Friday, 19 October 2018

Believe Me

Believe me

It sounds so simple doesn’t it?

I have been my child’s mother, his primary caregiver, and his main means of communication for nearly 9 years.  I know every inch of him; I know what he needs most times before he ever says it.  I know when he is upset, I know when he needs space, I know when he needs to be held and cuddled.

And I know when things have changed.

I know when my baby is not my baby anymore.  I know when he is hurting.  I know when he is on the edge of losing it.  I know when it is coming.  And I know what is coming.

So why do I have to convince every single person involved in Nathan’s care and life that things really are as bad as I say they are?  Why must I produce pictures, or video, or god forbid wait for them to witness things for themselves before I am taken seriously?
Had he ever hurt me before?  NO

Did I ever report self-harm before? NO

Did I ever tell you he would eat nothing at all before?  NO 

Did I EVER tell you that I was becoming afraid of the love of my life?  Absolutely not.

I just don’t understand why it is that when I explain these drastic changes to his therapists, his medical providers, his teachers, his bus drivers, and yes even our friends and family, they smile, nod, and declare they love him, they have “a place for him” and they can handle it. 

Because I call bull shit.

If I go through the experience of someone looking at me with that “oh” expression on their face when they finally see what we have been going through one more time I may lose my mind. 

Did they think I was lying?  Exaggerating?  Looking for attention? 

I don’t want attention for me or for him, I want my son back.  I need someone to carry this ball with me instead of playing a constant game of keep away.  I need a practitioner to look at Nate and say ok, I see him, I see the problem, we are going to get to work on this, and here is how. 
 
I don’t need anyone to tell me that autism cannot be medicated.  He is almost 9.  He was on nothing before this summer.  I do not want to medicate his autism.  I want to keep him safe from himself.  I want him to be comfortable enough in his own skin that he doesn’t feel the need to bite himself when he is upset. 

 
I don’t need anyone to tell me that he has gut issues.  I concur.  And guess what? This fiasco started after I attempted to address these issues with a supposedly amazing probiotic.  For us it was most certainly not amazing.  And until a professional looks at him and tells me what they think will be safe, I am not rocking this boat. 




I don’t need anyone to tell me that he is having anxiety.  I KNOW.  We have matching anxiety at this point.  I can feel it radiating off of him almost constantly.

And please do not tell me that now that you understand his behaviors (after one episode)  you know how to manage them and everything will be fine.  Because his behaviors change every day, and then he has none for weeks, and then he has the worst episode he has had in 3 months (like yesterday). 

You are not the one who puts your child on the bus with tears in your eyes several mornings a week.  You are not the one who meets the afternoon bus and is asked to come pull your child out of his seat because they are afraid to touch him.  You are not the one who keeps your phone volume on at all times just in case.  You are not the one who made the gut-wrenching decision to put your child in the hospital only to be told by the staff that he gave them “baby fever” (aka why the hell is he even here, could you belittle our situation anymore??) and have him sent home in the same boat he went in on 6 weeks later.  You are not the one who faces friends and family with hopeful looks on their faces, asking how things are going.  You are not the one who opts to keep your mouth shut, because you don’t want their hearts to break too. 

Things are the same.  Or maybe worse.  I am becoming numb.  I am doing my best.  And I am not making any of this up.

Believe me.  I wish I was.   

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