When my son, Alex, was born with Down syndrome, we quickly connected with the community. We appreciated the connections with families walking similar paths and made friends with the people who get it in a way that even the most understanding friends outside the community cannot.
When Alex was four years old, we brought home a second child with Down syndrome, Ben. Ben came into our home via adoption. We figured we had a pretty good grip on special needs parenting, so another child with Down syndrome was a good fit for our family.
Ben had numerous medical challenges, one adding on to another for years, but all along he had additional developmental and behavioral challenges which didn’t add up to a simple Down syndrome diagnosis. We assumed it was because he didn’t feel good, but even after getting the bulk of the medical concerns managed, we struggled with behavior.
We went for a full developmental evaluation, and after the initial interview, the psychologist suggested an autism evaluation. I brushed off the notion, figuring that he wouldn’t qualify for the diagnosis, but on the long shot that he would, the additional therapy benefits would be helpful. Then, at the evaluation review, we got the official diagnosis of co-occurring autism.
At first, I rationalized the diagnosis, believing she exaggerated the profile to get it, but a few months later our family attended our local Down Syndrome Association picnic, and it was clear to me that Ben was different from all the other attendees with Down syndrome.
Once I accepted the diagnosis I sought out the community. The benefits of a community were life changing with Down syndrome, so I couldn’t wait to find people.
Except, I discovered the community is largely reclusive. There is online support, but as far as parent groups or mom’s nights out, they don’t happen. Today, my hope is to spearhead an effort to get the community together, starting slowly with a local Facebook group. We, as parents, have so much going on, it might take some work, but the value of finding your people makes it worth the effort. Concurrent Down syndrome and autism can be lonely because we just don’t quite fit into either separate community.
If you care for an individual with Down syndrome and ASD, I would love to hear from you! Please connect with me via Facebook (Alethea Jo Mshar) or Twitter, (@leemshar), especially if you have managed to create a local community of people impacted by autism and Down syndrome.
Alethea Mshar is a mother of three children, one typical daughter and two sons who have Down syndrome, one of whom has complex medical needs. She has written What Can I Do To Help, a guide to stepping into the gap when someone you know has a child diagnosed with cancer, which is available on Amazon, and is publishing a memoir titled, Hope Deferred. She can be found on Twitter as lee.mshar, and blogs for HuffPost as Alethea Mshar, as well as her own blog, Ben’s Writing Running Mom on WordPress. She is also on Facebook as Alethea Jo Mshar.
So to begin…what is yoga? More than just postures, yoga originated in India as an ancient science to enhance the well-being of the body, mind, and soul. It is about providing holistic health through physical exercise, breathing, relaxation, diet, and philosophical practices.
The wonderful thing about yoga is that it is accessible and beneficial to every person—old and young, female and male, religious and secular—through disability, illness, and good health. True yoga is completely non-competitive and non-goal-driven and this is what sets it apart from other forms of activities or therapies for children and adults with special needs.
It also does not put a strain on the heart, joints, and working systems of the body. Instead, the yoga postures (called asanas) are designed to stimulate and support the internal organs and processes, to promote a long and healthy life.
Regular practice provides countless health benefits and, in addition, is about bringing awareness to our mental and emotional health.
There are many different forms of yoga—Hatha, Vinyasa and Iyengar to name a few—and similarly, a number of methods have been developed to specifically help children with special educational needs (SEN).
The method referred to in this article is called Yoga for the Special Child: The Sonia Sumar Method. It was created by yoga teacher Sonia Sumar more than 45 years ago, following the birth of her second daughter. Roberta was diagnosed with Down syndrome, and Sonia was told she would have a life of limitations.
However, Sonia began doing yoga with Roberta from infancy, with results that astonished her doctors. This led to Sonia working with other children with special needs and developing a recognized method which became known as Yoga for the Special Child and now has worldwide recognition as the pioneering practice for special needs.
Sumar Method has helped children across the globe with a variety of conditions from autism and attention deficit disorder (ADD)/attention deficit hyperactivity disorder (ADHD) to cerebral palsy, Down syndrome, epilepsy, and so on.
Here is a brief outline on how yoga can help some of the most common special needs conditions:
The key characteristic for children diagnosed with cerebral palsy is that they often have both high and low muscle tone which affects their movement. Learning a sequence of asanas builds greater strength, flexibility, and coordination in the limbs and body. Incorporating forward bends, backward bends, lateral bends, and twists the body moves in every direction working the bones, muscles, cartilage, and nerves within.
Of particular note is that yoga poses stretch and realign the spine, the telegraph pole of the body.
The Spinal Twist pose for example, will create space between the vertebrae, reduce pressure on the discs of cartilage, and relax the nerves that radiate out of the spine. This, in turn, releases muscular tension throughout the body and enhances overall nerve function. Over time, a child is able to develop an increased range of movement and coordination, meaning increased independence.
