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Monday, October 24, 2016

My Invisible Job

This morning I woke up tired. Once I got my head on half-way straight, I realized that I was pissed off. This weekend sucked, royally. Saturday morning I woke up and thought to myself, Shit! It's meltdown day. I got that sinking, queasy feeling in my stomach.

There has been a meltdown over homework, or time-management, in general, every.single.weekend. Like clockwork over the past few weeks.

Anxiety is a nasty bitch. It can't be explained. It doesn't make sense. There is no magic formula or protocol to follow to get  rid of it.
We are tweaking and attempting to manage it, with meds and therapy but it's slippery like a soapy, wet dog during bath time.
He melts down about being late, or not making it at all to Tai Chi and Kung Fu class. The irony here is that the meltdown either makes him later, or it completely depletes him of energy to go at all. 

Does he really want to go? He says he does, but he keeps sabotaging himself. 

He has managed to fall behind in Kung Fu. He should have tested for a yellow belt weeks ago. This is really no big deal, but to him, it leads to more feelings of failure. It's just one more thing that he isn't completing.

The meltdowns are not as severe as they were over the summer. He is more measured. He knows the lines not to cross. However, they are still disturbing, disruptive, and emotionally draining for him and for me. They effect the whole household.

The concerted amount of patience that I give him leaves me with nothing leftover with the adults who live here, my husband and my mother. The tension in the house is thick and mucky. It's definitely not exactly conducive to romance. We can barely tolerate each other.

There is little energy even for myself. Yoga hasn't seen me in the studio in months. I absolutely will not miss my therapy. It's the one thing I make sure I reserve for me.

I am trying to give Blue every support possible. He's seeing an excellent therapist who is working with him on strategies, time and anger management.  Last week we had a Person Centered Planning meeting, where his Facilitator helped him with time-management brainstorming. He has a personal mentor who is also working with him on breaking down assignments, time chunking, and coping skills.

His anxiety...his black and white, all or nothing thinking, seems to keep getting in the way of the application of these skills in heat of the moment.  If there is a plan, and something happens to throw it off by 5 minutes, it's over! Can't do it! Can't fix it. Can't change it. Can't move forward or even sideways.

I try to coax him into the mindset that the plan is more of a guide. There has to be a degree of flexibility in order to use it.

He is blessed with a teacher in his Advanced Placement Calculus class who has been more than accommodating and willing to work with him after school. She is even willing to break down assignments. He does fine at school,  but at home...nada! Nothing seems to help.

He won't consider dropping the class. In fact, he was highly insulted when I brought up the possibility. That would mean that he failed. Mind you, his counselor told me that he doesn't need this class for college unless he plans on being a math major.

I usually give him the benefit of the doubt. I am always trying to find the bright side of a situation. My first instinct is optimism.

I look at autism and anxiety. I study it. I turn it inside out, trying to figure out answers.
What is the motivation behind this behavior? 
How can we help him? 
What is this mental block that's in his head? 
What has him so traumatized that he is almost immobile? 

Yesterday, my optimism flew out the window. Fatigue can do that to you.  I found myself doubting the authenticity of his meltdowns. I started feeling like he is doing this on purpose.
He is trying to drive me up a fucking wall! 
He is being lazy! 
He doesn't really want answers. He wants to just sit there on his god damned phone, texting and watching videos!
He is avoiding responsibility! 
He begs for solutions, only to meet each of them with objections! 

This morning as I drove him to school, I wanted so much to just lay into him.
What is your problem? 
Everyone is willing to help you. 
Why are you unwilling to help yourself?  
This is bullshit! 
I need to take away your phone and your privileges! 
I need to drop you off at the library and not pick you up until your work is done! 

Last year, the library totally worked. If not, then he went to Starbucks or Panera. Why isn't any of this working now? 

I'm a grown up. I didn't say of any of the vile things that were in my head. It would only upset him more and start his day at school off in a downward spiral. I kept my thoughts to myself. After I dropped him off, I drove to Starbucks to buy a cup of energy to help me face the day.

Once again, I stifled my anger, which I know isn't healthy. But, what choice do I have? There is no one's ass that I can kick, legally. And if there were, I would probably be too tired to do it.

It was bad enough yesterday when he told me that I was embarrassing him by walking outside the house during his meltdown, because I didn't want to give him an audience.  I actually said, "I don't really give a shit that you're embarrassed! I'm tired of listening to you scream!" 

