malamapono

10 Tips for Creating a Supportive Environment for Children with Autism

Mon, 30 Sep 2024 23:41:15 GMT

Each child has their own learning needs, let's discover them together!

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Early Intervention for Children with Autism: A Pathway to Support and Success

Mon, 15 Jul 2024 20:15:00 GMT

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Early intervention is a crucial factor in improving outcomes for children with autism spectrum disorder (ASD). We recognize the profound impact that timely and comprehensive support can have on a child’s development. Our commitment to providing full-service autism support encompasses evidence-based practices that prioritize early intervention to empower children and their families.

What Is Early Intervention?

Early intervention simply refers to the specialized services and supports designed to address the unique needs of young children with autism. These interventions are tailored to enhance development across various domains, including communication, social skills, behavior management, and daily living activities. At Malama Pono Autism Center, our team of experienced professionals utilizes evidence-based approaches to create individualized treatment plans that maximize each child’s potential.

Why is Early Intervention So Important?

1. Developmental Progress – Early intervention can lead to significant improvements in a child’s development, particularly in areas such as communication skills, social interactions, and adaptive behaviors. By starting intervention early, children can build a strong foundation for future learning and independence.

2. Family Involvement and Support – Early intervention programs at Malama Pono Autism Center emphasize the importance of family involvement. We provide resources, training, and support to empower families in understanding and participating in their child’s therapy. Strengthening family dynamics and support networks is integral to the success of early intervention efforts.

3. Behavioral Management – Addressing challenging behaviors early on through evidence-based practices like Applied Behavior Analysis (ABA) can significantly improve outcomes for children with autism. ABA focuses on reinforcing positive behaviors and teaching new skills in structured, goal-oriented sessions.

4. Community Integration – Early intervention promotes inclusion and prepares children for successful participation in community settings, such as schools, recreational activities, and social events. By fostering social skills and independence early in life, children with autism can thrive in diverse environments.

Our Approach to Early Intervention in Hawaii

At Malama Pono Autism Center, we are dedicated to serving the autism community in Hawaii with compassionate and effective care. Our comprehensive autism therapy services include Occupational Therapy, Speech Therapy, ABA therapy, Assessment and Diagnostic services and more, all tailored to meet the unique needs of each child and family. We understand the importance of early intervention as a cornerstone of our full-service autism support approach.

Our staff understands when you have a child with learning differences, especially a child who may not communicate effectively, it is important to be able to trust the people who will care for your family member. We take this responsibility seriously and so does the Behavioral Health Center of Excellence. Learn more about our accreditation, and our commitment to serving families on Oahu and Maui.

Get Started

Early intervention is not just beneficial—it’s essential for children with autism to reach their full potential. By accessing early intervention services at Malama Pono, families in Hawaii can provide their children with the support and tools they need to thrive. We are committed to implementing evidence-based practices and personalized care to ensure positive outcomes for every child we serve.

If you’re seeking early intervention services for a child with autism in Hawaii, Malama Pono Autism Center is here to help. Contact us today at info@mpacfamily.com to learn more about our programs, meet our dedicated team, and begin your journey toward a brighter future.

Discover the Benefits of Occupational Therapy for Children with Autism

Mon, 01 Jul 2024 20:00:33 GMT

Occupational Therapy at Malama Pono

Navigating life with autism can present unique challenges for children and their families. We understand the importance of comprehensive care and support tailored to the individual needs of each child. One of the cornerstones of our full-service autism support is Occupational Therapy (OT), a vital component in improving the quality of life for children with autism spectrum disorders (ASD).

What is Occupational Therapy?

Occupational Therapy focuses on helping individuals develop the skills needed for daily living and social interactions. For children with autism, this therapy aims to enhance their ability to participate in activities at home, school, and in the community. At Malama Pono Autism Center, our team of dedicated professionals utilizes evidence-based practices to ensure each child receives personalized care that aligns with their developmental goals.

Occupational therapists evaluate sensory, motor, cognitive, social, and communication skills of children with autism that are related to their participation in everyday life activities. Particular emphasis is placed on assessing sensory motor, emotional regulation, social relationship, and self-advocacy skills with the aim of facilitating full inclusion within the community.

How Occupational Therapy Benefits Children with Autism

Because of their expertise in activity and environmental analysis, occupational therapy practitioners are particularly skilled in using evidence-based strategies to address self-regulation and sensory needs, adaptive skills, motor development, mental health, social participation, and daily life skills.

Sensory Integration: Many children with autism experience sensory processing issues, where they may be over-sensitive or under-sensitive to particular touches, smells, or sounds. Occupational therapists at Malama Pono help children regulate sensory input, improving their ability to engage in activities without being overwhelmed.
Fine and Gross Motor Skills: OT interventions target the development of fine motor skills (like writing or buttoning clothes) and gross motor skills (such as balance and coordination). Strengthening these skills enhances a child's independence and participation in daily activities.
Social Skills Development: Through structured activities and play-based therapies, occupational therapy promotes social interaction and communication skills. This helps children with autism build relationships and navigate social situations more effectively.
Daily Living Skills: Occupational therapists work with children to develop essential life skills such as self-care routines, meal preparation, and organization. These skills foster independence and self-confidence, enabling children to function more autonomously.

Our Commitment to the Autism Community in Hawaii

Malama Pono Autism Center is dedicated to serving the autism community in Hawaii with compassion and expertise. With clinics on both Oahu and Maui, we are one of the leading autism care providers in Hawaii. Our comprehensive autism therapy services encompass not only Occupational Therapy but also Speech Therapy, Applied Behavior Analysis (ABA), and family support programs. We understand the importance of a holistic approach to autism care, and our team works collaboratively to create individualized treatment plans that meet the unique needs of each child and family.

Contact Malama Pono for Occupational Therapy or Assessments

Occupational Therapy plays a crucial role in the multidisciplinary approach to supporting children with autism. At Malama Pono Autism Center, we integrate evidence-based practices into our therapy services to ensure positive outcomes for our young clients. If you're seeking specialized care for a child with autism in Hawaii, consider MPAC for comprehensive, compassionate, and effective support.

For more information about our services and to schedule a consultation, visit our website www.malamaponoautism.com or email us: info@mpacfamily.com. Together, we can empower children with autism to thrive and reach their full potential.

Navigating School and Education Options for Children with Autism

Mon, 13 May 2024 22:53:41 GMT

End of the school year? Not for parents seeking special education.

End of the school year? When you have a child with special needs, the end of the school year is the start of planning for next year. Navigating education options for any child can be a complex and personal process that requires careful consideration. But choosing a school or learning path for children with autism can feel extra overwhelming. At Malama Pono we pride ourselves on going beyond the basics in autism care – including family support for autism. This article is meant to be a resource for beginners who are just getting started on their journey. The following steps should help you get organized and feel more confident, but please reach out and schedule an appointment with our staff if you have more questions or need additional guidance as you navigate education options.

Navigating School and Education Options for Children with Autism:

1. Understand Your Child's Needs

This one may feel obvious, but it’s a great place to start! Each child with autism is unique, with their own strengths, challenges, and learning styles. Before exploring education options, explore your child's specific needs, preferences, and abilities. Consider factors such as communication skills, sensory sensitivities, academic strengths, and social interactions. Evaluate what level of support in the classroom your child may need to be successful. Assess where your child’s biggest support needs occur: Are they academic based or behavioral based or a little of both? These will all help you decide which schooling option can best support your child’s needs. Remember: There is no “one size fits all” in education.

