Sunday, February 25, 2018

The Whispers

I confess. I’ve been holding back on my writing here in this medium. The worst thing you can do as a writer is caring what the perception will be if you write your truth. Okay, maybe not the worst. The worst is not writing at all, but it’s certainly not good to worry about the outcome or what goes on inside someone else's head when they are reading your words.

When writing you have to stay true to your purpose. Keep writing (every day the experts say). I write as often as I  can. I write first and foremost for my sanity. I try to keep in mind exactly who I am writing for. I don’t mean the lurkers who are making their own assessments of what they think they are reading in-between the lines. The people I want to touch by my writing, my true audience, are mostly women like me. Women who are tired, who are struggling, who sometimes feel alone in a crowded room, or in a home full of responsibility, children, a husband and perhaps even parent they are caring for. 

Some of us can't write our truth, we don't have the time or the energy. Many of us get enough judgment from our extended family, as it is because of our children's behavior and our family's ignorance about autism. Some of us may not see our reality reflected in society. There are a lot of women out there who project as if they have it all together, especially on social media. Look at my perfect life! Chile, please! I know you got lots of dirt hidden behind that smile.

The women I write for may not be able to express their feelings aloud but they are feeling all of the feelings, wanting to scream, curse, cry or laugh at themselves. Maybe you are doing all of these things but you still somehow feel alone. Perhaps you secretly feel like your feelings are wrong. Well, fuck that! You have a right to feel your truth. I'm just the silly girl, that actually writes mine on the internet. 

Most of my writing has been about the boys. They are a major focal point and a big part of my purpose in life. However, I feel like I’m about to burst from all of the feelings that have been swimming around in my head and throughout my body over the past few weeks about myself. What about me? I have my own thoughts, feelings, yearnings. With Kendal gone and the house quieter, I have more time to think about myself. What do I want? How do I feel? I am tired of being the beck and call girl for these boys. They think I'm just sitting idle, waiting to do the next thing for them.

Kendal, my 22-year-old had the nerve to say one day while sitting on the couch in my bedroom, "Why are you writing and not paying attention to me? Your writing is just a hobby. It's not like you're getting paid or anything." Mother f*#%er what I decide to do with my time is MY choice and MY business! They think I owe them my undivided attention whenever they want it. Um! No. You're a grown-ass-man. That ship has sailed. 

I can only tell my therapist so much in the less than one hour we have together each week. I feel like I should live with her part-time. I don’t see my friends often and somehow I stopped having telephone conversations after so many years of never having enough peace or quiet to talk on the phone. And if I did have time, I was usually all talked out from the incessant talking, arguing and debating from my children.

The family that I see more often than I would like does not understand my innermost thoughts and feelings, nor do they care to. They are all too busy with their own agenda. And more importantly, they are too busy with what they want and need from me.

My husband is a source of refuge for me. He is my rock. But of course, he is highly focused on his job, and he's a dude. We are very different in our thinking and mindset. He gets me more than most people, but he doesn't totally get me. He thinks I'm cooky. I am cooky but...whatever. 

I am going through some kind of change-of-life, midlife, soon to be empty nest, but not-soon-enough-thing. I’m probably going through some kind of peri-menopausal, hormonal mumbo-jumbo as well. I am somewhere in the mix of letting go of my supposed-to-be young-adult children. Yet, because of their autism, they still want me to do much more for them than I want to do. 

I read a quote the other day that said, “I never fit inside a box; no matter how big it is.” I was like damn, that’s it. I am inside of a box that I don’t fit in anymore, that is if I ever did. I allowed myself to be put into this box. I’ve been in it a long time. Parts of this box are cozy, comfortable and familiar. Why leave? But another part of me is dying to get out. Only, a couple of problems… 
  1. I don’t know where exactly to begin. 
  2. I still have obligations inside the box, and those shackles hold me back from my next destination. 
What is that syndrome called when you start getting comfortable with being held captive? Stockholm Syndrome —It usually happens when your capturer has agreed to let you live instead of killing you. You start to appreciate and sympathize with them. You don't even try to escape anymore. Well, my capturers have not threatened to kill me, not intentionally anyway, but they nearly have.  