I have moments when I feel like a failure.  I've never had to ground him or take his phone away.  I start thinking, I did it all wrong. I should have disciplined him more. I start to question everything I'm doing and have ever done.

Then again, he has always handled his business. If he didn't, he dealt with the natural consequences without completely falling apart. Now, it just seems stupid to have to resort to taking things from him. He is seventeen. He wants to go to college. He is going to have to learn to discipline himself.

I won't be in college with him, telling him to put his phone away so he can get his work done. He has to do this if he wants to be successful.  The best way to learn is to fail a few times, to feel the sting of your choices. It's a painful process for a mother to watch.

At this point, any way that I insert myself into the process of helping or teaching him these life lessons, only seems to create more of a power struggle. He has to take ownnership of his life.

So, he works with his therapist,  his teachers, counselors and mentors. He wants to be seen as a mature, serious student to them. He can be a baby with me. There is no need to impress.

There comes a time when as a young adult, you have to remove your own mental blocks. You have to take the advice of the professionals and peers that you respect. Your mama knows nothing anyway, right?

Once upon a time, he was fully capable handling his schoolwork and even managing a great part of his daily living skills. I don't know what happened. I don't know if it's fear of becoming an adult, or fear of leaving high school and transitioning to college. It could be unconcious, self-sabotage. Lots of seniors in high school go through that when they are afraid of the new life they are facing.

I don't know what else to do for him, or even if there is anything for me to do.

I just know that I'm exhausted. 

Friday, October 14, 2016

Senior Year Hell

I've done this before.
I should know what I'm doing by now, right?
How come it doesn't feel like it?
Why does it all feel brand new?

One would think a mother of three, just might have shit figured out by the time her last child reaches his senior year of high school. Nope! Not when autism is involved.  You just never know what will be waiting for you when you turn a corner.

One thing my boys have in common, is they are both exhausting to parent.

Someone who knows my life intimately observed, "It's like you are raising 5 or 6 children."

I was surprised to hear someone else verbalize what I have felt for years. And frankly, I am tired. Burnout.
Spent, like an old dollar bill.

I was so relaxed for a while there when Red moved out. I wrote about feeling like I was ready to ready to retire. I felt like I had already done a lifetime of work. It was like a new era. I could breathe again. I could watch a television show live, not recorded weeks earlier on my DVR. There was less bickering and fighting in the house with the two brothers living in different places. It was sweet, juicy, savory, peace and quiet.

Apparently, God laughed at my retirement plan.

The peace is over.

We are swimming in Senior Year Hell without a life preserver, and no swimming lessons.

Blue has always been the most independent of all of my children. He was the toddler who climbed out of the crib, over the safety fence, down the stairs, up to the top shelf of the pantry, to get his cereal before I woke up. He then climbed back up the stairs and over the fence. He came strolling into my room with the box of Froot Loops, like a boss!

He has kept up with his grades and school work since he was in middle school. By the time he reached high school, he had become his own advocate. I never have to follow up to make sure homework is complete. He is self-motivated. He usually chooses the kind of classes that will be a challenge, where he knows he will have to work hard. He doesn't need constant prodding and reminders. Up until recently, he has just done what needs to be done.

I have always considered him to be my "easy" child, even though some of his teen years were difficult. He diligently asserted the fact that he didn't need parents.  This 17th year, however, has been exceptionally difficult.

The night school let out for the summer last June, also happened to be the night before he was to take the SAT for the second time. He had a major meltdown. It was awfu1! He was more enraged than I think I had ever seen him before. He ended up walking home a couple of miles in the rain, at night, because he just couldn't bare to be in the same car with me a moment longer.

The meltdowns over the rest of the summer would go downhill from there.

Why this sudden change in persona?
He was leaving his carefully built support system at school, the teachers, and mentors who he talked to every day.
He would be stuck at home with us. Yuck! Who wants to be around their idiot parents all day, every day for the summer?  
There would be no daily routine.
He would not be able to see his friends as often.
He couldn't stop thinking about the fact that everything is going to change next summer, after graduation. 
All of the things he was missing this summer, in his mind, he will lose permanently, next year.
How is life going to look?
How is he supposed to be able to figure out how to get there?
Becoming an adult and college student will require a lot of work.
What if he can't do it all?

The unknown is a pretty daunting place.