2. Research Educational Approaches

There are many approaches and philosophies to education in general, and these only become more varied when you consider autism. General education classrooms may expect your child to be successful with minimal accommodations or support. Self-contained classrooms may be completely designed for students with autism or unique learning needs and there are also many integrated or inclusive classroom models that are created to meet the needs of both typical students and students with autism. Understanding your child’s unique needs as discussed above will help you understand what educational model will be best.

3. Explore Special Education Services

Public schools can be a great resource as well, but often the staff to child ratio is much higher and you will need to be intentional about seeking out support for your child’s needs and ensuring those needs are met. Federal regulations, often referred to as FAPE (Free Appropriate Public Education), place certain requirements on public schools to meet the needs of your student in the classroom. More information can be found through the US Department of Education or contacting your local school district to learn about special education services your child may be entitled to, such as Individualized Education Programs (IEP) or 504 Plans. While FAPE provides certain rights to your child in the educational system, you often need to make yourself aware of these rights and advocate on your child's behalf. Many public school systems have limited staff and resources and those families who advocate are more likely to receive the support they are entitled to.

4. Consider Specialized Schools

Depending on your child's needs and preferences, you may explore specialized schools that focus specifically on educating children with autism spectrum disorder (ASD). These schools often offer smaller class sizes, specialized teaching methods, and a supportive environment tailored to the needs of children with autism.

For many children with autism their needs are a combination of academic and behavioral. In a more specialized environment children can learn the behavioral skills they need to be prepared to thrive in both school and life!

5. Visit Schools and Programs

If possible, visit prospective schools and programs to observe classrooms, meet teachers and staff, and assess the learning environment. Note factors such as class size, teacher-student ratio, sensory accommodations, and opportunities for socialization.

If your child is preschool aged, Malama Pono has a therapeutic program designed specifically for children on the spectrum. The KALO preschool program is not an academic school but rather an intensive behavioral program that models what a classroom would look like. In this more naturalistic environment children can learn the behavioral skills they need to be prepared to enter an academic environment such as attending to a teacher, managing their bodies and behavior around other children, developing social skills, transitioning between activities, and working more independently. In addition to the KALO Preschool Readiness program at Malama Pono, their are other programs in Hawai'i and on the mainland for older learners as well.

Our KALO preschool program is open to new admissions on Oahu and Maui!

6. Consult with Professionals

Seek guidance and advice from professionals who specialize in autism – such as pediatricians, psychologists, speech therapists, and special education advocates. They can provide valuable insights, recommendations, and resources to support your decision-making process.

The Hawai'i Disability Rights Center is one such local resource https://hawaiidisabilityrights.org/

7. Consider Inclusive Settings

Inclusive education settings, where children with autism learn alongside typically developing peers, can offer valuable opportunities for social interaction, peer modeling, and academic growth. Explore inclusive education options within mainstream schools and assess their inclusivity, support services, and accommodations.

8. Evaluate Financial Considerations

Consider the financial aspects of different education options, including tuition costs, therapy expenses, transportation, and other related expenses. The truth is, some educational options can be cost-prohibitive, but if they aren’t in your budget there may be other options. Don’t forget to explore funding options, such as scholarships, grants, or public funding for special education services. While the process can be frustrating, persistence and continued searching will help you provide your child access to the best education options available for them.

9. Collaborate with School Personnel

Once you've selected an educational setting for your child, establish open communication and collaboration with school personnel, including teachers, therapists, and administrators. Work together to develop and implement individualized educational plans that address your child's unique needs and goals.

10. Monitor Progress and Adjust as Needed

Regularly monitor your child's progress in their chosen educational setting and be prepared to make adjustments as needed. Stay informed about your child's rights, advocate for their needs, and remain actively involved in their educational journey. And don’t forget to seek out family support for autism as well. You’ll want community and support as you navigate this new world.

Remember that finding the right educational setting for a child with autism may require time, patience, and ongoing collaboration between parents, educators, and professionals. Trust your instincts, seek support when needed, and prioritize your child's individual needs and well-being throughout the process.

Maui Autism Services: MPAC now in Kihei

Tue, 30 Apr 2024 18:57:36 GMT

MPAC Expanding to Neighbor Islands

Autism doesn’t care.

It doesn’t care how much money you have, what your family background might be, or where you come from. Autism doesn’t care that you have other stressors, needs, or demands in your life. Autism touches and impacts families of all walks in life, and it doesn’t care who you are.

Unfortunately, while Autism touches families everywhere – Autism resources and support do not. Where you call home in the world determines what level of care your child and family will receive and in Hawai’i this varies greatly between the islands. 98% of full-service Autism support, services, and healthcare professionals are on Oahu – and even on Oahu they aren’t enough! For families who live on neighbor islands the options are very limited. If you live on Maui and your son or daughter has been diagnosed with Autism, you likely know how challenging it is to find resources and community.

We’re ready to change that! The team at Malama Pono Autism Center is very excited to announce we will be expanding our suite of services to Maui this summer. We are opening a large clinic in Kihei which will allow us to provide a full range of support services for families including:

ABA, speech, and occupational therapy
Social skills support
Family counseling
Diagnostic testing and screening

Additionally we will be opening a second KALO preschool program in Kihei. KALO is a preschool readiness program specifically designed for children aged 3-5 on the Autism spectrum. We have seen such amazing things from the children who have graduated from our Oahu preschool and can’t wait to bring this to the families on Maui!

At Malama Pono, we love Autism. We believe every child has a story waiting to be told, and it’s our passion to provide the resources, support, and community to help each individual child and family. We have been serving families on Oahu for over 10 years, and we proudly consider ourselves the best Autism community in Hawaii.

All of our programs will be opening in the summer of 2024 and we are currently accepting enrollment for the KALO preschool program and clinic services. If you or a family member are interested in learning more please reach out and we would love to hear more about your family’s journey, and share more about our Maui Autism services.

Email us at: Info@malamaponoautism.com .

Understanding Autism: A Guide for Parents and Caregivers

Tue, 12 Mar 2024 23:01:52 GMT

Direction for Parents and Caregivers

Let’s dive into a topic that's close to our hearts: understanding autism. As caregivers and parents we obviously want the best for our kids. But before we can provide the support and care they need, we have to truly understand autism and the treatment options available.

What is Autism?

Autism, or Autism Spectrum Disorder (ASD), is a neurodevelopmental disorder that affects how a person communicates, interacts with others, and experiences the world around them. It's important to remember that autism is a spectrum, meaning that individuals with autism can have a wide range of strengths, challenges, and characteristics. While the medical field defines autism as a disorder, many people view autism as a different and diverse way of being and not necessarily a disorder.

Signs and Symptoms

Recognizing the signs of autism early on can lead to timely intervention and support. While every child is unique, some common signs and symptoms of autism include:

Social Challenges: Difficulty with social interactions, such as making eye contact, understanding social cues, and forming friendships.
Communication Differences: Delayed speech or language development, repetitive language or behaviors, and difficulty understanding or expressing emotions.
Sensory Sensitivities: Heightened sensitivity to sensory stimuli, such as loud noises, bright lights, or certain textures.
Repetitive Behaviors: Engaging in repetitive movements or activities, such as hand-flapping, rocking, or lining up objects.

Diagnosis and Evaluation

Psychological evaluation can be used in a variety of ways to offer additional information and clarification towards ongoing treatment and progress. Examples might include:

Diagnostic screening and assessment.
Assessing for “Twice-Exceptional” individuals who are both advanced in some developmental/cognitive areas and developmentally behind in others.
Providing thorough cognitive and academic assessment reports for adolescent students who are preparing to apply to college.
Assessing for verbal and non-verbal learning disabilities that may be impacting a child’s ability to learn.
Determining if a co-occurring condition such as anxiety or other mood disorders may be complicating developmental progress for a child.
Assessing cognitive function to aid in individualized treatment planning.
Making referrals for additional medical testing and screening

A thorough assessment can help determine whether your child meets the criteria for an autism diagnosis and guide the development of an individualized treatment plan. If you’re in Hawai'i and looking for an autism provider that utilizes evidence-based practices, start by booking a consultation.

