Tag: special needs mom

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This is Me

I am a wife, a sister, an employer, and friend. I am a person who needs to feel love, purpose, and inspiration to thrive, and someone who counts the quality of relationship as the greatest metric of success, but also dreams of accolades and fancy trips. I am someone who works the details and delves into big feelings to accomplish goals. Sometimes I get lost in myopic distractions, but I try to surround myself with incredibly honest, intelligent people who help me stay on track. I try to be aware of and continue to search for my strengths and my weaknesses. I am always trying to be better.

All these things are me and I have had the great fortune to bask in significant societal successes, but I am Mitchell’s mom first, foremost, and forever, and I want to be the very best mom I can be! Two of the many tools I use to do that is, self- care and work. In many ways, I have been building careers since I was fifteen so that I could be the best mom possible to the best kid in the world! It’s the most important and rewarding job I’ve ever had! It’s also the hardest.

I have been a professional actor, an educator, and a business owner for over 30 years, but it wasn’t until I became a special needs mom that I finally found my true purpose. It wasn’t until I had to face down the real meaning of trust, control, and the actual possibility of losing my child that I discovered who I really am.

As a performer, I learned the value of empathy and community. I honed tenacity, resilience, and failure until I became an expert in appreciating hard work, process, and success. And I realized that behaving with engagement care is often much more impactful than being right. Acting taught me to focus! To find my objective and fight for it through any obstacle, whether it be self-inflicted or circumstances out of my control. I learned from and worked with extraordinary talents that helped me develop a life long, hungry appreciation for the study of the human experience, for our stories and our connections. I learned how to hold the spotlight with awareness and humility but stride in confidence, and I came to cherish the magnificent power of relationship. As a performer, I learned how to listen!

As an educator, I learned that if we communicate with succinct compassion, people are open, kind, and capable of extraordinary things, especially children. I learned that to believe in ourselves we not only need someone to believe in us, but we also need great teachers. I learned that teaching isn’t about doing so much as understanding why and how to accomplish a goal and the ability to break down and help practice the process of learning. I spent over 25 years practicing and studying communication, development, and perspective. I learned how to lay a proper foundation of healthy expectations followed by developmentally appropriate, positive follow through. And, I learned how to break things down so the student could become independent with the skill and then make it their own. I learned when and how to be tough and when and how to be soft. As an educator, I realized that all the technique in the world means nothing if trust and communication are not built first, and I learned that although no one can take the place of a parent, often parents are not the best teachers. As an educator I helped students reach heights they didn’t know they were allowed to reach for, become aware of tone and delivery, consider others, problem solve, and think about their actions from inception to consequence. As an educator, I learned the value of work over words, of collaboration, and second chances. And I learned to never stop learning. As an educator, I learned to listen!

As a business owner, I learned that real power comes from speaking truth and setting Boundaries with sincerity and care, that nothing can replace time and experience, and that I cannot please everyone. I discovered the more clear I could be with my expectations the more successful relationships and productivity became. As a business owner, I learned to honor myself and the accomplishments I achieved over the opinions of others. I learned that no amount of money is worth promising more than I can deliver and that nothing holds more worth than valuing oneself appropriately. As a business owner I learned that everyone is coming from something and somewhere I may not understand but that unless I hold true to my mission, I can not supply the service I promise to provide. As a business owner, I learned to listen.

 

As a special needs mom, I learned that what I want is not always something I can make happen, that what’s fair is not always possible, and that grieving comes in many forms including gratitude and love. As a special needs mom, I learned that in order to help my child I first had to heal myself. And I am constantly to learn how to let go of the way I thought I wanted life to go and appreciate the moments I am given. Because, no matter how prepared I am or how diligent, no matter how kind or conscientious I am, it is not in my power to heal my son. It’s only in my power to love him, learn everything I can, find the best doctors I can, and be the best version of myself possible.

I have taught thousands of students, put on hundreds of musicals, developed multiple theatre schools and programs in Southern California, Colorado, and Philadelphia, including Colorado Children’s Theatre that began as a small school in the foothills of Denver and grew into four locations, earned multiple awards, and touts hundreds of success stories. I have taught professional actors, am an award-winning actor and choreographer, and a SAG accredited actress. I have studied with renowned teachers including Kristen Linklater at Emerson College, Karen Tobey, Members of the Stella Adler and Lewis Smith Academies. And I am a consultant for many new entrepreneurs trying to create a business out of creative endeavors.

My goals have changed and I am not driven by professional success but by the need to be the best I can for myself, my son, and all the parents struggling to not only survive but thrive in a world that is not yet ready to embrace everyone, especially those with special needs. I try every day to stay in the moment, let go of injustices I can’t control and practice faith.

