The First Time I Realized My Nonverbal Autistic Child Was Communicating

 

This is a guest post for parents by Marci Lebowitz, OT and Autism Specialist.  

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Danelle and Oliva’s Breakthrough Moment
“The first time I realized my nonverbal child, Olivia, was trying to communicate with me I just lost it. It felt like every emotion I had ever experienced rushed through me all at once. I felt immense joy that I could now get a glimpse into her world that had been hidden away from me for so many years. But I also felt some level of guilt and regret that I hadn’t noticed earlier. I’m sharing my story here to hopefully help one or two of you parents of not-so-verbal children with autism have an experience similar to mine.

Screen Shot 2015-12-14 at 3.48.50 PMIn the beginning of my autism journey I was exhausted. I was frustrated, and like many of us, I was scrambling for answers. When I wasn’t reading every autism book I could get my hands on, I used any free moment to catch up on housework, emails and the hundreds of other daily tasks clamoring for my attention.

Unfortunately, I wasn’t spending much of my time being present with my child. When I wanted to occupy Oliva I would give her my iPad, her most prized possession. I knew it would keep her attention long enough for me to make some progress on whatever task I was wrestling with at the time. Her time on the iPad was mostly spent watching videos. Unbeknownst to me, this would be the key to us bonding and communicating.

One day when I finally felt like I could take a much needed breath, I sat down next to Olivia and watched one of the videos she had been playing that day like a broken record. It was about playing outside in the water. I don’t know how or why it struck me, but my intuition said that maybe she was playing the song for a reason. Maybe she longed for what the song was about, playing outside in the water.

So I grabbed her up and brought her outside to sit by our pool. I saw her eyes brighten in a way they never had before, and I felt her relax back in a big way. She knew that I got her message. Finally, someone understood her. All this time she had been playing me songs to send me messages, but I was too much of a nervous wreck to notice.

After I realized what was happening with her songs, our interactions became more frequent and joyful. We delighted in this new found medium for communicating what we had been trying to say to each other for so long. Even though to the outside world it didn’t look like a typical conversation, it felt more intense than any other interaction I’ve had with another person.

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What amazed me was the fact that when I joined her in her favorite activity, it ended up giving me the answers I was looking for on how to reach her. Our encounters led to more smiles exchanged, improved eye contact, and eventually other forms of intuitive and now verbal communication. To be honest, I felt embarrassed that it took me so long to figure it out. If I hadn’t taken the time to slow down, calm and catch my breath, I may have never received her messages.”

 

The First Step to Having a Communication Breakthrough

The above story is from my former client and good friend, Danelle Shouse, who is now an autism specialist herself. I had the honor of supporting Danelle and Olivia during their journey to discovering how to communicate. I believe one of the reasons Danelle was able to figure out how to bond so deeply with her child was because she learned how to communicate with Olivia on Oliva’s terms first. Before making this commitment Danelle was swept up in the busyness of life and felt lost in how to reach her child.

The first and most important step we worked on to help Oliva was to help her mother calm her own overactive mind and nervous system. When a parent learns to calm themselves it does wonders for both the parent and the autistic child. The reason calming so profoundly affects the child is because autistic children are like perfect tuning forks for the moods and emotions of their parents. The more stressed out the parent becomes, the more anxious the child will behave. In turn, the anxious child will then act out and make the parent even more stressed. And this mirroring cycle continues until the parent decides to calm.

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Once you stop trying to anticipate your child’s next meltdown, and instead turn your attention to calming yourself, your child will notice the shift in you. Your calmness will feel like a warm blanket to them. The safer they feel with you, the easier it will be for them to try and communicate with you in whatever way is possible for them.

When you approach your child calmly, this will allow you to decipher the communication clues your child is sending you with clarity. Your high-strung nerves can melt away into compassion, bringing a sense of peace to both you and your child. For a deeper look into the calming and communication methods I employed with Danelle and many others get my free eBook, Autism Simplified for Parents. It’s a quick and easy read with tons of useful, actionable information that will make your parenting life easier.

 


 

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Marci has been an Occupational Therapist for 28 years and an autism specialist for over a decade. During her expansive career, she has worked in schools, private outpatient practices, hospitals, a prison medical facility and skilled nursing facilities.

