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Wednesday, April 20, 2016

Adult Transition for Mom

The process of raising my boys feels like I’ve already done the work of a lifetime. Red is now twenty-years-old and Blue is seventeen.  I think maybe I should just retire now. I deserve it!  (I  fantasize about this ...a lot.) The reality is  the job of raising my children is changing, but it’s not over. It will NEVER be completely over, no matter how much I wish...

(Excuse me for a moment while I cry into my glass of wine.)

Okay,  I'm back. 

We are all at a point in our lives where we are going through a transition. 

Red is out of the house and though he has made tremendous progress, (in case you missed it, read about it here in the popular, "I Can Not Die" post) I am still his nervous habit. When he gets anxious (which is often) he calls me. This can mean way too many phone calls to count on any given day. Even deflecting, turning the cell on silent and not answering each and every call, is still an energy drain. He's like a robocaller,  dialing one number to the next between the house, my cell, his dad’s phone, his brother's phone just goes on and on and on.
I think he wants to make sure he is ALWAYS on my mind. Can we say -attention seeking? 

As he transitions into becoming a responsible adult, I try to be less of a presence in his life. I  try to work more behind the scenes. I don’t attend every meeting and appointment. It seems to help him speak up more when I am not there to be an extension of his own brain.  He may not be a full-time job for me anymore, but he is still a piece of work!

Blue will be a senior next year and totally opposite of Red, he is already working on becoming independent. He wants me as far into the background of his life as possible! I think I may actually talk to him less than his older brother, even though we live in the same house. He entertains himself.  More often lately, he calls his friends for his lengthy discussions about how the world should work, according to Blue. Score for me! 

He’s doing a lot of drawing lately as a calming/coping mechanism.  At the same time, he is slowing down on the video gaming, which usually makes him end up feeling more anxious. He keeps his own schedule, makes his own plans, and even sets up his own appointments. He is driving his life forward academically and socially, and even politically. (He just participated in his first political protest with some kids from his high school). He now belongs to two clubs that meet after school; one that he created, and now a Computer Science Club.  I am just the chauffeur and giver of money. 

So as the boys transition, I think it’s also time for me grow up too. There is a pull towards something more than making motherhood the center of my universe. I have the crazy mind of an artist. I feel a certain degree of gravity pulling me towards more creativity in my life. I have scratched this itch with writing this blog during those busiest years of raising my teenagers. I reaped the reward of expounding my creative energy while also having my own therapeutic outlet. Now, there are a few other creative projects that I would like to explore. 

The role of mother, wife, my mother’s daughter and caregiver, continue to command a great deal of my energy. However, with Red out of the house, things are a little more quiet for longer periods of time (in-between the phone calls, that is.)

The peace is allowing my inner voice to speak to me more than ever.  I'm starting to think of myself more as an individual with dreams, hopes, ambitions, likes, and dislikes. 

I am spending more time inside my head (which sometimes can be dangerous). I have to admit, I spend  a lot of this time beating myself up with negative self-talk about what I am not doing or achieving, instead of celebrating what I have accomplished. I realize there are still countless things-to-do, but I spend a lot of time juggling them all around in my mind until I feel overwhelmed.  Ultimately, I end up achieving a microscopic amount of my full potential.

Eventually, I find myself falling back into the habit of doing all of the things for all of the people;  running them around to their appointments instead of tackling the little projects I want to complete for myself. I’ve been doing that for so many years. It’s not easy to lose the habit.

I have caught myself a couple of times being asked to rearrange my appointments or plans, in order to take care of my family's appointments. Uh, uh. It's not happening! I'm learning to take care of myself. If I fall apart, they're all screwed. 

One of the thoughts I beat myself up with is how much time I waste in a day.  My therapist and my closest girlfriends remind me, that I deserve some downtime after being completely stressed for so long. However, the quiet self-reflection makes me I feel like I’m spending a little too much time standing around like a deer in the headlights. Um…which way should I go? Instead of just moving …forward. 

In quiet moments, I think about all of the parts of myself that I have let go of in the last few years while I was swimming in a pool of crazy with Red. His last two years in the house were hellacious -with one disruption and eruption after the next. If he wasn’t fighting with his brother, he was fighting with my mother. If he wasn’t fighting with my mother, I was diffusing things between him and his father. It was a constant expulsion of energy!