Senior year is a freaky thing for the average student. For a kid with autism and intense emotions, it can be even more overwhelming.

Well, we made it through the summer on a wing and a prayer. The saving grace was the Job Coach we hired to work with him, one on one. She was a life saver! She gave him back a sense of structure. The two of them worked together fluidly.

He took his first college class on the community college campus, which gave him back a little bit of a "social vibe," as he put it.
He met a new friend of the female persuasion, who seemed to like him a lot. He had a friendship connection with her, which he found comforting.

Then, all of that was over.
His Job Coach moved away to further her education. We vowed to stay in touch, but it was gut-wrenching to say goodbye.
The job that she helped him find ended, with a bang.
 (And by bang, I mean another pretty awesome meltdown.)
Then his summer college class ended.

The day before his senior year was to begin; he had the most epic meltdown yet.

So here we are now, at the beginning of senior year, and nothing is how I anticipated it would look. I don't think he pictured any of this either.

He is having trouble sleeping. His anxiety is higher than it has been since the beginning of freshmen year in high school.  He is managing his classes by a very, thin thread. Miraculously, he is still making good grades, but the amount of energy he has to put out to make them is draining.

Things that came easy to him a year ago are a struggle today.  The intensity of his emotions has taken out a huge hit on his executive functioning and planning.  It's like he's a different person.

He is still in the top 25% of his class, and the top 25% of SAT scores, in the country. This does not mean that his path will be immediately going to a university.

The excellent SAT scores and all of the colleges knocking at our door are a painful reminder that even though he has the ability and the academic resume, that would get him into most any university...he is simply, not fully prepared. We are facing the reality that right now, during college application season, he is not mentally ready to add the task to his plate. 

With his current level of anxiety, he is doing well just to make it to school and last through the entire day. Doing homework, has suddenly become overwhelming for him. When it's time to get started, he starts listing ten million reasons why it will be impossible to get it done. Everything that he used to do, will now, not work. He winds himself up to the point where most of the time, he can't even get started.

And so the dream changes, again. He will most likely start community college next year.  Perhaps all of this is happening now to show us, that a university experience right now, would probably make him unravel completely. There is more growth needed in other areas of his life.

I am having to regroup, and look at parenting him at this stage, in a whole, new light. I thought he would be so much easier than his brother was. He isn't. He is just at a different place than what I expected at this point.

I  have to watch my words and actions meticulously. I tape my mouth shut, to keep from offering advice. I quell my natural instinct to help --to be the fixer of all things.

Instead, I try to listen actively. I  ask questions that help him find his own answers. It is NOT easy for me to change my mom-to-the-rescue mentality. Sometimes, I crack under pressure.

I am working to consciously keep boundaries, and not just for him, but for myself. I work to stay in my lane and not cross over into doing things for him. It's a constant battle I fight with myself.

For example, suddenly he is struggling to get to school on time. So a few days ago, I found myself making breakfast for him ...something that he has done for himself for years. When he sat down to eat, without a thank you, and still had an attitude on the way to school, in the car. Immediately, I felt like an idiot for doing it.

Making things easier for him is not helping him. Making it through the struggle is where he will grow and learn. I have to allow him to do things for himself, even when I see him struggling, even if it kills me. My job is to promote independence, even during a time when he is vulnerable and afraid.

I am a continual work progress. I made the mistake of running to Red's rescue automatically, for so long. He didn't want to let go. He's been out of my house for almost a year, and we are still working on him letting go of his dependence on me.

I know that Blue has it in him to make it through this.
He will become independent.
He will make it through this transition.
He will rise.
He will grow.
And hopefully, so will I.

Friday, October 7, 2016

Wanted -Mom Replacement


Mom replacement for teenager. Only one child left in this family of difficult children, to finish raising through his senior year and transition into adulthood.

This teenager comes with autism and anxiety. You may be called upon at any time, to do research on doctors, medication, various therapies, individual education plans, and coping strategies both for yourself, and the teenager. You will become an expert in all of these fields because you must stay a step ahead of the professionals that you pay to do these jobs.  (Look will basically earn an honorary doctorate in the field of pharmacology, nursing, education and therapy.) The maid and cook duties are just an added bonus of skills that you can add to your resume, to show that you are great at mult-tasking.