Known as “The Mary Poppins of Autism” she has developed effective behavioral management systems, sensory calming strategies and alternatives to physical restraints and seclusion.

She is a dynamic speaker and loves educating autism parents, extended families and professionals about the underlying causes of challenging behaviors; distinguishing between tantrums, sensory overload and meltdowns; and how to have fun with children with severe autism!  Find out more about how Marci supports autism parents and professionals at www.marcilebowitz.com.

Can You REALLY Tell the Difference Between A Tantrum and a Meltdown? Part 2

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This blog is part of a four-part support series for parents by Marci Lebowitz, OT and Autism Specialist.  Watch for Marci’s blogs to help you distinguish between tantrums and meltdowns, tips to manage tantrums and meltdowns and meltdown prevention tips.   Find out more about how Marci supports autism parents and professionals at www.marcilebowitz.com.

Can You REALLY Tell the Difference Between A Tantrum and a Meltdown?

One of the most widely discussed characteristics of autism is when your child becomes overwhelmed, inconsolable and totally out of control. For the unknowing, non-autistic on-looker, it can appear that your child behaves badly and probably in need of real parenting!

How wrong they are!

We are becoming aware that behind the challenges of autism, many of these children are highly intelligent, are masters at using this intelligence to manipulate situations and can use behavior to attempt to get their way.

tantrumHowever, could it be that not all episodes of screaming are the same? That they are not always trying to get their way?  I think that there are two distinctions.  The first are meltdowns that are caused by sensory overload and the second is willful tantrums.

The examples below may help to illustrate this distinction even better.

Olivia was sitting at her little dining room table her eating snack.  She wanted more, so she simply started to scream at the top of her lungs. Periodically she would turn around and check to see if her mother was watching.  She threw her bowl and banged her hands on the table.  When she took a break from that, she would check for her mother’s reaction, gauging to see if her mother was going to give her what she wanted without using her PECS.

On day, Olivia had not had enough sleep, she appeared to be getting sick, and she was not getting what she wanted.  I guess you know these sorts of days very well and you know what follows.  Olivia begins screaming at the top of her lungs and throwing things.  This escalates.   She has no regard for safety and complete disregard for her parent’s reaction.  No connection.  She is out of control, unsafe, inconsolable and checked out.

Which do you think is a tantrum and which is a meltdown?

girl-504315_1280This is the second in a series about how to understand and work with severely challenging autistic behaviors.  This post will help you to distinguish the differences between tantrums and meltdowns.

Believe it or not, it really is possible to tell the difference between a tantrum and a meltdown once you know what to look for!

Here’s how you can begin to distinguish the differences.

Temper Tantrums Defined:
A temper tantrum is very straightforward: the child does not get his or her own way and, as grandma would say, “pitches a fit.”

Qualities of Temper Tantrums
• A child having a tantrum will look occasionally to see if his or her behavior is getting a reaction.

• A child in the middle of a tantrum will take precautions to be sure they won’t get hurt.

• A child who throws a tantrum will attempt to use the social situation to his or her benefit.

• When the situation is resolved, the tantrum will end as suddenly as it began.

• A tantrum will give you the feeling that the child is in control, although he would like you to think he is not.

• A tantrum is thrown to achieve a specific goal and once the goal is met, things return to normal.

Fact
If you feel like you are being manipulated by a tantrum, you are! A tantrum is a power play by a person not mature enough to understand subtle politics. Hold your ground and remember who is in charge.

A temper tantrum in a non-autistic child is simpler to handle. Parents simply ignore the behavior and refuse to give the child what he is demanding. Tantrums usually result when a child makes a request to have or do something that the parent denies.

Upon hearing the parent’s “no,” the tantrum is used as a last-ditch effort.

Meltdowns
A meltdown is a loss of control due to sensory overload. It can begin as a tantrum and then escalate into a meltdown very rapidly. The child needs you to recognize this behavior and rein him back in as he is unable to do so. A child with autism in the middle of a meltdown desperately needs help to gain control.

Qualities Of A Meltdown
• The child does not look at you, nor care, if those around are reacting to the behavior.

• The children do not consider their own safety.

• The child has no interest or involvement in the social situation.

• Meltdowns continue as though they are moving under their own power.

• A meltdown conveys the feeling that no one is in control.

• A meltdown can occur because a specific want has not been met, the children becomes over stimulated, goes into full-blown sensory overload and cannot calm themselves.