As yoga works holistically, the practice can improve strength, coordination, balance, respiration, eyesight, and many other key areas for children with Down syndrome.
The genetic condition categorizes with weak muscle tone, and since all the internal organs are themselves muscles, there is a tendency for children with Down syndrome to have weaker internal systems. Through regular practice of yoga this can be addressed and improved. This is one reason why yogic breathing exercises are so beneficial, as they not only improve the respiratory system but also strengthen the internal organs, improving general health and development.
Over time, these exercises will improve the central nervous system’s functioning and impact motor and cognitive development—boosting body awareness, concentration, and memory to have a positive effect on the child’s everyday life and learning abilities.
Joint dislocation is also quite commonly suffered by children with Down syndrome, so working on body strength and core strength is fundamental. Therefore, asanas such as plank pose are of great benefit in terms of strengthening the whole body.
First and foremost with autism, yoga neutralizes and calms the sympathetic nervous system, bringing inner peacefulness. For the child, this means better sleep, better concentration, and better ability to self-regulate.
Soft chanting and sitting postures at the beginning of class are important for children with autism; it supports their sensitivities to the external world by bringing inner balance so they can make the transition to do yoga, as well as other activities.
A key breathing technique for children with autism is deep belly breath. It is very beneficial as their natural breathing is often shallow and fast, and they are often mouth breathers. This means the quality of air is not the same as a child who breathes through the nose, which is designed to filter the air before it enters the lungs.
Building mutual trust and friendship with their yoga teachers is also a fantastic benefit for children with autism. A bond can be developed naturally in a yoga session precisely because the practice is free-flowing and flexible, rather than focused on achieving set positions or outcomes.
The teacher patiently enters the world of the children, meeting them on their own level rather than telling them their world is the wrong one.
For children diagnosed with attention deficit disorder (ADD) or attention deficit hyperactivity disorder (ADHD), the most valuable benefit of yoga is calming them down and improving their concentration and focus.
Again, yogic breathing exercises are highly important to this process. There is a fundamental link between the breath, the mind, and the emotions. All are intimately connected, so by bringing awareness to the breath and fostering calm, controlled breathing patterns, we automatically see a more peaceful and relaxed child.
Physically, yogic breathwork (pranayama) stimulates vital areas of the brain and central nervous system. Regular practice helps the child to relax and focus more and more, enabling the teacher to also bring in practice of deep relaxation, enhancing all the benefits of calmness, awareness, and concentration.
Deep relaxation is an essential part of yoga. In our modern lives of ongoing choice, stimulation, and distraction, real relaxation is often overlooked. This is where the spiritual element of yoga will first appear, as children are given an opportunity to be with their own silences and internal awareness.
For a child with ADD or ADHD, yoga practice can have significant results, increasing capacity for schoolwork and peaceful social interaction.
What makes yoga different
It cannot be emphasized enough that a core aim of Sonia Sumar Method yoga practice is to promote a happy child. It is completely individually focused, and not condition focused. Often, as a child with special needs, physical needs are the primary focus and physical milestones become the measure of his/her health and identity—while essential tools for a happy life like self-esteem and self-acceptance are not considered.
With yoga, the emotional, mental, and spiritual well-being of the child is given as much importance as the physical. This is what makes yoga so unique and life-affirming for children with special needs.
Denisa Nenova is the founder of MahaDevi Centre, the only yoga center in the UK that offers the pioneering yoga therapy Yoga for the Special Child: the Sonia Sumar Method for children and adults with special needs. The center is located in North London and is open seven days a week, currently offering one to one yoga therapy to more than 60 students weekly.
My name is Kaelynn Partlow, and I have been attending the school at which I am currently employed by for the past five years. My journey at Project Hope began with my mother tying my shoes, picking out my clothes and fixing my hair on that very first day of school. I was 14 and didn’t know how life-changing the next five years would be for me. I was diagnosed with dyslexia, dyscalculia, dysgraphia, no working memory, ADHD, autism, sensory processing disorder and visual processing disorder; my academic future looked uncertain at best. My parents were in a state of sadness and frustration.
I quickly learned how safe I was here at this new school. My teacher was kind and encouraging. I saw that there was no escaping the principal’s welcoming hugs each morning, no matter how hard I tried! My classmates and I were a lot alike, in ways that I never imagined would be possible. I couldn’t recall ever meeting anyone else with my same challenges, so it was comforting having classmates who were so similar. My high school class was the smallest in the whole school. Most of the others were elementary classes. I have always loved children, and especially children with special needs. There were so many little friends to play with!
After my second year at Hope, my love for children led me to spend time in my school’s special elementary classes. I developed relationships with a few students who were also on the spectrum. My time spent with them made it easy to see where I fit in.