The pay is non-existent for a shit ton of work, none of which will be appreciated. You must have infinite patience, the ability to smile and act like you love every minute of the job, while being told that you are in fact, incompetent and can't do anything right.

You will spend the majority of your time driving, mostly in circles within a 20-mile radius of your home.  Your ungrateful passenger will likely be angry,  (maybe not at you, but that doesn't matter) so use your words very carefully.  Do not, I repeat, DO NOT engage in debate with your passenger.  Do not offer any advice (even when he asks). It's a trick. You will be sorry!

You may often find yourself often operating your vehicle on auto-pilot, because of sheer exhaustion.   Drink plenty of coffee to help you stay awake.  *Do not add Bailey's unless you are staying at home. Bailey's can nullify the caffiene effect, plus the whole illegal to drink and drive thing. (In fact, definitely keep it in stock in your liquor cabinet, along with plenty of vodka and wine. Buy the gallon-size bottles so that you don't have to go to the store as often. Never let your supply run-out! NEVER!)

When going into a grocery store (which is also a major part of your job)  take a picture of your vehicle with your cell-phone before parking, with markers of exactly where you are, so that you can find your car when you come out of the store. Not only, will you often forget where you parked, you may also forget what your car actually looks like.

The original mother lost her ever lovin mind, but don't let that scare you. He will probably be an angel for you since you did not actually carry him inside of your body for 9 months, while getting fat, your feet growing a size and a half, and your boobs left hanging on the ground.

This could be considered to be a community/societal service project, earning you a permanent place in heaven, which is ultimately the best pay ever.

Bonus:  You will not be blamed for everything that ever goes wrong in his life. He will continue blaming the woman who gave birth to him for all of that.



p.s. I will not be available for questions after you're hired. I am moving to a non-disclosed location.
p.s. s. Your face will have this expression most of the time.

In this momlife there is either laughter or tears.
Sometimes both within minutes of each other

Friday, September 23, 2016

Keep the Crazy To a Minimum

It seems like everywhere I turn in my small world, there is some kind of crazy going on. If it's not one of my boys, it's the other. If it's not one of them, it's my mother. If it's not my mother, it's my husband or it's me. I just woke up from a morning nap. After I dropped Blue at school this morning it hit me, the crazy has been slowly draining the life out of me.

As for my husband,  yes, we drive each other crazy, but he is my safe place to land and I am his. We can say some pretty shitty things to each other when we're frustrated with one of the kids; when he's frustrated with work or whatever. (Okay, it's mostly me saying the shitty things and him putting up with me). After so many years together, we know that we can take the hits and get right back up the next day, apologize and keep loving each other.

He just got home from a business and pleasure trip to Georgia to see his father and Florida for business. I was happy that he was gone, but missed him at the same time. When he crawled into our bed last night, I felt safe again. My teammate, who gets on my last nerve, is home to have my back.

Kendal (also known as Red) turned 21 over the weekend.  I can't believe that I officially have a legal adult! He now has the right to go to nightclubs and if he so chooses, consume alcohol.  His father and I took him out for dinner for his birthday, right before Alan left for his trip.  I offered him a taste of my martini.  He declined.  A few days later, I tried to coerce him to some champagne. I thought, maybe if he has a drink, maybe just maybe, he will shut the f*#% up for a few minutes and go to sleep. No luck. He wasn't the least bit interested. I think it mostly has to do with his obsession with keeping his body lean and healthy and for now, that's probably the best decision.

Not only is Kendal 21, but soon Blue will be 18.  He will graduate high school in 2017.  I had to write 12th grade on a document this morning. I couldn't believe it. Me. A mother of 2 young adults. No more babies. Boy! I miss those sweet, innocent days.

A memory...

A few days ago I was walking through the pet store when a memory waved through me. Those Texas, hot, summer days when I would take them there to wander aimlessly down the air-conditioned aisles. We would watch the dogs play in daycare behind the plated glass, and pet the ones who were up for adoption. Blue would find the cat laser toy and spend an hour making the cats chase the little light.  Then we would move on to the birds, the gerbils, and the fish. It was a fun, inexpensive way to keep them occupied and cool in-between trips to the pool. That was when they could stand to be in the same room for more than 10 minutes without wanting to kill each other.