Recently, a post came up in my Facebook history that I wrote a year ago, "Excuse Me While I Go Left" .  The following day I wrote  "The Script."  After reading both of these I thought, how did I NOTcompletely lose my mind? How did he make it to the age of 20 without either one of us being arrested? 
As the dust has started to settle, and the fire after the war comes to a smolder, I reflect...

You made it through one of the most difficult battles of your life. Now, what do YOU want to do?

Better yet, you spent years erasing the essence of yourself. What are the things you DO NOT WANT to do anymore?  

I put together this list -the new philosophy for my life with the underlying mantra, “Take care of Me.” 

I will not say the automatic yes. 
I will give myself time to think about it, and say NO when that is the right answer. 
I do not want to consistently put anyone else’s needs and wants ahead of my own.
I will pay attention to my thoughts and follow my instincts.
I will make myself my priority.
I will listen to my body when it says, “I need rest, exercise or to see a doctor.” 
I will not waste time with people, just for the sake of being around people.
There must be an emotional, spiritual connection. If there is no connection, I need to move on. 
I don’t want to waste time …period. 
I want to live my life with intention and purpose. 
As a part of that intention, I will relax without guilt. 
I will enjoy the sound of the birds singing outside of my window.
I will sit and just enjoy the breeze and the feel of sun on my skin.
I will stop and take a selfie of my silver hair and share it whenever I want to! I earned every last one of them. 
I will smell the roses. 
I will just be …as often as I possibly can. 
I want to see the ocean -often. 
I want to create memorable experiences. 
I want to be in service to other parents who are walking with me and behind me on this journey of raising special children. 
I will take the opportunity to make life better for someone else, but not at the expense of my own life.
I want to live each day creatively. 
I will savor every quiet moment. 
I will make my home a sanctuary. 

This philosophy is a work in progress, as I am. I give myself credit for doing a better job of taking care of myself.
I now go to *yoga and therapy regularly.
*Lies. Haven't been to yoga in two weeks! I'm going back! I swear! 
I bought and am actively using a Passion Planner to keep myself focused on my personal/creative desires, as well as the work of taking care of my family.
I continue to work on showing myself the same kind of love and compassion that I have shown my children for all of these years.
I am making myself a promise to work hard at following my own advice. I hope that you will join me.

Wednesday, March 9, 2016

I Can Not Die

A couple of months ago, in a quiet moment between emergency phone calls (which are not really emergencies) from Red, my 20-year-old son, I thought to myself, "I definitely can not die."

How will these boys survive?

There are so many subtle nuances of life they will never be able to figure out on their own.
No one else will have the time or the patience o deal with them.

What happens when they have to deal with a government agency or a health provider who simply is not doing their job? Believe it or not, it happens. 

Will they be able to advocate for themselves?

I spend so much time thinking outside of the box about how to solve problems for these young men of mine.

I am in the background of their lives, flipping tables over to make sure that they get what they need.

Over the years,  I have spent a lot of energy just making sure that providers,  teachers, and administrators are doing their jobs. Even now that Red is an adult, I'm still working with the group home agency, the Department of Rehabilitative Services, Medicaid, Social Security, our local mental health authority, and even the school district Adult Transition program.

The thing is with these agencies and programs is, if you don't ask, you don't receive.  If you're not aware of what's available, you get the bare minimum. If you don't know your rights, you can get screwed.

In the care, feeding and raising of these children, there are times when things are going so horribly wrong, I wonder if they will ever go right.

There are still times when all I can do is laugh, cry or have a drink or three.

There are times when I doubt myself as a parent ...when I feel like I'm doing it all wrong.

I have put so much effort into raising them and advocating for them to get them the supports that they need to be successful, or to at least survive.
Maybe I've done too much.
Maybe I haven't done enough.
I'm too soft.
They are running over me.
They are draining the fricken life out of me!
I hate this job.
I quit.

The truth is, the success or failure of your children is not all about how hard you tried as a parent.
We are a part of their success.
We are not their success or failure in total.
Ultimately, motivation for what they will do with their lives must come from within.
A parent can only plant the seeds, water the plant and in my case, kick a few asses.

We can't walk in their shoes for them.
We can not be inside their heads for every choice that they make.
We can't always be there to whisper, or scream words of caution when they are about to make a stupid decision.
Sometimes, we have to sit by and watch them run in front of the moving train.
It's the hardest thing ever for a parent to do.
We have to let them fall and cheer them on as they get back up.

