EMPOWERING CAREGIVERS WITH MINDFULNESS

In MINDFULNESS by Seema8 Comments

I am a mother of 16 year old daughter, who has autism, she is nonverbal. My clinical background is from field of Occupational Therapy. I am also a Reiki and meditation teacher. A lot has been done in field of autism, since the year 1999, when my daughter was born and today, we still don’t really know how to effectively help our kids and families. I will address an important piece of this puzzel which is gradually consuming families affected by this puzzel called autism. And that is, the stressors that caregivers, parents go through in day to day lives and how mindfulness can play an important part in overcoming them.

This is based on my experience of working with numerous behavior coaches, therapists , doctors, psychologists and than coming back home to my most wonderful and effective teacher, my daughter.

Autism spectrum disorder (ASD) and autism are both general terms for a group of complex disorders of brain development. These disorders are characterized, in varying degrees, by difficulties in social interaction, verbal and nonverbal communication and repetitive behaviors. Most effective treatments at present include behavioral therapy, medicines, mainly psychiatric meds to treat the symptoms, or both. As we see above, both address one thing, that is mind.

Mindfulness comes from the word mind. This mind cannot be touched by meds or therapy. Why? Because our mind is often chained to habits, that we have formed due to our upbringing, society, fears, worry, anger, preconceived ideas, etc. To touch this mind, a change is needed. This change is really about a way of living. It is about our state of mind. Only than we can see our kids and our lives in an open spacious manner so we are not limited to what works, what does not work and not be afraid to challenge our fears.

Care giving and parenting often can be stressful, something all parents face at one time or others, but studies show that parents of children with developmental disabilities, like autism, experience depression and anxiety far more often. In the year 2009, Marsha Mailick Seltzer, Ph.D., at the University of Wisconsin in Madison, found that mothers of adolescents and adults with autism experience chronic stress comparable to combat soldiers. Another study concluded that parents of kids with autism spend on average of two hours more a day on care giving compared to typical kid’s parents. Stressors can be many depending on the child and parents needs but some of the biggest stressors for parents include social isolation, guilt, fear grief and anger, uncertainty of future, just to name few.

Often we are so oblivious to daily day to day stressors. And overlook or neglect especially when we are parenting and caring for special need child. By practicing mindfulness, we ourselves can learn from our kids as well as support ourselves and them in this maze of life. Change is about unlearning things we thought we already know and it is the first step in learning. Every time myself or any of the therapists thought they got the key to my daughter behavior issues, she proved them wrong! The phrase that I am very familiar since the time I came to know she has a label-is. Your daughter does not fit the typical mold of autism. Yes, every child is different yet the stresses of parents and caregivers are similar because we all are interconnected and share similar values of caring and parenting. No matter which part of the world we belong to. Mindfulness has a large part to play in helping all caregivers/parents learn from their experiences with kids; even the challenging ones.

Mindfulness connects you to, what I call your mindful teacher within. That becomes your guiding force when faced with difficult decisions. When the stress of continually being there for our kids is high, we can become overwhelmed by our care giving responsibilities and run the risk of burning out and then it becomes increasingly harder and harder to be there for them and we run the risk for feeling guilty. I cannot give you tea, if I don’t have the tea myself. This expression I have heard from my teacher so many times and it is so true, we cannot make our kids feel safe and centered within themselves if we are not stable ourselves. This stability is about mind.

Usually, caregivers or parents are given recommendations to draw boundaries, meeting our needs, relaxation, special support, healthy living etc. These are all wonderful advices and easier to do for a professional but no so much when you are caring for your loved one like your own child. For starters, we cannot do some of these things in presence of the person we are caring for, it has to be done in our own time and that is what most of parents don’t really get.

One major and important aspect that is overlooked and not taken care of is how to remain in the presence of the pain and suffering that we see in day to day lives without becoming overwhelmed. That is where practice of mindfulness, self-compassion and groundedness comes into the picture. The reason is very simple. We cannot escape our day to day reality and empower ourselves so we can empower our kids and then our society.