A full summer interning in the special education classrooms and I was hooked. I felt at ease with this special group. The children understood my quirks and I loved their sense of humor. I returned the following school year to help in the preschool class in addition to my regular high school curriculum. I also participated in some of the training for the staff. I learned a lot about Applied Behavior Analysis (ABA)! That was when I decided that I wanted to really pursue becoming an ABA therapist, but I still had to develop some more skills that would be necessary for employment. Things like arriving on time, self-awareness and eye contact were still difficult for me, even by my third year at Hope.
So my teachers/therapists and I dedicated my senior year to acquire the skills needed to become a therapist. Arriving on time wasn’t just something I “should” do, instead, it became a necessity. I continuously reminded myself to maintain appropriate eye contact when speaking with people at school. I’ve also tried my best to be aware of how I affect others, and try to be open to suggestions. I am constantly learning, and I have had so much love and support along the way.
Since I graduated, I’ve become a Registered Behavior Technician. My hard work paid off! I currently work in a 1st-grade classroom of children on the autism spectrum in the mornings, and I have one on one sessions with children in the afternoons. I love my job!
I still have my unique challenges that my coworkers don’t have to deal with, but I still get a lot of extra support from my old teachers/therapists. Sometimes I feel that some of my challenges actually give me an advantage. I can relate to my clients in a way that no other therapist can. I have an understanding that my coworkers can’t gain from reading about in a book. I can relate to many of their sensory needs because I have the same ones myself. I can pull from my own experience in dealing with sensory difficulties in order to help come up with practical coping mechanisms that fulfill the need. I understand the feeling of overload in a crowded situation. I think that being able to understand and relate to these challenges have made me a better therapist.
I wish that I could’ve had the opportunity to receive ABA therapy when I was younger. I feel that if I got therapy, I wouldn’t have needed to learn so much as a young adult. But like they say, everything happens for a reason. I’m very thankful for my job and the fact that I still get support as an employee. I love being able to see children progress and grow in the same ways that I have.
Product:Speech Blubs is a video- and voice-based app constructed with the purpose to boost children’s imitation and speaking abilities through play.
“I’ve had it [Speech Blubs app] for less than a week and he’s already saying more!”
Cost: $9.99 monthly subscription fee
What’s special about this app is that it uses videos of real children’s faces and the latest technology (facial and voice recognition) to engage children in (almost real-life!) face-to-face interaction. It progressively encourages children to generate new sounds.
This new app is based on decades of scientific research on mirror neurons and video-modeling (teaching method). Experts on speech delay, sensory processing disorder (SPD), Down syndrome, and autism spectrum disorder (ASD) report it could be one of the most outstanding, upcoming tools that promotes the stimulation of sound ever designed.
This is Daniel, a seven-year-old boy with severe cognitive delay. When he started using Speech Blubs a year ago he was nonverbal. Using the app in therapy was the first approach that made him pay attention. Soon after he started making first sounds and using them to communicate. His parents are reporting that he’s sometimes mimicking the kids from the app all day long, even before bed, repeating everything that he saw and heard in this app. It’s his favorite activity, and after months of daily practice, he mastered all the practices; at the moment he likes the lion and the airplane best, and also the horse and tractor are quite amusing to him.
Another parent in the reviews of the app says:
“My five-year-old on the spectrum typically won’t concentrate on one activity for more than a few minutes and is at least two years behind his typically functioning peers. He requests to play the “animal game” (Speech Blubs) and mimics the children. I’ve had it for less than a week and he’s already saying more!” @Brithor27, App Stores
The Speech Blubs app has caught a lot of positive attention from speech and language professionals. App developer (Blub Blub, Inc.) claims thousands of therapists are already using this app in therapy. The concept of modeling other children’s behavior has proven to have a high success when it comes to overcoming speech delay.
With more than 500 fun and educational videos, the app also takes on the nature of being a handy storytelling device for parents. The children do not only progress faster, but also enjoy practicing their speech more. Try it out with a seven-day free trial, and afterwards the monthly subscription fee is only $9.99!
Children believe this is fun time with their parents and buddies from the app and don’t even realize they are working on speech!
In regards to better understanding autism, it will help if you think of the human mind as a delicate tuning fork. Hit the fork with the right amount of tap and it will resonate in harmony, but bang it too loud and it will create dissonance inside the mind, especially for the person who dwells in the most sensitive spectrum of all.
It is my contention that the autistic eye is suffering the “collective dissonance” of the society around it, and in ways, I might add, that no one to date has yet factored into the total equation. As a man on the spectrum myself, I would very much like to share some of my views with you, in the hope that it will shed some much-needed light on the delicate subject of autism.
For the sake of expedience, I will not quote, nor will I name, all the major philosophers of thought that have helped shape my own mind. Suffice as to say, there have been many. Kant, for the record, is my favorite and most trusted friend on the matter of the inner eye, I might add. I only state this because I feel it is important that you understand the true weight of the mind behind this text.
