Giving a voice to children who otherwise might not be heard, everyday technology is opening doors for children on the Autism spectrum.
Nine-year-old Madalyn Simon loves helping her little brother Maysen explore his place in the world, through words.
“He’s just a nice person and he likes us and he’s funny,” said Madalyn.
But until a year ago, Madalyn and the rest of the family didn’t know Maysen’s humor.
The four-year-old lives with autism, and in Maysen’s case, he’s not verbal in the way most of us understand.
“When you didn’t know what he was saying, how did you feel?” asked Elise Preston with TODAY’S TMJ-4.
“I felt bad because we didn’t know what he wanted. It’s just hard to say stuff that other people can’t understand you and say what you want,” said Madalyn.
“The words weren’t coming for him. We didn’t even know when he was hungry. He would do a lot of pointing at things,” said Maysen’s mom, Jennifer Simon.
When pointing didn’t work, “there would be temper tantrums and lots of cries,” said Simon.
Feeling frustrated and helpless, Simon did a lot of research to see how she could talk to her child. She found not only options of using tech products like tablets, but she also discovered local programs to help pay for the expensive devices and software.
“It turned him into a little boy and he could talk about his feelings,” said Simon.
“Communication is the number one thing we can do for children who are nonverbal to reduce problem behaviors,” said Dr. Kathleen Koth with Children’s Hospital of Wisconsin.
According to Koth, Maysen is just one of countless children in our area who use these every day products to be part of the world.
Researchers are trying to determine which ones work best.
“The technology comes out faster than we as professionals keep up with,” said Koth.
So in many cases, families are using products to see what works for them.
“No two kids are alike, no two kids process the same way, no two kids communicate the same way. So it really is learning each child and how they experience the world and what we do to work with that,” said Koth.
This works for Maysen.
“Everyday, I hope for words to come out, that’s just being a mom,” said Simon.
But for this mom… she still loves hearing what her child is “thinking, needing and feeling,” said Simon.
“I hear so many kids say I love you to their moms or their families. He isn’t able to say that to us. But we have so many ways to communicate we don’t need the words, we know.
Dr. Koth says the biggest problem local families have with using tablets and other devices, is the access to them. They are expensive.
The area Kiwanis Club does provide grants to help families with the cost.
Young children love playing with sand and water and find both relaxing.
It cannot be emphasised enough though that when children are playing with water they need to be fully supervised as they can drown even in a small amount of water.
Our aim is to suggest activities and to explain how children can learn from having the chance to play and experiment with sand and water.
You can provide opportunities for your child to play with water in the bath, in the kitchen sink, in a washing up bowl or baby’s bath or weather permitting, in a paddling pool. You need to make sure there is no danger of a burn from a hot tap.
This type of play is likely to lead to some mess, but your child should not feel under pressure to keep dry or not make a mess. It is better to try to encourage children to limit the mess and for them to help clear up afterwards.
When playing with water children learn:
- to improve their skill at pouring by developing their arm and hand muscles
- how water behaves when you pour it from one container to another
- how water feels and that it can be squirted
- objects either float or sink
- that containers hold the most or least
- that water leaks from containers with holes
- hand eye co-ordination
It is not necessary to buy special toys for water play. Here are some suggestions of everyday items which children enjoy playing with and which provide opportunities to explore the properties of water.
Things to Play with in Water
- old teapot
- toy buckets
- jugs and containers
- small watering can
- hollow ball
- plastic bottles
Floating and Sinking
Let your child experiment with diffferent objects to see which float or sink.
Here are some suggestions:
Ice cubes, spoons made of metal, plastic or wood, wooden bricks, smooth twigs, a cork, washed polystyrene food trays, a toy boat and paper cake cases.
Situations such as letting your child bath a doll can create opportunities to discuss caring for babies and the need for personal hygiene.
Another activity is washing and drying dolls’ clothes. Not only do children enjoy the imaginative play, but they experience the science involved in cleaning and drying fabrics.
Ask your child to predict what will happen to the wet fabrics. Discussion can extend vocabulary and enhance your child’s communication skills. The activities also help to develop manipulative skills.
Children should always be supervised by an adult when playing in or with water.
An unconventional approach has successfully reversed deficits in social behaviors associated with autism spectrum disorders (ASD) in genetic, environmental and idiopathic mouse models of the condition. Researchers at Baylor College of Medicine report in the journal Neuron that administration of the bacterium Lactobacillus reuteri could lead to specific changes in the brain that reverse social deficits through a mechanism that involves the vagus nerve and the oxytocin-dopamine reward system. These findings hold hope for the development of novel therapies for neurological disorders by modulating specific microbes in the gut.
