One mother of a daughter with autism was going through a lot of changes in life when she found something that seemed empowering, new, and different. Her story, as told to Kaitlin Ahern, shows how a day of joy helped her release negative feelings and embrace the power of self-care.
My daughter is 7½ years old, and she has autism. She was diagnosed a little over 3 years ago, and caring for and raising her is still a learning process for me. About six months ago, I was told she wasn’t progressing in school. The process of finding her a new school where she could thrive was stressful—it was like a weight, a burden on my shoulders. I live in Crown Heights, Brooklyn, and at about the same time I was having problems with my landlord and saw my rent increase dramatically, so I decided to give up my home.
I was going through a lot of changes in my life at that time, and I was open to something that seemed empowering, new, and different. So when I heard about the A Day of Joy workshop in Williamsburg, Brooklyn, I thought I’d give it a try. The workshop was presented by Shane Kulman, M.S. SpEd, founder of Your Beautiful Child, whom I had met at an Autism Chalk Festival in Prospect Park earlier this year (she is a beam of light!). Shane is a special education therapist and family coach, and the A Day of Joy workshop was meant to empower parents and caregivers of children with special needs, as well as the professionals who work with them, with a sense of self-care, self-love, and a feeling of community.
I woke up the morning of the workshop optimistic and excited to see what it was all about. When I got there, I found a small, intimate group of parents and professionals and noticed the positive vibes. We did some meditation, breathing exercises, and journaling, and we had open conversations. I felt like I really connected with people who I had met for the first time that day.
Afterward, I felt lighter, like I had just released a lot of the negative emotions we all experience—doubt, fear, uncertainty. And I left feeling like a new person with a different view on life. Since then, I’ve had good days and bad days, but I keep telling myself that in due time, everything is going to be alright, and that I just have to stay focused. I keep revisiting that day, and it puts a smile on my face.
I continue to try to find a balance between caring for my daughter and caring for myself. When she was first diagnosed, I was a total wreck and completely overwhelmed. Even sitting down for a few minutes during the day to take a breather made me feel guilty. I’ve learned over time that it’s not a crime to take time for yourself, because you need it—I need time to recharge so I’m able to take care of my daughter to the best of my ability. I know that if my child senses that I’m stressed out, sad, or overwhelmed, those feelings project onto her. Still, it’s hard to find that balance and beat down the guilt and doubt that rise up when I do something for myself. I try to keep in mind that I’m just human, I’m only one person, and as long as I put my best foot forward, that’s all I can do. I know I need to care for myself so I can be around to care for my daughter in the long run.
I’m still learning every day, from workshops and seminars and especially from the amazing people I’ve met along this journey with my daughter. As the parent of a child with special needs, it’s easy to feel lost, alone, afraid, and overwhelmed. That’s why it’s very important to reach out to others. You need people in your life who can relate to what you’re going through, and who can help you along the way. Everyone needs a support system and someone to talk to. It can be a lonely and challenging world, so it’s important to stay connected and know that there’s always someone out there to guide you and give you advice. I feel that the more people you’re connected to, the better off you are, because no one can do it alone. And like the saying goes, “it takes a village.”
Tiffany Caldwell is a Brooklyn mom, a mental health therapy aide, and a passionate advocate for her daughter, who has autism, and for the special needs community at large. She enjoys spending time with her daughter in the plentiful green spaces throughout Brooklyn and watching her child’s imagination blossom through art.
Healing Your Relationship With Autism – A Unique Perspective
In this reality these amazing beings are labeled and limited and are judged as having a Dis-Ability but what if the way these beings function from is really more of a Super-Ability? What if they are not disabled at all but rather highly ABLE and we are the disabled ones?
My wish in writing this article is to demystify what Autism is and remove all obstacles and illusions of separation we have been taught in this reality that these beings are anything other than miraculous and awe inspiring so we can come together from this space of oneness.
What if it was far easier to communicate with total ease with these kids and adults who happen to be a lot more conscious than we give them credit for?
What if by following our knowing and trusting our awareness without judgement, we can reduce any stress or frustration we may be experiencing and have more ease relating to our friends, family members, and loved ones living on the Autistic Spectrum?
What if individuals living on the spectrum were naturally functioning from a much higher level of telepathy and knowing as well as vibrating from a much faster and higher frequency than we ever imagined possible?
Autistic children pick up every thought, feeling and emotion within a thousand miles. They are intuitively logical and logically intuitive. If you can alter your communication you will see that they are lightening fast and continuously responding to your thoughts.