Although the term compassion fatigue is well-known, some psychologists are starting to argue that the term should be changed to empathy fatigue. Empathy can be defined as emotional resonance, feeling what others are feeling. The problem for caregivers is that when we’re in the presence of suffering, we feel it in our own bodies. The neuroscientist Tania Singer examined the difference between empathy and compassion in an EEG study of Buddhist monk Matthieu Ricard.  She asked him to listen to recorded sounds of a woman screaming, with the specific instruction to feel her distress but do nothing more. The pain centers of his brain were very active and he said he found it excruciating. Then Dr. singer asked him to engage in compassion meditation, and while his pain centers were still activated, so were the neural networks associated with love and positive emotions. This completely changed his experience and allowed him to be aware of the woman’s distress with equanimity and the good feelings of an open heart. The implication for caregivers is that we need to generate lots of compassion, for both ourselves and the person we’re caring for, in order to remain in the presence of suffering without being overwhelmed.

Because of the intense sensory issues experienced by autistic children, they are often prone to violent tantrums. There nervous system could be overloaded and parents often cannot place a finger what is happening. That is the time, as a parent and caregiver we need to first sooth ourselves with kindness and compassion. You did not do anything wrong. Many parents with younger kids, where the disability is not very obvious, can tell you, many incidents where their kids might be lost in a busy grocery aisl and strangers giving strange looks because they thought you were not disciplining your child properly. That is the moment as a parent, to give yourself that self-compassion that you are not receiving from others. Understand that you are human and doing the best you can rather than beating yourself with criticism. In short, self-compassion is the key elements when we start to practice mindfulness. It helps us in the balanced emotional mind state needed to deal skillfully with whatever new challenges confront us daily. And we can only do this when we are mindful.

My daughter is nonverbal and although no physical deficits she is dependent for her needs due to learning deficits. I embraced mindfulness and meditation several years after her birth, during that time I was struggling with depression. As I progressed and moved forward in my practice, life with my daughter started to become more fluid and fruitful. With all of the challenges presented with my daughter, I can honestly say that this practice has been my saving grace. I’ve had periods of anger and deep frustration but never to the point of sheer depression or hopelessness. Every time I felt like I was at a point of no return, it always pulled me forward with new direction, hope and perspective.

That is why I am writing this today and why my mission and vision is to show parents like myself, who have kids on the autism spectrum, with learning disabilities, with emotional or other physical challenges, how amazingly important and altering this practice can be. To elaborate in detail, I am listing below how mindfulness and compassion practice can help them and kids in day to day life:

Letting go labeling and judging
Autism is a spectrum. It is not just spectrum of traits or behaviors but a spectrum of energy. And, in fact we all are part of this spectrum of energy. We breathe in it, we live in it, but we have our own unique experience of it. Kids with autism also has their own unique experience in this spectrum like everyone else. But often, we are quick to label, judge these kids and without realizing start to limit their potential due to that labeling.

We see autism as a negative thing. Something we have to fix. In effort to fix it, we start to pull or push based on our preconceived ideas based on how they should be or not and in doing so we forget and totally ignore that they are unique individuals. What happens than? We start to resist and fail to see their strengths and uniqueness because now we are judging them based on our own set criteria. If we let go of labeling, would we let go of judging? From a behavior therapy perspective we can than start to see clearly new and innovative solutions and able to utilize those strengths and expand from it so we can bring the maximum potential for our kids.

Acceptance
What if we start to accept their autism? What if it is OK to have autism? Acceptance! No, it doesn’t mean we don’t have to find help, don’t have to do research. It doesn’t mean we have to just sit down and feel defeated. It means that we can now start to focus on adapting the environment, our thinking lives, to some of the needs children with autism have. Acceptance means we start to see things clearly as they are, and let go of things which are barriers in the growth of our kids. Wouldn’t that than create a society where people are tolerant and normal when they would see a child who doesn’t fit the norm. Often parents feel intimidated to take their kids to social gatherings or crowded places due to that. Practicing mindfulness and meditations helps us to start accepting our situation and kids.

Clarity
When we let go of labeling, judging and accept things we start to have clarity, so we can see what our kids are telling us. Our kids are our most important teachers and they are talking to us all the time, even though on surface, the words or behavior don’t say the same things.

With clarity we start to see what our kids are telling us when they are screaming on top of their lungs, or when they go around and snatch that candy from a stranger, when they are pulling their hair off their scalp or biting their hand off. In language of behavior therapy you start to see clearly the function of the behavior so you know how to act and be there for the kids to ease what is happening in the given situation.