My son is sick, and sometimes it’s hard to be his mom. Sometimes the hard times last longer than I have the capacity to regulate. But, being his mom has also been the greatest gift of my life. I am so grateful to have come this far. To have relationships that fill me up and make me feel loved and supported. I am proud of the person I have become, the person I am still becoming, the person I have always wanted to be.

I would trade it all for my son to not suffer. I would trade it all for my little boy. But I can’t. So I will love and live the best I can. Am I grateful for that too.

All I want now is to share what I have learned, to stand beside other parents who have been where I have been, I don’t have all the answers, but I will never stop searching for them, and I know I will never have to do it alone!

I am sad and scared, and I am angry. But I am strong and full of love. I am growing. I see myself and I see my child and I am floored with emotion.

I am grateful.

This is me.

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A Med for You. A Med for You. A Med for You.

We are no stranger to meds.

Want to know how anti-epileptics work? Give us a call.

Want to know how they metabolize in children? Yeah, we’re pretty much experts in that.

Want to know about reflux and constipation, cramps, and how to mitigate all versions of pukiness? We’re your go-to family.

Want to know which meds have a short half-life or a long half-life? Just ask us.

Want to know how anti-epileptic meds interact with each other? Done.

Want to know about adverse side effects? Here let me show you the book I’ve written on the subject. It comes with pictures and stories and a vial of endless tears.

Want to know about mood stabilizers?

Oh, wait. Gimme a minute, we’re just getting to that one.

For almost a year, we’ve been trying to decide between an antidepressant, a stimulant, or an anti-anxiety med…for my eight-year-old.

It’s taken four years of growth and mental development, anti-epileptic trials, and countless Vanderbilt tests to try and flesh out if Buddha’s behavior and emotional IQ is rooted in epilepsy, ADHD, anxiety, depression, or side effects from his anti-epileptics. It’s impossible. Because of course, it’s probably all of the above.

The question is, what do we medicate and what do we leave alone?

I told Buddha’s psychiatrist, “I just want to make his life easier”.  “I just want it to not be so hard for him to get through the day. And we’re at a point now where the tricks and tools aren’t enough.”

We have so many tricks on hand to make his life easier we should have a Vegas Show, and I should be walking around in sequence, Vanna Whiting all over the place with Dave pulling rabbits out of hats. Seriously, we will try almost anything to ease this kid’s daily challenges. And we have some damn good tricks.

Meds are serious. But so is mental health, and we are performing our due diligence. We have been considering these mood meds for almost a year. For our eight-year-old! We’ve been collecting data, weighing the pros and cons, and consulting other parents. We have monthly follow-up appointments with his neurologist, his psychiatrist, and his psychologist to talk through the options. We are trying to foresee all outlier possibilities and be aware of all the pitfalls. Mostly, we just want him to have it a little easier. Isn’t it enough that he seizes every day?

Until recently I didn’t think there would ever be a scenario in which we would add one more med to this poor kids’ already overloaded system. But then, of course, life is harder at some moments than others and answers can present themselves before the questions have fully formed. So when second grade with more demands and fewer friends happened, developmental stepping stones ramped up, a new antiepileptic drug with major adverse side effects was tried and tried again, we started to open our minds to the idea. Then three trips to the ER, one admission, and one intervention in which they spoke of taking him to the psych ward…or whatever they call it nowadays, hit us over the span of just a few months we were more than ready to pull those magic mood shifters out of a hat.

It’s hard enough to diagnose ADHD, anxiety, or depression in children, but add epilepsy and four other meds into the mix and it’s a downright, ‘your guess is as good as mine, let’s just try it and see how it goes’, Frankenstein experiment.

On an eight-year-old!! My eight-year-old!!

The cruel irony is that it’s very common for kids with neurological disorders to suffer from other neurological disorders. I guess it all goes hand in hand, or synapse to synapse, as the case may be.

So, here we are. Lit up for the world to see on a stage I could never previously imagine standing, and I have stood on many many stages. We’ve hit our mark and we’re getting ready to experiment again in the hopes that this time we might create a life without thoughts of death, high-cost impulsivity, or major emotional dysregulation. Mostly though, we don’t dream that high anymore. Mostly, we just want to ease his challenges and help him get through the day with some moments of emotional freedom that aren’t scheduled, measured, timed, or earned.

So, we’re waiting to check a few more boxes before we add another bottle to the already filled pill drawer, and then we’ll capture some lightning and flash it through the audience to see what we get.

Please hold, for Act II.

