Stimming, Stimming, Stimming, Stimming, Stimming, Stimming, Stimming, Stimming, Stimming and more Stimming. That is what I think-all day long.
Being the mother of a child with Down syndrome is the easy part for me. Being the mother of a stimmer is the hard part, it is exhausting. Ever since Emmalin was old enough to stim-she did. Is is Down syndrome? Is is Autism? What is it and why does she do it?
With the help of NACD I got the labels out of my head. "Stop looking for a label and fix it....fix it now", Lynn always knows how to send me into overdrive. If you truly need a label just consider this-it is stimming and we have to figure out the source and stop it.
What is stimming:
Sensory play, self-stimulating behavior, or “stimming” are all terms used to describe a group of behaviors seen in many delayed children. It is repetitive, it often appears compulsive, and it can occur using any of the senses. Parents usually describe it as something that does not seem quite right.
Sensory play is a learned behavior that an individual develops for several reasons. Primarily, it feels good and so the behavior is repeated. With typical young children, playing with toes and fingers is pleasurable. Developmentally, it is important as connections are made in the brain about where their body is, but the child soon moves on to the next exciting step in development.
When senses are delayed or impaired, the child can become stuck and the behavior becomes obsessive and can actually stop development. You may have heard some say that sensory play is beneficial, calming, a communication attempt, or even a type of psychological mechanism. It is possible that on an unconscious level, some children use stimming to control their environment or to avoid the things they wish not to do. For example, if a child stims he may be able to avoid uncomfortable social situations.
Why do they stim:
Repetitive sensory play creates endorphins, “happy,” “feel good” chemicals in the brain, much the same as the “runner’s high.” These chemicals become addictive, causing the individual to repeat the activity in order to renew the good feeling. Thus, the child becomes trapped in a compulsive behavior. Development stops progressing, becoming more and more delayed, and for many children actually begins regressing.
There is often a metabolic component to stimming. When children are out of balance metabolically, their stimming is increased. Appropriate metabolic intervention can often reduce stimming and occasionally halt it.
The causes often relate to dysfunction in one or more sensory channels. To address sensory dysfunction, we need to determine why the sensory information is not going into the brain correctly (where it would organize and progress to the next level), stop the sensory play, and address the root cause of the dysfunction with specific, appropriate neurodevelopmental activities.
What does it look like:
The behavior will appear strange and repetitive, and there is often a compulsive element to it. Typically, a child who is stopped from stimming will become quite angry. Stopping stimming is equivalent to breaking an addiction such as smoking or drinking caffeine. The intensity of the anger can be a clue to parents as to how “stimmy” a behavior is. To stop sensory play, parents can redirect the behavior, distract the child and get them engaged in other activities, or remove the implements the child is using to stim. It is usually best not to try to explain or attach a negative feeling to the stim. Nagging does not work and can sometimes intensify the behavior. When the quantity of stimming has been reduced, it can sometimes be refined into something more appropriate. An example is teaching a child who makes strange throat noises to form words.
Here are some videos of Emma stimming. This WAS Emma in her down time, tired time or not feeling well time. I normally do not let her "go there" but for video purposes I did. You have to know how far your child is willing to go. I have always been able to say her name and pull her out of it but for some kiddos this is just not the case.
Other examples of stims:
VISUAL:
Dangling strings, shaking toys, wiggling fingers— in front of or to the side of face usually in exactly the same spot, lining up toys excessively, repeatedly stacking toys and knocking them down, spinning wheels on toy cars/trucks, pushing toy trucks and cars while tilting head to watch wheels, watching out the window at cars driving by, staring out window watching dust specks in the air, watching ceiling fans, staring at dining room lights, looking sideways and/or upside down at TV, nose on TV, flipping pages without looking at pictures, flipping toys, wall walking, opening/shutting drawers and doors, spinning bowls, spinning toys, walking in patterns, pacing, splashing, watching water, running sand/beans etc. through hands while watching, spinning coins, looking at maps with nose about 1" away, following roads on map with nose, box hopping or lining up chairs, laundry baskets, boxes and storage containers in a path and stepping from one to another, rocking: from foot to foot, back and forth, side to side, throwing or dropping toys, throwing toys over shoulder, picking fuzz, shredding paper, looking out car window with peripheral vision (while giggling), walking down hall with head to one side, standing on head on furniture, running in circles, rewind video while watching it rewind excessive, drawing, rubbing pencils together, watching own reflection in doorknobs, toasters, windows at night, oven door, shiny faucets, TV screen when off, clean cars, blank computer screens and mirrors, holding up small toys (usually characters) in front of TV while video is going, turning head in light patterns made by blinds, obsessively pouring a "slinky" from hand to hand, watching a yoyo with peripheral vision over and over, multiple cartwheels frequently and excessively head shaking, spinning own body or twirling around, twirling self under own arm which is against a wall, dangling pieces of grass or twigs, twirling long hair or braids (girls) in peripheral vision.
For Emma this is how she likes to stim. Anything that dangles or flips is in our danger zone.