By Using and applying RICH Clearings, you can unlock the doors to a more loving and peaceful relationship with your loved ones and mostly get out of your own way by unlocking their special gifts, talents and magical abilities that you were never told about when you first received the “diagnosis” of Austism, ADD, OCD, or PDD.
I have been offering healing sessions both in-person and over the phone to reach people all over the globe in honor of you the caregiver and wayshower of these highly gifted & higher inter-dimensional beings who are our greatest teachers! I gently & compassionately assist my clients to bring up any old resistance, judgments, limitations, illusions, lies, stories, programs & unconsciousness around what we bought as true about Autism and blast them all out of this existence by releasing and clearing them away as if by magic. Many families have been greatly helped to live from peace instead of stress in their daily lives even after just one session.
Once we bring up these old energies that have been causing pain and suffering, we can let them go so we have more space to function from total awareness to create a more expansive and peaceful reality for ourselves and everyone on this planet and beyond. We can then return the drama trauma that this reality sells you in all the way back to the infinite wisdom of our loving universe. Miracles can then
occur for all of us as we are all one.
What I’ve learned along the way is the only “cure” for Autism or any other different way of functioning in this reality is to operate from a place of pure and unconditional Love. Here is a letter I wrote to my own son who is now 21 when I attended a conference in NYC about Autism for Parents & Caregivers which changed all of my points of view so I can be fully present in all of my interactions with my greatest teacher who chose me as the perfect personal navigation system for this reality.
You have taught me the true meaning of Love,
You have given me intense joy, my most important
mission in life, & a genuine sense of purpose
You have taught me patience, to never give up on you
No matter what & to truly believe in your life
And future potential
Yes we struggled
No, it wasn’t easy
Yes, you were so worth it
I believe in you and what you can accomplish
Even when others didn’t
Even when you ran away
Even when you acted out
I always knew you loved me
You were just in pain-so was I
And we both couldn’t show it
You didn’t know how to reach me
I didn’t know how to reach you
But somehow we found a way
We found each other
There was never anything wrong with you
There was never a time that you
were abnormal or crazy
There is everything Right about you
You’ve taught me that it’s ok to be different
To be unique and a bit quirky
I’ve learned to accept and honor you along the way
To love all the funny and frustrating things
that make you so precious
You’ve taught me not to worry about
What other people think or say
I’ve forgiven those individuals some from my own family
Who didn’t honor or understand you
Who judged you
And I’ve most of all forgiven you and me
Here is a lovely testimonial from a very grateful Mom raising her daughter with Aspergers.
“Thank you Meryl for the explanation of Rainbow, Indigo & Crystal kids. I would love to guide my daughter toward healing, although the 1st session when she was younger was with the wrong person.I think she feels spooked by it now, thinks she put evil into her which I have dispelled but nonetheless my session was so profound with you, I could not get up for a few days, a real awakening! Still feeling it as well. Need to slow any new energy, have been working with too many modalities lately.Also, my shoulders were completely pain free for 4 days while I was at home ( had not felt that for years and several attempts by other healers). I think typing on computer all day and stress are not agreement with them. Still need to write to my daughter as well, will start putting thoughts together today (listen to your letter again for inspiration)” -Anonymous
If you or someone you love is struggling with understanding Autism and would like to heal your relationship with the diagnosis as well as with your family members, receive all the healing you need by listening to our live archived tele-class on Autism by clicking here. Its only $25 and the MP3 includes emotional clearings, creations and a customized Healing Activation.
Meryl Vandana Brinin
Co-Creator of RICH Healing
You love your child. They go to school. You hope for the best. The teacher wants to talk to you after school or it’s open school night. All these feelings of defensiveness, shame, fear and lack of knowing may come up. What’s next?
Showing up to hear about your own child can be tough, especially if they have challenges. Having been a classroom teacher, I’ve witnessed a lot of parents showing up to a parent teacher meeting with all different kinds of emotions, some subtle, some very up front and center. If you’ve gotten to this point in reading. EXCELLENT. You are open. Hopefully teachers come from a place of compassion, regardless the more you are prepared the better you will feel. Here are 5 tips for the next time you have a meeting with your child’s teacher:
- Set your intention (what do you want to get/receive or accomplish at the meeting. Be specific, be clear)
- Breathe, take 5 deep breaths into your belly, place both feet on the ground, affirm your intention
- Show up with your questions written down, write the answers down as well
- Bring support if you can (it can be a good friend)
- Ask what specifically you can do for “carry-over” at home to support what your child needs help with
I have heard of many situations where the teacher is rude, doesn’t care, and and no way near compassionate. For this I’m sorry. I understand how upsetting this can be. My offering here are: be firm and friendly, with the teacher and or the principal/director if you need to. Using anger or getting frustrated and fighting, does not benefit your child, and limits time of your needs being heard.
