the sound of chains

Though this is an autism blog, I also blog about other stuff going on in my life, and though I can’t go into specific detail, I want to describe to you the sound of handcuffs and shackles on your child.  This is my only typically developing son.  He has made some poor choices and has thus far refused to change.

I have been attending court… but this weekend court session was not at a courthouse, rather at Sharpes, a real jail, not the juvenile detention center, but real jail.  I pulled into the parking lot and my stomach was sick, looking at the fences with barbed wire, my hands began to shake.  I walked inside and was told an officer would bring me down to the court room.  Each doorway, another sealed door, another reminder of freedom revoked.  Upon entering the courtroom, it was freezing..ice cold…it looked different, the judge was behind plexi glass and I was sequestered in another room and was told when they called his name to approach the podium and only speak if I was spoken to.  As they called his name, he shuffled as best he could in shackles and cuffs to the podium, I stood to the left of him.   I was listening as best I could.  All I could hear was the chains.  It was heart wrenching and at the same time finally feeling like he was having to be accountable for his actions..dare I say a relief?

The judge gave me an opportunity to speak and I was brutally honest.

This made my son so angry.

Even in shackles and handcuffs he had an aggressive stance toward me.

Then it was over and I was sequestered in the original room and was to wait until I could be taken back upstairs.  The corrections officer that took me back upstairs asked me if I was okay…I asked him if he had seen the aggressive stance the kid took toward me, he said he did.  He told me it was obvious I needed help.  I told him about all of everything I have tried.  

Still climbing the rock wall of life… barefoot, covered in baby oil.

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when all you can do is breathe

Lately….a few of my clients and friends have wanted to learn the “breath” of running.  It’s not an easy thing to teach, nor is it an easy thing to learn, once mastered though, you can run as long and as hard as your legs will take you because your lungs are fine.  Its deep and with the cadence of your steps…In 2,3,4 Out 2,3,4 and so on…as your body requires more oxygen your breaths become somewhat shorter…

When breathing in your everyday life, it seems the same way as running.  Go with your cadence, and try not to hyperventilate.

I spent the afternoon with Maxwell and the new waiver support coordinator.  Praying for funding to continue and his help to proceed.  He is finally getting help, making gains.

For many other reasons I am not breathing, I am barely breathing and at times hyperventilating….I need constant reminders to just breathe.  My mother gave me a bracelet that I never take off…it says,”just breathe”.

My body is requiring much more oxygen than is available and its not there.

-Just Breathe

Climbing the rock wall of life, barefoot, covered in baby oil..

 

-A

 

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timehop revisited an old blog entry

Today I downloaded the Time Hop app.  My “memories” feature doesn’t work, and saw one of the blogs I posted a year ago today.

The title of the blog entry was, “Ain’t no one gonna break my stride”

I remember it like it were yesterday, I was teaching a Bodyworks class, we were half-way through the class, doing planks and mat work when a caterpillar started crawling across my yoga mat.  In that moment, tears started streaming down my face and dripping onto the mat.  Anyone who knows me knows my connection with butterflies, moths and caterpillars.  This guy kept moving, slowly but surely across the mat, I have no clue where he came from, but I took it as a sign.  Look at this guy, he has a million legs and it’s still taking him forever to crawl across this mat and he isn’t giving up.  It was such a powerful, intense moment for me, and I was working, and trying to count and focus and could do none of that because of this caterpillar, crawling, never giving up.

Today I took Maxwell back to the group home, I cried on and off the entire way home.

Climbing the rock wall of life, barefoot and covered in baby oil…

-amy

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feel everything with your whole heart

Feel everything with your whole heart, allow every soul crushing and heart lifting moment come to you and don’t shut them out or hide behind them.

I literally break my own heart about 5000 times a day.  It’s not my heart’s fault, it’s not my fault, it’s not my children’s fault ( well most of them) …but honestly I can say with true certainty that for every day for nearly 20 years, my heart breaks a little, some days a lot.