My current situation of being everyone’s everything, having little left over for my own personal happiness and fulfillment, as much as I may hate it, it is familiar. It’s what I know. It's who I've been. It’s what I’ve done for a long time. I am used to being the on-call therapist, fire- extinguisher, problem solver.

Leaving this uncomfortable comfort-zone and moving forward into the next phase of life is scary. What if I'm not good at anything else? What if most of my brain cells have already died? For a person with anxiety, it can feel overwhelming —insurmountable. 

Being a wife, mother, caregiver, and autism advocate is a part of my destiny. However life has been whispering for a while now, there is something more for me to do. Part of that is really living for myself and enjoying life, doing things that I want to do on a more regular basis. The longer I sit inside of this box, this house, my life in Texas, putting MY life behind everyone else's, the more stir crazy I will be.

I will have no one else to blame except for myself.

Who holds the biggest stake in my life? I do. Change is therefore up to me.

I went through a pretty huge summer depression. Now I’m going through a too many cloudy, cold, gray days, winter sadness. I take medication for anxiety and depression, but medication only does so much. There is still enough sadness that lingers, which tells me there is more I need to do improve my own mental health.

There are changes that I need to make. The underlying issues of being unfulfilled, wanting more, wanting an escape from this box will keep nudging me until I do something different. It’s hideous to believe that life will improve if I keep doing the same thing. 

One of those things is as simple as regular self-care: 
  • Make myself leave the house even on those cloudy, gray days to go for a walk or to yoga. I need regular exercise 
  • Make my OWN doctor's appointments. Right now I am overdue for my annual exam. My excuse? My doctor moved to California over a year ago. I should have gone with her. 
  • Indulge in things that I enjoy more regularly -like painting, visiting with friends, being more social and traveling.  
  • Figure out my true purpose. Who do I want to help in the next phase of my life?  
I know I’m supposed to put myself on the list first. I’ll do it for a while and then shit will hit the fan with one of the boys and I get off track. I am so used to life coming at me hard from different directions. I have forgotten how to take care of myself.

A few years ago I went to hear Oprah speak at a women’s empowerment event. I remember her saying "When there is something that you need to change in your life, the whispers come at you first. Listen to the whispers. If you don’t do anything about it, they get louder like a little thump on the head or a pebble. If you still don’t listen, it gets even louder until it’s like a brick upside your head, which is a crisis. If you still are not listening, the brick becomes a disaster."

I haven’t been paying attention. I’ve been ignoring the whispers. Sometimes I listen and try to find a way to pacify them for a while. It’s like putting on a band-aid when I need stitches. 

I have loved taking care of my children. Technically, one of them is still somewhat of a child. He is eighteen, but in many ways, he is actually a few years younger. He has always been the most independent one. So for him to suddenly start walking backward has caught me off guard. I was not expecting this. Part of me may even be feeling a little resentful that he still needs me so much. He yanks my chain. He manipulates me and I let him. He pulls me into areas of his life, where I have no business. He pulls me in and then rejects me in the next moment. I know, I have to draw the line in permanent marker so that he can’t come back and erase it. I had to do the same with his brother and as a result, we have progress. 

The whispers have turned into pebbles, thumps upside the head. The next thing will be the bricks and I really don’t like pain. So I better start listening. 

I hope that you, my tribe, will learn to make self-care a priority. Pay attention to the whispers that are telling you it’s time for you to do something different. No one cares about your happiness and fulfillment as much as you do. 

Tuesday, February 13, 2018

What A Difference Adult Transition Makes

Here I sit in this dreary conference room in the Special Education office at our high school. This is still considered Kendal’s home campus, although he hasn't attended classes here in four years. He meets his Adult Transition team at various places in the community. However, all official meetings are still held here. 

