Tag Archive | bipolar

Do you want to hear about autism from someone who REALLY gets it?

imageI’m thinking about starting an interactive series, two actually, here on The Qwiet Muse – I’d love to hear some feedback about the idea.

If you know me, or have read my About Me page, you know I have two amazing children with Autism, one is Bipolar as well. They are both intelligent, articulate, and more self-aware than most people I’ve come in contact with. They astound and amaze me with their insights and their desire to better help the world around them understand the developmental and mental issues they, and so many others, face on a day-to-day basis.

I truly believe in order to even begin to understand autism or bipolar, you have to learn from the very people who understand it best – the ones who live with it.

What I would like to do is invite people to ask any questions they might have, here, or through The Qwiet Muse on Facebook or Twitter, and have them answer each question personally on videos that will post on Mondays – Matthew Mondays, and on Wednesdays – Wilson Wednesdays.

Matthew can address his experiences, advice, and answer questions regarding Autism and Bipolar, and Wilson will do the same about Autism. Both boys have lived and dealt with anxiety, OCD, depression, sensory issues, Tourette’s, medications, school, social issues, and more.

You don’t have to have a loved one with Autism or any of the other issues we might cover, it’s important for everyone to develop a deeper understanding and awareness, caregivers, teachers, neighbors, and anyone who wishes to eradicate the ignorance, misinformation and misunderstandings that are so abundant when it comes to these things.

I’ve been on this journey for almost 26 years now, maybe I’ll even join in . . .

Please leave me a reply and let me know what you think or go ahead and leave a question or two to get us started.
Thank you!

I hate bipolar.

Hate is a strong word. It wields an ugly power I don’t care to tap into, but right now I hate bipolar. I effing hate it. I hate what it does to my beautiful son. I hate what it does when it rears it’s ugly head and cycles through our home like an unyielding tornado, leaving destruction in its wake.

Tornadoes appear and disappear so quickly, there’s no time to prepare, to take shelter. No time to shield yourself, and then they are gone as quickly as they came.

They never even look back at the damage they’ve done . . . they just move on.

I hate bipolar.

Fantasy_Tornado_Monster_Storm_Clouds_Lightning_93024_detail_thumb

Rage lashes

unexpected

unprovoked

gnashing teeth

claws extended

striking blindly

Distorted thought

unbridled emotion

strike

    strike

         strike

and then . . .

Silence.

Breathe.

It curls up

in the debris

Purring, it sleeps

cradled

in your arms

 

 

 

He sparks. He is a good man.

imageMy son is like one of those little fire starter gadgets, you slide the metal prongs across the magnesium and sparks begin to fly.

The sparks he generates often flicker softly to life, creating a perfect and manageable fire which can reach right into your heart and keep you warm long after the flame turns to ember, then ash.

Other times, those little sparks burst into a raging inferno and those closest to him must seek shelter from the firestorm about to engulf them. The flames extinguish themselves quickly enough, but the damage left in their wake takes time to repair.

Bipolar is funny like that.

He surprises me sometimes. Recently, one of those little sparks set a blaze which tore through my home with such force. Before I had a chance to douse the flames, it snuffed itself out as it often does, and I sat in the silence while the smoke cleared.

Sometimes, in spite of the destructive nature these wild flames possess, something unexpected and good rises from the ashes they’ve left behind. He came to me, calm . . . as though nothing had happened, wondering why I couldn’t seem to catch my breath. I’ve learned to simply move on, wipe off the soot and just look ahead.

He’d written something he wanted me to see. I received this message on my computer a short while later: Steady is the mind that fixes, angry is the mind that destroys. If we wish to change something, to fix the problems that befall us, it cannot be done with a fist, but with a stand. And you fix any grammar errors that may or may not be present.

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Sparks. He is filled with beautiful, sometimes scary, always passionate – sparks.

He is a good man. His heart is so good.  He would never intentionally set a fire he thought could bring anything but warmth and comfort, he doesn’t even seem to know when one of those wayward sparks begins to burn out of control.

He is a good, good man.

Did you know you can change the world?

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The power to give and help and bring change is within us all. I am not unique; I try to do what I can when I can as do thousands of others everyday. I’ve seen people reach out, perhaps without even realizing they are adding value to humanity. The man who helps an elderly woman empty her groceries in the checkout line at the market has added value to humanity. The woman who extends her hand in friendship to someone without a friend has added value to humanity.

