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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.

Tuesday, November 3, 2015

"I love you mom."

You must know how rare it is for a teenage boy to voluntarily say, “I love you mom." It is probably even more rare for a teenage boy with Aspergers to say it, unsolicited and actually mean it. Imagine my shock when it happened yesterday. 

I picked him up after a rough day at school. He had been working on a group assignment over the past couple of weeks for his Spanish 3 class. Group assignments have never been a picnic for Blue. I’m sure the same holds true for many people with Aspergers. There’s all of that social communication that has to take place, along with compromise and listening to other people’s ideas. This can prove to be quite difficult for a person who usually thinks that his ideas are best. However, collaborating with others is a skill that we all eventually have to use in life.

I must say, he’s come a long way working on group assignments. He took this project on like a champ. He was being a leader at the same time, willing to accept and actually solicit ideas from peers. Unfortunately, they were not all as accessible to do their parts of the project.

The blooper in the mix of this assignment was not arguing with peers, but dealing with a less than flexible teacher. A teacher who I may punch in the face, if we ever cross paths. Most of his assignment group are in the high school band.  They had an intense week of performances, competitions, travel and rehearsals. Blue having empathy for his overworked team mates, tried to take on the brunt of the work for the project. A task that was nearly impossible to do. 

They ran out of time and the project was not complete. The teacher supposedly said, she would give them extra time. She then later decided that their band obligations were “not her problem." So, she recanted her offer. At least this is the way that Blue describes the situation. Who knows what kind of miscommunication actually took place. 

He called me that morning fuming about this teacher! What I noticed was that even though he was very upset and probably wanted to call her every name in the book, he didn’t. He didn’t yell, scream or curse. I think he may have said something like, “I hope she gets run over by a truck.” Not really …I’m the one who thought that.  

A few years ago, he would have been screaming, “Come get me out of this hell hole! This teacher is a total bitch!”  

Instead we did some quick problem solving...

“Who can you speak with to help you communicate with this teacher?” I asked.
“I looked for my tracking teacher, but she’s not in her room.” 
“Do you think you could find Ms. B.?” (the Special Ed. Lead) I asked.
“Try to do that, I’m sure she can help you communicate,” I said.

This is progress for both of us. I wanted to call that teacher and give her a piece of my mind and a reminder about his I.E.P. and accommodations. Instead, I gave him the opportunity to advocate for himself, which is an important skill for our kids on the spectrum if they want to go to college. 

I read a great article about preparing our kids for college yesterday on titled, High School Sets Up Autistic Kids to Fail In College -How to Fix It. The article clearly states that our kids need to be a part of their I.E.P. process and they must learn self-advocacy. Colleges won't even allow parents to have a say. 

When I picked Blue up from school, he looked exhausted. Thanks a lot daylight savings time and the teacher who gave my kid a tough time. 
"How did everything go? Any solutions?"  I asked.
He explained that Ms. B. e-mailed the teacher to make sure that his I.E.P. would be followed. However, after school he had a “difficult conversation” with the Spanish teacher. “It was really draining to talk to her,” he said. 
Blue and Me in Malibu
Summer, 2015

OMG! I was so proud! He handled things calmly! 
As we drove to Starbucks so that he could work on homework he said, out of nowhere, “I love you mom.” 
What? *Tears  
“What made you say that?" I asked, calmly, trying to act like this was not a huge deal. 
“I just appreciate that you’re always on my side.” 
*More tears. 
“I always will be son.” 

Pow! Take that stupid Spanish teacher! Thanks to your inflexibility and trying to bully my kid. I got an unsolicited, “I love you!” Bam! 

*No teachers were injured or cursed out as a result of this story. In fact, I may not punch her in the face after all. I may just do the kind, Christian thing and say, "Thank you for being difficult. The result was fabulous dahling."  

Wednesday, October 28, 2015

Silver Hair -Don't Care.

A few weeks ago I looked in the mirror and winced. Yikes! Who in the hell is that? I wanted to cry over how old and tired I looked. The gray hair is in the process of doing a massive takeover. I have been vacillating back and forth over the past year whether or not to let it happen. When it was just one little patchy area, I thought it looked kind of cool, like a natural highlight.  However,  as the gray started spreading like a disease, I've had mixed emotions over it. 

According to my history of personal Facebook posts, I have been having this gray hair argument in my head for quite some time. That Facebook "On This Day" feature can be cool, but sometimes a little depressing when you see some pathetic post you made 2 years ago about the same subject that you're currently still whining about. 