• Meltdowns go on for extended time periods unless the caregiver or the child themselves knows how to take themselves out of sensory overload.


In order to know how to manage both of these types of situation, the adults need to understand how to distinguish between a tantrum and a meltdown, to have effective behavior management tools to deal with the situation and then additional skills and tools to help the autistic child gain sensory control and to work during the meltdown to bring the child safely and calmly back to being in control once more.

Tune in for the next blog post in this series where we’ll be discussing tips to manage tantrums and meltdowns!

Please feel free to comment below how this information has helped you understand how to distinguish between a tantrum and a meltdown.  I’d love to hear from you!     


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Join the social network for parents of children on the autism spectrum: MyAutismTeam.com.

PictureMarci has been an Occupational Therapist for 28 years and an autism specialist for over a decade. During her expansive career, she has worked in schools, private outpatient practices, hospitals, a prison medical facility and skilled nursing facilities.

Known as “The Mary Poppins of Autism” she has developed effective behavioral management systems, sensory calming strategies and alternatives to physical restraints and seclusion.

She is a dynamic speaker and loves educating autism parents, extended families and professionals about the underlying causes of challenging behaviors; distinguishing between tantrums, sensory overload and meltdowns; and how to have fun with children with severe autism!  Find out more about how Marci supports autism parents and professionals at www. marcilebowitz.com.

What Causes Meltdowns May Be Different Than You Think, Part 1

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This blog is part of a four-part support series for parents by Marci Lebowitz, OT and Autism Specialist.  Watch for Marci’s blogs to help you distinguish between tantrums and meltdowns, tips to manage tantrums and meltdowns and meltdown prevention tips.   Find out more about how Marci supports autism parents and professionals at www.marcilebowitz.com.


What Causes Meltdowns May Be Different Than You Think

For many parents, the very thought of taking your autistic child to the mall can stir up anxiety and brings up memories of previous experiences.  This can come from the concern about how others may react if you child has a meltdown and also evoke feelings of helplessness and shared pain for your child.  As a result, you may limit your treks out into the world because it is easier to stay out of the public view and in a calmer environment like home. Though meltdowns can easily happen at your home, somehow they feel more manageable in the safest environment.  The reality is that there are times when you have to go with your child to the mall and you are willing that this time it will go well.

Things can be okay and then wham, too much stimulus coming in so fast.  Too many lights, sounds, smells, emotions, touch, hot and stuffy air.   Simply too much of everything bombards them.   Because their heightened nervous and sensory system are constantly “switched on”, they seem to be constantly receiving too much input from the environment or some subtle, internal reaction. Each stimulus builds on the last and can create a feeling of overwhelming suffocation.  This is also known as sensory overload.

Although it may not be clear what specifically is causing the overload, you know the signs when your child is beginning to escalate.  You watch their reactions heighten and their anxiety rev up.  They may begin to yell, to cry or screech.  Then it comes on fast, the meltdown occurs.  Full-blown with maybe hitting, biting, kicking and screaming.  Their focus is gone and the outburst takes over.  Your baby, your child, your love.

What Can Cause These Extreme Reactions?

There is a link between poor breathing and heightened anxiety.   What will register as extreme anxiety for an autistic, may feel like simple fear to us.  Their fight and flight mechanism is running all the time. When caught in a constant feedback loop of fight or flight, these children have an extremely difficult time making accurate value judgements of situations.  They experience stimuli and circumstances as threatening, intrusive or painful.  Because of their exquisite sensitivity, they often feel that many people and situations are unpredictable and frightening.  Fight, flight or freeze becomes their primary option.

If you observe a child when they are in complete sensory overload or during a meltdown you may notice they are holding their breath.  They do not exhale and are only able to take tiny shallow inhalations, so over time there is more and more stale air in their body and less space to breathe in fresh air. They simply cannot breathe fully which I believe contributes to their panic and escalation of challenging behaviors. Some believe that the child may feel like they are suffocating which must be very terrifying for them.
Think about when you are anxious…   Do you notice your breath may become short, ragged or you may even hold your breath?   This is amplified for people with autism.