For the record, I am a savant. From art to maths, I channel it all, and I cognitively occupy, or rather thrive in, by degree, a nine-dimensional abstract universe. Of course, it is hard for me to see clearly in this abstract field as you can imagine, as I am only a very early “next stage fish,” in the meta-pond of things, if you will, thus, my ideas of its speck are inchoate at best, obviously. What else could they be? Still, the dimensions I occupy give me insights that have value. So if you will, please continue…
The first thing I want to address is language, especially in regards how we all resonate with words when we talk to one another. It is of utmost importance that we truly take note of the fact that we are a resonating species, thriving in a field of resonating factors. Words shape our ideas/positions and when we align ourselves with words that are conveyed to us by another, we resonate in the structure each word builds in us at an intuitive level. This is precisely why positive words can create feelings of harmony in a person, and negative words in turn can create a resonating field of dissonance.
The tuning fork in my head is always resonating with the world. It hurts for me to sit with the collective head, because the head is ontologically out of tune with itself. It is like I am a guitar trying to tune myself in, but in a room filled with so many billions playing out of tune, it is hard for me to plateau out mentally. Think about how that affects my delicate mind on a daily basis. It is precisely why I hide.
Let us consider what is fundamentally happening in the human mind on an intuitive level, when we employ our words to relay information to one another. When we use words, we are in-fact aligning the reader/listener with a set of cognitive coordinates. Right now even, I am simply coordinating your inner mind around this very notion. And once I have coordinated the person I am addressing into place, they will either resonate with what we I am saying or not, but the main thing to remember is that it all creates a state of resonance in us either way.
Words arranged in the right manner are effectively coordinates arranged in the right manner. If one wants to relay a piece of information on a subject; any subject, one cannot simply pick random words from a bag and hope the text will reach the recipient. One has to choose the right words, obviously, and relay them in the correct manner, obviously.
Words affect me on a daily basis, and in ways most can’t even fathom. The bark of politicians talking in small shapes for example, or just the fart of gossip. Or what about the ill-mannered word structures that form the bastardized mental constructs of religion and class. Talk about a world that has wander off the bed of axioms. Or what about the endless void of redundant debate? A strangled network of solipsistic strands. I’m not sure. Anyhow, it all makes me resonate the wrong way, because I always end up in a state of dissonance if I am around it. It is why I hide.
Whether you are ready to hear it or not, the world at large is not wired up correctly to the correct constructs of language. Allow me to explain. First off: forget the simple surface words/coordinates we all use on a daily basis just to intuitively align ourselves with the simple things in life, such as buying food, or chatting to a friend about things like music or books. Instead, I want you to consider only the words we might use when it comes to how one relays the core tenets of an ideology.
It is important that you remain Impartial when I coordinate your mind around this particular aspect of humanity, as your bias on the matter will do nothing but contain your mind in a clot of idol cogs. I want to address the class system, as it is a spectrum all can relate to. Not the overall big point I want to make is this – for centuries, people have intuitively defined themselves around three different class categories, and yet not one single aspect of class ideology can be predicated to a fixture of reason. This is why I hide.
The class system is a set that essentially aligns people to three set categories, thus, if one is to define humans in such a way, then one must by definition; define three separate categories of people, which of course they can’t. As I have stated, no reasonable fixture holds the notion of class to a sound round in the mind, so it can only be said to exist in ideological terms, around a language set that has been bastardized.
As Wittgenstein stated: “Anything outside the correct categories of inferential thinking is nonsense.” Idol cogs fill our ideological networks, and when we extend our minds eye through the medium of words, the cogs play out. This explains precisely why the world at present is stuck in such a large kettle of rattles. Folk simply refuse to look beyond the face of words and think with them for the constructs they are either indirectly, or directly, attempting to align in everyone else with.
The upshot of it all is: people from all walks of life are going to have to consider in the most complex way, how what we say, and how we say it, might be resonating with everyone else. I am lost in a world of crooked tongues. Small talk hurts my inner eye, as does the talk of greed and even the regimented intonations of psychiatrists leave my ear ringing a screech. It all sounds like a blackboard screeching in my ear to be honest. It’s why I hide.
Words are coordinates that shape structures in the mind, and if the structures are imposed in the wrong manner, the autistic eye will suffer the consequences more than those in the “neuro-typical” field. For the record, there is no fixing autism, as it is an evolutionary shift away from this antiquated paradigm. But as we shift, we are stuck with what is making noise around us, and there lies one of the biggest problems we face as we try to become in our own heads.
Yap is a whirlwind of professional creativity, touching down on music, painting, fiction and essay writing, public speaking, and filmmaking with a profound sensitivity — his harmonics and an uncompromising eye for controversy challenging the mind’s eye at every turn. From a three album, a decade-long international touring career with One Minute Silence to the formation of his underground cult band Pink Punk and, most recently, the return to his Irish roots with the acclaimed Airtight EP, music and rhythm emit from every fiber of Yap and his creative flair. His first novel, The Pond, self-published on Lulu, deals with the frequencies that ripple through time and the human condition while a second, The Kingdom of the Blue Apples, currently in development, takes the child’s fantasy adventure into stratospheric themes of connectivity and resonance. On canvas, Yap merges cubism, abstract expressionism and fluid modernity with themes of femininity, fertility and the ever-present connectivity in the fibers of the human existence. Live, on stage, field or street simply has to be witnessed, a feral force of passion, timing and intricate wordplay. Where next for this whirlwind? Wherever for the hungry consumers of his multifarious art.