I  digress...
I like to consider myself to be somewhat of a natural woman. I no longer put chemicals to straighten my hair. I don’t do the weave thing that a lot of black women do.  Looks great on some of you, but it's too damn hot here in Texas for extra hair. That's why I cut off my long dreads. I wear just enough makeup to accent my facial features and fade a few blemishes, but I don’t overdue it. 

I realize now, the reason I wanted to cry when I looked in the mirror makeup less, exhausted, with more gray hair than I realized, is because I wasn’t happy with myself.  Self confidence had flown out the window. The reflection told the truth of the life that was literally being sucked out of me from years of giving more of myself than I actually could spare. I was allowing myself to be abused and in a way, I was abusing myself. My kindness and love was being taken for weakness. I was giving myself away piece by piece, gray by gray, puffy eyes, disrupted sleep cycles and lost appetite.  It wasn’t a good look -as in not pretty.At.All. It certainly was not  the way I wanted to feel. 

There are people in this world who are takers.  It may not be any fault of their own. Sometimes as parents, we love our children so much that we spoil them and they get used to it especially, when we feel bad for the extreme challenges that they face. There is a saying, "Be careful what you do for your child with autism. They will expect you to do it over and over again." 

Some takers may have a psychological issue or problems with perspective. Some are just black holes that can never be filled up.  I know a few people like that. I'm sure you do too. When a taker knows that  a giver loves them unconditionally, they see no reason to stop asking for more. 
Beauty is a state of mind...
Sooner or later, givers have to learn to stand up for themselves and say, “Sorry dude, but we’re all sold out here. I got nothing for you,”  or better yet, “I love you, but I love myself more. If I don’t take care of myself, I will have nothing to give you or anyone else."

It took me a very long time to stand up and say that to the son whom I love ALMOST as much as I love myself. I have given you a good foundation. I have put a wealth of supports in place for you, but I have to take care of me. I think it will be better for both of us if I love you from a distance for now. 
In other words, it's not you's me.

Today I looked in the mirror and not only was the sparkle back in my eyes, but the gray no longer made me look old and tired, it had turned into sparkling silver highlights. And I was rocking it! 

Friday, October 23, 2015

A New Home

It was his senior year and we all were anxious to get him out of the high school environment. And by we, I mean his father, myself and his high school special education team. High school was crushing his spirit, making him so unhappy and angry.  

He finished all of his credits by December and by that January, he would be starting Transition classes.  We were invited to attend Open House for the Adult Transition program to get an idea of what his new adventure would look like. The Open House took place at the community college campus. This is where he would have class a couple of times per week. I remember being excited about that aspect. My son …on a college campus, before he even graduated from high school. 

As I sat through the presentation, observing the various students and listening to the information being presented, I wondered to myself, “Is this right for him? Is this what he really needs?” 
He’s so intelligent.  I wanted him to take an actual college class or two. 
Was he ready for college classes? Not really. He needed so much support in the high school setting. 
Was he living up to his potential? Hardly, but I didn’t think it was  because he didn’t have the ability to reach further. I thought his lack of achievement was because he had been bogged down in the social quagmire of high school. 

Maybe the thing holding him back was the medication that he was taking. It did not allow his brain to work the way it did when he was in elementary school and even middle school before he started taking it. I had a list of rationalizations for why he wasn’t doing as well as he could. I was making excuses in my mind of why he wasn't able to live up to my dreams for him.  It had to be some outside factor that was out of his control and mine. 

Up until the 8th grade, he had no need for extra help from special education.  Sure, he needed a few accommodations …but nothing like the level of help that was required to get him through high school. 

In hindsight and in reality, did he end up needing the Adult Transition program? Absolutely! 
Did the transition out of the the high school environment make everything better? Absolutely not. It was just the beginning of a whole new set of issues. 

I did not allow my apprehension, fear of change or my dreams of something better for him, stop me from getting what he really needed. We enrolled in the transition program and he made slow but sure progress, rising from the first level of the program to the 2nd level (which provided less support) within a year's time.  

Effective parenting is not always about the dreams we have for our children. We have to do what needs to be done in order to take them to the next level of growth.  This was no different then when he was in the first grade and the school attempted to give him an ADHD diagnosis.  They’re just trying to label my child …put him in a box (I thought).  So, I had my own private testing by a neuropsychologist. The results were pointedly clear. He did indeed have ADHD, and that was only the beginning of the diagnoses he would collect over the years. 

Cut to two (2) years later after he started the Transition program, we go to look at our first group home. I’m at my wits end with his behaviors at home. He is disruptive, extremely argumentative and just generally a real pain in the ass to live with. Just as any 20 year-old, still living with his parents would be ...except like on steroids!  

He was doing so well at work, having held down a job for well over a year. He was making good progress in his transition program. I thought maybe if he got some distance from me, he could start making more progress towards independence and we could all lead a more peaceful life.