I wish you many informative meetings,
Note from Shane: HERE is the reason I’m so fricken passionate about working with Parents. You matter SO Much. Brenda Rothman puts it into words from a Mom’s point of view. Find her on Facebook MAMA BE GOOD
When we begin to feel overwhelming emotions in response to our children’s actions – like sadness, upset, anger, fear, or resentment – we need to calm ourselves for the immediate moment. However you need to do that – by breathing, talking to yourself, repeating a mantra. For the long-term, you will need to do the hard work of exploring those feelings and the reasons behind them.
Our physical response is just as important. Because this is frustration, respond with calm and soothing. Our children are not trying to hurt us. If they see us reacting in disorienting ways – like crouching, putting up our hands as if to ward off hits, or crying – it will frighten them even further. Trying to control our child’s behaviors through physical restraint also escalates the situation. Imagine how you would feel as a child if you were already disoriented and your parent’s actions looked even scarier. Instead, we should calm, soothe. Remember that we are our child’s compass.
Know in advance what soothes your child. Physical things like running water, a fan, their bedroom, low light, a tent, blanket, a stuffed animal. But also, let them stomp, stamp, slam doors, hit pillows, throw stuffed animals – there are many safe outlets for frustration. And they do need outlets. We can’t just clamp down on them and negate all outlets for them. Imagine if you couldn’t vent – you’d feel like exploding.
One thing that I have to do regularly is keep everyone safe. And sometimes I say that – remember Neufeld’s agent (or angel) of futility and agent of compassion we talked about? I say “I’m so sorry, but I have to keep everyone safe. I know it’s upsetting, but that’s my job as a parent. And you know, parents have to do their jobs. Sorry, that’s just what I have to do.” And I keep everyone safe, as keeping hands off each other. Without any type of punishment like ignoring, or separating, or high emotions, or anything. Just sigh, sorry, this is what I have to do.
The other thing I do regularly is playful parenting to stop the actions but in a very playful manner so it doesn’t escalate. Like very lightly saying “oh, ho, ho, mister, are you teasing your sister? Do you want some love taps, too?” or “I saw you do that, you wiley coyote, you.” If you haven’t read the books Playful Parenting and Hold On To Your Kids, I highly recommend both for ideas of discipline that are not punishing or isolating.
After they’ve vented their frustration, you can try getting their sadness out. That’s the real emotion underneath frustration – because something isn’t working and that’s upsetting. After our children have experienced a big emotion, they often need a safe way out. Silliness is one way. “That stuffed toy smells terrible! Did he toot?” We often have to just try different ways of helping.
This fact that the adult escalates or de-escalates the child’s response is critically important. We have to realize how we are a compass to our children. We also need to hold the adults in our children’s lives accountable for their reactions and how those reactions escalate our children’s reactions. Teachers, therapists, behaviorists – do they put their hands on your child, even to direct them? Do they give your child ways to vent? When the child gets frustrated, are they forced to sit back at a table and do a task or are they given recovery time? Are they labeling your child violent instead of frustrated? Are they restraining, ignoring, secluding, punishing your child? Are they demanding too many things? Are they requiring quiet hands, quiet feet, quiet body? Are they spending directing and redirecting all the time? Are they blaming the child instead of acknowledging their own role in the escalation?
Our children react to being forced. They react when there is too much direction and too little connection. They react with frustration when the relationship isn’t working. They react with their own will as they try out independence. When our child is not treated as her own person, with her own preferences, thoughts, opinions, and boundaries, she will put up resistance. This is a healthy part of growing up.
If the therapy our child does sets us up for conflict, no matter how beneficial we are told it is, we need to refuse it. If we are told our child is “violent” simply because he reacts to force with negative emotion, we need to reject that. We parents have the right to demand peaceful, loving, connecting ways to raise our children.
I have a confession to make. Are you sitting down? OK, here it goes.
I don’t care what caused my kid to have autism. Not one bit. (Cue the dramatic music and GASP!)