When mental illness and autism are a part of the picture of your child's life, there are even more facets that we have no control over.

Medication is one big toss up.  It will either help tremendously or send them further over the edge. I've seen both. Have I told you how much I hate psychotropic medications, especially during puberty when their bodies are growing and changing?  It's madness! But we are desperate to help them, by whatever means necessary.

Therapy often feels like a gigantic waste of time, energy, and money. Again, we're desperate. We will give anything and everything for the off chance that something will work. Some days, therapy feels like a big scam that we buy into to give ourselves hope that behavior and communication will get better.  (One day, I will finish my post about ABA therapy, and how many headaches it gave me. I wanted to strangle our therapist.)

With each new therapy, new teacher, counselor, and mentor, we pray that our children will put two and two together and make four.
It could happen.
What else can we do other than put our feet on the ground every day and keep moving forward, trying something, anything, everything, to help them make even incremental progress?

Well today my friends, I see progress.

Red has worked for the YMCA for the past two years after high school.
When he was in the vocational program in high school, he could not get hired to save his own life! There were days, where he was just too far off on the deep end of anger and depression. He spent a great deal of his time engaging in arguments and conflict with job coaches instead of allowing them to help him.

Because of medication and a horrible diet, he had become excessively overweight.  This summer, he was so out of sorts. I  determined that most of the medications could not possibly be helping him. Two of them were definitely a part of the weight gain issue. We made some changes which at first, made things worse.  We went back to the drawing board, this time with another doctor. It was a painful process, but it was well worth it in the end. We were able to get the number of medications down to just two that seem to be helping him.

After a prompt from his doctor and a combination of being on the right medications, he made some changes in his diet.  At first, we kind of forced him to start exercising.  Basically, it was like, we're not picking you up from the YMCA until you swim at least 10 laps.

When he saw himself starting to drop weight, he decided to completely change his diet and start working out five days a week. He found an online program to follow, which taught him about advance meal prep, and high-intensity work outs to help him get fit. He became obsessed with it. These changes  have led to over 100 pounds of weight loss!

Recently, when the YMCA was about to lay him off because they couldn't give him enough hours, with my prompt and his job coaches assistance, he found another job before the layoff could happen. He is now working at another major gym.

Several months ago, we had to have him move out of our home and into a group home. It was abundantly clear that neither of us could survive much longer living under the same roof. Aside from his behavior in our house, deep inside I knew that he needed a nudge, or rather a swift kick, to help him get the motivation to move forward into adulthood.  I hate to admit it, but the closer he was to his mommy, he saw absolutely no reason to grow up.

Now, the boy who in high school,  could almost NEVER get there on time, is now getting himself to work for a shift that begins at six a.m.! The night before, he arranges his taxi ride to pick him up at 5:15 a.m.

He prepares himself for work before bed.  He arranges his bag with his clothes for working out after work, showering and changing so that he can go on to his 2nd job! Yes. He is volunteering at a local middle school helping special needs kids with Science and Physical Education. This is the middle school where he was once in the self-contained behavior program.

Speaking of showers ...his transition teacher has been able to get him on a shower and laundry schedule so that he will always be fresh and smelling good when he walks into one of his jobs! I tried for years to do this! He would never listen to me.

When Red finished high school, he was sure that he could NEVER be successful in any college classes. "I hate academics!" he would say. In high school, he required a lot of one on one support to stay on track.  However, one of the things I had him do while in High school, was work with other special needs students who had more challenges than he does.  I figure the best way to stop thinking and worrying about yourself, is to engage yourself in helping others. The special needs students loved him, and it did wonders for his self-esteem.

This lead to him deciding that this is what he would like to do with his life. He wants to others with special needs. Recently,  he earned his Paraprofessional Certification from our local community college! He hopes to be hired full-time this coming year as an Instructional Assistant in our local school district! Hence, he is volunteering now, in hopes to gain exposure and more experience so that he can ultimately become a full-time employee.  (Yeah. Another one of mama's ideas.)

He still has a way to go towards independence. I still worry ...I still wonder if he will be able to make it on his own.  Living in that group home where things are less than ideal has certainly helped with his motivation to want his own apartment.  He will probably still need a certain level of support no matter what, at least for the next few years.

