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Tuesday, March 6, 2018

Autism is Real

Autism is real. It ebbs and flows. It may evolve, but it doesn’t go away no matter the age or level of maturity. Thankfully, we continue to make progress. But then one-day autism shows up and slaps you in the face as if to say,  I'm still here bitches!

Kendal was home Friday morning for a few hours before work.  Autism was on and poppin’ —like, Hello! Don't forget about me!  He was home because his phone was broken and of course, he wanted it fixed or replaced like, NOW! Dad and I are apparently, the fixers of all things.

His anxiety is also high because there are some big changes coming his way. His transition program is ending soon and there is a huge possibility that he will be moving out of the group home. I am hesitant to talk about this (in detail) until it actually happens. There are countless loose ends to be tied up before it becomes a reality. I am excited, nervous and apprehensive, all at once.

His fixation right now is his future. He’s thinking big picture. Where will I end up in five to ten years? Of course, the possibilities are endless.  His brain is working overtime thinking about each and every possible “what if?”

Now as fixations go, this is a pretty good one to have. At least it’s not girls or obsessing about making his body even more perfect than it is.

However, by the time he left my house on Friday afternoon, I couldn’t drive him to work. The constant talking, the repeating, the demands nerves were shot. I literally could not think straight. I was willing to pay for an Uber rather than listen to the same dialog within the confines of my car.

Since his phone is on its last leg and it's difficult to use, when he got off work that evening, he called to ask me to either pick him up or help him coordinate an Uber ride. He wanted to go to a social event with his church. I had had enough of him for the day so again, I opt for Uber.

He calls me from the business phone at work to say he’s ready. I call the Uber.  The Uber is waiting for him when he gets off. But somehow, he doesn't get outside in time and the driver cancels the ride. After a couple of minutes, they think you’re a no-show, so they charge you a five-dollar cancellation fee and they leave.

I'm watching this whole transaction happen on my phone, but I can't get in touch with him because again, dead phone.

He gets outside of work and can’t find the Uber. Instead of going back inside of work to call me again, he wanders down the parking lot and ends up at Arby's.  Not really knowing what to do finally, he asks a stranger can he please call me from her phone. She calls me for him. “Mam, I have your son Kendal here and he’s lost.” This is nearly 30 minutes later. I’m thinking, lost? How did he get lost?" The boy usually Uberss all over town. The difference here is that he doesn't have a working phone.

The whole time I’m sitting here knowing that the Uber has taken off. I’m wondering what happened to him? I’m thinking, maybe he caught a ride with someone from work, but he can’t call me because the phone is dead. NO. That was not the case. He was wandering around for thirty minutes trying to figure out what to do. Autism.

Long story short, I end up having to stop what I’m doing (eating dinner and about to pull out my paints and canvas) to go pick him up because he’s pretty much panicking. By the time I get there, he is livid! It’s all my fault, of course! He’s actually just totally frustrated with the situation and anxious to get to his event, but there must be someone to blame. As always, I get that prize. I'm thinking, I should be the one who is yelling. I should be at home drinking wine! 

I get him to calm down. I tell him my car will not move if there is yelling inside of it --a lesson I've learned over the years. So he gives me the address to the event.  Off we go. I'm driving blindly. Well, I have the navigation, but I really have no idea where I'm going, which makes me nervous.

Once we make the turn off the main road, I can barely see.  It’s a dark, winding canyon,  and I mean pitch black. The navigation lady is talking.  Kendal is talking. I’m like, “Dude! do you want me to find this place or not? Shut up!” I’m highly frustrated at this point. Remember, I should be at home drinking wine and painting. Instead, I’m trying to hear the navigation lady and watch out for wild deer who are probably roaming the hills.

We finally arrive at the gated community and he says, “There’s a code. Do you have the code?”
“How in the hell would I have the code!? I don’t know these people. Don’t you have the code?”
“No," he says and stares at me blankly, like --now what are we going to do?