This is his final annual goal planning meeting for the Adult Transition program. We are planning his exit and graduation.  I’m somewhere between here and existing in a state of disbelief.

Who is this young man sitting across from me sporting a beard --all calm, cool and collected? 

Every once in a while he flashes that million-dollar-smile. I don’t think he knows it’s worth a million. If he did, surely he would use it more often.  

I can't believe this is my son. My babies are all grown-ass-men. Kendal is almost an entirely different person from the teenager who attended high school here. 

In his high school days, he was a bundle of depression, anxiety, and defiance. I was seriously worried about his future. Self-motivation was non-existent. Getting him to school each day was like pulling teeth. I reached the point where I didn't bother with trying to get him to do homework at home. It took so much energy just for him to make it through the entire school day. 

When he roamed the hallways of this high school, he wore what seemed like a permanent scowl on his face to go along with matching clinched fists.  He was a big, angry-looking black dude, in a sea of mostly white and Hispanic students. Yet, he wondered why everyone wasn’t lining up to be his friend. 

How is this kid going to survive in the world as a black man with so much anger? The world isn’t going to care about his diagnosis. When he's out in the world, officers won’t stop to understand his autism before they shoot.

He had absolutely zero respect for authority. One day fed up with his high school existence, he walked into the Vice Principal’s office and proceeded to curse him out. Who does that? Let me tell you, that was a fun phone call to receive. I can still feel my heart fluttering, head throbbing and my stomach turning, just thinking about it.

What a difference a few years and an Adult Transition program makes? He’s a different person now —one hundred pounds lighter, employed and more confident than I ever could have imagined. 

I’m so glad I didn’t snub this program like I wanted to at first. When Kendal was in elementary school, he had been an A student. I believed that all of that intelligence was buried underneath his negative attitude.  I thought that his depression and hyper-focus on how much he didn't fit in, was mostly what was holding him back. I thought he just needed to get out of the high school environment. I rationalized. He would be fine once he got out into the real world. It turns out that it wasn't that simple.

I never turned down any services offered to him because of my pride or because I didn’t want him to have a specific label. It was an internal battle for sure, but I always wanted him to have all of the help possible. I wanted him operating with every advantage, more than I wanted the dream of him being the perfect child that had always imagined having.  

So many kids sit in classrooms with no diagnosis, with parents who don’t know or care to get them the help that they need. They can’t figure out why they can’t focus. They are wondering why they can't the get the work done like the rest of their peers? Why are they always in trouble? 

There are also so many parents who are trying to get special education services, and they are being denied —being told they’re their child is not disabled enough for an I.E.P.

We were lucky. My boys were never in danger of not getting what they needed. I was THAT mom with the big mouth, who just wouldn’t go away. It was my job to make sure that they were understood. I made sure that both their gifts and their deficits were clearly visible and attended to. 

It all paid off in the end. Every phone call from teachers and staff. Every meeting and conference. Every time I sat down with an administrator who tried to discipline them for things that were a direct result of their disability. Every headache and every accelerated heart-rate when the school’s name was on my caller I.D.  It felt like a lifetime of work, and I'm still exhausted from it, but here we are today. 

This is it. The finally.  It doesn’t seem that long ago that we were meeting to get services for pre-school.  Kendal was 3-years-old —a toddler with a speech delay. He talked plenty —most people just didn’t think it was English that he was speaking. Instinctively, I always knew what he meant and what he wanted. We are still connected by that umbilical cord. Words were not necessary for our communication.  