As families plan for the secure future of a loved one with autism, it is commonplace that the plan is updated due to changes in the family situation or in the life of the individual with the diagnosis. For example:
If your loved one begins working, the new income will need to be factored into future planning, and the changes that brings to government benefit qualification must also be factored in.
Living in the community versus with family members will change the financial need, and the plan must be adjusted.
A future chosen guardian is now no longer able to serve as guardian due to their own situation, which necessitates a change to the guardian choice.
A Corporate Trustee for the Special Needs Trust changes trust minimums and how they accept new trust accounts, and your family no longer qualifies under the new rules. This means the family must change their trustee choice.
Parents have to move from area because of job change.
Parents have additional health care needs themselves that must be considered.
I am sure you can think of even more.
Not only does family life move fast and change come swiftly, but so does the macro-landscape. It is the changes in the macro-landscape that families must keep abreast of because it is these changes that many times will require a change to the individual family plan. For example, there have been significant adjustments in choices in the past three years when it comes to planning for the future as well as others that continue to be discussed:
ABLE accounts are now available as savings tools for individuals with disabilities. These accounts also come with certain rules that need to be understood so that families are not surprised at a later date, and so that these accounts are used properly without making mistakes.
The Defense Authorization Act now allows a beneficiary of a military pension to be a specific type of Special Needs Trust so that the child of a career US military professional can continue to receive the Survivor pension into this specific Special Needs Trust without negatively impacting his/her qualification for other government benefits.
Under a law passed at the end of 2016, an individual under the age of 65 with a disability under can create his/her own Special Needs Trust. Previously, Special Needs Trusts could only be created by a parent, grandparent, legal guardian, or the court. This again allows additional flexibility, especially if an adult with a disability who is his/her own guardian receives an inheritance that would cause them to lose his/her necessary government benefits. Now he/she has an option to create his/her own Special Needs Trust, transfer the inheritance to the Special Needs Trust, and save his/her life-supporting government benefits.
HealthCare reform has not been resolved. The discussions continue to include cuts to Medicaid and services to those with disabilities, which would mean major changes to the planning for your loved one. With that in mind, planning should now consider changes to government benefits so that your loved one’s plan and lifetime support needs are still provided for even if government benefits and services are reduced.
When the pace of change is considered, it is critical that families stay on top of these changes or secure a team of specializing professionals that they rely on to keep them informed and keep their plan up to date.
For more information on how to prepare for the future, be sure to contact a financial advisor who specializes in serving families with special needs. A Special Needs Plan is driven by what is called Unleash L.I.F.E.—Lasting Independence For Everyone. This is accomplished with education, action, and support in the creation, implementation, and continued monitoring of a specifically designed lifelong and integrated plan for your family of parents, caregivers, your loved one with special needs, and his/her siblings.
Ryan F. Platt MBA, ChFC, ChSNC is a registered representative of and offers securities, investment advisory, and financial planning through MML Investors Services, LLC, member SIPC. A Special Needs Plan is not subsidiary or affiliate of MML Investors Services, LLC, or its affiliated companies. This article is not a recommendation or endorsement of any products.
Hello, my name is Zachary Stoner and I have autism — my autism is mild but it still does affect me.
Some of the symptoms that I have are I can lose control or concentration of what I do/ and generally get carried away.
I used to hit my head on walls and with my own fists when I got angry; this was sheer frustration.
I don’t understand things very well and need specific instructions.
Now I know that you are thinking, “Oh, that must be horrible,” and yes, it has been, but I feel I am through the worst now.
The advantages are it has given me true friends who understand me and like me for who I am and support me. It has given me an amazing imagination that doesn’t work like yours, so I have been told.
I’ve also learned to only look at something for just a split second and analyze it in my brain like a computer.
If I was given the option to get rid of my autism…I wouldn’t ….why would I?
I have advantages over most people and I am stronger mentally and I have learned how to give emotional support.
When I was younger, from about six, I would always say “I hate my autism, I wish I never had it!” But now I realize that my autism has made me who I am, why would I change who I am?
If you have autism and it is troubling you or anything else, then seek help and find out how to fix your issues and I promise you, you will grow over any obstacle, it just takes time and support.
I have had and still continue to get support from Child and Adolescent Mental Health Service (CAMHS), my school, and parents.
Zachary Stoner is 15 years old. He was born in France but his parents returned to the UK when he was three. Zachary was finally diagnosed with autism, Asperger’s and social anxiety at around seven years of age.