I’m thinking,  it’s a really good thing that he’s not in an Uber. Imagine, he gets the driver all the way up into this community and he has no access to the gate. He would be angry and disappointed. They would probably have to drive away and he would not make it to the event. The Uber driver would probably think he's nuts.

So there we sit at the gate. Hmm. What to do? A car pulls behind me. I make a quick u-turn to move out of the way. When I see the driver going in, I floor the gas and follow them before the gate closes.  I may or may not have burned rubber.

Kendal’s in the back seat. “What are you doing Mom? Are we going to get arrested? You just broke into this neighborhood,” he keeps asking over and over as I continue to try to listen to the navigation lady.

“No! We’re not going to get arrested! Now be quiet so I can find this damn place!” At least I hope we're not going to get arrested. I start looking around and realize this neighborhood is exclusive, fancy, obviously designed for the very wealthy. The houses are huge, all stucco, with Spanish tile roofs. The streets have these little turnabouts like they have in France. There are even cobblestones in some parts of the street. They have their own special street lights, which are so dim that I can hardly see where I'm going. We are a bit out of place. I just burned rubber and snuck in here. He has an address but I doubt he knows the name of the homeowner. All he knows for sure is that “someone from church” is hosting the event.

If my nerves had not been so fried, this would have been hilarious. Me driving in the dark, trying to find a house that I’ve never been to. The neighborhood is not well lit, at all. I can barely see the names of the streets. I can’t make out any addresses. It’s not your normal, every day, Austin subdivision.

In fact, I’m thinking —I had no idea this kind of affluence existed here in Austin. This sub-division is so exclusive, I bet there are no black people that live in here. Black people probably don’t even know this place exists. Hell! I didn’t know until tonight. They've been hiding an entire neighborhood up in these hills and poor people know nothing about. Are we going to get arrested? Did I damage any property when I burned rubber on that U-turn? 

Finally, we find the house, and not because the address was obvious, but because Kendal kind of recognized the house. Turns out he had been here once before. Wow! Really? Thanks for telling me. You’ve been here before, but you didn’t think to write down the code to get into the gate? Yeah. Autism. 

He gets out of the car. I am praying that this is actually the house and that he’s not walking into a total stranger’s home. I could see the headline, “Black man, carrying a large gym-bag is shot entering white folks home in exclusive neighborhood in Austin.” 

Once he gets inside, I take a deep breath and exhale. Then I notice that he left their front gate open because of course, and there is a little dog roaming the front yard. I get out of my car and closed the gate. Yeah. Autism.

As I’m driving home, I’m thinking to myself, how did I survive years of this and his behavior was even worse? In his teen years, there would have been no cooling down of the yelling when I was trying to drive. I would have had to pull-over and threaten to take him home.

He has matured a lot since then. However, autism and ADHD and are still real and I am a brain-fried survivor.
Me at the beach in California
-my sacred place 

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.

Wednesday, January 17, 2018

Finding A Girlfriend

“Why aren’t girls attracted to me?”

“Why can’t I find a girlfriend?”

There isn’t a week, probably a day, that goes by when one or both of the boys don't ask me these questions.

What I hear when they ask is...

What’s wrong with me? 
Why don't people accept me?
I just want love and affection like everybody else. 
I’m a nice guy. 
Why does it look so easy for everyone else?
I'm lonely.
Am I ever going to be happy? 

The truth is finding love isn’t easy for everyone else. It only looks easy from the outside looking in.  Especially, on social media where the boys are constantly looking in one form or another.

Kendal, my 22-year-old son was smart enough to shut down his Facebook recently. I don’t know if it will last, but I’m happy and proud that he made that decision for himself. Every day being overwhelmed by images of the things you feel like you don't have in your life, is a trigger for depression.

Blue also shut down his Facebook, but he's still on Twitter and Instagram.