When I was a small child my mother would tell me I was going to make the world a better place and I believed her because she was one who made the world a better place. I learned well watching my mother as I grew. I learned to value others, to share what I could and do no harm. She was selfless, not a martyr by any means, but there were many times she went without for the sake of another. I remember thinking she was an angel. She hid her wings well.

imageShe taught me to value life and love and freedom. She taught me to share and care and have faith. She looked me in my eyes and said she believed in me. She really did think I would make the world a better place and I have tried every day since to do just that. The values and the morals she taught me have been with me all my life through, I’ve always tried to be true to them, in doing so I was being true to myself and honoring my mother. I knew I needed to be an example, I knew if I wanted others to learn the lessons my mother had gifted me with, I had to do more than simply live a good life.

I was open with my faith, never afraid to be witness through both word and deed. Actions often speak louder than words and I wanted to be heard. As the years passed I did what I could to help others, but it wasn’t until I had a child of my own did I truly understand everything my mother had said to me. When I looked at him, I simply knew he would one day change the world. I raised him and taught him as my mother had taught me and he grew to be a good man. I saw the same thing in the eyes of each of my children. They are my greatest contributions to humanity. They showed me a world within our world. I never knew such a place existed until I saw it in their eyes. Two of my sons are challenged, bright and wonderful, but challenged with ups and downs of Autism and Bipolar.

I was told they would never do the things they can do. They have surpassed expectations once had of them and overcome limitations once placed on them. Together we use what we have learned to help others. We volunteer our time and our hearts to not only the autistic community, but the world. Eradicating ignorance is their platform. I spend my days educating, helping and healing parents who are where I once was. They spend time mentoring their children, showing them the potential they have, teaching them to accept themselves and be strong and proud of who they are.

I share all I have learned while learning more still as I continue along this amazing journey. Sometimes I admit to tiring of it all. Answering questions and trying to undo damage and misunderstanding caused by an uniformed world isn’t always easy. My heart has hurt and my tears have fallen, just when I think I cannot make a difference, when that little voice whispers into my heart telling me I’m wasting my time, telling me I am fooling myself to think any of it matters I’ll open my mail to a heartfelt thank you from someone my words have touched.

There was a day I almost quit; divine intervention had other plans for me. I received a letter fromimage a mother I’d helped through a difficult time in her life, in the letter she thanked me and thanked my son. She said everything had changed since we’d last spoken. They found what we had found and she was thanking me for it. In closing, she wrote the words that have kept me going during those moments I’ve found myself wanting to quit. At the bottom of the page it was written, “You and your son have changed our entire world and made it a better place,” I held the note and heard the words my mother once spoke echo in my heart, “You are going to make the world a better place.”

I know this was only one person but if I have helped even one then I have done something worthy in this life. I will never stop doing what I do as long as I am able. I give my time, my heart and my voice. I don’t ask for payment, the thanks and the changes I see are payment enough. Knowing my children are learning how to give of themselves through the example I set for them, the same one my own mother set for me makes me rich in comparison to many. Any gifts God blessed me with I try to use to his glory. My words I gladly give, my time I gladly share, and if there is anything within my power I can do for another I will try.

It is rather odd to say I believe I have added something of value to humanity, but it is what I have spent my life trying to do. I don’t feel deserving of recognition, I don’t feel as though I’ve done anything better or more than any other, but I must admit I feel a satisfying peace within me knowing I have done all I could do in this life to better the lives of those around me.

It doesn’t take an effort of great magnitude to do something of great magnitude. Something seemingly small to us may be of grand importance to another. Donating clothing and blankets, volunteering in the hospitals and shelters, cleaning messes along the walk left by others . . . all these things add immense value to humanity. Everything we do accumulates and becomes a part of our life legacy. I want to look back when I reach the end of my life’s road and know I accomplished something. I want to feel pride in what I have done instead of feeling sorrow for things I could have done and did not.

imageThe value I’ve contributed to humanity will be my crowning joy on that great someday when I stand before the Lord, knowing I am deserving of being in his presence. The value I’ve added to humanity is the contribution I’ve made to the future in the lives of my children. It is my hope they will take all I have tried to teach them and carry it on, teaching others as they themselves give value to humanity.

Perhaps there is more I could do, more I should do, I know I do all I am able. I know I’ll not stop until I must. My mother told me I was going to make the world a better place. My contribution may be a small one in the grand scheme of all things, but it is a contribution nonetheless. Every one of us has immeasurable value to add to humanity, when we think of all just one person can add it is inspiring, when we think of all we can add together if we try it is miraculous. I believe we all have the power to make the world a better place.

Tomorrow I will rise and try to do something good, I will make my contribution and rest my head on my pillow when the night comes and know I tried. I want to look back upon my yesterdays and know they were not wasted. I have been blessed by the many things of value others have given to better humanity; I simply want to give back. My mother is wise and she is wonderful and I will forever be grateful for the example she set for me. My children and their children will be better for it.

I offer my heart, my knowledge, my faith, friendship and understanding. I offer my compassion, my devotion, courage, empathy and my time. I offer myself. My contribution, is teaching my children to value and respect life, to care for the earth and show kindness in all they do.

