Go Go Gadget Heart

Wasn’t it easier when Chief Quimby popped out of a trashcan and gave Inspector Gadget the self destructing message orders; only for Inspector Gadget to read the orders and throw them in the trashcan and explode in Chief Quimby’s face…only for Penny and Brain to inevitably save the day?

Sometimes we are self defeating, sometimes we allow ourselves to be brought down by what is around us, by what is going on in our life.  I live with chronic depression and anxiety and though I try to keep it in check, this week has been a rough one and I know I am not alone.  Hang in there, you are doing the best you can, be gentle with yourself.

Holidays are a time that are difficult for so many.  As I watched people this past week doing their hustle and bustle shopping in the grocery store I work in, I couldn’t help but look at their faces, most of them sad, grumpy and so few of them met my eyes and greeted me in response to my wishing them a good day. I allowed myself to get overwhelmed many times this week at work having to step aside, go in the bathroom and cry.

We all are going though something hard, maybe multiple hard things..the holidays somehow make it worse, a reminder of loved ones who won’t be at the table, or maybe they don’t have a table at all and are struggling to just to get through the next five minutes.

We are inundated with Christmas decorations before pumpkins are put away and there is no enjoyment anymore, there is just no flow from one holiday to the next, its just one gelatinous mass of madness starting in late September ending early January.  We must spend money we don’t have, max out credit cards we can’t make payments on, make elaborate meals that are unnecessary all in the name of tradition?   It’s exhausting to even think about and I refuse to do it.

Treat each day as though its Thanksgiving, love those around you.  Be thankful for every experience, because each one is a lesson, be thankful for a warm cat in your lap or a dog at your feet………. be thankful, my fellow warrior parents for the endless fighting and iep meetings and years of therapy, thankful because these paths are different than the norm…in fact, my most memorable thanksgiving dinner was one in which Max stripped naked and ran across the thanksgiving dinner table.

I am thankful for my path, my path may be rocky and full of potholes, but its mine; mine to experience pain and loss, mine to make mistakes, mine to find joy, mine to find love.

continue to hopeunabashed

I will continue to climb the rock wall of life, barefoot, covered in baby oil.

 

  • Amy
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mother’s day magic

This blog goes out to all the moms who are fighting for therapies, fighting insurance companies, praying to hear the word, “momma”, just once, for all the mommas that have lost babies, or gave babies a new home because they had to, and the ones that never had babies but ached to and still are trying, to the stepmommas that “STEPPED IN” and were a momma when they married into a family, to the mommas that have lost a partner and have been the role of momma and daddy, to the mommas struggling with something aching for someone to see her,  the mommas that have been up for 2 days straight living on caffeine, to the ones that keep it together and still look cute in high heels and makeup and the ones that haven’t brushed their teeth and are in the same yoga pants and flipflops for 3 days, to the ones that have teenagers screaming at them, to the ones shake their head in disbelief silently judging the other mommas, to all the single daddies that have to act as both momma and daddy, thank you!  To all the moms who work multiple jobs and struggle to put food on the table and the moms cradling her baby in a shelter starting over, Happy Mother’s day.  Keep your chin up, you are doing the best you can!  I love you all!

As I write this, I am in sweat pants, flip flops, a t-shirt and hair in a pony tail, I already went to the store like this because a kid needed a new charger for an iPad or some crap like that.

I really don’t like birthdays or holidays or stuff like that, its just becomes increasingly more difficult with Maxwell in a group home and Trevor in drug treatment.  I feel like these things at one time meant so much to me, now they are just days that all bleed together.

Friday I went down south to take Maxwell to the dentist.  I won’t go into specifics but we’ve been trying to get him into this dentist since April and it finally happened.  He had a decaying tooth that needed an extraction and then last week … at school he broke his front tooth off.  Max is on 2 psychotropic medications that make his behaviors much more manageable, and less self injurious… however it makes him getting sedated that much more challenging because his tolerance is built up.  So after 2 doses of Versed and 2 Ketamine shots, he was finally relaxed enough.  I had had this experience one other time when he was getting an MRI, they had given him two doses of Ketamine and he was still writhing.  Often with Max its like adrenaline kicks in and takes over, no matter the amount of drugs given.    He made it, they wheeled him out, he was a mess, blood everywhere completely out of it.  The nurse, Maxwell’s carer and I all piled into a very small elevator, we got downstairs and I hurried to get all the soft food and all of his stuff in the car, I wrapped this giant 10 year old baby who doesn’t talk and still wears diapers in his blankie and kissed him goodbye.  The BCBA hugged me and reassured me it will be okay.  I thanked him for his help and putting up with my pain in the ass ways.