Yesterday and today were a lot.  I brought Maxwell home for Christmas, many of you know he’s in a behavioral group home, something I fought to get him for awhile, years…and yet now that I got him the help he needs, it doesn’t make it any easier.  He is super self-injurious this weekend, and I know he’s out of his routine of the the group home, but its so incredibly hard to watch.  I have spent 90% of the time since I have gotten him trying to get him to not self injure.  Head banging, punching his eye sockets, punching his nose til its bloody, and eye gouging.  It is absolutely heart-wrenching.  No parent wants to watch their child suffer, and most parents would take that child’s place.  I feel as though some days I would rather die than watch him like that.  Don’t get your panties in a twist, I am not threatening to kill myself, however, I would be lying if I said I haven’t thought about it.  It breaks me, brings me to my knees.  It’s out of my control yes, however its still my son, the child I grew in my belly, they all are.  They all are suffering and most of their issues are out of my control.  I have never been a control freak.  I usually go with the flow, you must when you live with people who get naked at the grocery store.  Lately, I feel a shift, a movement within me to do something more than I already am.  I struggle with this feeling because I am stretched so emotionally and physically as I am…but I can’t stop the feeling from coming.  I don’t know yet what this means, but I know big change is going to occur, within me; emotionally, physically and mentally and most importantly spiritually.  I have tried to work on these one at a time, it does not work that way, we are not robots, we are human and we feel everything.   So I must go back to the drawing board and look deeper and focus. Challenging myself on all of these levels will help me grow.  

As of late, My ten year old Christopher has been not well, losing weight and going through something medical on top of his autism.

 Stone, my oldest is struggling too ( though high functioning autistic) he is legally blind and will never drive.  He doesn’t understand a lot of common sense stuff, the type of stuff that would keep him safe, street smarts, but ask him a date and something about history and he will tell you the day it was on.

 Trevor my only “typically” developing kid is back in trouble with the law and expelled from school… meaning more court dates, more stress and more of a strain between he and I and our already struggling relationship.

If feelings aren’t right or wrong then I feel sad, I feel broken, I feel like I am at the end of my rope and barely hanging on…

Climbing the rock wall of life, barefoot, covered in baby oil with no chalk bag in sight.

-amy

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wishing I could skip Christmas and stuff

Remember Atreyu and Artax?  Do you remember how the sadness of the swamp won and Artax was lost.  The Nothing, just like in The Never Ending Story is something most of us fight daily, all in different ways, but we all fight the nothing.  Honestly, if I had no kids, I would be somewhere at Christmas.  I am not a Bah Humbug kind of broad, I am just not feeling it.  It is a life goal of mine to actually do something Un-Christmasy at Christmas….somewhere far away from here. It’s also a life long dream to live in The Keys, Hey a girl can dream …right??

Chris has lost almost 20 pounds in the last few months and his behavior at home has changed considerably…super lethargic.

So we went for blood work.  Upon entering the hospital I walk through a security-type set up they have now…Placed my keys and cell in bin and walked through the metal detector.  Chris walked immediately after me….The guy starts yelling at him, Chris has no idea.  The guy said in a British accent,” it clearly states green when you can go”  I said,” He is autistic and doesn’t understand this process”

After we got through all of that it wasn’t too long before they called his name and he was being held down by 4 people and myself to get the blood drawn.  I explained to the techs…..and

they were actually really awesome and got it done.  I had been showing him videos and trying to explain…..the doctor even gave him a light sedative to chill him out prior and he still freaked.

We have a follow up about this blood work on Monday, and an appt with a neuro.  His blood sugar was elevated even fasting and his liver enzymes were super high.

We got to bring Maxwell home for Thanksgiving and it was pretty good.  He did well.  When we got him back to the group home.  My heart hurt, he was happy, back in his routine….I have seen him once since this visit home with us.  Many people ask me, ” Can Max come home for Christmas?”  The answer is YES, Max can come home whenever we are able to bring him home.  He is not there because he was taken, he is there because he needs this care.