For Blue, it's not just about the girls. It's about friends. It's transition from high school to community college. It's friends who have disappeared. Support systems lost. Teachers he talked to every day. There were so many teachers who supported him. He talked with them before, during and after school. Teachers always understood him more than most peers. He is beyond his age in maturity and the things in the world that he thinks and wants to talk about. He thrives on being social.

In reality, relationships are so fucking complicated.  Love can be the best thing ever.  It can also be awful when it falls apart. It can make you feel high and then turn around and make you completely crazy, unravel you, make you more nuts than you already are. (I'm totally not talking about myself here.)  If you don’t have the maturity to handle the emotions, love can unglue you.

My dear sons, I know you think you want love, but maybe you don’t. You have enough issues figuring out your transition into adult life. Women will make you lose focus. You will feel good for a while and then you could end up feeling god-awful. Like underneath the table, hiding from the world, awful.  Like going into the mental-hospital-awful. Or possibly sending your mother-to-the-mental-health-hospital-awful.

You really can’t afford to completely fall apart. I don't think I have the strength to watch you fall apart, again. So maybe it’s better you find love when you’re ready to handle it. You don’t want to hear that. No one wants to hear that. It's like saying to a diabetic, "No candy, cookies or cake for you!

Kendal has had a couple of mostly benign relationships. He gets upset when things don’t work out, but he has definitely learned from each experience. He has actually been the one to break it off when he realizes that he isn't getting what he wants out of the relationship anymore. He doesn’t fall apart completely, only slightly.  Of course, that could be attributed to the fact that he hasn’t really been deeply in love. He's has had deep, infatuation with... Oh-my-God! I actually have a girlfriend! I am finally validated in this world! 

At this point, he is confused because he has worked so hard on losing weight (100 pounds plus) and has only had one brief relationship since then. He doesn’t realize that a good body and a nice smile do not “entitle” you to a relationship. The world owes him nothing in the love department. Plenty of people are alone for years and maybe, they’re better off.

He has worked so hard on sculpting his body. He has a killer smile (when he uses it). I'm sure he wonders, why aren’t the girls just flocking to me?

If I must say so myself, Kendal is good looking and he knows it.
Blue is also quite handsome, but he has no idea.
Kendal is aware that most men in our family typically have no problem finding women (i.e. his older brother --quite the ladies man).
He's just as handsome, so why is he alone?
It a valid thought. There is no answer though. That doesn't keep him from looking for the magic formula.
Why can't someone tell him?
More specifically, why can't I tell him?
I'm supposed to have all of the answers to life's questions.

I don't think either of them realizes that there are many complexities to human relationships. I don’t think I have even touched the surface of teaching them these things. Is that even my job? I don't really know.

I don’t know if it’s even possible for me to teach either of them anything anymore. Most of their lessons will be learned through real-life experience. Mommy doesn’t have the magic touch anymore. In fact, I probably have the antithesis of magic —more like the jinx, the trigger, the person-who-makes- everything-worse (according to them). Yet they won't leave me alone.

Why can't I find a girlfriend? Here are some of my stock answers...

  • Stop looking. Love will find you when the time is right. They HATE this one, but it doesn't stop them from asking me over and over again. 
  • There's nothing wrong with you. There is something wrong with the wrong girls you have approached. 
  • You will find the right girl and when you do, you won’t have to turn flips or do tricks. You won't have to pretend to be someone else to get her. 
  • You won’t have to play games. She will love and appreciate the unique human-being that you are.
  • Work on yourself! Fill up your life. Move forward. Make progress. Make friends --just friends. They may introduce you to someone. 
  • Serve others in some capacity. Volunteer! You never know who you'll meet.
  • Get involved in groups of people who share mutual interests. Have you been to Is that still a thing?   
  • Dating advice on You-Tube and social media is complete bullshit. Don’t believe the hype. They don't even hear me when I say this. 
  • What applies to “most people” doesn’t apply to you. You are different --good different. You are authentic. You say what you mean. You are looking for genuine love. You probably hope for sex, but you will be totally upfront about that. And please wear a condom. In fact, wear two! 
  • Always smell good. Always be prepared to meet the love of your life. They think this one is absolutely ridiculous. 
I just hope whoever you eventually find, she will take care of your heart. I know you better take care of hers or you’ll have to answer to me.