During his high-school-years, we sat right here in this room in countless meetings where he was utterly oppositional and combative.  One time he told us his biggest goal was to sit in the cafeteria during lunch so that he could to go talk to the cheerleaders and popular girls. Another time his goal was to be popular. The popular kids wanted nothing to do with him. Who cares if he made them uncomfortable? That was their hang up, as far as he was concerned. 
Here in this dingy room with supposed-to-be-white walls, and no artwork, I came up with the creative solutions to help him feel less isolated and alone in those tortuous, high-school days. Everyone in the room, Special Education staff, teachers and administrators supposedly had his best interest at heart. However, no one in that room represented him and his feelings one-hundred percent the way I did as his mother and advocate. I literally felt every inch of his pain and frustration. His pain was my headache and my heartache. 
The administration and some of the staff seemed more concerned with protecting the regular students who roamed the halls freely. My son, made those students feel uncomfortable.  He looked angry because he felt left out. No one except for Kendal and me was thinking about exactly how all of the pain, isolation, and rejection of his high school experience was affecting him and his self-worth. 

I look back on my high-school years with fondness. It was one of the best times of my life. I had friends, first loves, dances and football games. It hurt me that for my son high- school was mostly a traumatic experience. There were no dances or football games. Even the Friday afternoon pep rallies were an exercise in sensory overstimulation that caused meltdowns and negative behaviors. 

I remember watching him swim upstream when everyone else was heading down. He looked so lost and alone in those corridors. I would come in for a meeting, but before leaving I would stalk him from a distance. I wanted to see for myself what was going on with him and sometimes it was painful to watch. 

I sat here in this conference room when I decided to have him volunteer in the class for those more severely affected by autism and other disabilities.  He could be helpful to them. That would be good for his self-esteem. Those kids loved to see him coming. It was an opportunity for him to feel valued in an environment where he otherwise felt like he wasn’t good enough.

The others in the room said, “We want to keep Kendal safe.” Safe from acting out with other students. Safe from making threats of self-harm would make people feel uncomfortable. At the same time, they were isolating him and taking away his rights to walk the hallways like every other student. We implemented my idea, and it helped him tremendously.

Here we are today setting up the final plans for him to exit Adult-Transition (otherwise known as Eighteen Plus Services) and move forward to the next phase of his life. The program has helped him stay employed for the past 4 years. He went from working 10-15 hours per week to now working 35 hours on two different jobs. He is never late for work and seldom misses a day.

He has worked on budgeting, shopping, cooking, creating his own social and recreational routines. Some of the things he has accomplished I don’t think I would have EVER been able to get him to do on my own. If the idea came from me, it was probably not a good one. 

He was willing to listen to the team of professionals that he worked with. He may have argued with them, but he eventually heard what they were saying and moved forward.  Whenever anyone introduces any new idea to Kendal, he has to vehemently disagree with it first. That good old oppositional defiance disorder is always at work. 

For these professionals, I know it wasn’t always fun to work with him. I am forever thankful for the strength and tenacity of the team that he worked with. Ms. G. his Transition teacher for these past two years has the heart of an angel. She always treated him with dignity and respect, which is why he knew she was on his side, even when he was acting like a complete jerk. He would not be nearly as far down the road to independence without her. 

Another vital piece of the puzzle for him was Person Centered Planning. The process was excruciating for years. The Transition Coordinator for our district (another Mrs. G.) facilitated his meetings for almost 8 years altogether. The best piece of this process was putting tons of celebrations down on paper with things he accomplished each month. It also helped him focus on creating and achieving goals. 

People who deal with depression have a hard time seeing their own progress, but it was always there in black and white. There was no denying his forward movement no matter how incremental. 

There were countless others in the village that led him to success, such as Ms. Carol, his Occupational Therapist. His Pastor was once a part of his team, Mr. Mc D. the teacher he volunteered for in high school. There were so many angels on his PCP and Transition team over the years. All had faith that he could do good things, even when I was not so sure. 

I have a special friend that we made through this blog. Paul has Aspergers himself. He once wrote an incredible guest post here. Paul always told me that the boys were going to do great things someday. I was so immersed in the muck, I didn’t understand why he thought that other than the fact that he used to be such a handful to his parents. Now he is a successful husband, father and business owner. I thought of Paul as we sat in this final meeting. Paul -I get it now.

