Kids with Autism ARE hard

I have read a lot in the past year or so about how autism parents should not ever complain about autistic kids because it perpetuates this social expectation that autism is a burden and that diminished self esteem that autistic adults carry.

I cal Bull$h!t.

A family is ALL the people in it, trying to live together.  It is not and CAN not be about the whole family bending to accommodate one member.  It is NOT selfish of parents to expect to have some enjoyment out of life, or to ask children to adjust to them in some ways.  The argument that only the adults have to change because they are the ones old enough to have coping skills is ludicrous.  If we are going to point out that kids are allowed to have bad days, then we have to make space for adults to have bad days too.  And truthfully, the autism contributes to those bad days - both mine and my child's.

The latest 'fight" around here is staying involved in an organization.  My son is fighting being in cub scouts, and there is a fair share of unpleasant politics amongst both the boys and the parents.  Changing will be difficult, but seems pretty necessary... so we started a conversation to facilitate that change.

Reacting with inflexible black-and-white thinking, my son starts to scream and cry that he does not like people, that I am intentionally trying to cause him upset.  I remind him that he needs to have the opportunity to practice being with people, but more importantly he needs to give himself the opportunity to have friends.

But the rigidity takes hold, and he moves to that instinctive place where he wants to hurt back - so he does.  That rigidity combined with perfectionism (all parts of the OCD nature of Autism) to drive him to find as many hurtful things as he could say about me.  Now maybe all kids get mean and hurtful (certainly we have heard that excuse for the bullying done to my son) - but the extremity and thoroughness with which he finds the meanest thing to say is Autism.  He told me that I try to upset him on purpose (no I am trying to help you grow); he told me that I am ignoring how I hurt him (as a matter of fact, 90% of my waking day everyday is invested in managing your ability to deal with change).

Maybe it was my fault for returning the argument with specifics, but I tried to demonstrate to him in concrete ways that I HAVE cared for him - specifically pulling him out of a dangerous school situation, and removing those toxic people from his life.

His response was that I have removed every person except myself.

THAT is a low blow, my son.

I was hurt, and I reacted that way.  He deserves to know that he hurts others. Am I supposed to lie and pretend that he is allowed to say whatever the hell he wants, no matter how hurtful, because he can use his autism as an excuse?  In a job setting that would get him fired.  In a public place that could get him beat up or killed.  In a legal setting it could get him slander.  There ARE very real limits on how mean you can be.

So I asked him if he wanted a new mom.  I told him that if that's really what he wants, I can make that happen.  I am not rich enough to buy him a new mom, or even a nanny, but I can report to the state that I can't help him.  he could make statements in public about how I am out to get him and the CPS would take him to live in a home.  If he needs out of this house, there are options.

I started to cry, I reminded him that it was incredibly mean, I was working hard to control my voice, but I am sure that he heard my ... vigor.

SO then he tries to correct himself, and says he wants me as his mom, but that I am just not good enough.

THAT is low, low blow.

And here we are.  I am now supposed to suddenly and instantly ignore every ounce of parenting guilt that is built into this job, that is multiplied by the judgmental dirty looks in public, by the therapists who make it clear that success is built on your follow through at home, by the school system & sitters who have told me over and over that he only behaves badly for me.

That horrible feeling in the pit of my stomach starts, the nausea and disgust.  This is the feeling I had when I was fighting for my dignity in emotional abuse from my husband.  This is the sense of worthlessness, the place that took me to the brink of suicide on more than one occasion.  I am back to trying to convince the people around me and myself that I am worthy of sharing their air.

My son carries that kind of despair too. He threatens suicide on a weekly basis at this point, every time he gets corrected, or we ask him to learn to control himself, or i remind him that he is capable and responsible for thinking of how his actions affect others.

So is the answer REALLY that since I am the adult I am supposed to just live with and accept this type of emotional abuse?  Is it really that as the mom, as the woman, I am just supposed to allow him to be as mean as he wants - because he is disabled and can't control it?  This is the same type of bull$h!t that keeps women in relationships that get them killed.  This is why so many parents are pushed to idea that death is the only viable option.

If the child truthfully has absolutely no control over how much they hurt others, then putting them into that resident situation where people who are paid minimum wage and have no emotional charge to put up with that crap are responsible for his well-being is setting him up for a lifetime of physical abuse.

Somehow, we have to move forward from here.  Somehow we have to reach that place where he knows his needs, understands how to meet them, and takes responsibility for how he touches the lives of others.

If he can't take that responsibility, then he really can't ever live as an adult.

And if he is never an adult, at what point am I "allowed" to emotionally protect myself from that kind of abuse?