I pray that if there is fallout, it won’t be so god-awful that you can't handle it (or I can't handle it).

In the meantime, go to college.  Keep working. Build a career. Figure out who you are. Fill up your life with friends and people who give you mutual respect.

I promise you, the rest of the world is not as shitty as high school.  It’s a tough place, but just keep swimming. You will find your tribe.

Your mother is just like Oprah. All of this I know for sure.
(Actually, that's complete bullshit, but I hope so anyway.) 

Friday, December 22, 2017

Dear Transition Team,

Look. I get it. Four years later —you’re sick of my son. He’s combative and
argumentative. He can be straight out rude when all you’re trying to do is help him.  He will argue with you the whole time that he's doing exactly what you're asking him to do, but it's still a time destroyer and a major energy drain.

Guess what?  Twenty-two-years-later, I’m sick of him too.

Don’t get me wrong. I am your biggest fan. I appreciate the work you have done with him. While he was no picnic, you have always had his best interests at heart. You have worked with him patiently, with love and kindness. You have carried him a long way from where he was at the age of 18 when he entered your program. A program by the way, that I thought he didn't need, but I let go of my ego and pride and did what was best for him. 

We all know that behavior is communication. Okay, I’ll admit some of his behavior is just pure asshatery. What can I say? He’s a dude. He’s 22 and full of testosterone. He hasn’t had a real girlfriend yet (if you know what I mean...wink wink).

However, most of his behavior is based on autism, lack of filter, fear, anxiety, and self-loathing.  His fear is based on the unknowns of exactly what the next chapter of his life will look like. Most of his anger is because of mood dysregulation. Also, he doesn’t really like himself. He doesn't even fully appreciate the gorgeous body he has sculpted and developed through weight-lifting and a healthy diet. The kid dropped 100 pounds and he still focuses on his problem areas and why he's just not good enough.

He is quite aware that he is different and has always been treated that way by many of his peers.  He has insecurities because things that are simple for others are quite difficult for him. He still deals with the trauma of his entire high-school experience.

I’m sure you know how much our experiences in middle and high school can affect us for the rest of our lives. I still remember the names they used to call me. I think I finally started to get over high- school in my forties. I finally realized exactly who I am, authentically. Screw those high-school bitches who were insecure and tried to make me feel the same.

Okay. You are tired of trying to help him. I’m tired of trying to help him. You’re tired of his entitled, unappreciative attitude. I’m sick of it too. You've had enough of his endless rants about why everything in this world sucks. I’m actually like, way beyond sick of it.

The difference between us? I don’t have the option of being done with him. There is no option of giving up. My time with him doesn’t expire at the end of this school year. I have a lifetime commitment here.

I pray every day that eventually he will meet the wonderful open-hearted woman of MY dreams who will love him and put up with his shit for the rest of her life. But based on his behavior right now, that seems like a long shot. For now, it’s me. I am his person. He has his father, his brothers and a few good friends, but I am the bank in which he deposits of all of his worst crap.

So recently your team came up with this job option for him that I didn’t feel was workable. Frankly, there were red flags all over it. You’ll have to forgive me for speaking up and saying, “No that’s not going to work.Actually, you don’t have to forgive me. That is my job.  
You see, I would be on the receiving in of the middle of the night phone calls when the shit hits the fan.  His father and me, we pay the legal bills, and the hospital bills when he falls apart and has a major meltdown.

According to what I read about this job and this particular moving company (Yes. I vetted them by doing my own research. Actually, my son did the same. Only he doesn't always make the best decisions and look at the whole picture. ) Money is his motivation. My motivation is his overall mental health. He has had friends who have worked for this company and they did not have anything pleasant thing to say about the experience.