I pray that he will find an awesome roommate be able to get his own place soon. At least, that is his goal.

Maybe someday, he will find a wife who will compliment his strengths and weaknesses.  
Dear God, I hope so!

Meanwhile, I hope to graduate someday further into the background of his life, playing a much smaller role. I want to retire from motherhood. I daydream about this every single day. Yeah. I know we can't really retire. I would at least like to take a sabbatical!

I hope that I can die some day peace.

I still worry.

I still wonder...
Will he be able to make it on his own?
Will he ever drive?
Will he ever be able to navigate his life without my help?

There are still many "what ifs."

At the same time...
There is progress.
There is hope.

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Monday, February 15, 2016

Autism-isms -Snow Days by Jamie Cruit Knopik

Editorial Note: 
Today I am pleased to bring to you this guest post by fellow autism mama Jamie Cruit Knopik. 
When I read this post on a private support group, I knew I had to share it here on the blog. It has that loving autism-mom, quirky sarcasm, exhaustion and a side order of humor about this crazy autism life, that I  love. 

In the wonderful state of Minnesnowta, there are some hardcore, Eskimo-like, winter surviving people. We don't get too many snow days. If they shut down schools, it's Defcon 2. Well, we hit that on Tuesday and Wednesday this week.

I'm talking early release, stuck in the house, stir crazy, iPads are dead cuz you won't let them charge, destroy the house, acting a fool, kill yo brother, have 20 meltdowns, autizzle to the nizzle, freak out, shove handfuls of chocolate down your esophagus (ok that was me), go all The Shining up in here type of days.

Then we have Autism.
Lovely, lovely Autism.
Autism NEEDS school. Like every single day.
Autism needs structure, routine, and an Occupational therapist on hand.
Autism hates snow days.
Snow days, bad.
Snow days Bring out the crazy.
Winter gate causes Autism to go all nuclear and have an Autism meltdown. Nobody wants this. Cuz there ain't no meltdown, like an autism meltdown. Cuz an autism meltdown won't stop. (Thanks Master P for the inspiration).
My house looks like it was ransacked by looters looking for free TVs.
A good bit of Monday was spent cleaning it up from the weekend.
If it was summer, they'd be outside swinging and half naked trampolining. (Donovan).
But it's winter so they are inside naked, trampolining all over my couch.
Today they are back in school, and I am exhausted.
I need to clean my war zone, but I'm sooo wiped out and running dangerously low on chocolate.
Autism doesn't just affect the person who has it;
Autism also affects those who do not.
I have second hand Autism.
The moral of the story is that autism and snow days don't mix.
Autism is hard all the time, but on snow days, Autism is a punk ass bitch.
That is all.
Off I go to clean the trenches.
Carry on.

Jamie lives near the metro area of Minneapolis Minnesota. She has three children on the spectrum. Donovan will be 15 in April, Gracie will be 10 in May, and Alex will be eight in May. She also has a three-month-old baby boy named Davin.  Jamie is in the process of writing a book called Autism-isms: My life on Autism Avenue. I can't wait to read it! 

Monday, February 8, 2016

The Right to Pee

For so many years I didn't make the time for therapy. It was yet another one of those things that I put on the back burner while I was too busy raising my children, taking them to all kinds of therapy. 
Now, I feel like a kid in a candy store every time I pull up to my therapist's office. Me time! Woo hoo! I'm gonna get sane. (In my sing-song voice.)

Therapy is helping me to put self-care on the top of my list.  It helps me remember to keep the boundaries that were erased by years of raising two children who demanded that their needs be met immediately. 
The other day, I realized that I still find myself holding pee. I have been conditioned to believe that I just don't have time. I always had to be in a hurry to do something for someone, to pick someone up or drop someone off somewhere, to make sure that all of their basic needs were met before I met my own.  
I confess for years, while in the thick of raising my children, I didn't take showers as often as I should have. I always felt like I had to choose how to spend my free time. Should I write or take a shower? Should I take a nap or take a  long hot bath? Should I eat or take a shower? But mostly, should I get some more sleep? I was always behind on sleep. 

I stepped into my therapist's office a few months ago, a blithering mess from the stress of dealing with Red’s transition into adulthood and out of my house. It turns out that constantly being the diffuser of explosions in your home can fry your nerves and kill a few brain cells. 
Even when there wasn’t an explosion, I was always preparing for one. I could hear screams in my dreams. When it was quiet, I was wondering why and when the quiet would be jarringly interrupted. If I was behind my closed bedroom door, who would burst through it, or start banging on it at any given moment. I hear footsteps. Are they coming towards me? Shit!