When a threatening situation ends, our bodies and breath should calm.  For the children because of their constant state of fight or flight, they may calm down a bit and take a deep breath at the end of a threatening situation, but it is usually from their chest, not from their diaphragm.  If you watch them closely, they are calmer but they never seem to fully calm down.  A telltale sign is that they put all their effort into inhaling, not exhaling. In efficient breathing the effort is on the exhalation in which the muscles relax and the inhalation is gentle and without effort.

In my decade of work as an Occupational Therapist with children with severe autism and aggression, I have consistently noticed these children breathe only from their upper chest, rarely do they breathe deeply from the diaphragm.  It is easier for us to see that they have poor core strength.  This is actually an indicator that the diaphragm is weak and does not work effectively.

Do You Know The Signs Of Upper Chest Breathing?

-Pressured speech or vocalizations.
-Shrill voice.
-Difficulties listening to others.
-Not present.
-Difficulties with focus, processing and memory.
-Absent, glazed look.
-Muscle tightness.
-Anxiety.
-Difficulties taking a breath.
-Difficulties pausing when talking.
-A clenched jaw.
-Poor Posture:  hunched or high guard.
-Inability to sit up straight.

Does this remind you of your child?

Other Causes of Sensory Overload  

There also may be severe, underlying or undetected medical conditions causing sensory overload including conditions like toothaches, stomach aches, seizures, earaches and headaches.   Medications or medication changes can also cause heightened reactions.  For many, particularly those that are non-verbal it is extremely difficult for them to communicate to us what they are experiencing.
Many but not all manifestations of underlying medical conditions also are present with compromised breathing.

Effective Respiration and Diaphragmatic Control Is Essential For:

◦ Strengthening the immune system, brain and gut.
◦ Reducing inflammation.
◦ Speech.
◦ Posture.
◦ A good nights sleep.
◦ Motor control.
◦ Emotional regulation.
◦ Ability to self-soothe.
◦ Processing, thinking, concentration and focus.
◦ Effective colon motility.
◦ Lymphatic drainage.
◦ Neural development.

Gentle Tips To Promote Breathing

I encourage you to examine your child’s diaphragm to see if you can detect movement.  You’ll see the belly go in and out while they are breathing.  Also, look at the chest.  If the rising and falling occurs only at the chest and not at the belly, this indicates that they are only upper chest breathing.  Look for where they exert their maximum effort.   Is it on the inhalation or the exhalation?

A simple thing you can do to begin to help open your child’s diaphragm is to gently place your (warm) hand on their belly with the intention to help them relax.  It is easier to do this when they are laying down.  I would recommend only doing this when they are in a calm.  Please do not attempt this when they are upset or melting down as this may not relax or calm them.  You don’t have to tell them to breathe, your gentle hand on their belly should help them to relax and their breathing may slow.  Simply hold your hand on their belly for two-three minutes and breathe yourself!  Bedtime or couch time is a really good time to try this.

straw-in-glassWe’ve been taught to focus on the inhale.  However, research shows that the part of the breath cycle that is most important for relaxation is the exhale.  Usually we tell people to inhale if they are upset to calm.  If they do not have good diaphragmatic control, a strong inhalation can make them feel more anxious as the chest can become tighter.  By getting them to exhale first, it creates more space for fresh air to be inhaled.

You want to gently exhale the stale air out of the lungs.  Try taking a very small, gentle inhale through your nose and blow out the air through your mouth.  See if this helps to relax your body.  You can do this with “low functioning” children by having them use a straw to breathe.  It is really difficult to take a hard inhale through a straw and much easier to exhale.


I’d love for you to share your thoughts with me.  Leave me a comment and let me know about your child’s breathing.  Do they have any movement in their diaphragm or is it all in their upper chest
?



 

 

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Join the social network for parents of children on the autism spectrum: MyAutismTeam.com.

PictureMarci has been an Occupational Therapist for 28 years and an autism specialist for over a decade. During her expansive career, she has worked in schools, private outpatient practices, hospitals, a prison medical facility and skilled nursing facilities.

Known as “The Mary Poppins of Autism” she has developed effective behavioral management systems, sensory calming strategies and alternatives to physical restraints and seclusion.

She is a dynamic speaker and loves educating autism parents, extended families and professionals about the underlying causes of challenging behaviors; distinguishing between tantrums, sensory overload and meltdowns; and how to have fun with children with severe autism!  Find out more about how Marci supports autism parents and professionals at www. marcilebowitz.com.