Let's make a list of the red flags:
  • He would not know his schedule from day to day. (They call in the day before to see if they’re on the schedule).  For a person who thrives on routine and knowing what to expect, constant schedule changes would suck.
  • It's not exactly full-time but there "could be overtime" and yet there are no benefits such as paid time-off. How is this even legal?  
  • They can doc your pay if you break anything during a move. (He damn near broke his toe in the first weeks of his current job by dropping a door on it.)  Remember? Focusing is not his strong suit. 
  • There is also possible interstate travel.  Now I’ll admit at first I got excited about the opportunity for him to travel —far away from me, but then I woke up. I realized this dude can’t remember his phone charger to save his life! His phone is always dead. He thinks the best option when he leaves his phone charger somewhere is to go buy another one, even if buying another one, leaves him completely broke with no money for a ride to get home from work at 10 p.m. (the time for him to take his meds.) 
  •  This is a guy who impulsively spends money and rides across town to get something to eat, also spending his last dime. Managing his finances is a constant work in progress. 
The job you helped him find may be great for some young fellow with zero skills and strong muscles, who is desperate to earn quick, (not so easy) cash while being taken advantage of by a moving company that needs cheap labor. My son is NOT that person.

There are so many things that need to be taken into consideration before we throw a boy with autism, ADHD and mood disorder, into the fire of a job that is a pure set up for failure. He has two part-time jobs currently. Is either of them the ideal situation? No.  Sometimes they change or cut back his hours. But for the most part, these two jobs are working for him so far. And mind you …he has those two jobs because I insisted that he fill his time constructively.

I would love to see him in full-time employment and have him live on his own, but he is showing me in more ways than one lately, that he is not ready for all of that. He will get there but he’s not there. It’s quite frustrating and disappointing for all of us.

I felt a subtle insinuation from our recent text messages and e-mail threads, that you and frankly other professionals, who work with him think that maybe I am too “overprotective.”

"We just need to let him feel the “natural consequences of his actions. Let's just see what happens." Sink or swim. Throw him into the deep water. He's a man after all!

Well, he gets plenty of natural consequences. Trust me. However, as his mother, I can not and will not throw him into a situation that is not healthy for him if I can help it. He has enough of that in his life already.

I mean do you think I want him living in a group home? Hell no! I don’t. But it was a boundary issue for us and an excruciatingly tough decision that had to be made, both for my mental health and his. The experience of living there has been a cross between hell and life on earth, but he is growing despite the less than ideal environment. The staff and their program at the group home really suck eggs. They don't get paid well and you can tell by the job they do.

Fortunately, he knows how to speak up for himself and he has his father and me to continually advocate for him. God always seems to put other positive resources into his life, like you have been to him over the past several years. I can’t be all things to him that he needs. It really does take a village to raise a difficult child.  I will continue to be as much to him as I humanly can, until the time that I leave this earth. And at this rate, it may be sooner than later.

Meanwhile, I will continue working to maintain boundaries with my son.  I will continue to protect and nurture myself, while always trying to do what is best for both of my young adult children.

Have I mentioned that I have another high-maintenance son with a whole additional set of transition issues going on at the same time? My life is a real recipe for nut soup.

Yes. I want him to work.  He thrives in a work environment more than any other place. Yes. I want him to be as independent as humanly possible and not just sit around taking handouts from the government because let’s face it, they suck too.

You’re going to have to trust that I know what’s best for him, despite the deadline for your services. Luckily for you …you get to say goodbye to him in May.  I can’t lie. I wish there was a deadline when I could say goodbye or at least farewell, see you next year. I'm still praying for that angel to come into his life and take over.

I am confident that together we will figure out a path to get my son through his last few months with you.  We will set him up for the additional services and resources that he will need to get himself through to the next phase of his adult life.

Again, thanks from the bottom of my heart for all that you have done and continue to do for young adults with special needs in our community. Some things in life, just take longer than the designated time that you have to give them.