Being a mother for me meant years of trying my best to keep everyone in my house happy or at least from being sad, depressed and angry which of course, was impossible, not to mention, not my job. Making others happy was often at the expense of the things I wanted to do that would make me happy. Are mothers entitled to be happy or is that something you give up in labor and delivery?

That people pleaser in me spilled over into other areas of my life. I'm like Joy from the movie "Inside Out."  I want to be happy. I want my friends to be happy. I want my siblings and my parents to be happy. I certainly do not like upsetting or disappointing them.  Confrontation must be avoided at all cost. I don’t enjoy arguing. I live with people who seem to live for it. I don’t like being mad at people, and I certainly don’t want people mad at me. When you live with constant bickering and fighting, you try to avoid conflict in other areas of life.  
The trouble with all of that is that I found myself constantly giving myself away, one little piece at a time until there was nothing left besides stress, anger and resentment. I found myself always doing things I didn’t want to do. I was slowly losing my mind and becoming an anxious wreck, always taking on everyone else's negative energy and problems.

I am taking some of that power back. I am learning to say, "No. I'm not doing that."

When my father passed away two weeks ago, my husband volunteered us to do the obituary for the memorial service. He also tried to get us involved in setting up some kind of scholarship fund. I was like, 'Hell no! I don't have the energy for that.' You go right ahead if you want to. I did the part of the obituary that I wanted to do. I did the research, and I wrote it. I wanted no parts of figuring out the layout. I didn’t worry about how he waited until the last minute to get it printed. It was his deal, not mine. I set a boundary for myself, and I stuck to it. 

When I got to L.A. for the memorial service, I didn’t try to do my usual running around here and there and everywhere to see my friends. I let them come to see me at the memorial service. (It was really like a party, at a jazz club and bar, but that's a whole other story.) It was so wonderful seeing everyone, but when they all requested special get-togethers after the fact, I knew there was no way in hell I was going to do it. Sorry, friends. Red ruined that for you. I can’t stretch myself too far anymore. I just don’t have it in me. Instead, I spent the time with my family. And I didn’t even let that stress me out. If I couldn’t see my siblings at every single possible moment, it was perfectly o.k. (Okay, I felt a little guilty the day I didn’t make it down to my dad’s apartment to finish cleaning it out.) I was a little pissed that my husband and son were moving too damned slow to make it happen. (But, I digress.) The point is, the world did not end because I did not stretch myself too far. 
Last night when Blue started having a meltdown because he was unable to register for accommodations for the S.A.T. Dad comes into the room and as usual, starts adding fuel to the fire. Ah ah ah! Pump the breaks. Boundaries. I did not allow myself to get sucked into their crap. The difficulty they have communicating right now is THEIR deal, not mine. I can’t fix it. I can’t always diffuse it. I certainly can not take it all on and allow it to drain my energy. They are going to have to work their shit out…or not. I can’t do it for them.  I will not do it for them. 
Stolen from my friend Elizabeth Gilbert's FB page.
I am learning, better late than never to step back, to let go, to not engage, diffuse and try to fix every problem. 
I have worked double overtime for years. For now, I don't have to spend every moment doing something on my never ending to-do list. I have the right to:

  • have compassion for myself.
  • set and keep my boundaries. 
  • take time for me and not feel the least bit guilty about it. 
  • allow myself time to grieve for my father in whatever way I need to. (Which may include wearing black around the house, so that people will remember to leave me the f8#% alone.) 
  • allow myself time to adjust to the transition of letting Red go. Allow him to grow into adulthood, without me holding his hand along every step of the way. 
  • I can just be. 
  • I can take a long, hot, showers and not get out until the hot water runs out. 
  • I can pee every time my bladder says I need to. 
  • I can be an individual, not just a mom, a wife, a friend, a sibling, daughter, and caregiver. 
Most of all, grown-ass folk who can do for themselves should.  My family is now full of grown-folk, including the soon to be 17-year-old, who never wants to be told what to do.

It's my hope that at least one person will read this, take just one step back and save yourself from extinction. 
Be well or at least, half-way sane. 