Treatment and Support

While there is no cure for autism, early intervention and ongoing support can make a significant difference in a child's development and quality of life. At Malama Pono Autism Center, we offer a range of evidence-based interventions and therapies tailored to meet the unique needs of each child. Some common treatments for autism include:

Applied Behavior Analysis (ABA): ABA therapy focuses on increasing desired behaviors and reducing challenging behaviors through positive reinforcement and systematic teaching methods.
Speech and Language Therapy: Speech therapists can help improve communication skills, including speech articulation, language comprehension, and social communication.
Occupational Therapy: Occupational therapists work on improving sensory processing, fine motor skills, and activities of daily living to enhance independence and participation in daily activities.
Family counseling and Support: Autism impacts the whole family and often siblings, caregivers, and couples can benefit from receiving extra support and guidance alongside their child.

Empowering Parents and Caregivers

As parents and caregivers, you play a vital role in your child's journey with autism. By educating yourself about autism, seeking support from professionals and other families, and advocating for your child's needs, you can help them reach their full potential and thrive.

By embracing neurodiversity, celebrating strengths, and providing compassionate care, we can create a world where every individual, regardless of their abilities, is valued and supported. Understanding autism is the first step towards building a supportive and inclusive environment for individuals on the autism spectrum. And the good news is – you don’t have to do it alone!

If you have any questions or would like to learn more about our services and autism resources at Malama Pono Autism Center, please don't hesitate to reach out. MPAC is dedicated to providing support and solutions for the autism community in Hawaii. Together, we’re making a difference in the lives of children with autism and their families.

The Role of Nutrition and Autism

Thu, 11 Jan 2024 19:05:26 GMT

Evidence-based practices for Autism care: The Role of Nutrition

This New Year many people are setting wellness goals centered around weight loss, fitness or other health realted goals. If you have a child who has been impacted by autism, you may want to resolve to learn more about supporting children with autism through nutrition!

Autism is complicated… to say the least. And while nutrition won’t solve everything, evidence-based practices have shown that proper nutrition can play a significant role in managing symptoms and improving the overall well-being of children with autism.

Understand the Link between Nutrition and Autism

Researchers continue to explore how certain dietary factors can impact behavior, cognition, and overall health in children with autism. While there is no one-size-fits-all approach, some studies suggest that certain dietary interventions may help manage symptoms and improve quality of life for individuals with autism.

A few areas of focus that are most researched include:

Gut health – Individuals with autism often have imbalances in their gut microbiome, which can affect digestion, immune function, and even behavior. Some studies have found that eliminating certain foods may lead to improvements in behavior and social interaction in some children with autism. This article does a great job diving deeper into the connection between gut health and autism: Gut Health and Autism

Omega-3 fatty acids – Omega-3s are found in salmon, flaxseeds and walnuts, and have been shown to have anti-inflammatory properties that support brain health. Some studies suggest that supplementing with omega-3 fatty acids can help reduce hyperactivity and improve attention in children with autism: Omega 3

Well-balanced diet – The simplest place to start is by focusing on basic nutrition for your child. Try to include a variety of fruits, vegetables, whole grains, lean proteins, and healthy fats in your family’s daily diet. We know! This is often much harder for children with autism. Remember that even small changes in diet can make a big differen ce and the team at Malama Pono is available to help work on creating more flexibility in your child’s eating habits.

It is always recommended to consult with a healthcare professional or registered dietitian before making significant changes to a child's diet. Chat with your team at Malama Pono for more support it focusing your child's nutrition is a goal for you this year!

Blue Light Special

Tue, 05 Apr 2022 17:39:42 GMT

New Title

Over 50 years ago April was first designated as Autism Awareness Month. A lot has changed over these 50 years, including redefining our efforts past awareness and towards acceptance and empowerment. For most of our families touched by autism, every day of April will be just like every day of every other month. Autism doesn’t go away when the blue lights of April are turned off. The children, teenagers, and adults all around us will continue to live with autism. Both the joys and insights that come with seeing the world differently, but also the struggles and isolation that sometimes come with seeing the world differently.

COVID brought many changes to the world. It ushered in new social and political expectations about how we treat each other. It forced us to rethink how we work, how we socialize, and what we do with our time. More than anything maybe, it taught us that what we thought wasn’t possible- just might actually be worth trying.

It will be those that are able to see the world differently that will be the leaders of tomorrow. A better tomorrow requires new ideas, and new ideas most often come from those with unique experiences, unique backgrounds, and maybe even unique neurology.

As we embark on another month of focusing our blue lights towards autism acceptance, let us be hopeful for an emerging world that might soon be moving past acceptance and towards actively seeking those who think differently to solve some of our biggest problems.

If only I had known...

Wed, 02 Feb 2022 21:28:22 GMT

Sometimes parenting is hard.

I had a mother and father sitting in my office recently and they made a statement I found very real.

“If we had known it would be like this, I don't know if we would've had kids.”

In big crowds, at conferences, and in circles of parents you rarely hear this kind of raw vulnerability. We expect parents- no matter how hard the job of parenting is- to celebrate the struggles and make statements like “I wouldn’t change him for the world” or “My daughter has been a bigger blessing than I could have imagined.”

One is not more true than the other. I believe most parents- of typical children or otherwise- have times when they question the choice to have kids. Or quietly fantasize about what they would be doing if they weren’t doing kids. Equally there are moments when a child’s gaze, hug, or witty comment seems to make it all worthwhile.

It's okay parent. Or Grandparent parenting again. We all have those thoughts sometimes. Continue on. Indeed it is worthwhile in the end...and sometimes in the middle. Look for thsoe moments and hold onto them when you can.

There is a little life running around your feet that is counting on you to carry on.

Occupational Therapy

Wed, 17 Feb 2021 13:57:40 GMT

Malama Pono Autism Center is pleased to introduce Dr. Jennifer Long, OTD, OTR/L to the MPAC team. Dr. Long is an occupational therapist who has many years working with children of all developmental abilities. She practiced extensively in pediatric settings in California and upon relocating to Hawai’i began establishing herself as a resource to the children and families of Hawai’i.

Occupational therapy (OT) is a valuable part of a broad intervention plan for many families. This type of service targets a wide range of functional skills development including attention span and stamina, play and social skills, fine and gross motor functions, sensory integration processing and successful play skills.

Dr. Long is available to provide assessment, consultation, and treatment for children and families.

Are you Dunbar-Social or Insta-Social?

Mon, 01 Feb 2021 05:43:32 GMT

At the end of the last century a researcher proposed there is a limitation to how many people we can have in our social lives. Coined “Dunbar’s Number” the theory asserts that humans can have stable social relationships with only about 150 people. This is clearly a speculative number at best, but the idea behind it rings true. There is a limitation to how many people we can have close and meaningful relationships with.

What happens when we start trying to have relationships with more people?

I met someone this week who has over 200k Instagram followers and makes a living- and a self-identity- from being Instafamous. Dunbar would have lost his mind.

Social media was not a concept when Dunbar set the bar at 150 and clearly the idea of what is social and what constitutes a meaningful relationship must be revisited in the new digital world.

When it comes to kids with autism it seems we spend a lot of time trying to teach them to be Dunbar-social, when they often naturally already know how to be Instagram social.