As I looked around this group home, I thought to myself, Is this the right situation for him? Is this what he really needs? 
Moving into a group home certainly was not my dream for my first born son.  I had a lot of fears.

  • How he would adjust to the change and the structure of the group home. 
  • How would he be able to get along with roommates? 
  • I was afraid that he was so unstable emotionally,  that he may end up having a complete breakdown. 

There had to be a better choice. 

I didn’t let on to him how I felt about it. After the tour of the home, I put on the optimistic face. I wanted him to make his own decision. I didn't think I was strong enough to make it myself.  He said yes at first. He even said, "Maybe this is God's plan for me."A few days later he became anxious about all of the change he would have to make. He then adamantly said, "NO! I’m not doing it!" (His favorite initial answer to everything we ask.) 

We went on for several more months of bad to worse behavior at home, while I looked into other much more expensive options. His behavior was screaming "something has got to change!" It was almost as if he was subconsciously begging for us to get it over with already and make him move out. 

I was unraveling, unable to think straight half of the time,  unable to eat the other half of the time. I wasn't sleeping well.  I was on edge, filled with anxiety, always waiting for the next bomb to drop. My heart rate stayed high. I was afraid to even check my blood pressure. I was falling apart. 

My husband was starting to lose it too. He became more and more involved in the day to day care of Red's life.  He tried to give me a break and started taking on more.  He began to see exactly what I had been going through for the past few years.  His own blood pressure climbed. We were both just exhausted. Everyone in the house was miserable. 

Finally, something broke. Behaviors reached a peak. The emotional unrest was beginning to effect our family's health and safety. We were forced to make some tough decisions.  

We started off with some major medication changes.  We started it over the summer and thanks to the imprecise nature of the so called science of psychiatry, it seemed like everything that could go wrong, went wrong. We're talking from behavior that was horrific to the stuff nightmares are made of. 

You know that feeling you get as a mother, something is way off? Follow that instinct! And don’t stop pushing until you get some results.  I kept pushing until he was seen by the right set of eyes. By that I mean, I finally met a psychiatrist that I didn't hate.  I just wish there were more like him in the world. 

Our results ended in a big reduction in meds, along with a huge reduction in his weight. He has completely changed his diet and is now hyper focused on exercise. If you had told me a year ago that he would change to a healthy lifestyle, I would have told you were out of your ever loving mind! The change in him that finally began to take place was nothing short of miraculous. His attitude did a complete 180 degree turn and he began to feel much more optimistic than I have ever seen him. 

I'm talking like night and day changes in his ability and willingness to cooperate. So much so, that it seems to good to be true. It's sad to say that I keep waiting for the other shoe to drop, but I'd be lying if I didn't admit this. When you've been living in a war zone that suddenly turns into a resort, you can't help but wonder where the land mines are hiding.  For now, I'm just trying to ride the wave. 

This past week, we started a trial run at a group home. Am I in love with it or even the idea of him being there? No, I am not. I will admit, I am a bit of a snob. I want nothing but the best for my children. Hence they are so freakin spoiled! This is coming from a girl who was raised in government subsidized housing, but our house was spic and span, comfortable and cozy.  We never had a hungry day and we were often the best dressed kids in school. (That is at least until I started buying my own clothes. My mother would say that I dressed like a gypsy. But whatever... I digress.)  

My dream for my son was for him to move out into an apartment or a dormitory. At the very least, a Transitional Living program for adults on the spectrum. I don't know who it is that can afford these astronomically, expensive programs like the ones that I found, but good Lord, they must be very well off to be able to afford costs anywhere from forty to one hundred thousand dollars per year! 

A group home was not a part of the dream, but it is what he needs right now.  We had to do what was best for our family,  even if this isn't what we dreamed of being able to provide for him.  

We are hopeful that this is a springboard for further independence.  I am praying that he will stay motivated to finally get a place of his own or at least with less support someday in the near future. 

We still have a few kinks to work out with the agency that runs the home. I am not all that impressed with the staff so far, but I know my standards are high. I'm sure they aren't used to parents who are involved and knowledgable about what they are supposed to provide. I am not the one to try skimping on.

We have seen him a number of times this week, while we are working out these kinks of transportation and making sure that he has the things that he needs. Another positive, is that the place is very close to us, so we can see him and ensure that his needs are being met.

For now,  it's not the ideal situation but it is so much better than the life we were living just a few weeks ago. I am just trying to enjoy the peace in my home. I can close my door at night and not worry about anyone bursting through it with an immediate need. Blue is  more self-sufficient and he knows when it's time to leave mom alone. I am off duty at 9 p.m. Don't ask me for anything unless you're dying. 

