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Monday, June 27, 2016

Autism -Box of Chocolates

Sister-friend, Autism Mama ~Elena
Autism “life is like a box of chocolates. You never know what you’re gonna get.”  Will it be a pleasant day? Will I be able to get my chores done, exercise, write, go to the market?  Will the whole world be shot to hell in a hand basket by just saying one thing, that sets off an explosion that will last for hours, or maybe even days? Will I get one of those phone calls, that makes my heart start racing? Autism parents all know that feeling when the school's number is on the caller i.d.

I can feel my summer depression setting in. I thought with Red living away and being busy working; I would be able to avoid it this year. Silly girl. I should know by now, never to get too comfortable with life in the easier lane.

With Red gone, issues with Blue are bubbling to the surface.  He started off summer with a bang of a meltdown which essentially lasted three days. And by start off, I mean, the day that school was out. Bam!

One minute we are shopping, laughing and having a great conversation. He met me in TJMaxx after SAT tutoring, which was in the same shopping center. We were picking out girly gifts for my god-daughter.  He talked about how much he enjoyed spending time with her just the week before. "She loves me, mom. I think she looks at me like, kind of a big brother."

Moments later, we are in my car when I apparently said the wrong thing. He went from zero to one hundred in nothing flat. He was angry and decided he could no longer be in the same car with me. He got out of my car and walked, at night, in the rain, 2 miles to get home.  He could not be in the same car as the woman who chose, "tonight of all nights, the night before the SAT," to correct him for yanking his earbuds out of his ears. I had no right to open my big mouth about earbuds that I have replaced dozens of times, because somehow, they keep getting broken. It has nothing to do with yanking them by the cord out his of ears. They just keep shorting out for some strange reason.

Of course, it was his choice to get out of the car, but everything that happened that night was all my fault, and of course, he was furious with me about it all ..for days!

The past month of school has been full of stress with the end of his 11th-grade year. He had AP Exams, State Testing, and the SAT on top of his regular class projects and final exams.  In fact, the next day after the epic meltdown, he was scheduled to take the SAT for the 2nd time.  I'm sure this was a major contributor to the anxiety which sparked the outburst. (And No...he did not end up taking it the SAT the next morning. Again...all my fault.)

I was steaming mad about all of the expensive tutoring we paid for to help him with the test, not to mention, paying for the test itself, that he now refused to take. I couldn't push him into doing it. That would just be another disaster.  Anything I said or did for the rest of that entire weekend, added fuel to the fire. 

He has had an incredible year of social success at school. He developed some wonderful relationships with friends, both male, and female.  The females especially have been a great source of strength and comfort.  They give out the best hugs when he is upset.

He also has developed a mentor network at school. His Computer Science teacher who is also on the spectrum, is a wonderful resource that he could access daily. He has also basically become friends with his old Science teacher, who is now his Club Sponsor. She is quite familiar with autism because she is married to a man with Aspergers. She also has a brother with autism.  In other words, he has created a substantial support system that suddenly, he will not have daily access to now that summer is starting
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So, let's add all of the pressure from the end of school, to the sudden absence of his support network, then add a splash of SAT testing, and wham! There you have it! The makings of an epic meltdown. 

I remember that feeling in high school when school was out for the summer, I wouldn't  have easy access to my friends. For one thing, I usually worked, and most summers I worked full-time. I loved the money, but I hated the time it took away from hanging out with my friends. It felt like I was going through withdrawals from them. So, I get it. For him, these feelings are intensified as everything is with autism, especially social relationships.

At this point, I can not say, or do anything right. I can not parent. I can not guide. I can not suggest.  I can not even listen, without succumbing to the urge to say something, which will ultimately be the absolute worst thing anyone in the history of the world, could say.  I’m screwed! I feel purposeless, other than occasionally handing out money and providing transportation. And apparently, I can’t even provide transportation without the world nearly coming to an end.

Simple conversations between just the two of us are a strain, to say the least.  A conversation where the two of us could get to the root of our communication problems, would be impossible. We decided it would be best for me to sit down with him and his therapist so that we could hear one another. I needed to find out what he wants from me at this point because it feels like he doesn’t want anything. Yet, he makes a point of telling me that I’m not being supportive and understanding. I’m like, how supportive can I be when you’re always so angry with me?