I don’t give one flying fig why my kiddo is autistic. It’s just is what it is. I don’t need someone or thing to blame. I don’t need closure. I may need a nap, but I don’t need to know the kit and caboodle and all that autistic jazz. To paraphrase Bob Seger here, I have “turned the page.”
Why this self-centered attitude? Simple. It’s survival. I have a lot to do, and I’m going to leave science to science. None of those researchers ever come here and start a load of laundry and empty the dishwasher. So I’ll let them do their jobs and use Google for researching new crockpot recipes.
What about the other future families you may wonder? Yes, I get what you are saying. I have known a few families now that have become members of Club Spectrum. It’s hard to see it happen to those you care about, and Hallmark has yet to make a greeting card suitable for the occasion. At the same time, I can’t take that all on too. I’d rather just have tunnel vision on doing what I got to do for my kiddo. I’m all about helping out others and sharing basic tips. Don’t get me wrong. I just think it’s way better for any parent’s psyche to spend 20 minutes shooting the breeze over the game last night or this season of “Boardwalk Empire” than having an in-depth conversation on medical research. Sometimes we have to turn off the “All autism. All the time.” part of our brains because, dammit dude, my brain just needs a break.
The kiddo is 10. I have bigger fish to fry. We have a middle school transition that is quickly approaching. Last week I discovered some hair growing on some places on him, and he is starting to have teenage-boy stink on him by the end of the day. Puberty is coming, and I will need to be sedated the day we have to figure out how to shave his face. I can’t even get this kid to trim his toe nails without having to sneak it in while he sleeps. Can I shave him as he sleeps? Is that doable? He still can barely write his name. You want me to read a hundred different articles and blogs online that folks keep sending me to see about what caused autism to show up? That has to take a number. He’s growing rapidly here, and I have too much to worry about than adding that. I can’t even remember to take out something to defrost for dinner, much less figure out when I can comb through miles of medical research on this subject. My family can’t eat research.
So I am sorry if the question what caused your child’s autism is still knocking at your door. I just decided to close the door on that subject, and I’ve been a lot happier for it. Despite a life filled with routines and schedules, more freedom came with that choice too. I’m not saying for you to do it. I’m not saying this is the only way of thinking that is right. Like we say in Jersey, “You do you.” Just be open to the idea of shifting your energy off this one thing. You might just thank me for it.
This post originally appeared on Autism With a Side of Fries.
Agree? Disagree? Send us your opinion. Email us firstname.lastname@example.org.
WALKING THE TALK: GETTING MY SON EVALUATED
A few months ago, when we finally thought things were getting better, he started vomiting excessively. We got him tested and it turns out he is not only allergic to milk; he is also allergic to soy and wheat. Great!
Regardless of all the allergies and all the other little health issues throughout, we’ve dealt with everything without worrying too much. For some reason we haven’t been fazed by any of it. However, amidst all the issues, one stood out.
My baby boy was not speaking.
Julian is now 21 months old. He says a total of eight words. By two years old or 24 months, children should say at least 25 words. I hear stories from my mommy friends about their children’s rich vocabulary:
“My son says ‘ninosour.’”
“Laila sings along to songs on the radio.”
“My daughter says ‘jet.’”
“Alberto said ‘I love you’ for the first time.”
I usually just stay quiet during this part of the conversation. Smiling and nodding. And although I’m happy for them, I can’t help but question myself.
I’ve been asking myself: Do I expect too much from Julian? Or am I not pushing him enough? Am I not speaking to him enough? Am I confusing him by speaking to him in English and Spanish? Maybe I shouldn’t have skipped reading time some of those nights.
I’ve been worrying about this for several months now, which is too long. The weird thing is that professionally, I know it’s too long. But personally, the truth is that I’ve been allowing doubt and passive parenting get the best of me. I’ve let myself question whether or not I’m overthinking the situation.
But yesterday all that changed. I officially embarked on a scary and somewhat unknown journey.
I began the process of getting my son evaluated.
I know it’s strange that it took me this long to start. When parents call our resources line or family members ask about evaluating their children, I never hesitate when telling them to just do it.
“It’s better to know than to wonder,” I say.
And I can feel their resistance on the other end of the phone. Now I know what they feel like.
What kind of advocate would I be for my son if I continue to let self-doubt take over when it comes to my own child?
I would be lying if I said I wasn’t nervous. Questions are bombarding my thoughts and I am filled with anxiety.
But I am thankful that such knowledgeable people surround me here at RCSN. I know I wont embark on this journey alone, and I look forward to sharing my own process along the way.
