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.



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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


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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.




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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..




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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…


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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.


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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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