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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Our 1st Autism Video Blog

As we approach a momentous occasion in our lives,  it’s time to take a look back at the year 2009.  At the time we were coming to terms with the recent news of Christopher, then 2, being diagnosed with Autism.  To help us explain to the world what we were going through and to tell our story, Amy started doing Autism blogs for youtube.  This is the very first of 15 she eventually did.

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Max the water boy

For all of his limitations, unable to speak, self injurious behaviors, sleep issues,  Max has always had one incredible talent.  The ability to swim.  He can be having the worst day and as soon as he gets into the pool, his mood changes.  His face brightens, his mouth turns from an almost eternal frown into a heart warming grin.  From an early age he has been a natural swimmer.  Self taught as it would be impossible to teach a child as disabled as him to do such a thing.  His swimming is all natural and to me, a thing of beauty.

Here is a video of my little dolphin doing what he does naturally.

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Go Go Gadget heart

Remember Inspector Gadget?  Remember how Penny, his niece, was always getting into trouble and Brain the dog was always saving the day??? I so wish I had a Brain the dog right now to save the day.

th (1)Do you ever wonder how you go to the point you are at?  Do you wonder where along the line set the exact situation into motion?  It crosses my mind often.  Not as in a, “why me, pity bs”…more of a “why the eff can’t I seem to get the help my son needs”???

I feel like I keep taking 2 steps forward and 15 steps back.

I am seriously at my most stressed I have been ever. Its physically taking its toll on my mental state.  I am suppose to be the strong one.  I am suppose to be the one to holds it together for everyone else.

I have not neglected this situation, I have been proactive, I have tried to get him help.  I have tried diets, I have tried therapies, you name it I tried it.

When my insurance says,” yes we will pay for residential for 90 days but sorry there are no facilities that will take him, and oh yeah by the way, if your kid was a drug addicted teen you’d have no issue”  I take great issue with this.  So my son is not deserving of treatment?  He needs intensive behavioral treatment.  Every professional I encounter agrees.

So I fight for this med waiver/medicaid.  It becomes secondary insurance.  They approved a budget for him.  Its enough for a group home.  I know of a place only an hour and half away, they have a bed available.  I am told…,” well he’s only 8 and a half”  I know damn well he isn’t the youngest child in the entire state of effing Florida to have been placed into residential care.  His needs are being neglected, he is not getting what he needs, my other kids are not getting what they need and the reason is because I can’t seem to convey to any one agency that his needs are greater than I can accommodate.  They agree he needs more, but no one wants to help, no one wants to try and help provide a legitimate, real solution in getting Maxwell some intensive treatment.  Why?  because its just a job to them.  Why should they care?

My heart hurts, its absolutely shattered.  Am I too dramatic? Pissing you off?  Good, you are reading this and maybe you are the right person that needs to be reading this and will help me.  I need someone to be pissed off, I need someone to care.  Because I am tired of being the only one who cares about his treatment.  He is human and deserves care.

It’s fun to go to fun autism events, and raise money and awareness ..but sometimes people need to see real sides of autism.  Is it your fault I have 3 autistic kids?  Nope, but I am begging for help.  Real help.  This is a son of a disabled veteran, who can’t get help.

I have guilt every time I leave the house for work….most of the guilt comes from leaving the situation, if even just for work, the other part of me wants to run and never return.  Harsh?  Its where I am at.  Mentally stuck.

My heart just doesn’t compute.

 

  • Amy

 

 

 

 

 

 

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