In the past 6 months, there have been two Day’s of Joy. LA and NYC. I share what I’ve seen, and experienced.
Why is JOY important to health? I recently asked my client (a Mother of a 12 year old autistic girl) What is joy to her? She replied, making sure my child is fed, and I have a roof over my head. ALARMS went off in my head. Is this joy? I define this as survival. What does joy mean to you? Is it a party? A vacation? Do you have to spend money to be joyful? Can joy be something you create on your own?
The kind of joy that brings health to the body is the kind of joy that you FEEL in your body, travels up your throat and comes out in a burst of energy. Bursts of energy look different to different people. For me I feel my freedom, and I talk fast, or jump, or ideas come to me fast and furious of how to do more of what I love.
How I got to know what my JOY looks like, ha ha ha, well I had and have to walk through the bog to get there. The bog is the swampy waters that are filled with anger, blame, shame, guilt and worry. My joy expands whenever I get to release, or realize how much of the bog I walk through or possibly even get stuck in.
A Day of Joy is a day meant to feel. In fact I open the space inviting guests to ponder; maybe they won’t feel joyful at all! Maybe they will have feelings of being pissed off, sad, angry or even confronted! I witnessed many women taking part in very new and experimental ways of expressing themselves. Some found it very easy, some were extremely challenged. I only know self-criticism and judgement to be the reason. Why is this so common? Why do we women allow judgment to take us down. Why are some so stuck in our bodies. Afraid or challenged to make big movements with our bodies, or to explore a new way of moving. Why are some of our voices afraid to get loud? It was interesting to witness.
I work a lot with women and Mothers finding their voices. Are you comfortable being loud, are you comfortable using a strong voice, when you are asking for help? Are you comfortable with an audible sigh? Try it and see.
My goal for A Day of Joy, is for women to expand beyond what is their “norm.” Everyone’s “norm” is completely different. I am extremely aware of how it’s “easy” to stay in a comfort zone. Doing the same thing every day, having the same complaints, the same schedule and literally having no hope for dreams to come true. I see women who give up on their physical selves. On a deep level of self-care, these things matter. I see only doing the minimal self-care, shower, brushing teeth, and dressing in clean clothes as survival mode. A Day of Joy, is a day to break out of survival, to go beyond any limitations that have been set by belief systems or what someone else said was true.
A Day of Joy is a challenge for all women that show up. The type of “joy” that I introduce can show up in two weeks, a month later, or maybe immediately.
Overall I saw women in LA adapt much quicker to the workshops than the women in Brooklyn. Why? Why were the women of the west coast more open to new experiences and using their voices, and breathing past what is “right” and “wrong?” I wonder.
I WELCOME comments on this! Let’s keep it friendly and loving, and please only speak for yourself….
Shane B. Kulman, www.yourbeautifulchild.com
To sign up to the Your Beautiful Child Newsletter, click here:http://eepurl.com/TOEMn
I embarked on this journey the day my wife and I decided to change roles and become parents. It has been quite a journey due to the unique challenges and joys I’ve experienced making me think what is really important in life.
I can certainly say that in the beginning things did not turn out as expected, shockingly we were introduced to a new world.
Parenthood in general changes people’s lives, raising a child with special needs turned out to be more demanding and challenging. Our son, like many others came from Planet Spectrum and on this planet social rules and behaviors are not set by the majority rather than the individual. Verbal communication is difficult and the 5 common senses are perceived and felt different by Spectrumites, health is somewhat a vague word compromising internal physiology in various aspects from individual to individual.
I have been on this journey battering with medical, educational and social systems at times the task seems overwhelming almost impossible to achieve, however as a father I go on. I will admit there are times I feel irritated, angry and depressed, what has and continues to help me are support groups most of which I’ve created myself for the lack of them.
I do realize that unlike moms men in general are not big on supporting each other, nevertheless I haven’t given up on the Idea of a fathers Support group that is why I created the Special Dads support group, for all Fathers of special needs children’s.
We meet monthly at different venues.
The setting is very casual, it’s a great opportunity for Dads to socialize and share with other Dads their views from a man’s prospective without feeling judged.
These meetings are meant to strengthen the fathers’ role as a caregiver and to learn acceptance towards our children’s diversity by sharing our personal success and struggles for fathers who are involved in their children’s lives.
In other words it’s for “Guy Talk for Fathers of Children with Autism and Other Special Needs” it provides the necessary platform for fathers to gather information and share personal insight from other fathers in the same situations.