As a parent, it is so hard.  I can’t really put it into words, and only if you’ve been in this situation can you comprehend not having your child with you.  Realizing you can not give him everything he needs.  One’s heart and brain usually aren’t on the same page anyway, but when you do what’s right for the child and his quality of life, the other children and their quality of life, it doesn’t always mesh with your heart.  Every time I leave him there, its as if my heart is literally ripped from my chest and thrown to the ground.  Typically it takes me 10-15 minutes after I leave to compose myself enough to even drive, and usually that is because he is crying.  He wants to come with me.  He wants to be with me.  I want to be with him.  It’s as if my soul is literally aching until the next time I kiss his freckled cheeks.

I am going through some other stuff too just needing to breathe and can’t find air.

Needing clarity

Still climbing the rock wall of life barefoot, covered in baby oil..

 

 

 

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mending fences and hearts

So Hurricane Matthew rolled through and we really lucked out.  Only lost a fence and power and water…..I know so many lost so much more and it could have been so much worse for us.

The night Matthew hit us, I heard the wind whipping up, the rain had started …I couldn’t sleep..I heard the septic alarm going off….So I grabbed flip flops and a raincoat and went out to silence it….on my way back in, the power was flickering ..in the glow of the porch light…off and on…clung to the exterior wall of my house, a moth…clinging to the last little bit of light, of hope.  I stood there in amazement for a minute.  Signs are all around, just be aware.  We may not always know what they mean.

5 minutes later, power was out…The next morning, it was still windy and rainy but safe enough to assess the damage.

I worried all morning about Maxwell, how they made out…I finally got word that they were okay, no damage and no power loss.  What a Blessing!

I have been excessively emotional this past week.

Some days we are just like the moth in the storm …clinging to hope, light.  Lately, there have been more of those days than not….

Climbing the rock wall of life, barefoot, covered in baby oil.

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Her eyes met mine and I knew; I see you momma, I see you.

It was hot, extremely humid, and starting to sprinkle out.

We were doing an open house in conjunction with the health food store next door and fifty bajillion other vendors.

She sat with him on a bench straight across from me, he flapped joyfully while on a tablet device.  She patted his back, and then took him into the health food store, they came back out and sat on a bench.  I watched, as she calmed him, later I found out he was a twin.

I earlier had spoken to a woman and got her to sign up for a raffle we were offering…later I found out she was with this woman and this boy.  As the woman came out of the store and met back up with the woman and boy.  I asked if she was with them…she said yes, and that he was….I put my hand on top of hers, and stopped her….I said,” I know..tears welling in my eyes…get it together girl you are at work, you are at an event for work…be strong.  I said,” please give her my card” and wrote her a note on the back.

“I see you momma, you are important and you are amazing”

-just another autism mom

 

 

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It could always be worse…

I often hear this replaying in my brain as a reminder to myself…I am human we all get down, we all get grumpy, we all get depressed; and yet, it could always be worse.

Depression is nothing to take lightly.  I will be the first to admit that I deal with it and major anxiety.  My anxiety has been worse as of late, maybe because of Maxwell, maybe because of Trevor’s antics, who knows; and yet it could always be worse.

My car is broken, I am behind in my mortgage, my youngest son is living in an intensive behavior group home, my other son is having seizures; and yet, it could always be worse.

Your life is what you make it.  Wake up every single day and make your life the best you can.  I often hear people say,” I can’t”  I shoot them down immediately….. okay I understand some of us have physical limitations, myself included.  However, by telling yourself and everyone around you that you can’t…you are setting yourself up for failure.

Do not limit yourself, believe in yourself.  Take charge of your life, make things great again.  They may not be so great right now, you may have a slew of things going on.  Find one good thing inside every day.  You must.  Take 5 minutes and I don’t care if you need to lock yourself in the bathroom, but take 5 minutes and reflect on how precious and valued your are.

Take control of you, you and only you can do that.  You can not do that by allowing others to tell you how you should live your life.  Do it how you need to do it.  Do it so your face feels the sunshine daily, do it so you know that every breath you take is precious.

Do it for you, and no one else.  Do not be brought down by the smallness of others.

Remember the four agreements :

#1 Be impeccable with your word

#2 Do not take anything personally

#3 Do NOT make assumptions

#4 Always do your best

When I got these tattooed on my hand, Don Miguel Ruiz, the author of The Four Agreements, reached out to me after seeing the photo on social media. This book changed my life, it’s not a cure all, or a fancy self- help book….Rather a way to view everything in a much different light.  A light that will allow you to be okay, when you aren’t feeling okay.  The tattoos of the four agreements on my hand is a reminder to myself, even on my darkest days, I am enough.