Sunday, January 24, 2016

Blue on Hollywood

Earlier this week, my father passed away. I've been trying to prepare myself for his death for the past couple of years. But are we ever really prepared? He was 86 years old, diabetic, stubborn and was also recently diagnosed with cancer.

I use the term stubborn because even though his health has not been the best, he refused to listen to doctors, health-care providers and his children.  He has been in and out of the hospital dozens of times, recently. Sometimes, he would refuse to stay in the hospital and would check himself out against doctor's orders. Other times, he would refuse to leave the hospital, when they said he was stable enough to go home or they recommended a skilled nursing environment.

He lived life on his own terms, despite the challenges that he faced.  I can't be mad at him. It was his life to live however he saw fit. If you follow me on Facebook, you may have read some of the crazy stories that I've written about him over the past few years.

His friends called him Hollywood. Even though he was born a poor boy in Arkansas, and raised in St. Louis, Missouri, his personality was larger than life in any of those towns.  He went on to make himself a success in the Hotel industry.

I am still in the midst of processing my feelings over his passing. I am trying my best to hold on to the good memories ...and there were many. I'm sure I will write more about him later.

Today, I thought I would share some thoughts from my son Blue about his feelings over his grandfather's passing.  He wrote this as a Facebook status a few days ago. He is allowing me to share it again here. Let's go inside the mind of a pretty special teenager with Aspergers...

"My grandfather has passed away as of Tuesday morning. (January 19, 2016).  For the past two days I've tried figuring out what I wanted to say and now I know what to say. I never formed a huge bond with him. I only saw him once every year. I could never feel as much pain as my mother or all of her siblings are feeling.

Blue & Grandfather, August, 2015
I last saw him this past summer and to be honest, it was probably one of the best times I had with him. I wish I could have talked to him one more time before he passed. 

Although this tragic event has transpired, I was already experiencing stress for the past few weeks, with me getting back to school, starting Drivers Education, a scandal with one of my teachers, and me not getting along with my father. I changed my medication this past November and I have slowly been changing. I am more self-aware, more agitated and more stressed out. The good news is, I am also not gaining weight anymore. 

With so many things transpiring one after another, I have fallen behind in my school work and I am less focused on my daily tasks. Now, my grandfather has passed. What am I gonna do? 

Right now, one thing is important to me. Life has been shouting it in my head, I need to be a better and stronger person. I need to be smarter. I need to be a better friend to everyone, a more loving person, a more moral person. I need to work harder. 
Blue & Grandfather, on a visit to his school for lunch. 

With everything going on I am becoming closer to everyone in my life, friends, family and even people at school. That's all I care about now, not thinking of myself as much but being there for everyone. I know that would make my grandfather proud.  I will eventually get past all of this stress because every situation is temporary. I just want  my family and friends to know that I love and care about all of you. You all mean a lot to me. For all of the bad things I have caused any single one of you, I am sorry for all of that.  I will make it better from now on. 

Thank every one of you for being in my life and I promise me being in y'alls life will definitely worth it."

This is dedicated to my father, Ward "Hollywood" Wesley.
April 22, 1929 - January 19, 2016

As my niece Erin G. Wesley said today, "Loving you eternally and hope you're causing pandemonium in the afterlife. Onward."

Monday, January 4, 2016

2015 It's a Wrap -Thank God!

2015 was a whirlwind of drama and change for my family. The biggest change being the fact that Red has moved out of the house and into a supported living environment. (That's my fancy name for group home ...that I don't like the sound of.)
He loves it one day and he hates it the next. Mostly, I think he's okay with it, but he loves to make me believe that he is miserable.  He has a special talent for playing on my emotions and I have a special talent for allowing him to do it. I'm working on it, but it's not a simple habit to break.

The truth is, there is no ideal situation for him and if there is, I haven't been able to find it yet. There was no plastic bubble to move him into that would protect him from all of the trouble that comes along with learning to grow up and become a responsible adult. He doesn't have the skill set to live on his own, yet. I knew that getting along with roommates would not be easy for him, but I had a feeling that it would be better than the way he gets along with us. And so it is. He doesn't have any huge problems there. He is mostly compliant with staff. He likes his housemates for the most part. He thinks the staff is lazy. But hey, that should make him feel more at home, right? It's not the perfect or ideal situation, but it's a start and it's what we have to do for now.