What is Instagram social? It’s where you are really into a specific thing, you find all the people who are also into that thing, and you all nerd-out together about it.

Sound a little autistic? Maybe autism isn’t so bad after all…

(insert sarcasm emoji here)

We spend a lot of time teaching kids with autism how to act like everyone else, while in some important ways everyone else is starting to act more like what we call autism.

Good social skills are important, this is acknowledged. But with our effort and focus on social skill deficits, let us not forget that kids with autism have a lot of natural strengths too. In fact some strengths that might be just now becoming useful.

Finding a bunch of people who want to obsessively nerd-out about a very specific topic and connecting them online is a real thing. It’s called SEO (Search Engine Optimization). And people pay a lot of money for that “autistic” behavior.

So yes we need to continue equipping our kids to have all the social tools they can, but let’s not forget they come loaded with some special features already.

Hand flapping and eye contact? Doesn’t matter so much online.

Are kids with autism afraid of clowns?

Sat, 10 Oct 2020 16:20:19 GMT

I recently took my kids to the circus. Standing in a long and winding line, we waited for the doors to open. Circus themed vendors and entertainers weaved in and out of the line amusing and selling their wares. The woman on stilts came stumbling by and my boys cheered with glee. The man selling popcorn and cotton candy came by and children ran up to him looking back expectantly at their parents. The teenager selling twirly-light-up-swirly-things walked through and a mob of children rushed him.

And then a clown.

My otherwise bold boys suddenly coiled behind my legs, watching the clown stoically. The clown knowingly kept his distance from all the children, smiled, pretended to trip over himself, and then disappeared from wherever he had come. Whereupon the children and joy and excitement all reappeared and the circus was right again.

Let’s recap: My two year-old, who has never seen a horror film, the Batman’s Joker, or any other parody of a killer-clown, was stricken with fear at the first site of a clown.

A clown: A kid friendly person dressed in kid friendly colors and clothes, with a permanently kid friendly smile painted across his face. Trying to give away balloons and candy. And nobody wants anything to do with him. What gives?

This question has been asked by others for quite some time. In 2008 a study was published from the University of Sheffield where 250 children ages 4-16 were surveyed and found to “universally dislike” clowns. The discussion that followed noted that our fear of clowns does not appear to come from the popular media portrayals of evil clowns. Rather, the effective portrayal of evil clowns comes from our seemingly instinctive and underlying fear of these characters.

Our fear of clowns as it turns out, is connected to our ability to read social cues, especially those expressed through the face.

Deeply rooted in our evolutionary social-biology is the understanding that we must be able to quickly differentiate danger from safety. We can’t afford to wait and see who the bad guys and good guys are. We naturally and without thought read people’s eyes, mouth movements, and subtle expressions to determine if we should approach or withdraw. We can do this from across the room, we do this in all interactions with people and animals, and it is the basis of our social communication. Paul Ekman has done extensive research on this noting that even barely detectable changes in expression, called micro-expressions, are acknowledged and measured by the human mind. His work has gone on to train law enforcement, TSA, military and is the basis for the TV show Lie to Me.

A key part of autism for most individuals is difficulties in social communication. Said simply, the social behaviors that seem to come naturally to everyone else are like a foreign language to many people with autism. Some can learn this foreign language, some can pretend they understand it enough to get by, and others never understand it at all.

To compare social behaviors to a foreign language does not quite make the point, because even those who speak their native French or German had to originally learn this language. Most of our foundational social behavior is not learned, we are born with it. It is evolutionarily hardwired into our DNA. For those with autism it seems this wiring may be different.

Clowns are scary to us because we can’t read their faces. Behind the makeup and the clown nose, we can’t tell what is really going on. And that feels unsafe. Unsure. Unknown.

As I considered all of this at the circus I had the thought:

I wonder if having autism is a bit like being in a world full of clowns? Everyone has a face painted on but you have no idea what really is going on behind it.

I guess that might be a little scary. Might make me a bit anxious. Think I might just keep to myself.

Not sure I would even look those damn clowns in the eyes.

Flying planes, raising children and other things we’re not good at.

Sat, 26 Sep 2020 17:59:44 GMT

Have you ever tried to fly a plane? Ever replaced a transmission on a truck? How about removing a brain tumor?

For most of us the answer is no.

Also a likely “Nope” for:

Dry-cleaned a skirt
Raced a race car
Built a house
Replaced a tooth-filling

Most have never even considered trying these activities because we don’t know how. We recognize there is a certain amount of skill that is required to even attempt these things, let alone reach any level of proficiency or expertise.

We leave the important things to the experts.

Well almost everything. There is parenting.

It’s a funny thing, this skill we call parenting. We seem to assume that if you have the means to acquire an actual child in your care, you should just know what to do. You know, because you were a child once. And YOUR parents did such a great job, of course you know how to do it.

Not to worry, if you get stuck somewhere with parenting there are plenty of books, blogs and experts who can help you through it. Let’s see what happens?!

It’s like flying a plane. Jump in there and if you get in trouble just phone a friend.

Well actually it’s nothing like that. Most things are nothing like that, but that’s how we treat parenting.

In reality parenting is one of the most challenging activities that most of us will ever be asked to do. It requires enormous amounts of patience, sacrifice, focus, emotional strength and willingness to fail.

And all of that gets you through the first couple months. After that, good luck.

Not only is parenting a challenging skill, it is a staggeringly important one. I could list all of the statistics that would tell us children raised in unhealthy homes incur great economic, social, employment, and emotional problems later in life. I could tell you all the struggle a child is likely to have and all the problems they will later inflict on their own children. And the generations of pain that will follow. I will instead focus on something simpler.

Nobody wants to be a bad parent.

We often hear “You’re such a good mom” or “He’s so lucky to have a dad like you.” Our language reveals that we know parenting is a specific skill and that some people seem to have it and others don’t.

The problem is, unlike flying a plane, knowing how to be a good parent isn’t a prerequisite to actually being one. However, much like flying a plane, most anyone with a certain amount of training can learn to do it.

Parenting is a skill you can learn. It is a talent you can develop and improve upon. The first step is reminding yourself that you don’t just know how to be a good parent because you have a child. It requires study, self-examination, and lots of learning. The good news is that there are lots of resources. Sometimes the right book, phoning a friend, or simply watching what others do can go a long way. And yes, you may even get desperate enough to call your own mom. She did after all, do enough to get you this far in life and sitting here reading this blog.

Also remember there are people that teach parenting for a living. People that understand the biology and psychology of children’s behavior and can be great resources for parents who want to be better. Malama Pono has a great team of parent coaches that would love to help.

Think of it like flying. We’ll be your co-pilot.

A Call for Community

Sat, 26 Sep 2020 16:33:48 GMT

Dear parent who is feeling down trodden. Dear parent who is overwhelmed and not sure you can go on. Dear parent who has lost a sense of yourself and given up on trying to find it again. Dear parent who didn’t think having kids would be this hard, who thought your kids would love you back a little more. Dear grandparent who wasn’t planning on being a parent again. Dear parent who is tired of hearing how wonderful autism is and how special it makes people and that there will be special jobs especially suited for autism someday. In the future. Someday.

Dear parent who doesn’t want to see perfect children and perfect families and perfect birthday parties on Facebook anymore. Dear parent who left a full grocery cart at the store today because- well because that’s what you do sometimes. Dear parent who is tired of answering questions about why your child isn’t potty-trained, walking, talking, playing with the other kids, going to school, finishing school, or playing in the band.

Dear parent: You should know you are not alone. There are a great many parents out there who have similar struggles, doubts, and hard times. You are not the only one who has quietly wished they had not had children at all. You are not alone. The problem is simply, you are alone.