VERBAL or AUDITORY:
Blurting out loud and/or high pitched noises, repetition of odd noises/sounds, talking to self, excessive and nondirective echolalia of phrases, movies, songs, humming, nose humming, banging on everything, throat sound, compulsive pounding toys, or books excessive giggling, excessive pretend play, electronic games that repeat, inappropriate giggling (often a sign that they are stimming), repeating a video scene over and over, telling the same story over and over, constantly singing reciting alphabet over and over.
Auditory was some of the first signs of stimming for us. She babbled and babbled and babbled...now I know why. So happy that my daughter is a talker but I see repeating the alphabet and numbers a little different than many other parents now.
TACTILE:
Chewing on insides of cheeks, rubbing clothing between fingers, biting fingernails, chewing fingernails, scratching obsessively/to bleeding, head banging, teeth grinding, spitting, grabbing someone's arm with both hands and squeezing with head against arm rubbing face/hands, bobbing up and down with top part of body while sitting in chair sucking on tongue.
How to stop and why:
Neurodevelopmentalists Marilee Nicoll Coots, B.A. and Cyndi Ringoen, B.S., B.A., view sensory play as negative, self-perpetuating, self-isolating behavior. Their goal, and the goal of the parents they work with, is to help each individual develop to their highest potential. Therefore, they discourage any behavior that will be counter-productive to high function.
Now here is what we did. Anyone that knows me knows that I will dig my heals in. I will figure out a way. It may take me a lot of time, but I will not give up. My child was not overcoming it, I had to help her.
1. Cleaned up diet. We are gluten and dairy free. I take a lot of steps to support good gut.
2. Emma's ears are nice and clear. We monitor ears quarterly and inserted tubes to eliminate fluid. Anytime Emma is not herself, we check ears first.
3. We are on a ND program and we push processing.
4. We keep engaged best we can.
5. I do an Essential Oil Raindrop detox on her every 4 weeks.
6. Each bath consists of Epsom, Apple Cider Vinegar, Baking Soda and Lavender.
7. We do therapy recommended by NACD to support peripheral vision.
8. We exercise-which resulted in Emma stimming on the lines around the track......AHHHHHHH.
9. We have hippotherapy once a week which gives her a lot of good input that she craves.
10. We stay on top of thyroid, the biggest piece of the puzzle.
Doing all of this and Emma was still out of balance. So I researched deeper (because that is what we have to do right?). I read a great article from Andi Durkin regarding a supplement called Bacopa that helped Jett with his stimming. I knew I had to give it a try. I contacted Andi and she so graciously helped me out. Thank you dear friend...you are changing so many lives.
http://dsdaytoday.blogspot.com/2011/05/bacopa-monera-extract-bme.html
After two weeks to get to the correct dose (1 tab twice a day) for Emma, it stopped. Yes I said it correctly. IT STOPPED. THANK YOU JESUS!
I increased slowly because it can cause loose stools and we certainly did not want any dehydration to occur.
On week three some stimming returned...two days later we discovered a red and sore throat. We cleared that up and Emma's stimming once again went away.
We are doing some cortisol testing on Emma to see if this is part of the "stim trigger" but for now we are relying on Bacopa's help.
Now to get a true assessment of Bacopa I left Emma completely alone for 2 weeks after getting to the correct dose. No ND program and no extra engagement. Essentially I put my little girl on an island and watched over her. I gave her every reason and opportunity to stim and it never came.
After living with a stimmer and suddenly not, it is just too good to be true. I contacted Andi and asked if this was really happening, is is truly gone? She, like me, knew how exhausting it was and she too was hypersensitive to stimming. But, she also saw the same results with Jett.
With all that said, Emma still does questionable auditory stuff. She will do some repetitive counting and singing and repeating the alphabet....but she is a 3 years old who is working on these things so I don't find it too alarming right now. It is age appropriate and I do not feel that it will delay cognition.
Is it right for your child, I have no idea. Will it work with your child, I honestly have no idea. Please do your own research and discover what support your child needs. Before we tried Bacopa I had to support Emma's whole body through diet. Please read Robin's post Supplements, Diet, Essential Oils & Lifestyle Changes, What Works For Us and Why to understand how we support the whole body. I also eliminated any possible medical triggers.
I got this in an email from our coach one day. I held onto it for this post and I have had it for some time. I promised myself that this post would not happen until I had a possible solution.
"Stimming goes away if you don't do it anymore." – from an NACD kid. Actually, it lessens gradually as their processing goes up and sensory issues get addressed, and they develop additional skills, and learn to read, develop conceptual thought and play appropriately etc. The progression is usually stimming all the time as a primary behavior, to stimming whenever they are not engaged, to stimming when stressed or unwell, to stimming as a secondary behavior, to stimming if there is a trigger etc. etc. you get the idea. I know how hard some of you are working on keeping your children engaged and I know that it often feels like you are not seeing things change quickly enough...but please persevere. The consistent hard work makes the difference.
To all of my stimmy kid's parents....I see you and I know how exhausting it is. A bad day for stimming is so stressful and tiring. Don't worry about a label. Stimming does not equal Autism. Stimming equals sensory play. Very common with typical and not so typical kids. With developmentally delayed kids we have to look at the world completely different. Just because your child does some of this does not mean they are in the red zone. But as their parent, recognize it and monitor it please.