The picture I had painted of Kendal's future was bleak. I wasn’t sure of anything.  What I did know was that I wasn’t giving up and I wouldn’t allow him to give up either. 

On May 16, 2018,  he will officially graduate from the Adult Transition Program and finally receive his very hard-earned high school diploma. 

At the end of the meeting, Kendal asked if he could go visit a few of his favorite teachers before we left the building. They were all happy to see him. They are amazed by his transformation, both the weight loss and his smooth, relaxed demeanor. He gave them a glimpse of his million-dollar-smile —something that they seldom got to see when he was a student here. 

He also wanted to pay a visit to his favorite Vice-Principal (you know…the one he cursed out years ago). They shook hands, hugged and smiled as men. Kendal looked so proud of himself. He knows he has come a long way. 

He still calls me every day with questions and concerns about the next steps of his life. The anxiety abides within him, but it doesn’t keep him from moving forward. 

More big changes are coming. I’m afraid to put them down on paper until things actually happen.
I won’t bore you with all of my worries about his next chapter.  What I know for sure, is that he will continue to grow despite my fears. 

Kendal and the professionals on his team who made it all happen...

Thursday, February 1, 2018

Leave me Alone, but Not Like That

My dear son, 

Our relationship is pretty excruciating these days. You hate to see me coming. I might nag you to do something that’s not on your agenda of nothingness. You're chillin. I know. 

I can’t do enough for you and yet you say, “All you want is to be left alone.”  

Well, all I want is to leave you alone. I’m ready get my life back, if I even know what that looks like anymore. Maybe I would like to have a career that grants me some kind of validation that I am more than just a good mom. I’m constantly fighting the voices in this world, including the one inside my head that says, “Raising children is not a career. You’re not an independent woman you don’t bring home a paycheck.” 

Most of those voices have no idea how much work and energy is involved in raising special needs children, taking care of a parent with a husband who travels and is buried in work all the time. We live in a state where we have no family. Just maintaining our mental health is a piece of work within itself. I know the voices are wrong, but they're still there and I fight them all-of-the-time. 

I have given you and your brothers 24 years of my life. For as long as you have been alive, I have put you first. 

(By the way, I told your brother and now I’m telling you, don’t think for one minute that whoever you decide to marry, will do half of the things I’ve done for you or your children. Most women will not give up so much to be everything to their kids.) I was crazy to do it! 

I set the standard pretty high, which is why you all still expect so much from me. You and Kendal still think I’m your beck and call girl --at your service 24 hours a day. Well ...I quit that gig a few years ago but apparently, y'all didn't get the memo. 

You want to be left alone, but when I leave you alone, you call and text me and the texts are not pleasant.  A few weeks ago, I’m sitting in a cafe having a glass of wine, writing. The wine was especially delicious probably because it was paired with freedom from doing things for other people. I was alone and in heaven until my blood pressure shot up after the unpleasantries of your messages. 

You have said things like you don’t appreciate me “being selfish” and leaving. What? So I have no right to do anything for myself? 

You are a legal adult. You love to be independent and disappear by yourself to go write, draw and do homework in coffee-houses all over town --to go hang out with your friends. Well, guess what? I’m human. I need to do things for myself too. I need my writing time. I need the occasional night out or a weekend with my girlfriends. I need to travel —to go see my friends and family. Most of them don’t live here. You’re not the only one who gets lonely. I have feelings too. 

I need to maintain my marriage and date my husband. Have you noticed that many marriages don’t last as long as ours has? We have had some strenuous times while raising you boys, but we stayed together. Mostly because we were too busy with one crisis to another, to get a divorce. 

It is time for me to leave you more often. Just because I leave you for a few days or a few hours does not mean that I am abandoning you. Ultimately, I will always be here for you, just not every second of every day.  

I understand you’re going through a lot of transitions right now. You’re adjusting to adulthood and community college. You’re sad. You miss your friends. 