“In 2016, we discovered in mice that the offspring of mothers fed a high-fat diet had social deficits and changes in their gut microbiome characterized by a reduction in the abundance of the bacterium L. reuteri. More importantly, restoring L. reuteri levels in the offspring reversed their social deficits,” said corresponding author Dr. Mauro Costa-Mattioli, professor and Cullen Foundation Endowed Chair of Neuroscience and director of the Memory and Brain Research Center at Baylor College of Medicine.”However, this model of ASD represents only one of the numerous subyacent mechanisms of the condition. Therefore, we decided to investigate whether our findings would apply to other models with different origins.”
The causes of ASD could be of genetic, environmental or idiopathic origin, Costa-Mattioli explains, and there are mouse models mimicking each of these condition. So, the researchers investigated whether L. reuteri could also rescue social behavior in other mouse models that represent different causes of ASD. Surprisingly, they discovered that, indeed, L. reuteri can trigger the recovery of social behaviors in all the models they tested, suggesting that this microbial-based approach could improve social behavior in a wider subset of ASD.
The researchers then applied multiple technical approaches to explore the mechanism that mediates L. reuteri‘s rescue of social behavior in a mouse model of ASD.”We discovered that L. reuteri promotes social behavior via the vagus nerve, which bidirectionally connects the gut and the brain,” said first author Dr. Martina Sgritta, a postdoctoral associate in the Costa-Mattioli lab.
It is known that when the vagus nerve is active, it releases oxytocin, a hormone that promotes social interaction. Oxytocin is released into the reward areas of the brain where it binds to molecules called oxytocin receptors, triggering ‘social reward.’ Sgritta and colleagues tested whether disrupting the vagus connection between the gut and the brain or interfering with oxytocin binding to its receptors would affect L. reuteri‘s ability to restore social behaviors in mouse models of ASD.”Interestingly, we found that when the vagus nerve connecting the brain and the gut was severed, L. reuteri could not restore social behavior in ASD mice,” Sgritta said. “In addition, when we genetically engineered mice to lack oxytocin receptors in the reward neurons or blocked the receptors with specific drugs, L. reuteri also could not restore social behaviors in the ASD mice.”
“We have begun to decipher the mechanism by which a gut microbe modulates brain function and behaviors. This could be key in the development of new more effective therapies,” Costa-Mattioli said. “Indeed, we think that our findings have strengthened the rather uncoventional idea that it might be possible to modulate specific behavior through the gut microbiome using select bacterial strains.”
Collectively, the findings described here could radically change the way we think about ASD and its treatment and could have a profound influence in the lives of people with this and related disorders.
Dr. Mauro Costa-Mattioli. Credit: Baylor College of Medicine
Season’s greetings, friends and family!
I am happy to report the Cariello family had a wonderful 2018. My husband Joe and I are doing well, and all five kids are happy, healthy, and active.
We now have three teenage boys in the house. They eat like you can’t even imagine.
The other day I snapped at my 15-year old for eating an apple. That’s right, ladies and gentlemen, he was eating an apple and I got annoyed. It was an all-time parenting low for me, and I assure you, I have had plenty of parenting lows.
The thing is, I had already bought two dozen apples that week, and we were down to three, and I didn’t want to go back to the grocery store for what felt like the hundredth time.
Our daughter, Rose, is eleven. She is in sixth grade. She hates changing for gym class. I worry about her constantly.
Our youngest, Henry, is nine-almost-ten. He is wonderful! So spirited and full of life.
Actually, he can be a little, uh, bossy and lately he’s obsessed with Star Wars and the phrase “oppositional defiance disorder” has been bandied about, but I’ve pretty much ignored it because I am sick to death of labels.
As you may remember, our second son Jack has autism.
It’s going great! He’s making so much progress.
Actually, it’s not going that great.
There is not much progress.
He is obsessed with Mary Poppins and he won’t stop telling me he prefers Pepsi products over Coke and he talks to himself constantly.
If I’m being honest, lately I dread the afternoons when he’s home from school because it’s so hard to keep him busy. He basically wanders around the house while I drive my 13-year old to basketball and my oldest son to his stuff and try to get Henry to work on his math facts.