Fathers have a lot to give to their children; some men get so depressed about dealing with the needs of a special Child that they become distant dive into their work just to escape.
I have learned that there is joy in acceptance and that although our children are different their love is unconditional and they are able to achieve greatness.
I have learned to embrace my role as a father and made it into something greater the bond I have with my son grows stronger every day, most of the activities we plan are about my son and the results are amazing, my son flourishes and continues to learn and grow in to a wonderful teenager. Over the years I’ve become a coach a mentor and a friend for my son but the most important role is being a Dad who dedicates his time for his child.
On this Journey to Planet Spectrum nothing is more precious for YOUR child than the time YOU spend together!
Founder of New Jersey Parent Advocates
■ I Started My Advocacy career in 2009 with a local Group there I held the position of Director of the Parent Advisory Board from Jan 2010 to Feb 2011
■ In 2010 I had the pleasure to meet another local Organization I held the position of program Coordinator including organizing meetings. Until March of 2012 I ran Monthly support meeting providing free parent support on navigating through the special education process by means of training and workshops these support meetings meant to empower parents and learn to self advocate for their children.
■ seeking to do more I decided to do something totally new. Something I could call my own.
I decided to create my own organization in the hope to foster a cooperative environment with other Advocates who are willing to help as many Parents as possible.
■ On March 18 2012 I founded New Jersey Parent Advocates
■ New Jersey parents’ Caucus, Inc. Professional Advocacy Training
■ SPAN: Span Resource Parent.
■ New Jersey Statewide Parent to Parent
2012 Nominated by SPAN and recipient of the Parent Anonymous Parent Leadership Award
Projects I’m currently involved with:
■ Special Olympics New Jersey, LTP coordinator February 2014 to present
As the Local Training Program Coordinator (LTP) for Area 5 Special Olympics I run a bowling team.
“Middlesex Pin Busters”
■ New Jersey Special Dads2013 to present
This group is for all Fathers of special needs children’s. For fathers who are involved in their children’s lives. In other words it’s for “Guy Talk for Fathers of Children with Autism and Other Special Needs” it will provide the necessary platform for fathers to gather information and share personal insight for other fathers in the same situation.
■ New Jersey Parent Advocates Group March 2012 to present
Our purpose is to create strong parent advocates through training, sharing of best strategies and guidance based on successful advocacy experiences. To encourage parent advocates to build and maintaining positive, collaborative partnerships with all professionals and administrators working with and for the development of their special needs child. To guide parents in developing their NJPA voices, in positive and constructive ways, at their local school district level, their county level and our state level. To work with other organizations to make positive changes for the betterment of special needs individuals as we help them meet their personal goals as they become contributing and valued members of society. To grow this organization as a known and respected entity that works to empower parents to become successful advocates for the special needs community.
■ Autism Families Group 2012 to present
This support group is for special needs families to share life experience community events and experience. This is a place where you can share your child’s achievements no matter how small or how great, a place for when you need a listening ear or a shoulder to cry. In short, any information you might think it’s important and worth sharing for the greater good of all
Brian R. King, LCSW, was a guest on Your Beautiful Child Radio. I welcome any and all insight he has to share…. He has a book that I own, and has so much power to share from a Dad on the autism spectrum, it’s a must have. LET’S RELATE – BOOK on AMAZON
Meltdown At The Airport By: Brian R. King, LCSW
I’m going to be very vulnerable in this post for the benefit of all who read it. Let me start by saying, “I HATE FLYING.” I realize it’s a necessary evil as I receive more requests to give presentations out of state. Between the bright lights, echoing overhead announcements and people repeatedly bumping into me at the airport, there’s the rapid pressure changes and unpredictable motion of the airplane itself. You’d think that would be enough to send me into a meltdown.
Yesterday I woke up at 4:30am to get to the airport to fly to New York for a presentation that night from 6:30-9:30pm. The landing into New York had significant turbulence and in addition to praying to God I gripped the seat in front of me so tight that I had a hard time letting go and my hands were stiff and sore.
The rest of the day went smoothly and I did an awesome presentation, met some amazing, generous people and received some of the best feedback I’ve ever gotten. I was back to my hotel and resting by 10:30pm. That’s a 15 hour day with about 1 hour of downtime in the middle.
I awoke the next morning feeling pretty worn down and very eager to get home to my family. The flight out was fine and I had a layover in Philadelphia before heading home to Chicago. I didn’t realize how overloaded and fragile I’d become from my intense schedule until the following happened.
