Give Group a Chance?

I have been contemplating going to a support group for parents of children with autism.  The thought crosses my mind while I drive from OT, or the psychologist.  I just don't know that I want that.  I spend my time, at therapies, and consoling violent melt downs.  Going to a group and talking about how hard that is, just seems like the last thing that could help me.  Instead I go out with my friends, I listen to audio books and watch too much television. Mostly all fine, accept when I am kept up wondering about the future in ways that no one else can fathom.

First off, I am not the super together type A. soccer mom.  I feel sort of out of step with other moms. I am shy to make friends based on the sole motivation that our kids play together.  What if they stop getting along?  What if I don't get along with her, and now our kids are best friends?  Also being a chronic over thinker, makes me sort of awkward.  I mean imagine going through the process of talking to a mother about how your child told hers that he was "going to be forced to kill them" before you plan the play date.  I am both present and distant in every moment.

So today after a week in which we have had to talk to the police, and my son has been yelling obscenities at his teachers.  9 Dr. appointments, 1 trip to the ER, and a meeting at the school.  I am driving home, I am thinking about my sons future, and wondering if I am doing more harm than good. How long I can sustain this unemployed, waiting on my child lifestyle.  I am imagining my son screaming that he wants to die at his principle.  I then think of the gridlocked pained looks I get from teachers, and I think I need to go to a group.  I need to look at someone and say "I am not sure my son will ever be a fully functioning adult." and not be met with a look of sadness and "he's so smart, your doing a great job. you have to believe in him" it stings, it crushes me.

The big thing holding me back are summed up in,  it sounds so exhausting.  I am always second, or even 5th. Whether it be a dentist appointment, a job, a pair of shoes without holes, I am never #1.  A support group would be one more thing in the long list of ME things that I don't get.  My son is not like a lot of other children with autism, so it can feel like I am screaming into the void, he's not just quirky, and he's also not totally non verbal. Most of what I experience gets relegated to disciplinary arguments. "you should spank him", or something along the lines of he's just being manipulative.

All of that aside.  I have never tried, so I need to set my own tendencies aside.  I need to trust people, and not judge them so harshly.   I am going to find a support group.  I am going to go to more than one meeting.  I will be open minded.  I will resist my tendency to be cynical and judgmental.


Please comment if you have experience with support groups, please leave a comment about it. Follow on Twitter as well.

And a Happy F***ing Thanksgiving to You Too.

Its Thanksgiving.

I am so excited for the holiday, I get to spend days bonding with my sweet children, playing games and doing quaint family outings.  Establishing traditions and feeling nostalgic of my childhood.

This means I have to be fake festive and make decorations because my kids really want them, and hope that these things stave off the miserable arguments that are guaranteed to stem from one being too happy and the other being off schedule.  I am also going to try to get together with other moms to no avail only to find that I am either not that liked, or I am liked and maybe my kids are not.

The prospect that I am not ok with watching TV all day for a week was the first fight.

Waiting for turns on the computer was the second fight.

The wii sensor bar was fight # 3

Eating was fight # 4

Finally I gave up and let them watch TV.....so upcoming fight will be the TV has to be turned off.

I anticipate a "why do we have chores fight" and a "why are we too poor to go on vacation tirade"

So...I have 3 days of this 1 day of "there are too many people" and "I'm not hungry"

Then I get to spend the evening with people I don't even like with not enough alcohol, for a holiday I find very conflicting.   Since I have been a vegetarian for about 6 months now I wont enjoy the only part I like.  The leftover turkey sandwiches. I may have to give myself that because otherwise what is all this for? I mean really every bite of turkey I take makes me think about how many Native Americans died, and slavery, and Donald Trump, and all the false American symbolism.  Then I feel guilty because I love food, and I love most of my family, but I have to wonder what am I encouraging my kids to believe in?  I mean are they going to feel as cheated as I do by the legacy of lies?

Then there is also the cooking.  All the cooking that I am only mediocre at, and costs a whole week of groceries.  I thought the Puritans were poor. You mean to tell me that they were starving, they came together with all kinds of food, and fed themselves and the natives?  Yeah, sure. Now its spend almost a weeks worth of grocery money on one meal your going to share with everyone and think about how thankful you are for all that you have.  I am only moderately grateful, and I feel less grateful when I feel how one holiday cripples my budget.

This post is becoming a tirade on my anxiety about the holidays.  Just so we are all clear not everyone enjoys Thanksgiving, and not everyone has pleasant lengthy vacations with their children who are angels,  Some of us have pleasant moments sprinkled between nauseating tension. So be sure to bring good wine to dinner and don't pick fights with your politically opposing family member.

Like a Small Nuclear War

When my son was 6 and diagnosed with autism.  The Dr. told me that I would be fighting for him forever.  He said "a mild developmental disorder is like a little nuclear war" people hear high functioning or mild or any other diminutive term and think no big deal.  The reality is that it is still a very big deal. A little disability is still a disability, and a little neurological disability still impacts all the things that make a person who they are.  How the world looks, how they sense pain, and process emotions.

I have had a horrid week.  I have had appointments every day, I have had meeting with the school. I have had a police officer at the door asking about my sons outburst which I explained was a panic attack.  The officer left dumbfounded that he had been called to do a well check.  He has slept the afternoon away in school 3 days in a row. I now know its because he is spitting his anxiety medication out into water.  For goodness knows how long, long enough for him to totally fall apart that's for sure.

That little war in his brain is there when he's frustrated, or overly happy, when he is tired or hungry, sad, or feels slighted, whether real or imagined.  All those devastating misfires color his life.  Whether it be a misinterpretation of a face, or hearing a firm voice as screaming.  Even being happy is over zealous, like a shaken 2 liter spouting in your face.  He is never just your average kid, hes the smartest, or the meanest, or the funniest one.  This creates great hurdles in getting people to take me seriously, they cant picture that he might end up screaming at them or curling up in a ball on the floor.  Only why would I say that if it wasn't possibly going to happen?

When people meet him he is the most engaging child in the room.  I take him to school, or camp, or a sleep over and I say "he has autism, he has meltdowns.  He sometimes says cuss words obsessively".  I get brushed off , told how fine he will be, how smart he is. The outcome is inevitably that I get a frantic call or furtive glares as he has actually done one of the things that I had tried to tell them he would do.  When someone tells you a truth that would be hard to admit to, maybe its true, maybe its not cold cynicism but rather their unkind reality.  The consequence of thinking that parents are always excusing their child's behavior with a label is that the child is in turn held to expectations they will never be able to meet.  Time and again my attempts to take a step back form my child are devastating.

Imagine you scout out a new school, you meet with them, say my son has autism, they look at his assessments, assure you that they have all the things that are needed to meet his needs.  They show you the class room, they tell you all sorts of things that they can do for your child.  About a 2 weeks in he has a complete melt down, he attempts to run away, says inappropriate things to other students.  Does the school consider his disability valid? Do they account for it in his behavior?  Do they accommodate the behavior?  No they are, shocked, just shocked at the severity of his reaction.  The psychologist explains that he is displaying anti-social aberrant behaviors.  Just imagine how much you would want to scream! They literally look at you in awe and say "he didn't even know the name of the child that he struck"

I want to be a million other things, but I don't get to have a job, I didn't get to finish my bachelors degree.  My child has a nuclear war in his brain, with mushroom clouds, and residual radiation and a daily reshaping of the universe. It is inescapable.  All I really want is to know that someone else out there in the world is willing to accept that reality.  As he rounds the corner into being a preteen, I am beginning to be plagued by what the future looks like for our whole family.