Releasing guilt and self-compassion
Going day in and day out with some times extreme behaviours and caring of our loved ones can leave the parents very exhausted. An exhausted mother snaps and shouts at her child because of his or her behavior. This is followed by feelings of guilt. Mindfulness helps to release these types of strong emotions more peacefully by acknowledging the stress that we have been under. By acknowledging, releasing feelings of guilt is easier and it’s easier to be kind to ourselves. It’s okay to cry, it’s okay to take some time out, it’s okay to be not perfect and most importantly its okay, when others doesn’t understand what you are going through and judging you.

Being Present
With mindfulness we start to become more present, and during all the challenging behaviors, it will start to help us respond differently and more appropriately because now we are fully present with them.

As a parent, teacher and therapist we can see when the child has a tantrum. We can see better when they are stressed and unhappy but don’t have the words to articulate how they feel and how it creates more frustrations. May be it is the environment which is over stimulating or may be they just want your attention. We can then either react to this tantrum or use our mindfulness skills to help them out of the tantrum by tuning into their needs. Transitions are often hard for kids and when we are fully present we see the signs of anxiety in them and take actions accordingly.

Patience and setting boundaries
Being more present in day to day life, being with them fully, understanding their needs and our needs start to help us to be more tolerant and patient, or in short help us on how to communicate clearly to our kids, in nonverbal and verbal language, and setting boundaries. We can only set boundaries and have tolerance if we know what is happening in the given time and place. Only than we can take an appropriate action, and be in control and fully aware of ourselves and suroundings.

If we are stressed or off-balance, children with autism sense this energy and reflect this back at us through their own stressed behaviors. Thus it is very important to be centered within. It is not an easy task to do always especially when we are in middle of a challenging situations. Therefore practicing mindfulness and meditations gives us an anchor all the time to rest on.

Be a mindful teacher within by learning from your kids
There is no fixing, there are no mistakes, only learning. Learning mindfulness will help you tap into your mindful teacher within; the intuitive and creative mind that offers solutions to the situations you face. Your mindfulness practice helps you see that these children are signposting you towards more creative and positive solutions; to change your way of thinking.

We are being taught just as much as we are teaching. Our habitual patterns of parenting that we so unconsciously have inherited reflect back to us by our kids and their resistance to us. Their resistance to us in reality is a reflection of our own inner resistance and lack of self-belief.

Flexibility
The thoughts and feelings generate perceptions that can either enable or disable our kids and ourselves. If we label and limit their potential and believe them to be the truth we start to box them and ourselves in a preset mould. Letting go of the limited perceptions start to help us become more flexible with the needs of children who don’t fit into the norm or in our education system in schools. So, we as teachers and therapists can start to find innovative ways in schools for kids who have unique needs and need adaptations so they can also receive the education they so rightly deserve and be in a least restrictive environment.

We can start let go of needing things to be a certain way, and became less worried about what people might think of how my children behave. We used to privately celebrate our daughters birthday but than decided to celebrate her 13th birthday with our friends, 50 of them. Even though she didn’t quite understand the meaning of birthday she clearly knew it was a special day for her and she was very happy. The joy was priceless. Isn’t that as parent we want anyways?.

Letting go of fear and distress
If we are mindful when we perceive this world of children with disabilities, we will not limit them by our own fearful thoughts or emotions, but empower them with a solid foundation of resources and self-belief. This will help them accept themselves as different, but not disabled. After, a whole year of contemplation, we as a family took our daughter to hot air balloon ride on her 13th birthday and that was one of the best moments. She enjoyed it so much, we could see that with her smile that she had all the time. There was a fear and we were so glad we moved forward and faced it instead of pushing it away.

Letting go of control, be open
I am the adult and I must be in control. When we are guiding our kids to express, learn and adapt we are supposed to be doing just that, guiding not controlling. Practicing mindfulness as we teach, gives us a moment to let go and accept any negative emotions or thoughts arising within; it helps us to release any need to control our children or the outcome of a particular outcome of therapy intervention, a behavior or just day to day activity.

How many times as a behavior therapist or as parent we go to our kids with a set idea already in mind that if they will react in a certain way we will do or not do this and as soon as things don’t happen to our expectations we start to control and fight the situation and in return cause more behaviors more tantrums, etc. Instead of trying to control the situation or worrying what my child is doing, first you be free of expectations and then you will see how your child will start to come out of the shell, you will be able to tell by their smile, body movement and ease.