Through our session with his therapist, I discovered that when he is at school working with peers, teachers and adult mentors, he feels successful and more adult-like and independent. Somehow that all goes away when he comes home and has to be reminded what to do. It makes him feel less powerful and in control. And he loves control! In fact in the middle of one of his meltdowns recently he told me, "I hate limits!" Of course, he probably feels more limits when he is here with us than when he's away from us. That's only natural, right?
I decided that I need to find ways to recreate some of the autonomy that he has at school. I need to give him more of a sense of control so that he can feel more independent.  He needs transportation from me, but at the same time, he probably hates the fact that he needs it. Yet, the prospects of driving are a little nerve racking to say the least. He says he wants to work, but going through the process of actually making that happen, feels overwhelming to him.

I decided it is time to add to my village. When you can't do everything yourself, find someone who is better at it. I've decided to hire a replacement mom. Haha! I wish! Actually, through my contacts in our school district,  I was able to find and hire a Job Coach who will work with him privately. It's cheaper than sending him to a camp or a social skills group that would help him to gain these skills.

Every attempt I have taken to help him look for a job or plan his time this summer has been met with disdain and the attitude of I have no idea what the hell I’m talking about. The value of him working with someone whom he will cooperate fully, is priceless.

The Job Coach will help him write a resume,  go through job application process, and work on interview skills. She will also help him look into some volunteer opportunities to help fill his time and maybe even work with him to get the ball rolling with his driving instruction through the driving school.

I believe there is nothing like the feeling you get from being a leader and doing something to help others. I hope that adding some opportunities for success and structure to his days, will be good for his mood.  The less time he spends in this house with me, the better for all us. He's happier when he's accomplishing something.

At this point in his life, I have to step back and let his support network help transition him into adulthood. It has been proven in the past with his brother, Red.  It truly does take a village. And sometimes, the best way to solve the problem is to take yourself out of the equation. 

Tuesday, June 14, 2016

Men and Guns


In the wake of the Orlando shooting a few days ago, social media has been full of sorrow, ranting, anger, arguing and so much more. I usually reserve my fighting energy for the battles right here in my home, trying to raise these children. I fight for services for them and their education. With what I have left, I write. I hope that my writing helps other parents to be inspired to keep fighting for their children. I go out into the world and try to touch a life in some way, whether that be helping a neighbor by picking up her children, or taking them a gallon of milk when she is sick. Babysitting for a single-mother friend, who doesn't have family support. I will give a smile, a compliment or encouragement to a complete stranger.

After so many were killed once again,  by a madman with a gun/or guns, I've been feeling helpless, depressed, sad and sometimes even angry, especially, when politicians start their rhetoric and pontificating.  Nothing changes.

Then I read this, and I knew I had to share it with my audience. It captures the feelings of helplessness that a mother feels when we see these things happening in our world. We want to protect our children, but we are afraid that maybe we can't.

The following post was written as a Facebook Status by my friend Kendra Norton-Qualls. Kendra is a friend and fellow autism mom. We have a kindred spirit kind of connection. She is an artist with words.

I wish men knew what it felt like
to hold a life inside of you 
for months and months
and months 
to have that life be dependent on you
for e v e r y t h i n g
this is a man's world is it not?
did I get that wrong?
well
where the fuck are they??
why don't they lead?
do they know how?
9 months is too damn long
do you know what it feels like
to carry a LIFE - for months on end 
to have your whole body change 
your emotions - change
your perspective - change
your life - change
and then to watch that life
grow and learn and mature
to have that beautiful blessed miracle 
be snatched brutally from this earth 
because MEN AND THEIR FUCKING GUNS!!!
well I don't (thank the goddesses)
but too many mothers do
way too many.
how do you receive a text
where your child is trapped in a bathroom
because a man and a gun
and you can't save him
you can't save him
you can't save that life
that you held for months
that you nurtured and cared for
you can't save your miracle 
because men and their guns
sometimes I don't like y'all (men)
sometimes I don't wanna be compassionate 
or understanding 
or empafuckingthetic
sometimes I have little to no respect
because most times you are weak
demonstratively weak
before you start to argue
look at our "man's world"
ask yourself who is the glue in your own life
I bet it's a woman
shit we do so much
SHIT!!
do we not populate the fucking planet 
do we not give you love
over and over and over and over...
who is your first teacher in life???
why do you ignore our cries??
what are you reaching for??
it is fair to hold you accountable 
men
it is fair
fix your fucking mess
you dominate the business world, the financial world and the political world
the world of weapons
the world of war
dominated by men
fucking lead or get the fuck out the way
9 months is too damn long!!!!!!
I'm so upset. 
I don't care if this is an unfair rant
y'all are unfair.
after Sandy Hook and nothing happened
nothing changed
y'all just went on
where were your VOICES!! Of outcry? Of disgust? where are they now?
Is this what male leadership is?
A world where we give birth to life
and then y'all take it away???
What is wrong with you?
Is it our fault? 
Is this burden to be laid at our feet as well? 
(shyt. 😞 we do so much)
No mother who has lost her baby, whether our uterus birthed that baby or not
No mother cares about your empty ass thoughts and prayers!!!
We want our babies back.
how come you're so good at sweating us for sex
but not sweating your fellow man for peace?????
I swear sometimes I don't believe in you anymore. 
I wanna take my own boys far far away
and save them
save them from this world of "men"