My 14-year old son has absolutely zero interests and this depresses me more than I can say.
There is no one to blame here, can you see that?
I have tried blaming him, believe me. I have tried telling him to stop talking about soda over and over and it doesn’t work.
I have tried blaming autism.
Nothing changes. Nothing is changing.
He is not getting any better.
Some days, it actually feels like he is getting worse.
We are running out of time.
It is a slow, gradual process, this spectrum disorder. It’s kind of like chipping through a glacier with your bare hands. It’s cold, and hard, and lonely.
I say he has autism about fifteen times a day.
I say it when we have an electrician to the house to fix the lights on the patio and he says hello to Jack and Jack doesn’t answer him or even pick up his head.
Oh, sorry. He has autism. Jack! Jack, say hello.
I say it to the server in Applebee’s when he asks Jack how he wants his burger-with-no-lettuce-or-tomato-or-pickle cooked and he says he wants it cooked on the stove.
Oh! He has autism. Jack, tell him you’d like it cooked medium.
I say it on the phone whenever I have to make an appointment for the eye doctor, or a new specialist, or a haircut.
I just want to let you know, he has autism.
I often ask myself how something so precious and reducible and diagnostic can be so complicated.
He has autism.
He is rigid.
He is literal.
He is very, very anxious.
He hates loud noises, and he uses self-stimulation, or stimming, to regulate his body. Once his body is regulated, he is better able to take in information and process it. This involves a lot of jumping.
I mean, that doesn’t seem so hard, right? Just let him keep his schedule and wear headphones when we see fireworks on the Fourth of July and give him room to move his body.
But it is. It is hard.
It’s hard because at the same time I give him room to move, I have to consider how to change him—how to help him learn to control the jumping and tolerate unexpected sound and be flexible if dinner is ten minutes later than usual.
It’s hard because his anxiety is so bad, interferes with his life so we have to give him medicine every night.
I know how most of you feel about long-term medication and children. I have sat around enough holiday tables and listened to the argument about how medicine is taking the easy way out and parents should just spend more time with their kids and all that jazz.
But, dear family, if you just lived with this child for twenty-four hours—one single day—you would see the way anxiety catches his breath like a fragile bird inside of a cage. I know you would change your mind. Like me, you would do anything to help free him from the ties that bind his spirit to the gilded bars of fear.
I guess the question is, do I help him fit into my world, or join him in his?
He loves Christmas. He knows Santa isn’t real but he says he believes anyway.
Lately it seems like my kitchen is never clean. Something is always sitting in the bottom of the sink—a knife smeared with peanut butter, a bowl with milk and Rice Krispies stuck around the rim, or a plate with last night’s leftovers crusted to the bottom. It drives me nuts.
I have caught myself screaming at my kids for something as benign as a cup left on the counter. And the whole time I am screaming, I am thinking about how much I love them and why am I screaming about this is so stupid I only have a few years left with these precious human beings.
Or do I?
Do I actually have a lifetime with autism and this tall boy of mine? Do I have a lifetime of peanut-butter knives in the sink and crumbs on the table?
I am overcome with love for them. I want to hug them until our breath is gone and remind them I am so proud of who they are and remind them to use their acne soap.
It’s never really about the cup, is it?
In this tangle of motherhood and teenagers and autism, it is about broken dreams and a conclusion to childhood and new hope and forgiveness.
I guess you could say my day contains a thousand little hurts, and countless surprises, and endless rays of sunshine contrasted against a cloudy backdrop of disappointment.
This is life.
Life is hard.
Life is complicated.
Life is good.
I think the answer is both. About the world thing. I have to do both. I have to fit him into mine and join him in his.
I have never liked jazz.
Wishing you a magical holiday season full of clean sinks, rays of sunshine, and as many apples as you can eat.
The Cariello Family
Researchers have discovered how immune cells triggered by recurrent Strep A infections enter the brain, cause inflammation, and may lead to autoimmune neuropsychiatric disorders in children, including PANDAS. Children with PANDAS exhibit high levels of anxiety, motor and vocal tics, obsessive-compulsive behaviors and a host of other symptoms that often appear “out of the blue” or increase dramatically, seemingly overnight.Their study found that immune cells reach the brain by traveling along neurons that originate from the nasal cavity.
This study explains, for the first time, exactly how upper respiratory infections can trigger both physical and neuropsychiatric symptoms.
