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  Socially very withdrawn.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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two weeks

Today marks two weeks since we drove Maxwell to the intensive behavior group home in South Florida.

My mom and Chris and I made the commute today.

When we arrived.. he was in the shower, big surprise… any opportunity to get in water the boy is there.  He came out of the room dressed in clothes, real clothes, pants and a shirt and shoes, and he smelled so clean.  We brought him strawberries and blueberries and all of his favorites snacks and treats.  We played outside for nearly two hours and watched giant, curly-tailed lizards climb the fence.  We swung on the swings over and over and when it was thru we swung some more.  We jumped on the trampoline…over and over.  He ran to the utility sink like any rough little boy and drank from the spigot.

When I knew we needed to head out, we came inside, cleaned him up and said our goodbyes, I held him so tight and picked my bags up and swung them up on my shoulder, I think he thought he too was leaving with me, that was hard, his little, freckled face.  I wonder what he thinks.  Why are they leaving without me?  Wait!  Don’t forget me.
He must be screaming inside, it must be an unbearable pain.  635896686855455819-maximax2resize

My mom consoled me as we walked to the truck.  Then I found his ball in the truck and I threw it over the fence for him to find at a later date.  I didn’t want to go back in and do it all over again.

I am struggling with some other stuff right now and it’s hitting me hard.  All so much at once.

People keep telling me just breathe, I am running out of air.

climbing the rock wall of life, barefoot, covered in baby oil praying for some chalk as not to slip.

 

-Amy

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one week today

Today has been one week since we drove to Coral Springs and left Maxwell at the intensive behavioral group home.  I haven’t really addressed my feelings in writing so I thought I’d do that now.  Its taken me this long to compose myself enough to do so.

I ache, deep in my bones, its an ache so great that if I had to put it into words its the only analogy I can arrive at.

Long ago, I gave in to the fact that despite my best abilities and the abilities of numerous therapists and doctors, Maxwell wasn’t getting better.  Something big needed to happen.  Some giant change needed occurring so that he and his siblings could have a better quality of life.

I have learned a lot in this week.  Who cares….Who my true friends are….and the judgmental jerks who think I am a crappy mom or giving up.  Yep I have had them, and honestly I don’t have time to worry about what other people think of me.  I have made peace with myself, my decisions and what has brought me to this point.  I don’t know how long this stay will be, or if its permanent, but as a parent, its the worst decision to have to make.  Its also hard to watch your child bang his head all day, bite his hand, strip naked, potty on the floor and have no meaningful form of communication.

I want more for him.  He deserves better.

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

Praying for chalk as not to slip.

-Amy

 

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imagine

Imagine being Maxwell, unable to speak…or 081f36ec291c95e43d3050f67e702ba5communicate, unable to tell your family you hurt, unable to sign, unable to point.  Your head aches with the constant headbanging you do in frustration.  Your hand hurts from biting it nonstop.  You develop gut ulcers in your frustration.  You are stuck.  Stuck inside yourself.  No matter how many therapists and tests and doctor offices you go to, no one can seem to help you.  You grow stronger every day and your parents feel your aggression and self injury is becoming so dangerous to both yourself and the family.  Everyday you pray someone will help you.  Fix you.

Now imagine being a parent of Maxwell, fighting until you feel like you have no fight left.  Finally after years of fighting, getting the help your son needs, round the clock intensive behavior group home.  Imagine taking your 8 year old son to a place 2 and a half hours away and bargaining with God, to make a change, fix him, help him, make him better so that you do not have to be away from this precious child you brought into the world.  I am exhausted.  I have literally fought for years with insurance companies to help me get my son help.  People thought I was nuts. What do you mean you can’t go to dinner with your family??  Take your kid to a store… take them on various autism outings in the area?  Why not?  Well if you’d met Max, you’d understand.  You see, its not as simple as OT 3x a week and Speech 5 days a week …ABA all the time ..and bam, its magic, he is better.  My son is not rainman, my son is not an aspie, my son is severely autistic and injures himself all day.  This has taken away alot from my other children….2 of the other 3 are also on the spectrum.  I hurt, I am very sad.  As a parent, what you want is your children to be happy and safe and thriving..none of which he is.  When you are faced with a decision, you question is it right?  Will he be safe?  Who will hug him?  Who will kiss his freckles?  Who will have the patience I have with him?  In every therapist that has ever worked with Max, the majority have never worked with anyone as severe as Max.  Their words not mine.  By making this difficult decision, I am giving my other children a chance to grow and for Max to get round the clock reinforcement that as his mother, I am unable to provide.  I am still his momma, and will always be his momma.  My heart is aching bad today.  He leaves Saturday.

Climbing the rock wall of life, barefoot with baby oil…

Praying for chalk as not to slip.

 

 

 

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One of Maxwells many therapy sessions

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A sweet moment for two Autistic brothers.

Originally from Amy’s youtube page.  Chris and Max having a cute moment late at night.

 

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Chris and Max, Vacume babies

Back in 2009, when the boys were still pretty small.  Chris and Max had quite love affair for the vacuum cleaner.  As you can see, Max never wanted it to be turned off

 

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Never stop fighting.

Here is a video that Amy did in late 2014.  She tells our story as it was happening while I was in Afghanistan.   Those days, like these days were very tough times.

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One from the vault. Maxwells spinning skillz.

Max was about two when the autistic behaviors really started to show.  Here is a video from 2009 that shows some of that.  If you can, please share this and our other videos to help promote our YouTube channel.  Thank you.

 

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OUR4BOYS youtube page.

Hello all.  We have a youtube page. From now on most of the videos about the boys and autism will be over there.  Check it out and don’t forget to subscribe.

https://www.youtube.com/channel/UCjY33o4oBqiumZdKAJai_Zg

 

Have a great day.

 

 

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