Clear, mindful communication
What we say and what we think we are saying can be two different things. Being mindful helps us to be present when communicating with children. With children on the spectrum, it is especially important to be clear and specific. They can be very literal in their use of language, and our sarcasm, commenting on their behavior confuses them. It is especially important if the child is nonverbal because they cannot repeat back to you what they just heard or not.

Being aware of our thoughts , emotions and how it influences our interpretation of the world around us; or projecting our fears and thoughts onto our children, start to help us to listen and talk much more mindfully. With mindfulness, we can develop greater understanding and compassion when we see our children and teenagers struggling to process and interact with the world in the only way they know how.

Inner calmness through self-awareness
Mindfulness enables us to realize that peace is an inside job; we can’t control the world, but we can take responsibility and control of our own emotions and thoughts. If your child shouts at you and this makes you feel irritated or upset, the seed of this was already in you; they didn’t cause the irritation, they fanned irritation flame that was already present. The flame was there due to daily stressors, fears and worries. But with mindfulness we can connect within and be aware what triggered the stressors and to let it pass with mindfulness; this is a powerful life skill. If there are strong emotions simmering beneath the surface, meditation can help them to feel and embrace them in the heart. The facts of outside circumstances won’t change, but how you handle them will make all the difference.

Increase sensitivity to self and others
We all have the ability to sense energy; as children we knew this. As adults, we seem to loose that sensitivity because of fears, ideas , doubts and expectations. Children don’t have these filters, they are free and feel straight from their heart. Thoughts and feelings have energy which affect not only our own energy but send out energy in waves affecting the world around us. These are experienced by others, particularly children.

I often see if I’m in a bad mood, I might say or do nothing physically that gives this impression, but my daughter may sense it on some level through my energy. The difficulty for children, and many adults, is that when they pick up on the emotions and thoughts of other people, they aren’t sure what is happening or how to process it. The sensing but not knowing or understanding can alert their stress response. Children are very sensitive to the energies especially of their parents .

Groundedness
If you aren’t grounded you will feel overwhelmed. Ungrounded makes it difficult to trust yourself, to let go of the fears and worries. It makes it difficult to stay focused and calm when we are facing challenges in day to day life. It doesn’t mean that you will never get worried or fearful. It means you will be able to bounce back quickly.

In the beginning whenever I would lose a habilitation provider or a therapist for my daughter due to her behaviors or other reasons, I used to hold myself responsible for it or my fate and would dwell upon it for weeks. That in turn used to make it so hard for me to support her in those times of change and transitions. Now I don’t see that as a reflection to anything that I or my daughter has done but just a normal course. If you aren’t grounded you will feel overwhelmed by these changes and will have difficulty supporting yourself or your kids.

Compassion
When we meditate with mindful awareness within, it becomes a source of compassion, forgiveness, love and peace while bringing much insight and wisdom into what causes our own suffering and the suffering of others. We become fully open to the world; we embrace life with an innocence and curiosity. As we experience life, we face challenges and keeping our heart open becomes a test of our inner strength. If we allow our minds to dictate the course of life and we step away from the emotions, we seem to close ourselves. This closing can at first protect us from the pain, but it also limits our sense of joy and happiness. In the long term, it can bring us to a place that leaves us feeling empty and depressed.

A simple practice which only take as little as a minute can help to remind you of your inner strength. Place a hand on your chest and one under your belly button as a gentle reminder that you have everything you need within. Take deep breath, count till 10. Close eyes if that helps. It’s a quick pick me up simple technique to remember, you are loved.

It’s okay to ask for help
If you are someone who has to do everything and you struggle to let people help you, practice asking for help and accepting that your way is not the only way. Openness helps to see others view point and help in learning new ways. Why I want to teach mindfulness? When I first started practicing and decided to teach, my teacher said to me that teaching comes from your own direct experience, we can repeat what is written in the books, repeat the words of our teachers but the true teachings comes from your own experience as that’s when they become alive. What I am sharing here is my own direct experience of accumulative experience as a-mother, therapist and a Reiki/Meditation teacher. It’s what I teach.  It’s what I practice.  And every time I do, it never fails to amaze me.

Practice and learning is ongoing and no way complete, as its lifelong and I want to teach parents, caregivers what I have experienced and learned all these years and show them how to help their kids connect to their breath, their body, their feelings, the earth and each other. As caregivers, parents, teachers, family members, we are connected to kids. Kids with autism are like any other kids, to grow they need the freedom yet they also need the discipline, patience and guidance to bring them back gently to groundedness of earth so they feel safe and secure.