By the way, I have still have my insecure moments when I think I am doing this all wrong.  But I know deep inside, I am one hell of a mother. I stand by all of my decisions, all of my actions and inactions, my protecting, advocating, my stepping up and stepping back, drawing boundaries and sometimes having them crossed.

I am doing the best that I can for a very difficult young man who will always be my child. A lot of mothers would have just walked away by now.  Don’t think there are not days when I want to run screaming. But I’m still here and will be when you’re gone.



p.s. You can tell from this post how much I like the word suck. :) Feeling a lot of suckiness lately. 

Monday, November 13, 2017

Best Mom Ever

I may or may not have threatened to “murder” my son this week. Being the literal person with autism that he is, he may or may not have taken me seriously. 

It was one of those days that we’ve been having a lot of lately. A day where he is laying around like a slug, on a school morning and on into the afternoon --like he doesn’t have a care in the world. The world is zooming by on a Wednesday afternoon and he is completely unfazed. 

I have to leave to run an errand. So, I tell him to get ready.  I would drop him off on the college campus, while I'm headed in that direction. 

The errand is to meet his brother at the barbershop. I happen to owe him twenty-five dollars (another story).  His brother, (age 22) also has autism and takes medication. However, he has already gotten up and made himself breakfast; packed his lunch; volunteered at the Food Bank; gone to school, (transition class) to workout at the gym and then walked to the barbershop. All of this, while Blue has barely eaten breakfast.  Not that I’m comparing my children because you’re not supposed to do that. Everyone has their own journey. Blah. Blah. Blah! 

Thirty minutes later, I’m ready to leave. I go to his room to find him laying back in bed!  Not dressed. Not ready to go! It’s 1 o’clock in the mother fracken afternoon!

“What are you doing?”
“Well, I don’t have to be there until 3. So I just thought I’d take Uber.” 
“I’m offering you a free ride NOW! Get your ass up!” 

Generally speaking, I am a non-violent person. The only real fight I’ve ever had in my life, was with my brother when we were kids. I  may or may not have gone after him with a knife and ended up cutting myself in the process. I would not admit to this in a court of law. Besides, it was self-defense. I think.  Well, he did something to really piss me off.  And there had been years of torturous, relentless teasing that went on. To include, once giving me Ex-Lax, telling me it was candy.  At the very least, if I had been arrested, it would have been justifiable homicide.
Gentle Mom
I am the gentlest mother you could ever meet …mostly. I don’t remember ever spanking my kids.  I was mostly one a 
time-out, natural consequences kind-of-mom. Although, I may or may not have grabbed one by the collar as a teenager. However, I did not strangle him. As I said. I'm a non-violent, kumbaya, namaste kind-of-mom.  

I am not a yeller and screamer like my mother was. But boy! On this day, I wanted to scream!
Instead, I fumed on the inside and did not lose my shit, until I dropped him off. I sent this text to his father. 
Only, I didn't send it to his father. I accidentally sent it to my son! 
That’s it. It is decided. I am the best Mom EVER! 

Yep! Mother of the Year!
He had a few other choice words for me...which I will not share here.  He was NOT Happy with me. Of course, I was NOT Happy with him either. 

I was extremely frustrated in the moment. I considered myself yelling via text at his father (lucky hubby right?) so I didn't yell at my son, which in the moment, probably would have made matters worse.

I am actually very concerned about his intense sleeping habits. The next course of action is a sleep study, which he actually requested from his doctor. Here we are again, trying to piece the puzzle together. 

Is it the medication? Is it depression, anxiety, avoidance behavior? Is it a sleep disorder? Does he have a life-threatening illness? Or is he just being incredibly lazy? This has never been his character.  Something ain't right ...a mother knows. You know what they say, "behavior is communication." 

It doesn't seem normal for an 18-year-old to need more sleep than I do at age 29 (wink, wink) and I need a lot of sleep so that I remain Zen, Namaste and all of that crap. 

So …off to doctor this week to get blood work, evaluate meds, do the sleep study and figure out what’s wrong with him, so that I don’t actually have to murder him.