Update:
8-22-14: Emma's stimming returned....sad for a moment then knew it was time to take the next step, we are not done with this journey. When stimming returned I looked at the thyroid first, once again I was right and her thyroid was not functioning at its best. We increased her dose and once again stimming stopped, but only for a few weeks. It has since returned and we are going to look a little deeper. We will be conducting some food allergy/sensitivity testing. We are going back to the gut-where is all starts and see if there is something that we are missing. Essential oils are helping decrease the stimming along with hippotherapy but I know that it is still there-which tells me something is still out of whack.
Update:
10-30-14: We have really been pushing sequential processing with Emmalin and are seeing positive results on the stimming. Seeing a lot more appropriate play and less stimming. Now, it is still hiding right around the corner and it is waiting to rear its ugly head but I am starting to see the light at the end of the tunnel......I hope. Will continue to update you with our progress.
Below is a description of sequential processing:
Parenting 101:
Processing, Behavior, and Maturity
Robert J. Doman, Jr.
Reprinted by permission of The NACD Foundation, Volume 20 No. 5, 2007 ©NACD
In my last article I introduced "sequential processing" and encouraged readers to find out how well you and those in your family can process information. I hope you all took advantage of the opportunity. If you didn't, you can still go to www.nacd.org and take the free memory test.
Over the years we have discovered that sequential processing, which is the brain's ability to process pieces of visual or auditory information in a sequence, normally develops in a predictable pattern as a child grows. As sequential processing develops so does the complexity of thought. A child's ability to think determines their ability to understand, learn and act. If anything interferes in the development of sequential processing, the child's ability to understand, learn and act will be affected in a number of ways.
The first seven to nine years of life provide the best window of opportunity to learn about the significance of sequential processing because sequential processing - particularly auditory sequential processing - has a lot to do with determining your child’s overall (or "global") level of maturity as well as their ability to pay attention and learn. When a child comes to us with a label of learning delays, behavior problems, trouble concentrating, or just being immature for their age, the child will almost always be found to display lower than normal sequential processing abilities. As we correct the delay in sequential processing by teaching the brain to process more pieces of information, we find many learning, behavior and attention deficit problems resolve without further intervention.
Sequential processing usually develops at the rate of one piece of information per year up until about seven to nine years of age. At that point, it tends to stop increasing without specific intervention. In young children, we can determine their processing level by looking at how many directions they can follow in a sequence. For example, a child who is between one and two should be able to follow a simple direction like, “touch your nose”, which amounts to processing one piece of information. With a child between ages two and three, you should be able to open a book and ask them, “Where is the horse and the dog?’ (two pieces of information). When they are three years old, they should be able to repeat three things in a series, such as “yellow, green, and red” (three pieces of information). As the child grows, their sequential processing should continue to advance by one piece of information per year, so that by age seven they are able to process at least seven pieces of visual or auditory information in a sequence.
Many of the typical challenges parents face in dealing with their little ones relate directly to the child's level of sequential processing. Up until two years old, or the point at which the child can process two pieces of information, they are very easy to get along with. Give them something to play with and they are happy; take it away and they will probably still be smiling because they will just redirect their attention from the object to you, processing one thing at a time. When they hit two, things get interesting because the thought process becomes “I want” or “Don’t want,” and that is the end of the thought because they can't think beyond two pieces of information at one time. Functionally this produces the “Terrible Twos” in which the child tantrums because they inevitably want something or don’t want something and cannot process a “but” or a “later.” When the child reaches three years old, you can begin to reason with them because they can process a third piece of information - including that important word “later.”
But children at a processing level of three are still rather challenging because they hit what we refer to as the “Lock and Block” stage. At the “Lock and Block” stage, the child can process the concept of “later” but cannot process well enough to think their way out of a situation they perceive as threatening in any way. If they perceive something as fun or okay, they are all smiles. But when faced with new situations, new people, or if you simply ask them to do something without using your friendly little kid voice, they may give you trouble. And once they have locked and blocked, forget it! But often, if you wait a few minutes and come back to them with the same request, they will be fine and comply without any difficulty. It all depends on their perception of threat. Around four years old, the brain is able to begin processing four pieces of information, and the child moves out of the Lock and Block stage and into a whole new set of behaviors that keep parents on their toes. And so the process goes year by year.
Dealing with little ones can be challenging, but the real challenges come when your seven or eight-year-old processes like a four or five-year-old and you start hearing things like, “Johnny is distractible,” or “Johnny isn’t following directions,” or, perhaps, "We should test Johnny for ADD.” The root of many developmental problems - from language delays to behavior and learning issues - lies in the fact that their sequential processing has not developed properly. The good news is that sequential processing can be increased fairly easily with the proper intervention.
Sources:
Sensory Play By Neurodevelopmentalists Marilee Nicoll Coots, B.A. and Cyndi Ringoen, B.S., B.A.,
www.littlegiantsteps.com
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