Zachary is currently year 11 at Tadcaster Grammar School where he says he is lucky enough to get a lot of support from their SENCO team and a few close friends.
His hobbies include gaming and YouTube where he creates videos that showcase what games he likes and how to play them. Zachary also takes suggestions to see what people like and don’t like so he can improve his skills in video making. He also shares a passion for animals like his mother who breeds and shows dogs.
Zachary’s YouTube channel is redstoneza stoner (not suitable for young children)
Patrick, now 27, is a kind, candid, and wickedly funny young man. I counseled him beginning in his teens, and was later able to share his story in The Loving Push, which I coauthored with Dr. Temple Grandin.
Patrick and I spoke recently by phone. We hope some of his story might be useful to you.
Patrick was diagnosed with autism spectrum disorder (ASD) as a child. As a toddler, he was unable to distinguish himself from objects, and had screaming fits from sensory overload.
He was also obsessed with cartoons and commercials. No one realized that while watching them, he was memorizing and consciously practicing how to precisely place his tongue and constrict his throat to mimic his beloved characters.
After high school, Patrick floundered, hating, and then quitting college. He became depressed, and retreated to his bedroom and endless video games.
Then one day, kidding around in the car with his aunt Mary, he spontaneously burst into “Maria,” the song from West Side Story. His aunt was stunned— his voice was strong, pitch perfect, and beautiful!
A new and often challenging journey began that day. Patrick tried voice lessons (he didn’t much like them), an improv class (ho-hum), and voice over coaching (which he eventually loved).
Fast forward to today: Patrick is back in voice classes, submits voice over auditions to agents, and has booked a few paying jobs.
Dr. Moore (DM): I’d love to talk about your journey and hear about any strategies that helped you. How about school?
Patrick: I did NOT like my time in school! I was bullied. In retrospect I would tell parents to tell their kid to avoid reacting to the bullies. Do not become a spectacle— it is just for their amusement.
I would also tell parents to inform the school of their child’s condition ASAP to avoid complications. The teachers and staff might not recognize what your child needs, so it’s better if they have the information beforehand.
DM: Let’s talk about interacting with others. I remember when you wouldn’t join gatherings, you’d sort of hide in your room. And you didn’t participate in day-to-day household tasks.
Patrick: I used to hide away. I’m still not a very big socializer. My advice for being around people is to first watch and listen. See how others do something before you try it.
I think it is useful to have dinner together as a family. I know a lot of families don’t do that anymore. But it will get you more prepared by practicing talking to family members.
DM: What strategies are you using these days to deal with difficult feelings?
Patrick: Mostly identification. It’s hard when emotions come up quickly, but if they come up slower it helps to identify them and then take a deep breath. Then I can go over the situation in my head and see if it’s rational or not.
Belly breathing for more air helps. I deep breathe three times.
I’m still pretty closed minded, but definitely not as much as years ago. I still get depressed and that is the real problem. My depressive, negative thoughts are what give my anxious thoughts their power. Otherwise, the anxious thoughts wouldn’t have anything to hang onto, and they would just be deemed irrational.
DM: You put that really well! Do you have any thoughts about medication to help with depression or anxiety?
Patrick: I think you have to experiment because there are so many kinds. Pay attention to side effects. You need outside observation to determine if a medication is helping. A lot of times there aren’t drastic changes, but there are still important changes. I still feel it is annoying to take medication. I don’t like having to remember to take it every day.
DM: I’m interested in what it’s like for you now to try new things.
(Note from DM:) It’s been a struggle for Patrick to try new things and grow his confidence. He used to resist eating new foods, tackling household tasks, and learning to drive. But even after failing his first driving exam (due to nerves), and then swearing he’d never try again, he did and passed! He lives with his parents and now contributes to household chores, including cooking. He’s now quite willing to try new foods.
Patrick: I do best when someone explains step by step and when I have visuals. If
I don’t have visuals, it becomes very abstract and I’m not as sure of what I am doing.
Cooking is an example. If a parent wants to teach their child to cook, a good starting point is with what they like to eat. For me, it helps to gather all the containers and food and put it in front of me before I start. It takes more time but is a better guarantee that I won’t forget something later.
DM: You found a way to develop your special interests and talents into a vocation. Could you talk about how this happened and pass on any advice you have to parents?
Patrick: You have to let a child experiment with their skills and see if any are transferable. Like the voice acting I found totally by accident. I belted out “Maria” as a joke. I never paid much attention to my voice before I started voice acting. Your career path could depend on something you don’t even realize you are doing!
But that takes outside observation. In my case, it came from Aunt Mary. She liked my voice and took me to a singing class. I didn’t take to it. So then we tried something different. She found a voice over coach who kept telling me I could do this, so finally I thought, “maybe there is something to this.”
I resisted it at first. Maybe because it sounded like a fantasy career that only the extremely lucky can do. That kind of thinking can really hold you back!