According to the study’s co-leader, Dritan Agalliu, PhD, at Columbia University Medical Center, the Strep A bacterial cell wall contains molecules similar to those found in human heart, kidney, or brain tissue. These “mimicking” molecules are recognized by the immune system, which responds by producing protective antibodies. But because of this molecular mimicry, the antibodies react not only to the bacteria but also to the body’s own tissues. The molecular mimicry process has been well researched by others. But previously, scientists didn’t understand how these autoantibodies would gain access to the brain, because brain vessels form an extremely tight blood-brain barrier. This study answers that question.
Researches have known that recurrent Strep A infections trigger the production of immune cells known as Th17 cells, a type of helper T cell, in the nasal cavity. But it was unclear how these Th17 cells lead to brain inflammation and symptoms such as those seen in children with PANDAS. Through this study, Drs. Agalliu and colleagues found that bacterial-specific Th17 cells move along the surface of olfactory, or odor-sensing, axons that extend from the nasal cavity through the cribriform plate, a sieve-like bone that separates the nasal cavity from the brain. From there, the cells reach the olfactory bulb in the brain, which processes information about odors. The Th17 cells break down the blood-brain barrier and enter the brain,, allowing autoantibodies and additional Th17 cells to enter the brain, causing neuroinflammation.
In addition to illustrating how PANDAS occurs, the study also validated some of the experiences many parents have had regarding their PANDAS children:
- Strep A is not the only trigger – Parents have often reported that infections other than Strep A seem to trigger PANDAS symptoms. This feedback was so abundant that researchers proposed making PANDAS a sub-set of a new, larger category called PANS – Pediatric Acute Onset Neuropsychiatric Syndrome. Unlike PANDAS, PANS does not associate the onset of symptoms specifically to a Strep A infection. Dr. Agalliu’s study shows that Th17 cells persist in the brain for at least 56 days after initial infection, even when nasal tissues no longer show signs of an active infection. “Several other bacterial and viral pathogens, including influenza virus, mycoplasma and Staphylococcus aureus (nasal staph infections) induce robust Th17 responses and could also play a role in an exacerbation of behavioral symptoms in children with PANDAS if autoantibody levels are primed by previous (Strep A) infections.” (pg 11 of article).
- Creating a Feeling of Safety Is Critical – The amygdala, the part of the brain largely responsible for the “fight or flight” response, is directly affected by the neuroinflammation caused by the Th17 migration described in this study. Previous research has focused more on the basal ganglia’s role. By appreciating the primal role the amygdala plays in emotional and social health, cognitive behavior therapies that focus on making a child feel safe might bring calm to a child in crisis.
- Insights Into other Autoimmune Diseases – This study shows evidence of crosstalk between the central nervous system and the immune system, which may help in the understanding of other autoimmune diseases. As other recent studies are now finding, common bacterial and viral infections may trigger a cascade of signaling and inflammation that lead to autoimmune responses in diseases such as Lupus and eczema. Looking for persistent infections and looking for ways to strengthen a compromised blood-brain barrier may hold promise for new treatments.
The findings in this study may lead will hopefully put an end to the “controversy” surrounding this illness.
Adapted from a press release by Columbia University Medical Center
I hear it all the time.
Every doctor, every therapist, every educator…
At some point in discussing my youngest son’s learning differences and special needs, every expert has made the same generalized recommendation, with varying degrees of concern and judgement.
He needs structure.
For a child with his level of differences, he needs structure to know that he can depend on the routine, even when he can’t depend on his own mind and body.
If he had more structure, you might not being seeing the increasing anxiety at home.
Are you sure you can provide the structure he needs outside of a school environment?
On my worst days, I want to respond to these types of statements with a few of my own.
Really, I have never thought of that?
Wow, I have never heard that before in all 12 years of dealing with this. You’re a genius.
Good idea – let’s put him back into a special education classroom and see what happens to his mental health and chronic health condition. I’m sure the structured environment will more than make up for the bullying, the lack of IEP compliance, less individualized attention, lack of understanding of his high IQ and documented decrease in self image and esteem.
I may want to say these things, but I don’t. Most days, I agree and then try to communicate the hardest part of the “provide structure” recommendation –
Sometimes, the child that requires structure is the one that fights it the most.
This is one of the most challenging things aspects of our lives right now.
I know my son needs some structure and consistency, yet he resists every single attempt we make to re-establish it.