Over the summer both of us had come pretty close to the brink of insanity, one of us a little closer than the other.  The level of intense feelings, emotions and behaviors had rendered me pretty close to incapacitated. I was unable to think clearly. I couldn't sleep and had little to no appetite. I found myself wandering through the days just trying to maintain my composure, while at the same time, trying to contain the explosions between the boys. I was like a zombie walking through a minefield.  Thank God that Blue is so independent, because I was basically parenting him on auto-pilot.

The good news is, that near breakdown this summer made my husband realize that he was about to lose me to the dark side of the force, so he sent me away with Blue for 2 weeks to California. I was nervous about taking Blue. I thought we may end up killing each other, but we actually had a good time, relaxing, bonding, spending time with family and friends. The adolescent Blue at age 16, is mellowing out quite a bit and can be quite enjoyable to be around, especially sans the stress of his demanding brother.

Blue has really come into himself in 2015. He has grown immensely. He is handling school extremely well, even when working with difficult teachers and peers.  He has been able to advocate for himself and pull through with excellent grades. He was inducted into the National Honor Society. He continues to run the club that he started for those who may not feel as included as their typical peers. He is developing more relationships with peers.  He even went on his first semi-date (with a girl that he likes, but won't date, because he's not ready to deal with all of the drama that comes with high school relationships). He has such a mature outlook on life. He makes me proud on a daily basis.

I started seeing a wonderful therapist this year. I am absolutely, over the moon, happy about the fact that I am finally seeing someone for ME! I have been driving the boys around to therapy for years, while knowing damn well I needed to see someone for myself. Therapy is helping me to come to terms with all of these changes and is helping me get through the post traumatic stress of living in total chaos for so long.

I have some battle scars that I am working to heal. I have given so much, for so long.  At times now, I find myself wanting to totally retreat and not give anyone anything.  I am often resentful when my family asks me to do anything for them especially, things that I know they can do for themselves (adults, who I have spoiled, especially my mother). I am also cutting back on what I am willing to do for Blue, simply because I want him to be able to leave this house and go to college without being so dependent on me.  So far, my therapist has been excellent at helping me work through this.

The transition into adulthood is not just a transition for Red.  It's a big transition for me.  I am trying to let go of control when it comes to his life even though he doesn't want me to.  I am  pushing him to use his resources (and he has many).

I no longer attend every meeting, doctors and therapy appointments, nor do I transport him to these appointments. I do still have to do some advocacy and coordinate things from behind the scenes.  Some of the staff from the agency that runs the group home leave quite a bit to be desired.  I however, am not the one to try to get over on. I try to make sure that they do what they're supposed to do so that he gets what he needs. I work in the background,  so that I'm not as much of a presence in his life. I feel awful for some of the clients who have no one to really speak for them, because in this world of services for those with disabilities, you only get what you scream for.

The most difficult thing is trying to maintain healthy boundaries between myself and Red.  He makes this so hard with his incessant phone calls and text messages.  I keep my phone on silent most of the time.  I had to put him on a phone schedule/contract just to cut down the number of phone calls.  It's working ...mostly. He has cut way back on the calls and mostly follows the schedule, unless he gets angry and anxious about something.  I only answer his calls at our designated time.  I will just ignore the call, or text him saying "I will talk to you at our appointed time."

Lately, I have noticed that slowly he is pushing the boundaries again.  When we do talk, he doesn't want to hang up. Ever! He wants to talk about the same negative complaints, which eventually send him spiraling and drive me to NOT want to answer the phone the next time he calls.  Again, I begin to feel myself being held prisoner by the calls, just like I did here at home when he would refuse to walk away or leave my room.

There's that self-imposed, motherly guilt that makes me NOT want to leave him all alone, hanging in the wind, feeling like no one cares about him. On the other side of that, is the feeling of resentment.  There's that whisper, (or maybe it's a scream) that says, "I don't want to do this! I don't want to talk to him! This is not how I want to be spending my time! And most of all, this is not healthy for either one of us!" He needs to build a life that does not include talking to mommy multiple times a day. I have tried to get his psychologist to work with him on this, but so far ...little to no progress.