 

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“Should I Stay or Should I Go Now”…Love Part III

“Should I stay or should I go now?
Should I stay or should I go now?
If I go there will be trouble
And if I stay it will be double
So ya gotta let me know
Should I cool it or should I blow? ”
The Clash

A funny thing about living past my 20’s and 30’s is that I can’t help but notice trends in my coping style. I can’t help but gather data that paints a picture of who I’ve become. I suppose, on one hand, it’s another way of saying, “the choices you make define you.” But I think it’s more than that. In my 20’s, despite my best intentions and attempts at self-awareness, I thought I was breaking patterns. I thought I was defining myself. I did try, and that counts for something. I believe it was part of the process, and I’m not un-proud of who I am. It’s a boon for me that I love big and I love hard. It’s an emblem I am not ashamed of. But I spent much of my life loving and leaving fast and I see now how it’s led me here. I’m good. I’m where I am in the moment, and it’s OK. I guess I just wonder if I was meant to be or could have been someone or something else. If I could have been more. I wonder if there is still time.

Mostly I’m just surprised by how much I thought I was creating of myself when in fact I was simply responding to programming and becoming.

Despite my most deliberate efforts, I lived my defining years through a set of experiences I had very little choice in making. My childhood imprinted the belief that told me who I was so the choices I made were choices I was bound to make.

Should I stay or should I go was my subtext and I didn’t even know it. In a way, should I stay or should I go determined the course of my life. It certainly determined who and how I loved.

I wasn’t able to see how I had internalized my childhood life until after I had made choices based on it. It was only through reflection of that “lack of choice” that I was able to finally begin becoming the person I wanted to be. I suppose that too was a process in the making, and part and parcel of being a person, so it’s OK. I guess I just wish I hadn’t taken so long.

Nevertheless, here I am, not too much worse for the ware. I’m still standing. I haven’t given up. I’m happy. I’m not happy in the way I thought I would be in my twenties. But deep in my being, I know happiness because of what I’ve lived through. I know a new happiness because of the love of people who stood by me, including love I’m learning to give myself. I guess at the end of the day, that’s pretty impressive.

“No one’s gone till they’re gone”.
Fear the Walking Dead.

I find this idea of “becoming’ endlessly fascinating. And I always wonder how “being” applies to love.

I want to know, realize, and become everything I possibly can. I want to see, really see, who I am. I want to be the best version of myself. Mostly, though, I want to help guide my son’s childhood with as enlightened a hand as possible. I want to know I did my best to help him walk a path where he makes better choices in his defining years than perhaps I did. At least less desperate choices.

I live by gut and heart…and then the brain. I love my passion and my drive, I’m OK making my way through the heart first. That being said, I was smart enough to marry a computer developer and inventor who lives by data. Also, Buddha’s diagnosis has proven impossible to survive without data and logic So, luckily, I have also come to appreciate, if not love, data.

I can be taught.

This sentence, I love data, if you knew me when, is a complete juxtaposition of who I was or wanted to be many years ago. But there it is. Life and experience that lead to a choice where I am now an avid gawker of data. (Just for the record, I don’t have a spreadsheet or anything. I write I think, I reflect. Some systems just don’t need to change.)

With new wisdom, experience, love and forgiveness, fault and failure I use this data not only to understand myself but how I define love. Because to me, it all boils down to love. How I love myself determines how I love others. The better I love others the better I love myself. Round and round it goes until purpose, contribution, peace, and happiness all collide. At least that’s my theory.

I want love to be what defines me. Big love.

Collecting four decades of data on my personality, partner choices, jobs, achievements, and relationships I found some interesting trends. Trends that help me understand what love means to me and how to love better!

Here are my 10 most common trends based on this data.

1. I am loyal to a fault
2. I crave affection and soothing in atypical amounts. Meaning I need more than a lot of love to make up for love taken as a child.
3. Justice is subjective unless you’re cruel to others. Then your just an asshole.
4. I am an addict, therefore, until my 40’s, my life was seen in stark black and white.
5. I want to save the world from loneliness and unworthiness. I want to be saved from loneliness and unworthiness.
6. I believe in hard work and purpose. The search for the meaning of life.
7. I am a good leader, not a great employee.
8. I believe I am good enough for success but don’t really believe I deserve it.
9. I have judgment for people who have children that aren’t willing to become what they need you to be to raise them without loneliness and unworthiness.
10. Perfectionism is a blessing and a curse but not something I’m entirely willing to give up. It’s a mark of my coding.
11. If you hurt me, you are dead to me…forever. Without even a goodbye. You are erased.