Part of it is that we got so completely out of routine with his recent hospital stay. Most of it is that even under the best circumstances, he tends to do all that he can to resist and defy scheduled expectations. Call it his creative, free-flowing side. Call it oppositional behavior. Call it being spoiled.
It doesn’t matter what you call it – it’s reality and it’s a constant need.
When The Child Who Needs Structure Fights It The Most
Over the course of the past few years, especially since my son’s exposure to the daily structure of a public school option last fall, I have learned a few things that help get us back on track. No matter how much my son resists the structured (not necessarily super scheduled, but definitely routine driven and predictiable) environment he actually craves, the following has helped us both maintain a basic flow to our day.
My Routine Matters
This is probably the number one tip that I have in regards to creating structure for a child – Create your own structured day and routines first.
It may seem simple, but the truth is, when my son is experiencing chaos day in and day out, I tend to get incredibly chaotic as well. I feel defeated and that defeat affects my own daily routines.
If I want to help my son relax into a more structured the day, I have learned that the first thing I need to do is address my own. This means a structured morning routine, daily non-negotiables for housekeeping, and a general plan for our homeschool time.
Projects and Activities Help
No matter how badly our day is going, one of the surest ways to get my son engaged and back on track is with a hands-on project or activity. Because of this, I have a few planned activities every week, and employ them on days when my son is struggling to follow our rhythm and routine. These projects typically take the place of a portion of our traditional homeschool work, and I find they allow him to transition back into what we have planned (much better than he does when I lose it and start making demands).
Get The Day Back
Mom Confession: When the day starts to go badly, I tend to want to give up in defeat. I’m tired. He’s had such a hard time lately. There are so many reasons to just let the child be.
While all of this is true, it does not help my son to just allow him to watch seven episodes of Spongebob on the couch – even if that is what he might naturally be inclined to do – and here’s why. When he does just sit, it gets his sensory system out of whack. When the sensory input (or lack there of) is uncomfortable, his anxiety increases. When his anxiety increases, he starts to panic. When he starts to panic, a meltdown is soon to follow.
So giving up isn’t really an option. The best choice for all of us is to find ways to get the day back on track.
Turn on an audio book.
Go for a drive.
Bounce on the trampoline.
Take the dog for a walk.
Play at the park.
These are all simple strategies that help us seamlessly transition back into our routine.
This has been and continues to be a focus and constant work in progress for me and for my son.
Thank you for welcoming my son into your classroom with open arms.
Thank you for wanting to teach him even though his learning doesn’t fit into a standardized box.
Thank you for celebrating all of the amazing things he brings to your classroom that would otherwise not be there.
You, teacher, are setting the tone for all of your students to follow. It is you that makes an inclusive classroom work.
Thank you for having patience when he took longer to transition into the routine of your classroom and was slower to show you all that he is able to do. I imagine you hoped to hear your name from my son’s sweet lips much sooner than you did.
Thank you for never giving up hope and for having the patience and understanding that he will do all things in his own time.
Thank you for setting high expectations and expecting more from my son than many others who define him solely by his diagnosis. He is an individual first, thank you for taking the time to get to know every part of who he is. I noticed, on the first day of school, how you saw right past his diagnosis and into a world of endless possibilities for growth.
Thank you for caring about my son with your whole heart and for wanting to learn about how to best support his learning needs. I love seeing how excited you are when he meets his goals, both big and small.
Thank you for trusting that I know my son best and listening to my suggestions. I know it can’t be easy when you hear one thing from me and see another in your classroom. I appreciate your patience and unwavering belief in me as a mom.
Thank you for the hours you spend on the telephone with me.
Thank you for using a reassuring tone when you said, “It is going to be OK.” Secretly, I have moments that I doubt my husband and I are doing the “right” thing for our son and that everything is, in fact, going to be OK. Regardless of how many times I hear from my family or friends, it is you, teacher, that I so desperately need that reassurance from.
Please know that I see you working harder and putting in more hours than you would otherwise so that you can manage your inclusive classroom well. I never take your willingness to do extra for granted. I understand that students like my son require teachers to have extra flexibility, patience and problem-solving skills.
When I look at you, teacher, I see a multitasking ninja with a heart of gold.
General education teachers that embrace inclusion are opening so many doors, not only for the students being included, but for all students in their classrooms. Without teachers that know and embrace the value that all students bring to their classroom, inclusive education is not possible. When students with and without disabilities grow-up learning together, they become adults that work well together.
Thank you, teacher; you are changing lives and the future of the world!