~Kendra Norton-Qualls 

I felt compelled to share this with you. However, I still won't argue about it. When Kendra speaks of "men" of course, she doesn't mean "all men." She is married to a pretty awesome man and has a couple of young men that she's raising.  For that matter ...I love and want to protect the young men that I have raised. You know who she's talking about ...and so do I. 

Thursday, June 2, 2016

OMG! It's Summer?


Subconsciously, I was trying not to think about the fact that summer is staring me in the face until the subject came up in therapy.

"Your summer will be very different from years past. Have you thought about how that will look for you and what you want to do?"

Me? Do? Summer? I'm not used to thinking about what I am going to do for the summer. It's usually all about what am I going to do with and for the boys. What activities and camps will I find for them? How much more driving will I have to do in this Texas heat? How will I keep them entertained and from killing each other or being kicked out of all of the city pools like in this blog ~"Down Dog."

Too much togetherness has never been good for our family's mental health. Summers have been the bain of my existence since the kids have been in adolescence. I have come to loathe what used to be one of my favorite seasons. It has become a time when I get more anxious, sad and depressed.

Usually this time of year, I'm visiting my doctor's office in a panic that my anti-anxiety/depressant isn't working anymore. Increase the dose! Please! I don't think I can make it through the summer without someone being seriously injured. 

If you have followed my blog for a while, you may have read some of our summer stories. "Lost My Happy" and "Very Aspergery Day" (which was hilarious, in a painful kind of way) are just a couple of them.

Last summer was definitely no "Bed of Roses." Red's behavior was at an all time high of suckiness. I don't even want to think about all of the details.

This summer will be divergent from the norm for us. For one, Red has moved out of the house, and I am no longer responsible for entertaining him. Can I get a hallelujah? He has arranged for his schedule to be very busy for the summer (key word here -HE arranged). He will be working an average of 25 hours a week or more. Work will be followed by working out at the gym where he is employed.  The group home will be providing his transportation to work so ...YAY ME!

When Red is busy and has a structured schedule, his behavior and anxiety are so much better. It gives his mind less time to wander and worry about all of the "what if's" of life.

Exactly what Blue will be doing is still up in the air. Why? Because he is 17 and no longer allows me to plan his life. I know for sure he will be taking driving lessons, and he will work on his required parent taught"driving hours" to get his license. Only, I won't be the parent teaching him. We will have to hire a "parent" because we would end up killing each other. He and his father are like fire and gasoline these days. He will also be taking a class through our local community college.

He says he wants to get a job, although he has yet to look for one. And who am I to try to prod him along? I would like very much for him to do some traveling ...without me. However, I have to get him to agree and figure out if and when he will be working before I can plan anything with or for him. So yeah. Good times. 

As for me, my plan is to take a bit of a break from the blog. I will check in every once in a while with a quick update. However, I want to use the majority of my creative energy on some other projects

Many of my readers have been asking me to write a book based on this blog. I would like to focus on that.  I've been writing this blog for seven years, so figuring out how to dissect it and give a hindsight perspective will be a major project.  If you know of any editors or publishers who may be interested in helping me get my stories into a book, please feel free to contact me. (wesleyweave@gmail.com)  Seriously! Please! Help!!! I am called to do this, but overwhelmed by the idea at the same time.

In the meantime, I hope to open up the blog to some of my readers, fellow autism parents and adults or even teens on the spectrum to share their stories.  If you have a story you would like to share or know someone who does; please contact me. I will be glad to help you polish it.
The Pacific Ocean in Kona, Hawaii
For the first time in 20 years, I plan to focus on self-care this summer. I will be exercising, traveling, writing and trying to be creative. I hope to put my feet in as many bodies of water as I possibly can. I will also be working on a few home improvement projects. My home has been severely neglected for the past few years.

My husband and I already have an exciting trip planned. Of course, I only have a general idea of what I will do with my mother and Blue while we're gone.  I find that I still get an extra dose of anxiety planning any get-away because there are usually so many details to work out. I'm trying to get over it, which is, of course, easier said than done.

This freedom is a strange, untethered feeling. It's kind of like I'm blowing in the wind, but I will try to make the best of it.

I will be in touch. I'm a Facebook addict, so there will always be updates there.

Love and blessings,

~Karen