Traditionally, this is where parents and children part ways. The young adult goes away to college, to the military, a gap year in Europe or wherever the hell you can go to escape the bondage of having parents. Most soon to be 19 year-olds are out in the world, bungling their way through life and making mistakes without the careful observation of their parents. 

Unfortunately, that typical scenario is not where we find ourselves. Thanks to the wonderful challenges that autism brings, we are a little behind the curve. You’re not ready to move away from us completely.  There are still some skills of independent life that you need to acquire.

Being the advanced student that you are, unfortunately means that we were not focused as heavily on independent living skills while you were in high school. Sure, we worked on cooking, chores, laundry and basic self-care. But we didn’t so much work on budgeting and time management. Frankly, I don’t think the high school fully prepared you with the executive functioning skills that you would need for college. 

I get it. You don’t want to be told what to do. My mom lives with me. I don’t want her telling me what to do. As much as you don’t want to be told, I don’t want to be the one telling you. I want you to handle your business on your own. I want you to be out in the world making your own decisions. I want you to be able to decide when you need to get up for class and when you should start planning and executing that paper for your English class. 

I want you to plan your meals and when decide when you want to eat out. I want you to manage your money. It would be nice if you had your own money. It would be nice if you had a schedule for your laundry and for the rest of your life. I want NOTHING to do with any of that. Yet, I am consistently pulled into the intricacies of your life when you are not handling everything. Like when you wait until the last minute to work on a paper for school.  When the shit hits the fan, and you're panicking, I become fully enthralled in the fallout as if everything is my fault.  

School is 100% your responsibility, as it always has been. When you go to work, you can't call me to solve your issues there. You will have to find other resources. College is practice for that. You have to collaborate with professors, counselors and other students to come up with solutions.  

We live cooperatively as a family. You still need me in a lot of ways (mostly for money and rides). We have to consider each other when our lives are still intertwined. This in a nutshell is our conflict. It’s big. It’s messy and there are no quick and easy answers. We are stumbling all over each other with our righteous resentment for the roles we find ourselves in. 

What you may not realize is that I’m going through a transition too. I’m in a period of  letting go of the job I’ve been doing for your entire life.  

Taking care of you, being your second voice, your advocate, your cook, your maid and your life manager has been my job. We are transitioning away from that, with you taking on more responsibility for yourself.

The thing is, I know you can do this! You’ve always been an independent, conscientious student. Now we just need to meld that together with some adult-living skills --blending the responsibilities of your daily life with school. For some reason the thought of that seems to be freaking you out. But I know you can do this!  

In order for you to grow into the man that I know you will be, I have to let go of some things that have been a part of me for a very long time. I have to let go of control. I can’t walk in your shoes. I can’t cocoon you from the ugly, adult world. You are half-way in while your other foot is still in the door of the home you share your parents. 

I’m straddling the line between treating you like an adult when in some ways you are still a like a child. You still have needs to be met. You are struggling wanting independence not being quite ready to let go of your childhood.  I have been your lifelong caretaker. 

You have actually said, “I hate this dynamic.” I can totally understand that. I’m not in love with it either. I don’t want to be micromanaging your life any more than you want to be micromanaged. We’re in a transition. We are both learning and we are both letting go. 

This transition stage is a mixed bag of nuts (heavy on the nuts) for both of us.  

We will get through this. I hope that we can try to be compassionate and patient for what each of us is going through. We have to work together to treat each other with dignity and respect. Otherwise, someone is going to get hurt …and it ain’t me! 

When we get it all figured out, you will be an awesome, adult, human being who will conquer the world. The mountain feels insurmountable now, but the only way to climb it is one step at a time. I’m with you. I'm behind you …just from a little more of a distance. 

I would be doing you a disservice if I didn’t push you to leave the safety of this nest. I love you too much to treat you like a baby. I have to treat you like the man that you want to be.  A man who is out contributing to the world —changing things for the better. I can’t wait to see you soar. 



This is Us
Me always joking around and you so serious.