My Son With Autism Has A Beautiful Smile!

Often it’s said that people with autism don’t smile and don’t understand emotions. We know that to just not be true. Something people always tell us about our son is, “He has an awesome smile!” Really we don’t need to be told that. Its great they see the same things we do. He does have an awesome smile. He also has this infectious laughter and beautiful sense of humor too.

We have four children. Ranging in age from 17 to 5. Our third child Hunter was diagnosed with autism when he was three years old. Deep down I wasn’t surprised by the diagnosis because all the research had been bringing up the same diagnosis. At the time it was really hard for my husband to accept. I accepted the diagnosis easier. Probably because I poured myself and all my energy into finding quality therapy.

We were afraid of what the future would be like for our child. We had huge dreams for our son. With therapy and support of family and friends we finally realized that he still had an awesome future. We know he will do great things and affect many people in positive ways around him. Of that we have no doubt.

This last week end we played with water balloons. Our son had such fun and found humor in the whole game. Even making sure to get mommy because he quickly realized I was trying to stay dry. Already he has been asking, “Can we buy more water balloons?” and of course we will. It’s just great to see our son participate in an activity. It lets us see how far we’ve come. Really how far he has come!

In kindergarten he moved to a new elementary school. I was so worried that he might be bullied or not thrive in a new school. My worry was unfounded. He went into kindergarten and while he struggled academically he made friends and was able to interact with the other children. At one point we actually had to make sure the other kids let him try to do things on his own. I never would have thought that would be a concern that would happen.

Some things Hunter has loved doing for therapy has been equine (horse) therapy, extra speech therapy, and physical therapy as well. Hunter really showed his personality in equine therapy. Even showing off his skills when other kids were participating. When thinking of therapy make sure the people providing the service are trained and properly accredited.

Something else that helped him was social stories. Social stories visually explain a task or skill that need to be learned. We made a social story we could read on the IPad together for potty training. I saw a need for him to understand how to play with other children, and I created a play interaction story. I even made it my entire thesis project. It was just what he needed. Even though he still struggles from time to time with pushing or shoving he is doing so well and making lots of friends.

Yes, my son is academically behind but he can do so much. He is not bound by his Individual Education Program (IEP) to define who he is. Hunter visually excels and can do amazing things. If we have learned anything from these last few years? We must believe he can do great things. We see Hunter for what Hunter can do. We have taken great value in not comparing him with others.

He is his own person and every week surprises us with new achievements in areas we were once told he might not ever be able to do. I wouldn’t be shocked if someday he’s designing rockets or cars. My advice to parents on this journey is to seek out all therapy options. Do what works for your child. Also work with your pediatrician and therapist to create a great individual plan for your child.

Be your child’s advocate and never give up on them. Every child is unique and can do great things if we look at them as the person they are verses what everyone expects them to be. In our society that can be hard to do. I truly I believe each child is awesome. Hunter is awesome and your child is awesome too!


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Rebecca Batdorf is an author living with her family in Indiana. She is married with 4 children. She is a recent graduate from Indiana University Purdue University Fort Wayne (IPFW) with a degree in visual communication with a concentration in graphic design. For her thesis she created visual social stories for her son with autism. You can preview her social stories here, and buy Let’s Play on Amazon. 

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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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.

The Wisdom of Over 60,000 Parents of Children with Autism

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It’s been a few short years since we launched MyAutismTeam with just 30 parents in the San Francisco Bay Area.  Today, MyAutismTeam has grown to more than 60,000 parents, making it the largest social network in the world for autism parents.

At MyAutismTeam, we believe that if your child on autism spectrum, whether they are young toddlers or young adults, it should be easy for you to connect with and get perspective from other parents just like you.  You’re not alone and you don’t have to reinvent the wheel.

The infographic below represents just a sample of what you might learn from other parents on MyAutismTeam.

MyAutismTeam is a  social network for parents of children with autism. It's free to join.

It turns out that the most common therapies families have tried also tend to be the ones viewed as most useful by the parents (many of whom have tried dozens of different therapies).   Of course given the breadth of the autism spectrum, it is not surprising to see that the most common therapies sometimes differ based on the sub-diagnosis or specific development needs of the individual with autism.   On MyAutismTeam you can search for other parents whose children share similar development needs as yours, are the same age, same gender, and even those who might live nearby.    It’s great to connect with them and share experiences.

 

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Two Tips for Finding & Working With a Great Occupational Therapist for Autism

childMost parents of kids with autism constantly ask themselves, “Am I doing enough to help my child?”  And yet, thousands agree on a specific type of therapy that they feel has helped their child most: occupational therapy.  We’ve asked over 40,000 parents of kids with autism on MyAutismTeam “What therapies, if any, work best for your child?”  Out of all responses, the number one answer was occupational therapy (OT).

When we explored this area more with our parents to find out why OT was so useful, and how to pick the right OT for your child, two tips surfaced:
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Embracing the Positives & Exorcising the Negatives around Autism – One Dad’s Journey

The author’s twin boys at basketball.

In this guest blog post, Tom Wailgum, father of twin boys on the autism spectrum talks about how he and his wife have adjusted their communications with each other and with their boys to focus on the positive. – Eric

Never Never Never Never Never – by Tom Wailgum

One of the most challenging aspects of raising children on the autism spectrum is conquering the feelings of negativity that pervade everyday life. It can come from friends or family members. From co-workers. From the media. From strangers in the grocery store. From yourself. I know I’ve struggled with overcoming my own negativity while raising our twin sons, who are on the spectrum.
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Top 8 Autism Therapies – As Reported by Parents of Kids with Autism

Hippotherapy, or equine-assisted occupational therapy, can be therapeutic for many children with sensory processing disorders

(Originally posted as a guest blog on Autism Speaks)

Every parent of a child with autism asks themselves, “Am I doing enough to help my child?”  They look to doctors, specialists, and (particularly) other parents with kids just like theirs for ideas and for validation that they are on the right course.  With more therapies out there than there are hours in the week and dollars in the bank account / second mortgage to pursue them, parents are forced to prioritize.  So what are the “best” therapies out there?  Which ones work best for other kids just like yours?  We asked the world’s foremost experts – parents of kids with autism – that very question.   To be specific, we asked the parents on MyAutismTeam.com – a social network for more than 28,000 parents of individuals with autism – the following question: “What therapies, if any, worked best for your child”?   
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