straight up......

I think everyone wonders if they whine too much about their problems. I certainly do. It is annoying and boring when people bang the same gong or habitually play only one note an a piano with so many interesting keys.

It matters to me that people understand that I am grateful for the good and the bad in my life. All of it adds and subtracts important experiences and pains, joys and sorrows.

But times of stress are difficult and they can make my already difficult situation feel unbearable. I'm still vulnerable and still trying to strengthen my coping skills so I can handle more crazy. But there has been a series of stressful events lately that have pushed me over the edge and the satan sandwich on top of it all is autism.

I hate it......as in ......HATE!!!!!!!!

HATRED

BURNING HATRED

I loathe and despise autism. I hate it that years go by without them being seen by family members. They are silent brothers, nephews, grandsons. I HATE it that when my younger nieces and nephews come to visit....we can't have them here because it would be too upsetting for the boys. I HATE it that they can't travel.

It is so incredibly painful there is no explanation. To not be able to live in the same house with my children is an unquenchable fire that burns through me.......EVERY......SINGLE......DAY. It is a living hell.

That "fiendfire" from the last Harry Potter film, the stuff strong enough to destroy a horcrux? THAT is the level of intensity we are talking about. That idiot Bella's description of her transition into a vampire comes a little close. I hate it like nothing on this earth.

Occasionally people will ask me how I'm doing and I'll make a joke out of it and try to say something sarcastic with a smile on my face. And most of the time I deal. I do deal. I think you can sense that from my posts that it matters to me that I CAN find the good in our situation. I can feel good and enjoy life. There are so many good things to be grateful for. But many times the reality is that if I tried to express my feelings about these challenges I would lose control. And who really wants to hang out with that? My emotions frighten myself so it would be unwise to unleash it out into the open without proper supervision and probably some kind of sedative.

The worst is when people ask me how I handled placing the boys. It is an uncomfortable conversation that makes me feel like the bearded lady in the circus.

I remember feeling the same way when I was in my early 30's. I heard about a family that placed their autistic daughter in a group home. I was beyond horrified. Ty and Spencer had already been diagnosed by then but the thought of placing them made me sick. Good parents do not place their children in homes. That is the worst kind of selfishness to put them away. They should have done more, gotten more help, or just learned how to deal with it better. Unfeeling, uncaring.... bearded lady-crazy people.

There are many other things that are more socially acceptable. Cancer comes and the community rallies with fund raisers and bone marrow screenings. Death strikes and we shore up our neighbors with food, flowers and comfort. People have surgery and you bring them food and clean their house. But what can you do for families with autism? I don't even know. People ask how they can help and I have nothing to offer. I have no clue right now other than to say that it is incredibly lonely. You stop participating because it is physically and emotionally too difficult and then I think people get used to you not being around.

Once we were invited to dinner and the host said, " we wanted to invite you over because we were sure you weren't getting asked by other people because of the boys".

Autism is for FOREVER. There is a limited amount of "getting better". There is no expiration date and moving on. There is no funeral or celebration of remission. People get tired of it and tire of hearing about it. The fire never goes out.

Before when we were running our home programs and the boys were living here, there wasn't even time to pee without something being broken. The boys' placement has opened up the can overflowing with feelings we have been pushing out of our minds because we had to.

So if you never heard it from me before, let me be clear. Autism sucks rocks and I wouldn't wish it on my WORST enemy. No one deserves to go through this. There are no words to describe how intense of a living hell on earth this is.

I think I have expressed myself clearly. I rang that bell today. I don't think I'll need to say anything like that for another 10 years.

It felt really good to say it all out loud.


wow. I've sat here editing this post for an hour and it sounds soooooooooo self indulgent and whiny. But it still feels good to throw it out there for judgment. Fire away.