DM: It’s so great to hear how much easier you are on yourself these days! That’s a really big change in perspective. Can you tell us what you are doing with your career these days?
Patrick: Right now I’m taking voice classes at a place in Sausalito.
(Note from DM): Sausalito is north of San Francisco; about one and a half to two hours from where Patrick lives. His Aunt Mary rides with him, but Patrick drives.
Patrick: The instructors there are sometimes agents. I’ve impressed some of them and now I have an agent. I booked a few jobs. I’m also working with an opera coach on breath control. And I had my first time in a professional voice booth.
DM: What was that like?
Patrick: It was pretty simple. It was rainy that day; I walked in, signed a confidentiality agreement, waited, and then went in. There was a director talking to me over a phone via a telephone patch.
I was a little nervous, but I’ve had practice taking direction before and figured if I did something they didn’t like, they would direct me out of it.
DM: What has been the hardest thing you’ve tried recently?
Patrick: We had an assignment at voice class where we were supposed to bring in a script to read that would show our versatility. I couldn’t find one, so Aunt Mary said to make up my own. I was really hesitant. I felt vulnerable, like I was taking a bunch of safety nets away. I was afraid of exposing myself and that others wouldn’t like it and then that impression would stick with that person.
DM: How would you like to talk to yourself in similar situations in the future?
Patrick: I would practice, and get used to the idea of doing it. Now I’m really glad I did it because the person in charge of class that day was an agent from LA and she really liked it. She said she would start giving me some auditions. And she did already—I got some a week or two ago. I finished one for a Build-a-Bot, and one for a hamster toy.
DM: Just two last questions Patrick. What is the biggest advice you would give to parents, and what advice would you give your younger self?
Patrick: I would tell parents “Don’t be afraid to push your kid to try new things.” Parents should assert that their child has to try something new. Don’t give the kid an option. But find something that’s not a long-term commitment. Don’t sign them up for summer band camp! Take them to a music store and let them try an instrument. But they have to try it at least a few times!
For myself, I’d say, “Keep playing with voices and don’t overreact so much in school. And try salmon as soon as humanely possible!”
Debra Moore, PhD, is a psychologist who, prior to retirement from active practice, worked extensively with children, teens, and adults on the autism spectrum. She coauthored The Loving Push: How Parents and Professionals Can Help Spectrum Kids Become Successful Adults (2016) with Dr. Temple Grandin. She contributed two chapters (one coauthored with Dr. Temple Grandin) to The Nine Degrees of Autism (2015) and wrote the chapter Internet and Gaming Addiction in Youth on the Autism Spectrum: A Particularly Vulnerable Population in Internet Addiction in Children and Adolescents: Risk Factors, Assessment, and Treatment (2017). She also facilitates the groups “Autism Spectrum Across the Lifespan,” and “Autism Spectrum HELPING HANDS Mentors” on LinkedIn.com.
My 8-year-old son with autism loves his little brother and wants to play with him, but he has difficulty sharing, is overly-affectionate, and his screaming is so off-putting. How can I encourage their relationship as siblings?
I love that you want to help foster the brotherly bond between your boys! It can be so hard for kids to understand why their special needs sibling doesn’t play with them the way they would like them to. And helping kids with autism develop appropriate social interaction skills is no easy task! But here are some things you can try:
1. Social Stories!
Social stories can be used for any type of situation and can be perfectly tailored to your child. For your son, it can focus on using his calm voice, keeping his hands to himself, asking for hugs (instead of just giving them), turn taking, sharing, etc. Use specifics like your sons’ names, the games they play together, and what will happen if he uses his calm voice and takes turns (i.e.: brother will feel so happy, mommy will be proud of me, I will earn a cookie, etc). Use fun pictures and read the story to him before he plays with his brother. You can even read it multiple times per day.
2. Prompt sharing.
Start very small, maybe just five seconds. Use a toy or item that your son likes and make a game of sharing. Prompt him to hand it to his brother then count out loud “1..2..3..4..5, OK, your turn!” Once he’s able to do small lengths of time you can increase it. Do this very gradually.
3. Practice appropriate touching.
Your son is expressing affection, which is great, but we need to teach him how to do it appropriately. Practice gentle hugs; soft and light. Teach high fives or other forms of touch which may be less scary for your younger son.
4. Find mutual interests.
If both boys are interested in Legos, for example, use that to help strengthen their bond. Comment on the similarities between them. “Wow, you like the red Legos? Big brother does too!” “Whoa, did you build a tower? Can you help add a red Lego to the top?” Point out what makes them the same, and work to find activities they will both enjoy.
5. Provide other screaming opportunities.
Encourage activities where you son can appropriately scream or yell. Sounds weird, I know. But if your son engages in screaming anyway, let’s find a way to make it more socially acceptable. For example, tickling him, bouncing on a trampoline, pillow fights, etc.. By finding activities where both of your sons can be appropriately loud it may help your younger son be less annoyed by the screaming.