The really good news is that Red is feeling better, physically and mentally. He is optimistic about his future for the first time in years.  It has only been a week so far, but when he comes home to visit, we can actually enjoy his company. 


Now that Red is out of the house ...I'm actually trying to read a real book! I'm reading Elizabeth Gilbert's, "Big Magic." So far I love it! Click here to check it out: 

Thursday, October 8, 2015

A Sustainable Life

Early morning,  before the crack of dawn...
I think I hear "Mom!" being screamed from another room.
Afterward, I lay in bed awake —perturbed that my sleep has been interrupted.
My mind starts rambling... 
How am I going to do this?
We can’t go on like this.
This is not a sustainable life. 

I am by definition a nurturer, a fixer, an easer of pain for those I love especially,  my children.  This is who I have become in the past 20 years and probably, some years before that with my siblings and even my parents. Even though they are all older, I have always been the one that they count on to help facilitate communication.
I keep the family together when they start to lose touch with one another.

With my immediate family, my husband, children and my mother, my role is the same —the facilitator, referee, coordinator and problem solver.

But no one can be everything to everyone. 
This is not a sustainable life.

When it comes to my children, intellectually, I know that I am operating out of fear, anxiety and quite frankly, intimidation. 
I know that what I’m doing, is trying to cushion Red's fall. 
I’m trying to silence the explosion.   
The bough is hanging by a thin thread. 
It’s about to break.
This is not a sustainable life.

My husband and I are stressed beyond recognition.
He walked into his doctor's office the other day. She said, "What the hell happened to you?"
We have the same doctor.
I've probably been subconsciously avoiding her for the past few months because I know she will say the same thing to me.  
All of this haunts me. 
This is not a sustainable life.

I've said this before. I know, I’m like the mother bird who wants to push my little fledgling out of the nest. 
“You can fly! I know you can do it!” 
But as soon as he starts plummeting towards the earth, I fly in to scoop him up, never giving him the chance to figure it out for himself.
This is not a sustainable life.

He’s an adult. 
He’s twice my size. 
I literally can not cushion his fall.
He will smash me! 
In an attempt to save him, I will kill myself!
I will disappear. 
As it is, there are only traces of my former self.  
I have allowed one of my children to absorb about sixty to seventy percent of my energy. 
That leaves about thirty to forty percent for everything and everyone else, including myself.  
This is not a sustainable life.

I can not breathe.  
I can not exhale. 
Most days I can feel the vibration of my heart beating, like a bass drum. 
I attempt deep breaths, trying to slow my heart rate. The fix is only momentary.
I’m living in PTSD mode. 
Always preparing for the next explosion.
This is not a sustainable life.

I would like to give photo credit
however, this was sent to me by a friend.
Arthur Unknown
I have to think about the rest of my family. 
I must think of our health and safety.
I keep things moving along mostly on automatic pilot. 
I try to keep my sense of humor.
I attempt to find some semblance of enjoyment in my life.
I color in one of my adult coloring books while feeling a mixture of guilt and self-loathing because I'm not writing.
The truth is most of the time, I can't string two thoughts together, much less a full story.
This is not a sustainable life.
Colored by me!
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In quiet moments, the enormity of it all overwhelms me. 
It’s crushing me.
I’m drowning.
I remind myself that I've done everything I know how to do.
I have pulled out every big gun in my arsenal.
I’ve tried.
I’m not a doctor, a pharmacist or a therapist. 
I have played all of these roles in real life, for a long time.
This is not a sustainable life.

He fights everything and everyone who tries to help him.
I realize that his behaviors are mostly based in fear, anxiety and his autistic, different way of thinking. 
That doesn’t change what it’s doing to the rest of us, physically and emotionally.
This is not a sustainable life. 

In a phone call the other day I told him, “It's time for you to change your own life. I can not make it happen for you anymore than I could make you lose weight.
(Recently, he made that decision for himself and he’s lost a considerable amount.)   
I told him, “When you finally decided to do it, YOU made it happen. I have faith that you will be able to do that with the rest of your life.” 

Every experience in life changes who you are. 
I’m going to have to believe that in the end,  all of us will be changed for the better.
All of us will be stronger. 
In the end this will be a long, incredibly painful, success story, with a few cautionary tales weaved in between. 
It is not a story that I can contrive or create like the novelist I once wanted to be. 
This story has to play itself out, one long, excruciating chapter at a time. 
I have to let go and let God write this script.
All this time, I’ve been thinking God needed my help.
He doesn’t.
He’s in charge.
Until this story reaches it's climax, God will sustain me.

Click here to order your own adult coloring book. Here are two of my favorites: