimizes the number of clothing meltdowns he has and helps him stay calm. But we also get a LOT of comments from people about “he must be a dancer” or “he must be a runner”, etc.
Food textures are another issue but have gotten a lot better over the years especially with the help of the occupational therapists.
The occupational therapists frequently talk about a “Sensory diet”. The idea is Mr Rockstar needs certain stimuli in order to stay grounded. For example, he is sensory seeking with deep pressure and sensory avoidance with light touch. If he gets enough squeezing and heavy exercise this grounds him so he is less rough (seeking heavy impacts) and more calm (less skittish of light touch).
Here are a bunch of ideas to promote a healthy sensory diet, activities that tend to be soothing and organizing, activities to help with picky eating, activities for children to do around the house, etc that all came from the pdf document given to us by Purdue University Speech Therapy Dept:
Ideas for the kinds of things you can do with your child that tend to be soothing and organizing:
Information from www.thomshild.org group:
As we have learned more about sensory integration disorder I think we all have a little of this in each one of us. I know there are certain sounds, touches, environments were I am more sensory defensive. How about you?