6. Create brotherly traditions.
Come up with routines the boys can do together. It can be as small as singing songs in the bath together, or racing to the front door whenever you get home from an errand. Maybe it’s something they do every day, or maybe it’s something they can do every week. Perhaps something like their favorite dessert on Friday nights. Whatever it is, make sure it’s something BOTH boys really enjoy.
I hope these tips help. For more ideas, you can seek out social-skills groups in your area. Oftentimes, siblings of special needs children can participate in these groups and serve as typically developing peer models. Keep up the good work, Priya!
Angelina works as a Board Certified Behavior Analyst, specializing in assessing and treating children and adolescents with autism, down-syndrome, and other developmental delays. She began her career in Applied Behavior Analysis in 2006, following her youngest brother’s autism diagnosis, and has since worked with dozens of children and families. She also writes a blog about her experiences as both a professional and a big sister. Her brother, Dylan, remains her most powerful inspiration for helping others who face similar challenges.
Encouragement speaker Derrick Hayes gives an AUTISM interview by asking six questions through each letter in the word “autism” to give readers an insightful perspective from parents, experts, entrepreneurs, and other leaders in the field.
Today’s AUTISM Interview is with Nancy Wells, a licensed professional counselor (LPC) who founded AbleTalks, a new approach to education, career development, and independent therapies for adults with autism and other intellectual disabilities. AbleTalks offers what it calls “classes for the next stage,” or independent special education for people over the age of 21.
AbleTalks uniquely and effectively eliminates the “drop off point” experienced by adults with intellectual disabilities. It encompasses independent study, career counseling, socialization, and speech therapy, and the results have been both powerful and empowering. For more information about Nancy or AbleTalks please visit https://www.facebook.com/AbleTalks/ and https://abletalks.org/
A is for Awareness – When and how did you first become aware that something was different?
My kids were the classic normally functioning children until 18 months, and then they lost all language and developed sensitivities. They began having communication and social issues to the point where they could not make it out in public, and they did not speak again until they were four or four and a half years old. With our oldest child, I was aware something was not right at about 18 months, but we did not take action until she was about three years old. With our youngest, we took action when she was two years old.
U is for Unique – How has this experience been unique for you and your child?
I see the world completely differently. I have learned so many life lessons, and I have questioned so many things about our social norms. My daughters are the strongest young women that I have ever known, and they have brought out the best and worst in me. They changed what I thought parenting was going to be, and it is so much better.
T is for Tools – What tools are there now that were not there in the beginning that could help other parents?
Right now, my children are in their twenties, and 20 years ago the tools were institutionalization and isolation. Now I work with kids at schools and I’m a licensed mental health therapist working with kids and families in very remote areas.
With AbleTalks, my focus is to work with the issues of young adults who are over the age of 21 to address their needs. At age 21, you lose all of the publically funded programs, so I started a program that is tuition-free because even if you have money, there are not a lot of choices, but if you don’t have resources, it is a wasteland.
Able Talks is unique because of its focus on the population of 21 and up, which has not received the lion’s share of attention. AbleTalks is a new tool in the toolbox, and what we are doing is not being done anywhere else. This was originally supposed to be a fun summer project, but I saw how fast my students were learning and expanding and decided that we just had to offer it to more people other than our small circle.
I is for Inspire – As a parent, when you look at your child or children, what inspires you?
I don’t know if I am answering this right, but this is where I am now— I’m inspired to change the whole planet. I’m going to be here for my child I hope forty more years, but in that time it is going to take every day to prepare her to live a life of independence, to find what her life will be, and to let her have what she chooses in her path. But also I want to change lives everywhere else, so that her efforts will be met with other efforts. I want to make our planet safe and understanding and aware, and I spend every minute of every day doing that.
S is for Support – Are there things you struggle with or have struggled with, and what types of support do you still need?
I’m widowed, and many parents of children with autism are single. That’s not easy. And then we deal with what they call the “drop off point” when school is out and therapies are no longer covered by Medicaid or private insurance. Autism is isolating, and the older you get the fewer opportunities you have. So the support I need is for more programs to meet the needs of adults with autism. As AbleTalks has grown, we’ve seen families whose children have college degrees but are still unemployed and very isolated. So we’re working with a broad spectrum of young adults who all face similar challenges that we are trying to address.
M is for Manage – What keys to success can you leave with parents so that they can better manage their day to day efforts?
If we’re talking younger, we just tried to get through the day. We would set goals to get them into kindergarten and then into third grade. Today we are talking about estate planning, location, socialization, continuing education, and what we do when we die. To manage it is really hard for me, but we have to encourage parents to think about what’s next. I speak to parents about what’s next because it is coming.
Derrick Hayes is an author, motivational speaker, and paraprofessional with students with autism in the Muscogee County School District in Columbus, Georgia. For contact or booking information visit www.derrickhayes.com, email email@example.com, or call (706) 615-1662.