And here lies the rub. Number 11: If you hurt me, you are dead to me…forever.

“Should I stay or should I go?” Most likely, I will go.

Not very enlightened.

My subconscious definition of love is equal to abandonment or enmeshment. So, I believe that if you love me, you will leave me or assimilate me. In attempts to hold my own boundaries, to be myself, I leave people as fast as I fall in love with them. At least I used to.

I am learning that’s it’s allowed, even right, to redefine love as we go along defining ourselves. I didn’t believe that as a child and think it’s why I’m happier now. I have given myself permission, more and more each year, to chose love that works for me rather than let love just happen to me.

If you hurt me enough, you will be dead to me. But if you keep trying to communicate, to understand me as I try to understand you, I won’t run anymore. I will stick it out.

Your path isn’t mine to decide. You have the choice. I don’t want to run. I don’t want to be a runner. I just want to know I’m worth more than tolerating abuse. I want a big love that’s real love.

I’m not entirely healed so if you love me, please don’t fuck with me. I will go and that will be that.

I want to choose to stay instead of go. I want to see who I can be, how much better I can love when I stay instead of go.

 

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I Love You…Me. Love Part II

I have known love, faked love, been confused by love, made love up, forced love, run from love, and controlled-well tried to control-love. I have watched love morph and seen love grow. I have watched it die. I have been hurt by love, been healed by love, discovered parts of myself through love, been stranded by love, driven to love and driven by love. I have been abandoned by love.

I have loved and been loved.

I have searched endlessly for love, for connection. And I have loved outwardly on every level in every way.

I do not love myself.

I know that my Odyssey, as cliche as it is, is the search for true love. My battles have been fought through attaching myself to outward love as a means to find inner acceptance; true, compassionate love for myself. And I have to, at least, recognize that I am a brave and valiant fighter, determined to succeed in creating love or die trying. But I do wonder if maybe I’ve been fighting the wrong battles, creating demons instead of following my heart. Have I been fighting myself as a means to love myself? Have I missed that love is grace and not earned through punishment, but granted by the miracle that we’re here at all?

Either way, I have Don Quixoted my way through life long enough. As romantic as it is, I’m tired. So, I think I may, for once, try the path of least resistance. It goes against my very being, but insanity, as they say, is repeating behavior and expecting a different result. I may be stubborn and have dabbled in crazy, but I like to think I’m not hopeless. I’d like to think I can be taught to try something new, not just try again.

I don’t know how I came up with this. It’s probably the percolation of therapy and experience, knowing I can survive rock bottom, and the stability my little family gives me even through trauma. Whatever the culminating cause, one day I tried something new and it’s helping.

I confess that in my grief and fear I can be….well, judgy. The latest example of this is the frustration, borderline rage, I feel navigating the city streets. I swear to God, people, PAY ATTENTION!! It’s not that hard. Walk on the right side of the path, keep the flow of traffic going, and don’t be an ass hole. It’s not that hard.

When I first moved to Philly I loved walking through the crowds, being a part of the flow. Now? I hate it. All I see is people being idiots!

I hate that I do this. I hate the stress it causes. I hate the energy I waste on being angry. I hate how people don’t seem to care about each other.

Of course, this is just a simple projection of my inner fear and judgment. And I hate that too. So, I had to find a way to get from point A to point B without an angry anxiety attack.

I have been playing with the idea that we are all made of the same stuff. I have begun to take away the story, the narrative, and let it lie that we are all….well, stardust, I guess. That we are simply the same. I have stripped the complicated excuses away. I have always felt myself an outlier, I have never really felt apart of the “all”.  So through my life, I created a fairy tale where I was the outsider banging on the door of existence for entry. Since this basic shift in perspective, though, this acceptance that it’s not the actions that deserve love but just the insane fact that we all ended up here at all, I began a little experiment to try and ease the angst.

As I walk down the street, I now say, in my head of course, to everyone I pass, “I love you”. I don’t mean I want them to come to dinner or even that I want to be friends. I just mean, I love you. We’re both made of the same stuff and by acknowledging that I can know love. I can love you. It is not an attachment love, but a recognition.

And guess what? It works. When I stopped putting labels on love, expectations of what I needed in return, and simply met existence with awareness, I softened. At the very least I became less hateful and angry.

For most of my life love was something I needed to fill the holes. I love love, I love being loved. I love soothing and reassurance. I love touch and acceptance. But that isn’t this love. This is a new love. A softening love. A simple, easy love.