After sitting in the airport for over two hours, 20 minutes before my flight was supposed to board, they announced the flight had been canceled because of problems with the plane and they didn’t have another plane to replace it. I quickly took out my itinerary and called Expedia whom my client had used to book the flight. The woman who answered was cold, monotone and clearly following a script. She gave me some crap about what she couldn’t do because of how the flight was booked and BLAH BLAH BLAH. She told me I had to go to the customer service desk for the airline.
By the time I located customer service the line was at least 100 people deep and not moving. It was then that someone announced that there were no available flights to Chicago and that we’d have to make overnight accommodations after booking another flight. I began shaking, my eyes began to tear up and all of the sounds in the airport became louder and the lights became brighter as I contemplated having to stand in this 100 person line for an undetermined amount of time in the hope of getting home. I was beginning to shut down which was making it hard to think and hard to speak, I couldn’t think of what to do.
So I did what I encourage every other spectrumite to do in a situation like that. I called for help. Who did I call? My wife Cathy. I explained in my very shaky voice what was happening and how much difficulty I was having even thinking. My darling wife Cathy who is a greater gift from God each day that I’m with her, remained very calm and guided me step by step in what to do.
She told me to look for one of the people that transports those with special needs around the airport. I saw one and slowly walked over because I was so shaky I felt my legs were going to give out. Cathy coached me on what to say because I was having difficult getting my thoughts together. I think I said something like, “I have Autism and they canceled my flight and said they don’t have anymore flights and I need to get home.”
The woman I asked for help is named Shawn and she gently took my bags and told me to sit down in her tramcar because she could hear the tremble in my voice and could see how badly I was shaking. She took my itinerary, asked me a few questions and said she knew someone that could help.
I sat bent forward, doing some stimming as Shawn navigated her tramcar through a sea of people as Cathy continued to talk to me and keep me calm. When we stopped Shawn asked if I needed anything and I said, No. She said she was going to talk to someone about helping me and she’d be right back. It seemed like an eternity and Cathy kept talking to me. Shawn came back with a gentleman right behind her who handed her a boarding pass with my name on it for a flight that would be leaving an hour and a half later than my original flight was supposed to.
When there were no flights to be had until tomorrow, Shawn knew I needed a solution. Shawn asked her supervisor Dale for help. He got me a seat on what I later learned was an overbooked flight. When we were seated I was surprised to discover that my seat was in the fourth row so I would be one of the first people off the plane.
I am now home sitting on my own coach as I write this to you in order to convey one simple truth to my fellow Spectrumites that you must never, ever forget. There is absolutely no value in going through your life stubbornly refusing to ask others for help. I was seconds away from a full blown meltdown at the airport so I called my wife Cathy who helped me find Shawn. Shawn led me to Dale who helped Shawn help me.
I am sitting here so grateful and humbled to my core by how generously and tenderly I was taken care of today by my soul mate and two complete strangers. Thank you doesn’t even describe it but I’ll say it. Thank You Shawn and Dale at the Philadelphia Airport, you did your employer U.S. Airways a tremendous honor by how you conducted yourselves today.
To my wife Cathy, I will continue to treat you like the gift you are until my last breath. To my fellow Spectrumites, as often as I use my own life as an example of who we can be at our strongest – I also want to use my life to demonstrate how absolutely necessary it is to have others in your life who are prepared to help you in your most vulerable moments. Needing these people isn’t a sign of weakness so get that pile of crap from between your ears right now. It is never a sign of weakness, it never was and it never will be. It is, and always will be the precious gift of service that human beings give to each other.
I am so eternally grateful to those who helped me today, and I hope my sharing this has helped you. Please share this with others.
Brian R. King, LCSW (ADHD & ASD Life Coach) is a #1 Best Selling Author, 25-year cancer survivor, adult with Dyslexia, ADHD, and Asperger’s. He’s also the father of three sons on the autism spectrum. He is known worldwide for his books and highly engaging presentations that teach the power of connection and collaboration. His strategies empower others to overcome their differences so they can build powerful and lasting partnerships. His motto is: We’re all in this together.
Thirteen years ago, my mother-hero’s journey began. My almost-three-year old’s teacher stopped me at the classroom door. “We’d like to have someone from special ed come in and observe Ellana. She’s not like the other children.” My heart raced. My world whirled. Hours passed and I began to extract meaning from the teacher’s words, concluding that she thought something was wrong with Ellana. I wept. I raged. I decided that Mrs. Francis was wrong. I refused the Call to Adventure. I rejected the labels the teacher and observer wanted to associate with my beautiful, brilliant daughter.