There is great strength and energy in community. Strength in doing something you typically do alone, with other people. We as humans are at our best when we are knit together with others. Having a child with special needs often leads parents to isolate, withdraw, and have very little community around them. After all, nobody would understand.

That is the risk. Maybe my child and family really are different. Maybe nobody else thinks the things I do. We let that fear keep us from seeking out others, from putting ourselves and our family out there for others to see.

Oh dear parent, you are not alone. There are many others like you who will benefit from your story and support as much as you will benefit from theirs. This life is not meant to be done on your own and you only add suffering to your pain when you go it alone.

This is your call to find community. To have an imperfect birthday party. To post a real picture on Instagram. To commit to a walk or a talk or a coffee even if it needs to happen on your kitchen floor. What’s that you say? Your house is dirty? You are not alone dear parent, you are not alone.

There are others looking for you. Don’t let the excuses your mind will create stop you from reaching out and finding the others who should be in your community.

George Floyd

Thu, 04 Jun 2020 05:34:09 GMT

Malama Pono Autism Center is deeply committed to servicing children with developmental and learning needs. We spend lots of our time and energy advocating and fighting for children who are undeserved, underrepresented and often left on the sidelines.

For many of our staff, the fight for equality and justice does not stop with autism.

The death of George Floyd has shed renewed light on the long and steeped history of marginalization African Americans have endured in this country. People and communities around the world have raised their voices in solidarity this week expressing simply- this is not okay.

Malama Pono stands with them.

Introducing Dr. Sara Macone

Fri, 19 Apr 2019 05:49:16 GMT

We understand that raising children is hard work and we are honored we get to be part of your family’s journey.

Often families come to us looking for additional support or guidance. Sometimes couples need counseling in their relationship, from time to time siblings need support and attention, and it’s not uncommon for a mother or father to need support themselves.

Malama Pono is excited to announce that Dr. Sara Macone is joining our team. Dr. Macone is a clinical psychologist specializing in Neuropsychology and Cognitive Behavioral Psychotherapy. In her fourteen years of practice in Italy and in the U.S. she has worked with kids, adolescents and their families impacted by autism and other neurodevelopmental differences. Dr. Macone earned her degrees in Rome and has been published in national and International journals.

Dr. Macone is available for counseling, guidance, and consultation. Additionally she is available to conduct testing and assessments, including diagnostic evaluations.

Dr. Macone is a careful and compassionate psychologist who we think is a great addition to the Malama Pono team. If you are interested in scheduling an appointment or have questions about how she might be able to help please contact us.

Healthcare in the age of Fake News

Fri, 01 Feb 2019 05:59:48 GMT

There used to be three channels on the TV. If you wanted to send a message out to a broad audience, you had to get on one of those three channels. Getting your message on one of those three channels was really hard. That meant that only the most important and most accurate information made it through.

How many channels does your TV have now? How many web pages does the internet have?

The amount of information we have access to is endless and often makes it difficult to determine what is important and accurate information- and what is fake news.

We make lots of important decisions but perhaps few are as important as choosing who we are going to trust to care for your children. Malama Pono takes this responsibility seriously and since it’s inception has worked to be one of the best providers in Hawaii.

It is for this reason we are very excited to announce Malama Pono as been recognized and awarded by the Behavioral Health Center of Excellence as one of the top providers in the country.

This is not an award you can purchase or win by getting enough votes on the internet. This isn’t fake news.

Malama Pono voluntarily submitted to an intensive and multifaceted audit in 2018 which included interviewing our leadership, anonymously surveying staff and parents, reviewing our clinical records, and most importantly: Evaluating our clinical outcomes.

In the end the findings confirmed that we are on the right track: Malama Pono takes great care of kids and families, takes pride in seeing lives changed and is one of the best in Hawaii.

To learn more visit HERE

How to eat a Buick

Tue, 02 Oct 2018 06:08:42 GMT

It may seem like a silly instruction. If you get too caught up in the details, such as the limits of human digestion, you might as well not read any further. But if you want to know how to overcome great obstacles when you feel overwhelmed and can’t possibly see a way through, ask yourself:

How do you eat a Buick?

Being a parent is hard. Parenting a child with unique needs, while rewarding in its own right, can also be overwhelming. Overwhelming in a way that your friends and other parents usually can’t understand.

What’s that? You don’t have friends anymore? That’s overwhelming too.

There are times when raising a child and supporting your family feels like a job too big. Or at least it feels too big for you. There is just too much to be done, not enough help and it's hard to see a light at the end of the tunnel. And emotionally? If you even go there you might not come back.

It’s a lot. Like, you know- trying to eat a Buick.

When you stand in front of a Buick and consider eating it, it is a short consideration. Nope, can’t do it. Many of the biggest challenges in our lives are like this. When we consider the task before us in its entirety, it doesn’t seem possible.

But when we start to break it down into its parts, it slowly becomes a bit more feasible.

If we continue breaking the boulder down into smaller and smaller stones, eventually we are left with a pebble that we can manage. And if you can manage one small pebble, then you can manage another small pebble after that. And another after that. And eventually you will have overcome a small hill of pebbles that as you look back, once was a boulder too big.

Those who only see the boulder before them are rarely able to overcome it.

However others learn how to eat a Buick:

One, very small bite at a time.

Some of the most challenging bites- the bumper or steering wheel maybe- need to be ground up into the smallest pieces.

That is how you eat a Buick. That is how you overcome all of the biggest challenges in life. By picking up the smallest piece you can manage, the next piece before you, and moving it. One small piece at a time.

So parent, as you face the periods of child rearing where the task seems impossible but you know you must go one, remind yourself:

How to eat a Buick.

(Those who are not following the Buick metaphor can also reference running marathons, climbing mountains, or any other myriad of examples. But for me, it’s more fun to consider trying to eat a Buick.)

Autism Month: Different People, Different Stories

Fri, 21 Apr 2017 06:25:15 GMT

To honor April, recognized as Autism Awareness and Acceptance Month, we are going to share several contrasting stories about autism. Our intention is to offer different glimpses or takes on what autism is and what it means to have autism. Our message in this blog series is simple: Autism: Not all bad, not all good.

Having an autistic child wrecks your life: A Friend's Perspective

A woman wrote into the Daily Mail, a British newspaper. She titled her letter "Why can't we face the truth: Having an autistic child wrecks your life."

If you are accustomed to reading feel-good stories and politically correct puff pieces, this may be offense. We decided to share it here because it is real. It is an honest observation that is probably shared by many a friend or neighbor who have watched a family wrestle with autism.

"Thanks to a moment of everyday terror, I think I knew before anyone else. My friend's two-year-old had climbed upon a chair from which, with customary toddler clumsiness, he fell.

Like all children, he managed a second of stunned silence - then howled like a banshee. Like all adults, I rushed to pick him up, to cuddle, to soothe.

What was unexpected was his response: visibly fearful of my touch, he kicked my belly, disengaged himself and ran away

I added that to the list I was already mentally composing: no eye contact, ever. Not even with his mum. No shred of attachment to toys, pets, people. Obsessive, repetitive behavior. Crazed by the sight of other children. Hmm.

By his fourth birthday, still with nappies, but without speech, everyone else knew, too.

Tom was - I mean is, and always will be - autistic. I've been thinking a lot about Tom, who's now seven, as the debate rages over the possibility of a prenatal test for autism, with abortion then optional.

And, so far, most of the argument leans towards such a test being undesirable and unethical.

Brave and devoted mothers - notably Charlotte Moore, whose book, George And Sam, about her two autistic sons, is immensely powerful - have clung to the positives brought into their lives by their children.