I wasn’t loving wrong, but I was loving for the wrong reasons. There are many layers of love, many ways of connecting and I am grateful for the love I’ve known. But, I was missing the most obvious, the most simple love of all. The most basic but important kind of love. I wasn’t letting in the love that comes because we are all the same. That we’re here at all and we call came from the same source. I don’t know what that source is, but I will no longer punish myself or others because I don’t. It’s OK that I don’t know the source. Because what I do know is that if I can love strangers on the street simply because they exist, I can certainly love myself.

 

 

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Love-Part I

I love love. I mean, I really love, love. It’s everything to me, always has been. It’s the driving force behind every decision, good and bad, I have ever made. Love is powerful. Love heals. Love is a tool for growth and goodness. Love is respite and breath. Love broadens and coaxes out the best in us all. Love keeps its promises.

I believe free love is real love.

I believe love is the only thing that can save us from our collective self-destructive impulses, from ourselves.

I don’t always know what it looks like, but I know when it’s right. Love is real and right when everything works out…not usually the way I envisioned, but the way it was meant to. In the end, if I can get to the end, love is always right.

I was lucky, I came into the world knowing that love is the answer. And I was luckier still because even through heartache, bullying, and betrayal, I was encouraged to let love lead. Love was always an acceptable form of currency in my life, even if it wasn’t always evenly traded.

Since my first memories, I have committed myself to love; to absorbing, sharing, and holding, even hoarding when fear takes over, as much love as possible. From every atom in my sphere, through every second of the day, until forever, love has and always will be my answer.

What I didn’t know when I took on the mantle of love as my personal life quest, at the tiny age of impressionable and trusting, was the many forms of fear, judgment, and insecurity that masks itself as love. Love is not always discernible, but real love is always right. To me, that is what it means to be human. Finding real love is sifting through the pain to the heart.

Real love, pure and unselfish, empowers and emboldens us to be our best selves. To relish in the gift that is life, to see past the pain. It is the tradeoff of form and function, of suffering.

Love is worth it. As a child abandoned by her father, a young woman with a broken heart, and a mother with a sick child, sometimes it’s all too much to bear. But I will die, hopefully not soon, remembering the love. Love is the particles I will take with me into the next iteration of my being. I have no doubt.

Yes, I am human and I hurt…easily. And as such, love is complicated and full of expectation and foggy lenses that I will need to spend every day I am granted cleaning and refining.

But love is why I get up every day. And when I can’t get up it’s because I misconceive love, or try to control it to abate my grief and fear. Love has shown me what it means to be human. Love, through every struggle, sets me free.

How do I know love? That is a question deserving of far more attention than a simple singular post. So I am going to spend the next few weeks diving into the answers to these questions: How do I know love? What does love mean to me? What is love? How has love changed for me? And others.

To get me started, here is my answer to how do I know love?

I know love as a reflection of those I love. Their open hearts, their generosity, their kindness, their affection. I know love through a filter of experiences reflected through generations of resilience, trauma, pain, and joy.

I know love from:

A mother who was saved by the unexpected fullness of the love she felt for and by her children.

A father too afraid of himself for real love, who through lack thereof, showed me what love isn’t.

A brother who was saved by the love of his mother but can’t yet admit it so is held hostage by his resentment.

A sister who is taking New York City by the balls and making it her own because she knows the love of a good man. (That’s NOT the only reason, but it’s helping. And we all deserve the love of a good “other”)

A leader who allows himself mistakes but does not tolerate ignorance.

A boyfriend who loved me for who I was and then left me for the same reason.

A boyfriend who didn’t love me even though I pretended he did.

A dog who was batshit crazy, but insanely loyal to me until our last parting.

A friend who decided early on that she knew the love her heart needed and was smart enough to not listen to the naysayers. Me.

A stepfather, mentally ill and emotionally unwilling to face his own messes. A man who gave up fighting his selfishness and turned to manipulative control instead of love.

A director who saw more in me than I ever saw in myself and gave me the opportunity, guidance, and support to trust myself and shine as bright as my light could beam. A man who let me be exactly who I was in that moment without asking for more and then trusted me enough to hold the spotlight for him.

Three nannies who were exactly the people Buddha and I needed them at exactly the right time. Three different women who saved my life and made his so so so much better through their devotion, intelligence, objectiveness, spirit, and love.

A friend who has stood by me supported me, loved me, and accepted me for over 25 years. Through every bad boyfriend, job change, crazy family moment, and my son’s diagnosis she has been there because she is my friend.

A husband who didn’t believe in happiness, who didn’t believe himself capable or deserving of love until he held his son for the first time.

A son shattering from the inside out, who doesn’t know he may be systematically dying because the love from his parents is enough…for now.