I then sat in my truck, and cried for a long time… I called my mom, I reached out to the one person who sacrificed everything for me, my mom.  I did not keep her long, but I needed to hear her voice…as I ended the conversation and headed back on my 3 hour trek home, I took out my Billie Holiday CD and turned on the radio, “Life is a highway” was on, how many times we listened to that over and over jumping on the trampoline for hours, watching CARS over and over and over, tears rolled down my cheeks, and then I smiled.

These boys are always with me…..no matter what it looks like.  It may not be ideal, it may be sad, it may hurt, but every struggle, every triumph, every defeat, every meltdown, everything was so carefully destined for me.  This is my path as a mom and I cherish it.  I am so thankful.  My 4 boys are why I am here.

continue to hope, unabashed

I will continue to climb the rock wall of life, barefoot, covered in baby oil.

-Amy

 

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Go Go Gadget Heart and other stuff like Atreyu and Artax

Though I have used this blog title twice before, sometimes its necessary.  Sometimes only Penny, Brain and Inspector Gadget have the answers. I have been awake for about 19 hours and I am exhausted and won’t proofread this and it is likely fully of mistakes…. It’s been awhile since I have blogged and haven’t felt super compelled to, mainly because between work and travelling down to south Florida, my time and energy have been put elsewhere.  I don’t know why..it doesn’t take me long and I always feel better after I write.  If you’re just stumbling upon this blog,  I am a mom of 4 boys, 3 have autism..one of my boys is so severe he is in a group home and my neurotypical child is in drug treatment.  BUT those are actually good things because it took a long time for that help to happen.  I blogged and vlogged for years about my struggles and my blog was hacked and many of my blogs and vlogs lost.   Another reason I haven’t felt compelled to write is something personal I am dealing with and working through.

Sometimes life is a little too messy and you lay awake at night with what my girl “S” says is “monkey-mind”.  I have been laying awake at night a lot lately…Maxwell has been super sick, and dealing with an upcoming dental surgery.  Trevor, though he is doing well in drug treatment, I worry so much about him, about how he will do once he gets out…he is successfully participating and doing everything he needs to do, he calls me and we have group therapy sessions….overall that is a good thing.  Maxwell, my sweet guy….do your carers give you hugs?  Do they tell you stories?  I can only imagine yes.  He has a million books and they seem to have such a good relationship with him….  He is so much better than he was when he went into the group home.  He still has self injury however not to the extent that it was and is still not having any meaningful ways of communication still not pottying, but he is clothed most of the time and that’s something right? Stone has job and is still going to college, he is getting along pretty good.  Christopher has his last IEP of elementary school coming up and I am at a loss.  How do I even begin to let this boy go to middle school?  It seems so scary to me.  He will still be in a self contained class…and I think that is the only solace I have.

I have been having some health issues and am trying to deal with it. It started in June, they found a spot on a mammogram that was in need of more views, so they did, and it was still there and so they said let’s look at it in 6 months, so they did and it was still there so again, in a few months they will check it again and hopefully it hasn’t changed…..back in December, I was diagnosed with fibroids in my uterus.  I decided to change my diet and repeat the CT scan, why not?  they were squishing my boobs anyways right?  So I was diagnosed with kidney stones but 13 years ago was diagnosed with chronic kidney disease I have less than 40% function due to a birth defect that gave me an itty bitty kidney, and thank goodness for it because the itty bitty guy functions way better than the typical sized kidney.  I had been searching for a new nephrologist  because mine actually had a fatal scuba diving accident.  I had been waiting on an appt. and finally this week I will be seen, hopefully with a plan of action as to what to do with the stones.  I tried Stone breaker, a natural remedy, but I wasn’t having any luck with it.  Who is this lady I thought to myself?  You run marathons, you flip tractor tires, you wrangle chickens and kids and cats and you are strong…you do IEP meetings and fight insurance companies for kids’ therapies.  You are not weak, bitch, you got this.

I realized something this week, when you are crying in the middle of a parking lot on the ground and someone helps you up and tells you its gonna be okay and offers a hug, keep those people around you.  Because like Atreyu and Artax, The Nothing will swallow you whole if you allow it to.  Atreyu made it out, but Artax let the swamp of sadness kill him. Atreyu tried to help Artax, but in the end it was up to Artax and he couldn’t do it.  Sadness and depression and anxiety are some of the hardest most intense things I have ever gone through and live with.  Some days are worse than others..others I try to feel the sunshine.   If after my three analogies of The Neverending story in my blogs and you still don’t know Atreyu and Artax, do yourself a favor, watch it.

We often place our self worth and meaning in what others view about us, what they view about us is just their view, their truth, their opinion.

At night, as you lay your head on your pillow, what do you think about?  What fills your mind?   What makes your soul ache?  What brings you joy?  If you don’t know all these answers… please keep searching unabashed.

continue to hope

I will continue to climb the rock wall of life, barefoot, covered in baby oil.