 

Climbing the rock wall of life barefoot, covered in baby oil….

 

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what the pictures didn’t show

 

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the blog with no title

Why is life a constant 5 steps forward 17 steps back?  I guess that is the way it goes.  Some people will read this an roll their eyes, maybe not even get onto the next paragraph…that’s cool, because primarily I write this for therapeutic value for myself.

I will begin with my oldest and work my way down with what’s going on in my life right now.  Tomorrow, my oldest son Stone, 19, starts college.  I have a lot of mixed emotions about this.  Though high functioning has very little street smarts.  Socially very withdrawn.  This will be a huge struggle for him, however I am hopeful, remaining hopeful and that’s where I will stay with this.  He can and will accomplish this.

Trevor, my 16 year old has been headed down a path of self destruction for quite sometime.  Absolutely refuses to listen to authority, has had 7 felonies by the time he was 15 ..FELONIES, WTF????  okay people make mistakes right?  live and learn?  right?  He obviously has not hit bottom yet.   This past Friday, the third day of school, I went to wake him for school, he wasn’t in his bed, I went crazy, worried, calling his phone, can’t get a hold of him.  Okay Amy, hold it together, maybe he will show to school, nope… truant on day three of school.  So by 2nd period no call no show, no show to school, like any parent I become increasingly worried and call the police.  When then I proceeded to be scolded by the officer that my son ran away and I needed to be a parent. … Okay, big picture here, kid still missing, regardless of if he ran away or whatnot, he is not here, he is a minor, I am responsible for him and I don’t know where he is.  In the process of the cop filing the report I got a text from Trevor.  I called him, the cop asked to speak to him, he was eluding questions, not wanting to give names or addresses.  I got my son back.  Saturday night, again he never came home again, the police have made me feel like I am an idiot for reporting him a runaway….so today I have not.  However, I have done my best in trying to guide him in the best way.  He is 16 and refuses absolutely refuses to follow instruction, authority or abide by any rules.  Friday night/Saturday morning 4 am I got a call from the police, your son is walking the streets, please come pick him up.  SERIOUSLY WHAT THE HELL?!  What do I do?  I have been dealing with this with him for years.  I am over it.  Over the sleepless nights worried about him.  How do I deal with a 16 year old who refuses to realize he is still very much a minor ?  No reasoning works.  Counseling, medication…all of it ….he refuses all of it.  My heart hurts.  He curses, has hit me, I have found drugs in his room, showed the cops you know what they said…how do we know you didn’t plant that?  Are you kidding me?  Do I look like I have time for plotting against a kid who is plotting against himself.  All of these go away ranches, boystowns etc.  Not one of them will take him due to his past criminal history.   I thought those places were for troubled teens…oh they are, but the kid has to be willing, unless its a court ordered program, which after 7 felonies you’d think he would have been in one right?  Well no, he completed his probation, and they said be a good boy, knowing full well, next time it would most likely be big boy jail.    All he does is cuss at me, and lately he has been telling me I just gave Max away…not caring how hard I fought to get Max the intense treatment he needed.  He is 16, stuck between a child and a man, closer to a child looking at the pattern of his behavior.  I love him so much…It’s Sunday night, at 9pm and I have zero clue where my son is.  He is choosing a path ..a path that a parent should never have to watch her child go down.

Christopher is going through some more neurological issues.  He has been saying,”bees, buzz, head”  and dealing with the staring spells again which turned out to be silent seizures, we go back to the neurologist on Tuesday.  Hopeful for a some positive news.

Maxwell is obviously still in an intensive behavioral group home.  He is adjusting.  I miss him so much.  88e7d617b581065933cf54f751847861I miss his shamu splashdown in the bathroom, I miss his freckles, but I know this treatment is necessary right now for him to gain the constant behavioral redirection that he so deeply needs.

 

-Continuing to climb the rock wall of life, barefoot and covered in baby oil…looking for my bag of chalk to keep me from slipping

 

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