Backing the emphasis on the positive have been those who point to the frequently high intelligence of the autistic savant, as if we are talking about phalanxes of Mozarts and Einsteins.

How much poorer we would be without, say, the astonishing brain of Dustin Hoffman's Rain Man!

Who would or could babysit this child?

Well, maybe. But not as poor as Tom's family: three generations of lives - I include his own - wrecked, for ever, by his cussed condition.

His parents, let us call them Cathy and John, bear the brunt. Immediately after diagnosis, she beat herself senseless with blame; so many theories, each making it her fault.

Should she have allowed her son to have had the MMR jab? Was it, as some said, a behavioral disturbance caused by 'bad' parenting?

Once, she even convinced herself (from something she'd read) that it was mercury poisoning from eating tuna during her pregnancy.

Theories, however, were soon to defer to practicalities. They strove for a normal life: simple things, such as going shopping together.

But with the best will in the world, how many shops - or, indeed, how many customers - are going to tolerate a child who screams, bites, defecates and destroys everything within reach?

Besides, dangers lurk. Last time I bumped into them in a supermarket car park, Tom was bawling hysterically. Why? Because he had seen a bird. So, mostly, Cathy and John stay at home.

Both their careers are over - not, as for many with small children, on hold for a few years. Each knows that neither will work full-time again.

There have been attempts with special schools, but none succeeded. Sanity is preserved by each parent having a hobby (fishing and tennis), so one babysits while the other takes a break.

They rarely go out together, for who else - other than one plucky grandmother - would, or even could, babysit this child?

Worst of all, the other babies, of whom Cathy and John had dreamed, have been ruled out.

First, because they simply do not have the time to give to another child. And second - I admire them for thinking of this - they do not feel it would be fair to raise a child already programmed to be guilt-tripped, whether by itself or by others, into taking on the role of carer when Cathy and John are no longer capable. Or dead.

This, then, is their life sentence: to worry, every hour of every day, what will happen to Tom when they are gone.

Meanwhile, Cathy's parents - both exceptionally youthful at 60 - have had their own plans turn to dust.

They had looked forward to more time together in retirement; in fact, they have less.

Granny Helen spends all the time she can, maybe more than is good for her, trying to help out: a little childcare here, a spot of shopping there.

The carefully saved nest egg, intended for the small luxuries that make ageing more enjoyable, is rapidly depleting.

With Cathy and John unable to hold down proper employment, it is Helen who chips in for the unexpected bill, the car repair or the TV license.

Tom had ripped out a handful of her hair

And, please, don't ask about state benefits for carers: these are so meager that if it were not for Helen, Cathy could not even afford the mobile phone she must have with her every time she steps outside her front door.

The trouble is that Grandpa Bill is not quite as happy as Granny Helen for their money to be spent this way - so there are new tensions there, at a time in life when they need them least.

Yet of the three generations, it is Tom who suffers most. And he's getting worse. As Helen said, only last week: 'We used to have a little autistic boy who was often happy. Now we have one who never is.'

All three generations set off in a bold attempt at a holiday over Christmas. Not a resort, bustling with strangers; quite impossible. But a rented house, just the five of them, to let Tom feel the warm sun on his face. Well, it was a nice thought.

I phoned with New Year good wishes. Helen answered, in tears. Her head hurt, she said; Tom had ripped out a handful of her hair by the roots. Bit her, too. But I couldn't hear what she was saying for the insistent shrieking in the background.

Waaah! Waaah! Waaah! Goodness, I said. How long has he been doing that? Since they left home, two weeks earlier: through the airport, on the plane and 18 solid hours a day.

They had to have him sedated just to get him home again, which Cathy hates doing. So that's it for holidays, breaks, respites or breathers. Again, for ever.

Autistic children are not all the same

And the question they are starting to ask is too terrifying for words. If this amazingly beautiful child (they often are), possessed by misery and rage that no amount of expertise has relieved, is this destructive and violent at seven, then how much worse will he be at 17, when he's that much stronger?

Last year, I gave them Charlotte Moore's book, thinking, foolishly, that it might afford comfort.

It actually meant nothing; they simply could not see Tom in George and Sam. Autistic children, like any other children, presumably reserve the right not all to be the same.

But if there's a chance of a Tom, and a chance of a test to indicate his condition, then - with the obvious proviso that it never be mandatory - I would urge its opponents to think less of Mozart and Einstein and more of otherwise everyday people: Cathy, John, Helen, Bill. And Tom.

I would not be impertinent enough to ask Cathy if she wishes she'd had such a chance.

In any case, that is a difficult question after the event: it is hard for a mother retrospectively to wish away a living child who, come what may, she loves.

But looking on, as a relatively dispassionate observer; looking at the damage done, the absence of hope and the anguish of the poor child himself, do I think that everyone concerned would have been better off if Tom's had been a life unlived?

Unequivocally, yes."

Here's a link to the original newspaper posting:

http://www.dailymail.co.uk/femail/article-1116602/Why-face-

truth-Having-autistic-child-wrecks-life-.html

Autism Month: Different People, Different Stories.

Mon, 17 Apr 2017 06:32:33 GMT

15 Reasons autism is awesome: From someone who knows.

This post is from Kerry Margo, an award-winning autism advocate diagnosed at age 4. Now he is a graduate student in Strategic Communications and Leadership at Seton Hall University. He posted this short essay on the blog www.lovethatmax.com.

"My name is Kerry and I was diagnosed with Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS), a form of autism, when I was 4. As a kid, I had sensory integration problems, motor deficiencies, speech delays, and social awkwardness. I could not even begin to tell you the stories of how aggressive I was. Lashing out was my communication and it led to emotional issues for years for me.

Over time though things did progress. The anger of not knowing the world and how to express myself became a place of understanding. For a long time I thought the reason why I was able to get to where I was today was because of my therapies (I had physical therapy, occupational therapy and speech therapy from 6 to 18). Another factor I thought contributed to this was because of my parents love for me. Above all though what really set me a part and made me begin to not only see life differently but also understand the world so much more was a positive attitude. Once I stopped beating myself up for not being the best talker, the best writer, or even the best looking guy, I began to focus on who Kerry was today and what he did well.

I can’t tell you exactly when I started to think in this mentality but when it hit me I was on a different path than I once was. Over thinking about what I didn’t have turned into self-reflecting on what I did have. I began looking at positives such as my great memory for sports. I began looking at my love for movies and turning that into an acting career (which would then begin my role as a national motivational speaker today). Having this attitude led to me graduating grade school, high school, college and now fulfilling my dreams of getting a masters degree in Strategic Communication and Leadership to become an advocate for the future generation of Kerry Magros out there.

For those readers out there, especially those parents who are reading this, what I hope you take out of this is that the power of a positive attitude can do wonders for not only your life but also the lives of your kids.

I hope everyone remembers that….

• Autistic people are gifted

• Autistic people can surprise you

• Autistic people can focus on certain interests for long periods of time

• Autistic people are passionate

• Autistic people are non-judgmental

• Autistic people are honest

• Autistic people are rarely boring

• Autistic people are special

• Autistic people are logical

• Autistic people are loyal

• Autistic people are interesting

• Autistic people are wonderful

• Autistic people are diverse

• Autistic people are imaginative

• Autistic people are unique, and as Temple Grandin says, “Different but not less”

Autistic people, no matter where they are on the spectrum and regardless of how many traits listed above they may or may not have, are just "people." People with weaknesses but also strengths, destined for their own greatness in the way they see fit. I hope we can all cherish these facts because if we can, our autism community would be even more phenomenal than it already is."