My contribution to humanity is simply contributing. There is value in trying to do something good to better humanity.

Crystal R. Cook

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I’ve never cared for roller coasters.

imageI wrote what will follow this when my son was fifteen, it is a snapshot of a particular day in our lives – he is now twenty-two years old. There was a time I feared we would not make it this far together, I feared I might not be enough. There were days I was certain I wasn’t. I took each moment as it came, holding on to hope for the next and praying for the strength I so desperately needed.

It was suggested he be placed in a residential treatment home after his third in-patient hospitalization at the children’s psychiatric hospital. My heart broke at the thought. My heart has felt the shattering of despair many times over the years.

He was my second child, as perfect as his brother. I knew very early on that like his big brother, he was going to need some extra care. He began early intervention services at two for developmental delays. He began speech therapy at three because he was not learning to speak. He was provided with occupational and physical therapy to help his body assimilate to his surroundings, to try to help his sensory functions work with him rather than against him.

At three he was enrolled in a special needs preschool. At five he finally began to speak. In kindergarten they diagnosed him with ADHD and OCD, and he was very much both of those things, but there was more, something yet to be named.

By second grade he could no longer deal with the constant changes and expectations of a mainstream classroom and was moved to a special day class for what they called the emotionally disturbed kids, it was right across the hall from the regular special ed classroom.

This was the year of his first hospitalization. He was diagnosed with Bipolar Disorder and Autism by sixth grade, the same year he finally stopped soiling his pants. The medications they gave him helped . . . some. Middle school regressed him, it turned his world inside out, that was the year of his second hospitalization, the next year brought a third.

Done with doing it their way, I fought until he was placed in a special needs high school, the same one his older brother already attended, there he flourished educationally, but Bipolar is an insidious parasite we had to battle each and every day. We still do.

I look back on those years and remember how dark they often were, I remember wondering if we would ever come up for air. He has worked hard, he is an unbelievable young man. He no longer cycles as manically and as rapidly as he did in his youth, but he still has his many ups and downs. His life is not easy, navigating through the world with autism can be tricky enough without your own mind turning on you periodically in the process.

He amazes me. There is so much to his story, details I wish I could forget but know I mustn’t. I have to record them, hard as I know it will be. I want to share our journey so people will see the hope and the determination that can change a life when there are those who say it cannot be done.

There is always, always . . . hope.

This morning, before the sun began to shine he told me I ruined his life, and then he said he loved me.

When I thought he had calmed I said good morning to him, he said I purposely say things just to make him feel crazy, and then he said he loved me.

After he’d eaten his breakfast he told me it was my fault he is the way he is, and then he said he loved me.

He told me he’d rather be anywhere than here, and then he said he loved me.

This morning, before my day had a chance to begin he told me he never should have been born, and then he said he loved me.

This afternoon he threw a fork at his brother and then helped him clean his room. He screamed and he yelled. He cursed and he sobbed. He raged and he rested. He threw his shoes at me and then he asked for ice cream.

He had a fit of laughter followed by a slamming door. He said he was going to ride his bike off a broken ramp down the road, it’s dangerous I say, he replies, I can do it, I won’t get hurt, nothing can hurt me. I prayed for angels to keep close watch as he walked out the door.

Tonight he hugged me, and then he said he loved me. He said his prayers and he closed his eyes. As I walked from the room he said, “Mommy, today was a good day wasn’t it? I smiled through my tears and said “Yes. Yes it was little man.”

I never know what tomorrow will bring. Some days I don’t know what the next minute will bring. My fifteen year old son is bipolar. He cycles rapidly, the roller coaster that is his life never ends, it slows every now and again, but never does it stop. I hold his hand as we ride up and down and back again. Sometimes I want off. I want to plant both feet back on the ground but I can’t let him ride alone, I won’t let him ride alone.

He has mood swings and he rages. He is happy and he is tormented. He sees things and hears things that aren’t real. When he is happy he jokes and laughs and tells me he loves me half a dozen times each hour and I feel like I am walking on air, but I don’t know if that same boy will walk through the door after school. Will he hate me? Will he hide somewhere and stick safety pins into his fingers? Will he throw things at us or will he be able to smile still? I don’t know. I never know.

He is such a great kid, so beautifully and perfectly great. He has the sweetest smile and his laughter can melt hearts. I close my eyes each night in prayer and I open them each new morn with hope. I try not to think of what the future will bring, I just want to get him safely to tomorrow. Some days are better than others.

I do what the doctors say; I try what the therapists say to try. I grow weary, I do, but one day I know I will rest, one day I know he will as well. I have hope and I have faith and I have a son I love more than anything else. He is a good boy.

An angel with a broken wing, learning how to fly . . .

Crystal R. Cook