Twelve years ago, I acknowledged that my child was very different from the other preschoolers and accepted the challenge to be the kind of parent (I thought) she needed. I decided to overcome the autism spectrumy thing. I donned my battle gear. I read, researched, and planned. I drove my daughter to therapy appointments and sampled treatments of many flavors. I had a goal: I would help Ellana to modulate odd behaviors and acclimate to the ordinary world. I would fix the glitches in her system. I would make my child normal.
Eleven years ago, when my second child was two, he was evaluated and given an autism diagnosis. While Ellana’s way of being defied labeling, Daniel had never spoken a word. He pressed the buttons on his toys repeatedly. He gleefully stemmed, flicking his hands in front of his face. He was happy, affectionate, intelligent, and obviously autistic.
Nine years ago, my first grader was in her fifth school in five years, when we were asked to withdraw midyear. I plunged into the abyss. Amidst deep, dark despair, I experienced a moment of insight: I would teach my daughter at home.
After five years of homeschooling, after much yelling, crying, and foot stomping from mother and child, revelation dawned: I did not need to fix my daughter or her brothers. They were not, and never had been, broken. None of them resembled the children I had envisioned, but they were perfectly themselves, and I loved them, no changing required.
Four years ago, my three children went to school. For the first time in eleven years, I was home alone during the day, so I decided to write a book. I interviewed mothers of autistic children and wrote about the transformative power of our parenting journeys. I was healed and enlightened. I recognized my children’s inherent awesomeness. Life was easy and good. And we lived happily ever after.
~ The End ~
Cue the laugh track. While the above is an accurate, though drastically abbreviated, telling of my parenting experience (the whole is told in Swan Mothers: Discovering Our True Selves by Parenting Uniquely Children), and though I did feel as if my mother-hero’s journey had come to a natural conclusion, I relaxed on my (virtual) lounge chair on the beach, margarita in hand, rather briefly. The end was not The End, but a curve in the spiral of life, circling into another loop of The Journey. I had arrived . . . somewhere, yet felt more unmoored than ever.
Mother, a small BIG word, gave my life purpose and meaning. It was I, who knew what my children required. It was I, who fed and healed. It was I, who soothed and strengthened. I was needed, heeded, indispensable. Until I was not, not needed to fix, for they were not broken, not heeded, for they invoked their own wisdom, not indispensable, for they were competent and complete. Mother, a BIG small role, forged the woman I am today. It is I, who practice non-interference. It is I, who aim to advise less and listen more. It is I, who teach and support. I was heated, hammered, beaten into shape. Until I became, cool and unrestricted, flowing like water, expansive and pliable, open to constant change, sovereign and free.
Since I first heard the word autism, 13 years ago, my Awareness has expanded exponentially. My worldview widened, and continues to grow. I evolved, and continue to evolve. Before autism (and my children) expanded my Awareness, I was very certain of what I should do, how people should act, and how the world should be. Because my children didn’t match my image of how children were supposed to be, because I loved them, and because I wanted to be the mother they needed, I softened. I realized the value of being like bamboo, flexible and bending with changing conditions. I recognized the importance of acknowledging when I was wrong. I learned to be different from the mother I’d been expecting to be. Without the gift of autism, I would be shallower, more narrow-minded, and more rigid.
Thirteen years into the journey, I am trying to not try to figure out a new purpose for being, striving to adjust to the flow of life’s currents, and learning to thrive in this uncertain space. I do not remember what I know every day. I relearn lessons I previously mastered. I slip, stumble, and fall. I notice twists, hills, and valleys on own journey honor the journeys of those around me.
The spectrum of people on the planet today is an invitation to see the essence of one another. It is an invitation to look with new eyes and listen with new ears, and to perceive with our hearts or our senses. It is an invitation to expand our perceptions and evolve. It is an opportunity to embrace uniqueness and individuality while recognizing our oneness.
Natalia Erehnah lived her first 29 years in beautiful and secure ordinariness, enjoying a pleasant childhood, school and job success, easy friendships, and a happy marriage. Motherhood landed her in a new land, for each of her children arrived with a clear mission and unique way of being. One was diagnosed with autism. None developed in accordance with timelines or charts. Life as she knew and envisioned it, was over, and the journey of a lifetime had begun. Natalia loves connecting with mothers on-line.
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