Autism Month: Different People, Different Stories

Thu, 06 Apr 2017 07:02:56 GMT

Adults with autism.

Due in part to what we know about the importance of early intervention, there is great focus on children with autism. Seemingly unbeknownst to researchers, funding sources, and providers, these children actually grow to become adults.

A couple years ago someone posted a question on Reddit asking,

"What's it like to personally live with autism?"

Someone responded. And in true comment section style, it led to some great dialogue between respondents. Following is an edited-down version of the original response written by a man with autism "thj"

"I don’t have it as strongly as many, and your question is akin to asking a squirrel how it is to be a squirrel. The squirrel only has his own experience to compare with. Experiences will vary from person to person. However, I’ll give it a try…

In general…

Before you know you have it, you simply assume that you have an odd personality.
After you find out that other people are in the same situation as you, you realize that you are in fact quite a normal autistic, and that many of your quirks are symptoms.

Social experience…

You have some trouble taking hints, but only figure this out very late, or when other people tell you. It takes you very long to learn how to pick up in hints, and you never learn pick up on all of them.
You sense that other people place more importance on how they are feeling. It affects their judgement, and things that are not based on logic and facts may come off as unreasonable or immature to you.
You notice that people spend more time on small talk and polite phrases than you, but you don’t like it, as it don’t really convey useful information. You may have trouble initiating conversations with strangers because you lack skills in this area.
You notice that everyone is more concerned with events among family and friends than you are. You don’t particularly enjoy Facebook. EDIT: But you do like how it lets you keep in touch with people while maintaining a safe distance.
You feel less worried about sharing private details with people, as they don’t embarrass you to the same degree.
You frequently forget that your words and actions could affect other people, and if you do remember, you often underestimate it. Other people assume that you are selfish, because they seemingly refuse to accept that a brain disorder can make you momentarily forget that other people have intents and preferences, and that this is different from being consciously and deliberately malicious.
You have some issues with the tone or the volume of your voice, as you may forget that not everyone in the room wants to hear what you’re saying.
You have more technical, geeky or obscure interests than others.
You really love cats, and find dogs overwhelming much in the same way you find people to be overwhelming.
You think parties and concerts are too hot, crowded and noisy.
You have only had short romantic relationships, if you had them at all, and they only happened in your mid-to-late 20s. You’re probably unmarried or divorced after a short marriage.
You much prefer to stay inside your house.
You really want people to notice you and your abilities (from a safe distance), but you aren’t so good at extending that to other people.
You like receiving clear emotional signals, since you’re not so good at picking up subtle emotions, but you are bad at sending these signals to others.

Sensory experience…

You notice that other people are less sensitive to heat, touch, noise or light than you.
You have trouble picking out voices in a crowded or noisy room. You sometimes find it difficult to understand voices on the phone.
You often completely forget about time and place if you’re enjoying something, and will often experience a level of immersion akin to that of a child watching an exciting movie, even if you’re an adult, and you’re merely building a model airplane.
You often remember that something happened, but not when it happened, or who said what. You get reactions from people when you can’t properly account for these things.
You remember all the mathematical powers of 2 up to 262144, but you can’t maintain balance on your bank account, nor can you remember to pay your bills.
You’re clumsier than other people.
You’re very concerned with details. You notice small mistakes everywhere, and they bother you until they are corrected.
You can’t sit still. You often shake your foot, bite your lips or fidget with your hands. Not doing so feels uncomfortable, because tension, anxiety or frustration builds up inside, and your body feels numb if it’s not moving.
You occasionally feel like acting like Jim Carrey, and contort your body and face. With your friends, you usually manage to fit this into the context of being goofy.
You tend to sit lopsidedly and lean on things, because this is more comfortable somehow. You might find yourself tilting head more often than others.
You may have some issue with controlling your food intake. I suspect that the feeling of satiation may be offset in some autists, and people with weight issues in general. EDIT: You may have a poor appetite instead. You are particular with the mouth feel of foods.

Emotions…

You have a full range of emotions, but you’re terrible at displaying them, so everyone, including the psychiatrists who define the symptoms, assume that you’re devoid of them.
The effect emotions have on your decision making is smaller. You may feel a certain way about something, but your logic will often override it. You accept uncomfortable truths, and may seem jaded. People will occasionally compare you to an old man.
You are a hard person to motivate. Most people are motivated by their emotions, but this doesn’t have much of an effect on you, so you’re stuck tickling your logical brain constantly, thus the preoccupation with obscure, nerdy interests at all costs. You have trouble keeping a job because of this motivational issue. You have perfect order in the computer programs you write, or your collection of Star Wars paraphernalia, but your apartment is a mess.
You’re prone to getting depressed, and find it hard to pull yourself out of it, much like you find it hard to take control of your life, and stop doing entertaining but useless things all day."

Here's a link to the original post:

http://www.reddit.com/r/AskReddit/comments/uuw5f/are_there_any_redditors_out_there_who_have_autism/

When I realized why my son melts down at home and not at school

Mon, 09 Jan 2017 07:16:46 GMT

This is a blog post written by a mom and shared on The Mighty, one of our favorite websites. Check it out here themighty.com

Tonight my son walked through the door from school, and immediately I knew. He didn’t have to say or do anything. I just knew.

Call it mother’s intuition, or call it years and years of practice, but I knew something was wrong. It was the delayed effect. My son has had a tricky day at school. He has held it together for nearly seven hours. Then he walks through the front door, and bam!

He’s somewhere safe and familiar, and he can’t contain the pressure anymore.

It creeps out of every fiber of his being. His face is tense, and he has red cheeks. His body is stiff and awkward. His words are fast and loud, and he’s agitated. He’s hungry, he’s not hungry. He wants a snack but not what’s in the cupboard. So he gets angry and swears because he’s not in control of his body anymore. He wants to say hello to the dogs, but their overexcitement is too much for him, so he’s too rough with them and he gets cross with himself. I ask him how he’s feeling, and it’s like there is a red fog surrounding him. He can’t process what I’m saying. His sisters walk in chatting and laughing. They sound like a crowd of people to him, and he shouts to them to be quiet. They snap back at him as only sisters do, and wham — the volcano explodes. We have liftoff.

Meltdown. There’s no turning back now. It all has to come out.

Then comes the exhaustion — for him and for me. He can’t reflect on it because it’s all just too much. He just needs to recharge now, as do I. It’s so hard for all of us, but I can’t even begin to imagine how it must feel for my son.

As his mom, I know there would have been telltale signs throughout the day. But they’re small clues that can be easily missed, as he would have been largely compliant, so therefore no one would have realized there was any problem. But I know as the day progressed, his complexion would have become paler as the energy sapped out of him with each passing hour.

He may have struggled to eat his lunch due to high anxiety . A nervous giggle would have squeaked out when his teachers tried to speak to him. He would have put his head down on the table during lessons or possibly rocked back and forward on his chair to calm himself down. And as the pressure mounted and the clock ticked toward home time, there may have even been some finger picking and sleeve chewing.

My son shows these signs of stress through his body language and gestures. He can’t always communicate his needs verbally, so they can get missed.

The can be a common challenge facing many children on the autism spectrum. Some children are able to contain their feelings all day at school, with the teacher blissfully unaware there’s a problem. However, the stress hormones are slowly building and building inside. This creates a situation that can put incredible pressure on families — especially if teachers don’t understand or believe what the parents are telling them. So let’s think about it this way for a minute…

Imagine yourself as a bottle of pop. Your ingredients include autism, sensory processing difficulties, ADHD and a hidden speech and language delay. The world’s a confusing place, and your difficulties are largely hidden to the wider world, so not many people understand things from your perspective.