-Amy

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#selfinjuriousbehavior

Self Injurious Behavior is different for everyone, especially those on the autism spectrum.  When someone says Self Injurious Behavior or SIB, immediately the thoughts that rush through alot of people’s heads is that of cutting or self harm of that nature.

Most of the SIB we deal with is head banging, face slapping, hand biting.  Maxwell’s bridge of his nose has a permanent bump almost appears as if the nose was broke, this was a new behavior that he developed.

Why do they do it?  Well many reasons, sensory overload, change, frustration.

Change is another thing that is so damn hard.  They keep to a strict schedule at the group home, however,  as best as I do to keep similar schedule here.  I have uprooted him from his rigidness, what he knows, what he is comfortable with.  He was doing okay, but today the SIB was almost non stop.  It’s more than constant redirection, its basically you spending all of your time making sure your kid doesn’t kick his own ass.

A few people have asked us to visit them with Maxwell this holiday…or they want to come here.  I can’t put Maxwell in that position of stressing him out even more.    Oh but you have to introduce your kid to new experiences or he will never get used to it.  Let me tell you this isn’t my first rodeo.  I have 4 boys, three have autism, Maxwell just happens to be the most severe.

I think I stopped blogging for a bit because I can’t believe some of the crap people complain about…. Their reality Amy, their problems….it is okay that they complain about stuff that they do.  Amy, you are complaining right now…..complaining about complainers…When these people come up to me to complain about their stuff though, I listen but often my mind drifts to my son in jail, my other son in a group home and my other two sons at home struggling with autism one dealing with chronic health issues, the other an almost 21 year old who is struggling to find work and he doesn’t get disability.   My mind drifts to my mortgage that I am behind in, how the final notice came for the electric bill…how will I rob Peter to pay Paul this month? I also struggle with people who tell me they completely understand, when they aren’t in my shoes and dealing with what I am dealing with.  I struggle with the people that tilt their head to the side and give me an,”awhhhh how do you do it?”  I don’t want pity, I do want people to understand what my reality is, and though its different than yours, it is very real to me.   It doesn’t make me think I am worse off or having it harder, I am not saying my situation is worse than yours, I am just telling you my reality.  My reality will be very different from yours.  Your ability to perceive my reality is not simply based on empathy but understanding as well.  I have set some personal goals for myself this upcoming year, I intend by this time next year, working one or less jobs.  Maybe just work one job.  That would be a dream.  

I think another reason I stopped blogging for awhile mainly because with everything that was going on with Trevor I didn’t know what to say.  Last night when he called, he expressed how sad and disappointed he was that I didn’t come up to see him on Christmas day.  I am fighting a bad cold and only have Maxwell here for a few days…I really couldn’t. It’s not like it is just around the corner its about 40 minutes away.  When he gets to his eventual program he will be roughly 3 hours away.   I don’t really feel like I need to make excuses.  The last time I visited him, there was a mom next to me, crying profusely about how it was her fault.  That is not me, I know it is not my fault and I did try to get him multiple avenues of help.  I have told him if he gets his education and remains sober he can have a place when he gets out.  He is capable, I know he can do this.  I just want him to want it.  I want him to believe he is worth it too.

Anxiety is big, debilitating at times, but my belief that I can manage it is bigger.

keep searching, unabashed.

I will continue to hope, I will continue to climb the rock wall of life, barefoot, covered in baby oil.

-Amy

 

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In Lieu of Christmas Cards

In lieu of Christmas card this year, I am doing a blog.  I haven’t blogged in some time.  The main reason is my life has been insane, and I am working three jobs currently, not sleeping a lot.  I am also sick with whatever cold these people had last few weeks.  It hit me like a ton of bricks a few days ago and it has me feeling pretty rough.  This Christmas is by far the most different Christmas we have ever experienced…and by far the most poor.  We got the kids 4-5 small gifts each.  Jesus only got three right….? so they can manage.  It really made me think of how increasingly commercialized this holiday has become, because honestly no matter what you celebrate, you are inundated with Christmas stuff.  It’s just too much.  Going into debt for a million gifts is not my idea of a good time.  When people have talked to me about how much they are spending or what they are getting their kids, how do I say, ” I am just trying to keep the power on this Christmas”…Its not my place, that is their stress, their reality, I just realize what people value and most people value stuff.

I am learning to deal with my anxiety better, not great but better.  I am working on it, I have had a few really dark days the last year, but it’s getting better.  I have endured some physical trauma and I am just learning healthier ways to function.  I realized it was affecting me and my family in more ways than I possibly ever could have imagined.