On a more positive note, one of the biggest highlights of 2015 was our trip to the big island of Kona, Hawaii.  (During which time I took absolutely zero phone calls from Red.)  My husband won the all expenses paid trip by being in the top 1% of the sales force for his company.  He works for an international corporation, so there were people in attendance from all over the world, India, South Africa, Asia, Australia, Europe and of course, the U.S. There were 200 winners and among them, only 3 were African-American.  I may be a little biased, but I felt like my husband was the biggest winner on the island.

We put together a P.R. package before he was selected, about our life raising the boys, the advocacy and work that I do on this blog and my online support groups for parents of children with autism. I'm going to say, that our work/life balance package, was what put him over the top for the win. The company also gave a lot of credit to the partners and spouses of all of the winners. Thus, making us feel like the sacrifice of our partners time was worth it.

The trip was the most relaxing vacation of my life, probably because it came at a time where we needed it more than ever.  This life of raising two boys with special needs and taking care of my mom  is extremely hard on a marriage.  Both of us were on the verge of breaking down after a tumultuous year with our family.

The sound of the ocean was healing to my soul.  If I could have taken it back home with me, I would have. And let me tell you, it was almost impossible for me to leave it behind.
Everything was first class all the way, from the air travel, to our ocean front room at the Four Seasons Resort, where all of the staff knew my favorite drink and kept them coming. We were treated like royalty while we were there, right down to the private Keith Urban, concert on our final night.
As we sat on the quiet beach listening to the waves crash against the coast I said to my husband, "Everything has been so crazy for so long, this almost seems too good to be true. Like when is the bottom going to fall out? When is someone going to step up and say, April Fools! We were just kidding! Good things like this don't happen to folks like you."

It never happened. The trip was perfect and apparently, we did deserve it.

p.s. I love your comments! Thanks for reading and hanging in there while I neglected this blog for so long.

Friday, November 13, 2015

Unusually Normal

In recent weeks since my son  moved out of the house , I’ve gone through a range of emotions…
from fear to relief,
happiness to emptiness,
anger to empathy.
Moments of feeling pissed off,
and invaded…
to moments of feeling unusually normal.
Is that even a thing? Unusually normal?
It must be, because I’ve felt it.

When the house is eerily quiet, I think to myself, Wow! This must be how normal people feel in their own homes …like all the time or at least, often. 
I can’t believe I lived in total chaos for so many years.
This quiet is weird, heavenly, but weird.

I’ve been able to watch some of my favorite television shows. I'm actually all caught up on "Scandal."
I even watched one of my favorite political talk shows and was actually able to follow along and keep up with what was being said, without thinking to myself, Yada, yada, yada. Who the f*#% cares? I got my own problems.

I spent a couple of Saturday afternoons watching back to back movies on HBO, without interruption. Well, Blue watched some of them with me so there was his occasional question, but not intentional disruption. (Don't tell him I told you, but he even watched "The Devil Wears Prada" with me. )At first he protested. "This is ridiculous! She's so mean." Probably reminded him of his Spanish teacher. But then, he would not leave the room until it was over. I loved every moment of him watching with me.

When Red was here, if the focus was not on him, he found a way to make it so. He would come into the room and say something like, “Why are you watching this crap?” Or he would just start talking about his subject of interest, without any consideration for what was happening in the room before he walked in.

A quiet, peaceful home, watching television, reading real books —these are simple pleasures that most people take for granted.
These simple things I have not been able to do for years, at least within the comfort of my own home, with any sense of regularity.

I shared some of these feelings in therapy today. Have I told you how much I love my therapist? 
She makes me think about myself for a change. We dive into my feelings and she redirects me from judging myself. Instead, she helps me to congratulate myself for both simple and extremely complex things that I have accomplished. She helps me to acknowledge the transition that I'm going through. How I'm trying to let go of control over his life after so many years of pulling all of the strings and being the fixer.

She encourages me to take care or myself —to reconnect with who I am, other than servant to others. She has confirmed what I already knew, I’m living with P.T.S.D (Post Traumatic Stress Disorder). I am recuperating from years of what was to a degree, an abusive relationship.

Today, she said something quite profound. “Instead of feeling guilty because you’re finally having some peace, doing things for yourself after all of these years, how about you look at it like, you’re finally showing yourself some compassion.

All of these years, I’ve talked about needing therapy for myself, while I was too busy making sure that everyone else got every kind of therapy available to man.
My oxygen mask was withered, frayed, all cracked up.
There was no steady flow of air.
I was gasping, while everyone else was breathing clearly.

Well, not anymore.