It is hard sometimes for us because we can’t seem to understand the perspective of children with autism and what they see, feel and experience. We don’t know what it’s like to see the world in this way and we watch them struggle to make sense of why they move and behave in the way they do. Same way kids don’t know how to connect and reconnect as they have a very thin grounded connection and their growth and development depends on who is holding and how someone is holding their hands in this maze, puzzle of life journey.

This is why, we as adults first need to look at ourselves and do some self-care. I can tell from my experience as well as what I hear from teachers, therapists that children reflect back our energy to us, our state of mind and how we are feeling. So if we’ve had a bad day, feeling tired, anxious, children act like mirrors and reflect it back. The more we can do to stay centered, calm and grounded using simple mindful meditation techniques, the better it is for them.

To summarize, I found over the years that every time I calmed my mind, my daughter would become just as calm. I realized we were linked, bonded, energetically and that on some level my daughter could sense and feel everything that I was feeling. This served as motivation to keep up my practice.

The most important way this has helped my daughter and me is that it gave me the ability to look at her more deeply and to look beyond her tantrums behaviors, struggles she was experiencing, and into what was behind her fear or anger. It taught me to take the time to center myself, breath deeply and to ask myself what it was that I could not see that she could see or feel.  It taught me compassion, equanimity and patience. If we step back we might see what this teaches us about our life and our choices. If we practice moments of mindful attention to those precious minutes when we are with children, centering our energy so we can allow them to do what they need to do to cope in this world, yet showing them they can trust us to guide them into a calmer state, then there is no final solution. Just a moment of peace.

Mindfulness and meditation is a practice, a way of life, resting on time tested three pillars for anything we want to do: patience, persistence and perseverance. This is about empowerment for ourselves so we no longer will say to ourselves that I cannot do this because I don’t have this. This in turn will empower our kids. Because we cannot give others something that we do not have. Empowerment ignites empowerment.

What can I say
or give
I give you myself
In giving myself
You see yourself
And I see myself
As one and same
Yet I don’t give
Anything but
Bare myself
To you and
myself
And before I
Leave if I could
I would give
You
This.

About the Author
Seema

Seema

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Seema is an occupational therapist, Reiki and meditation teacher, and a writer. She loves creativity in every thing that life has to offer, hiking, traveling and cooking. Originally from India, now settled in Arizona, US. She has two teenage kids, one girl with non - verbal Autism, who is an inspiration and drive to help find her inner strength. Seema's vision is to help families with special kids , in coping with everyday stresses to be more grounded so they can find their innate strength themselves and set up programs in special schools about meditation and mindfulness.

Photos by Seema Sahoo.

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Comments

    1. Seema Sahoo Author

      Hi Jenetta,
      Glad you like it :-).Thank you so much sharing !.Let me know if you have any questions about it. I am still learning , interesting journey.

  1. Seema sahoo

    Hi Ariel ,

    Thanks for sharing. That’s great work you are doing !.We need programs and support globally especially for parents. I can see how it can be abstract for them.

    My daughter is low functioning with high receptive language but low expressive. She and other kids that I work with have taught me how to let go off some ” rules” and work with their strengths.

    I include and modify some breathing meditations practices and teach them by task analysis/ backward chaining. ( use my O.T. skills) as well as art , body movements / walking as moving meditations, chanting etc. so they can bring their awareness in present moment. I am finding that doing it this way even kids who are “low functioning” can be taught successfully.

    Thank you and best wishes to you as well !

    Love
    Seema

  2. I am a child psychologist working with kids who have ASD and their families. I am also a certified Mindfulness instructor. We hold Mindfulness groups for our parents for the reasons you mentioned in your article. It can be a great tool for finding peace within oneself and being better able to handle the struggles of life with a child who has autism. I even teach Mindfulness to some of the higher functioning kids I work with. Mindfulness can be a little abstract for many people with autism but it can be very helpful to those able to understand it. Thanks for sharing your story.

  3. Seema sahoo

    Thank you Sonia for your kind words!!. Glad you liked it.

    Hope more and more people will experience this via mindfulness and meditations so important in this age and time.

  4. Dear Seema
    Thank you for this brilliant text ! I’m happy that you shared these beautiful words and knowledge with us !
    This is a very important article to help us to empower our kids !
    Namaste !

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