Trevor is in jail awaiting a commitment program.  In this program he will receive drug treatment. They were going to send him home again, but I told the judge if you send him home, he will die.  The drug use was so rampant Its likely going to be roughly three hours away.  I have seen him once and though it was a good visit, on the way home, I heard,”I’ll Be Home for Christmas”, and cried.

Maxwell is home with us for a few days and the visit so far has been pretty good, he is fairly calm and remaining dressed.  His SIB was rough last night before bed.  I am trying to maintain his schedule as best I can  just like the group home, but I know the transition being home is hard on him..but overall he is doing well.  He turned 10 this past Thursday, his class celebrated.  Though he still doesn’t have any real meaningful communication, he isn’t as self injurious and last night asked to get a shower by taking his dad’s hand to his shirt, instead of just stripping naked.  He’s made some great progress.  He still does some face slapping, hand biting and nose punching but its down tenfold.  Taking him back to the group home will be very hard.

Christopher is enjoying himself this Christmas, he got a playmobil set and set it up himself.  He loves it.  He also got a new bike.

Stone is having a lot of anxiety too, he’s expressed feeling sad about Trevor not being with us, but he knows that is where he needs to be.

I have another diagnostic mammogram on January 15th to see if the nodule they are watching is still the same or changed in size or shape.  I am hopeful it will remain the same.

The last few months have been really challenging leading up to now…but like in the old claymation Christmas show,”Santa Claus is coming to town”, they sang, Put one foot in front of the other…I guess that’s what I am trying to do, what we are all trying to do.

I am not one for New years resolutions, though I make a living off of people and their new years resolutions…we all typically want a fresh start, a new way, a clean slate, and we all deserve it.

So whatever it is you seek in this new year, may you find it, unabashed.

I will continue to hope, I will continue to climb the rock wall of life, barefoot, covered in baby oil.

 

Merry Christmas

-Amy

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An early video of Maxwell.

Here is a old video of our youngest and most disabled son Maxwell showing some of the earliest signs that he was autistic.  Some of the behaviors include spinning of objects and becoming nauseous when exposes to certain textures.

 

 

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Atreau, Artax and a little hope

Baring your soul isn’t easy, and its been months since I have blogged anything.  I often will use old movies as a jumping off point…old movies are always the same, they never change, and the end result will always be exactly how you remembered it to be.

As I took off my sloggers covered in mud and sand from cleaning the chicken coop, I was thinking….just like Artax who couldn’t make it through the swamp and got stuck and died, sadness overwhelmed him.  Atreau had to watch his beloved horse die.  Being depressed often feels like this and this analogy in The Neverending Story, though I have used it before, it is so clear to me what drowning in depression is.  The entire movie… the characters are running from the “nothing”, a storm.  Scary black clouds, whirling winds to wipe out everything in its path, the nothing is a storm inside many of us, and maybe even all of us.  I am not saying everyone is depressed or lives with chronic anxiety, but a lot of us do.  What “nothing” am I running from?  There are many things that have happened over the last few years that have had moments of breaking me…I have tried to rise above them…I guess I just pushed them further down.

I often feel like I spend my life trying to help others better themselves, it’s my job and I enjoy my job…….yet when it comes to my own life, it’s an absolute mess, ripping at the seams.  It is a odd thing, to put on a smile and try to ignite a room for energy or pump someone up through a workout when in reality, you are full of anxiety, full of fear, full of heartache.

A few weeks ago marked the one year mark that Maxwell has been at the group home, he is doing well, but somehow, I struggle with it still…he is there, I am here…it’s not suppose to be this way.  I often have guilt about it…when his carers or therapists send me pictures or I see him and see how he interacts with them, I often wonder why I couldn’t fix him, I am his mom, and yet I couldn’t help him as much as I tried.  It’s a guilt thing I struggle with daily and even as good as he is doing there….I can’t help but wish he was with me. Selfish I guess.  I still have hope

Christopher is doing pretty good and getting acclimated to the new school year, and of course his favorite holiday is coming up, Halloween, in fact, I will today, give him his first walk thru of the Spirit Halloween store of the year, there will indeed likely be 57 more walk throughs before the Halloween season is over.  He gives me hope for smiles…and a lot of them.

Stone is adjusting to the fall semester back at college.  He still lives at home, maybe one day he will be functioning enough to live on his own.  I have hope.

Trevor is still wrapped deep within the confines of the legal system and that is by choice.  He had moved out for a few months, but he got kicked out of where he was so he is back.  He is maintaining a full-time job, and I am trying to continue to have hope.

There are some other things that are going on that I can’t blog about but need to talk about because its causing me immense heartache and intense anxiety.

I will continue to hope, I will continue to climb the rock wall of life, barefoot, covered in baby oil.

-Amy

 

 

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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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