This is your day:

Going to school is just one big worry for you… so give that bottle a shake!

You get to school and your teacher says, “Let’s start a new topic.” What does that mean? … Give it a shake!

You don’t understand what you have to do… shake it up!

You make a mistake… shake, shake, shake!

The lights in class are buzzing, and it’s annoying or painful… shake it a little more!

It’s assembly. You have to sit still while your insides are wiggling and jiggling around… shake it up!

The timetable changes and it’s not math like it should be, it’s now music… and shake again!

The car gets stuck in traffic, and the wrong radio station is on in the car… that’s a few more shakes!

You get home and the lid blows off with the pressure!

That’s the delayed effect. It’s a real thing. The times over the years I’ve felt so confused and isolated when teachers have said to me, “Well, that is a surprise. We don’t see any of that here at school.” Or I’ve heard, “Well, he can behave for me, so maybe you’re being too soft on him.” I spent many a sleepless night wondering if it was me. Was it my parenting? But I am his mom, and my gut instinct is always right. I knew there was something my child was struggling with, and all I had to do was understand what his behavior was telling me. My child explodes at home with me because I’m his safe place. I am predictable and calm, and he can really be himself at home. He is fully accepted at home.

So this tells me there are many things that can be done to reduce this build-up of stress hormones for children like my son

— making them feel more safe and accepted for who they are. And that means really embracing their individual needs. Not just trying to fit a round peg into a square hole.

The Hardest Thing

Tue, 29 Nov 2016 07:23:32 GMT

Sarah at thestayathomesoprano.com writes about her experiences as the mother of her oldest son Taylor. Who has autism. Her writing style is vulnerable and heartfelt, which is refreshing and worth checking out.

She wrote a blog post titled "The Hardest Part". where she points out that every stage of development has hard parts. This is of course true for all children not just those with special needs. It is also true that the hard parts look different for parents with a child with special needs.

Sarah's post shares her emotional process around knowing Taylor will someday need to go live in a group home. It is a heavy post. And it is very real. Re-posted here:

"I just read a blog post where the author was asked to list the hardest thing about autism, and she said, people. For me, the hardest thing changes as time and life change. A long time ago, it was other people not being kind, instead very very judgmental. Later it was hitting and pinching. Later still it was loneliness and so on. Today, it is fear…pain. Fear of giving up, pain of letting go.

Many people have heard the song “Say Something” by a Great Big World and a cover by Pentatonix. Most see it as a romantic or familial toned song. I ask that you close your eyes and listen to it again, trying to imagine yourself as a mom who has to give up her young teen child (or any age, for that matter) to a group home…to live away from his/her family. Imagine this is the first day of that chapter of their lives. Imagine the feelings of failure, the guilt that overwhelms. Think of the sadness, the loss, the dashed hope, the feeling of giving up. Think of them in the new room of their child. Imagine the car ride home with an empty seat in the back…

This isn’t an ‘if’, it’s a when. It isn’t today, nor tomorrow, the next day, or the next. I hope it’s later, not sooner, but it will happen. This happens everyday. Parents have to give up their kids to a group home. Before people say something, I do know I didn’t fail. I know I shouldn’t feel guilty, like a failure, or that I am giving up. I know I’m not giving up. I know it will be the best for him. I also know it isn’t goodbye. But it is goodbye to life as we know it now, and that feels like enough of a goodbye to me. I know we can visit; I know we can bring him home to stay with us as much as we would like, but tell that to a mom who is giving up her baby, placed in her charge by God Himself. No matter what I know in my head, I know my heart will wait until that time comes to start working to reconcile itself to believe what the head says.

On that day, when we are standing in the doorway of his new room, tears will flow freely. Guilt will overwhelm. My heart will be pleading with my non-verbal son “Say something! Please! Tell me you love me. Tell me you know I love you. Tell me we don’t have to do this. Tell me you forgive me. Tell me I didn’t fail. Tell me you understand.”

I know it will be okay. I know I will be okay. I have faith in Jesus that He’s going to have it in his hands, have Taylor in his hands…have me in his hands.

But if you ask me today what is the hardest part?…. knowing this is my future."

Look me in the eyes

Wed, 09 Nov 2016 07:28:52 GMT

Eye contact is a powerful human behavior. Not only is vision by far our most dominant sense, its development in our evolutionary history is one of the key functions that sets us apart from other animals. From across the room, across the street, or across a field we can read a lot about someone’s intentions in a split second. Friend or foe? Safe or Dangerous? Interested or disinterested?

John Medina in his book Brain Rules points out: “As babies begin to understand cause and effect relationships, we can determine how they pay attention by watching them stare at their world. The importance of this gazing behavior cannot be underestimated. Babies use visual cues to show they are paying attention to something –even though nobody taught them to do that. The conclusion is that babies come with a variety of preloaded software devoted to visual processing.”

So when such an important part of being human doesn’t seem to be working properly, what’s up?

Eye contact has long been a hallmark of autism. This is partly because it’s one of the earliest signs of autism (and has spurred a generation of anxious new mothers staring into their infants eyes), but also because it’s a symptom of autism that’s easier for people to notice. Eye contact is such an important part of human behavior that we quickly become aware when we are around someone who doesn’t engage in typical social eye contact. It’s hard to read that person, it’s more difficult to understand their intentions. We may even start to think we can’t trust them or they’re not being truthful.

So if eye contact is part of our genetic history and maybe even a preloaded behavior before we are born, why do children and adults with autism often not use eye contact the way others do? This has been a question with lots of debate over the years.

Do people with autism tend not to look others in the eye because it is unpleasant or they are disinterested?

How we answer this question is important to how we understand autism and inform how we might go about treating it.

The “gaze-aversion” hypothesis suggests that individuals on the autism spectrum are generally uncomfortable with the amount of eye contact others make. Some older children and adults on the spectrum report that eye contact makes them nervous, anxious, or generally uncomfortable. Said simply: It feels weird, so they don’t do it.

Alternatively, the “social disinterest” hypothesis speculates that individuals with autism neurologically have less need or desire for social interaction and thus are not interested in looking others in the eye and communicating on this kind of social level. Said simply: Connecting with you is not high on their to-do-list.

It is important to note that there are many people with autism who would reject one hypothesis or the other (and sometimes both). As the saying goes, if you have met one person with autism you have met one person with autism. However, science is slowly providing some answers to these questions.

A study published last November used eye-tracking technology to study how toddlers use eye contact in social situations. The study compared children diagnosed with autism, children with other developmental challenges, and children on a typical developmental trajectory. The results found that the two groups not on the autism spectrum made eye contact that was correlated to the emotional content of the adult in the room. When the emotional energy warranted eye contact, the children tended to make eye contact. The children with autism however, did not change their eye contact patterns based on the other person in the room or their emotional expressions.

It seems that the toddlers with autism made eye contact when they wanted to and it didn’t much matter what the other person in the room was doing.

This would seem to suggest that eye contact differences may be more about social disinterest. Children with autism might not have the same needs for social interaction and the social interests they do have aren’t expressed through eye contact.

There’s lots more to be discussed about this- including the role of anxiety in autism and how that might contribute to discomfort with eye contact. Some have argued that changes in how we use eye contact are not evidence of a deficit but instead signs of changing times. When one considers how often we are looking into someone’s eyes versus a camera, phone, or some other digital device- perhaps our friends on the autism spectrum are a step ahead of the rest of us.

These findings should also encourage us to consider the many other ways love and connection are expressed between humans and to remember that expressing needs differently doesn’t mean the needs themselves don’t still exist.