Since they are both young adults now, I am trying to do to less and less hovering and fixing the things that I want to look differently for them.  (It's actually a big part of my therapy, and part of the reason why I find myself so exhausted all the time.) I am learning that it's their job to move their lives forward. I'm here in the background to support them. Sometimes that means sitting on my hands and putting tape over my mouth. My therapist is helping me to stop being the fixer. I've been doing it so long, it's a hard habit to break. But, being the fixer stunts their growth and it keeps them unhealthily attached to me.

I don't sit in classrooms, or walk through a job site with them. They need practice in self-advocating, thinking on their feet, solving their own problems and making their own life decisions.

This was a good day.
The boys worked out together
at the gym where Red is employed.
As for the crazy, they may be young adults, but when it comes to getting along while they're sitting in the same room, it's like they are still children. They are still siblings whose habits and idiosyncrasies drive each other nuts. Which means, I still find myself juggling them around each other when Red comes to visit us on Sunday afternoons.

It's crazy, and it's sad to me that they still can't get along and we can't enjoy family time together. It's almost like I'm new here. I don't know why I'm still surprised, or disappointed by this.  I know that they love each other. There is the rare occasion that they will get together and actually enjoy each other's company. It's usually best if I am not with them. When I am present, it's like they show off and compete for my attention.

Lately, Blue has been under a lot of stress as he transitions into his senior year. Senior year is stressful for most kids.  He is in AP Physics and AP Calculus, which are demanding classes. He's also freaking out about exactly what life will look like after high school. He isn't sleeping well. He wakes up in the middle of the night with racing thoughts. So his fuse is extremely short. He can only put up with Red for very short periods of time before it blows.

Red drives him crazy with his incessant talk about his body, his workouts and his diet. The more anxious Red becomes, he ramps up on his repetitive and relentless dialog on the subject. He asks us for our opinions, only to refute whatever we offer. If Blue tries changing the subject, it's like talking to a rock, you can't penetrate. It's like he doesn't even hear you.

Blue has his own agenda that he would like to discuss. He wants to save the world, including his brother, who he believes is clueless.  It's infuriating when he wants to have a "teaching" session with his older brother and he just isn't listening.

When Kendal is going on and on, Blue wants to interject and share his own diet and weight loss methods, which are totally different than his brother's. Blue is going the pescatarian route. Unlike his brother, he believes in carbs, vegetables and moderate exercise like walking and Kung Fu. Red isn't trying to hear anything that his brother is saying.

(Have I told you all that Red has lost 100 pounds and Blue has lost 75 over the past year? The boys who once wouldn't eat anything green now eat vegetables, and drink green smoothies!)

So most of the time when Red visiting us on Sundays, Blue leaves the house to go out to Starbucks, the library, or Panera Bread, to do homework.  He is avoiding his brother. I facilitate this to keep the peace. It's crazy.

This week, however, we all needed a few things from the grocery store. Out of convenience, we went together. I figured I would (juggle) send them off in separate directions to do their own shopping.  We wouldn't have to be together the whole time. But, at the end, when were standing in line, Kendal said something that triggered Blue. They both walked away, leaving me to pay for the groceries (of course). The fireworks started as soon as we all got back in the car. I couldn't separate the two of them fast enough.

Just when I start trying to let go of their crazy, my mother starts in with hers. I believe that Alzheimers and dementia are knocking at her door. She sees how stressed I am. In her her head, it becomes all about her. She starts to feel like she is another burden.

Out of nowhere, she will wake up in the morning and say things like "I just don't think this is working out. I need to live somewhere else. I just don't know where, but my being here is just too much for you."

More often, she is hearing conversations in the middle of the night that we are NOT having about her. She isn't sleeping well, which makes her thoughts go further into the dark side.

So here we go with a new challenge I have to deal with. What to do to keep my mother's crazy to a minimum. Apparently, that is my assignment in life ...figure out the puzzles dear Karen. Keep the crazy from completely taking over.

My husband loves my mother so much. He is gracious, always asking her if he can do anything for her.  For example,  he is going to the store. He offers to buy wine for her. When we go to the wine store, it looks like we are having a party over here. There are no parties. It's just our regular supply of liquid calm to help get through the days.

The following day after he bought the wine, he leaves the house. She actually says to me, "I know Alan bought wine for me yesterday, but am I allowed to drink it? I know he thinks I drink too much."

No mom. Don't drink the wine! He bought it just so that you can look at it.

I say to her, "Come on now. You see the amount of crazy that I am already dealing with. Please don't put your crazy on top of it."

I know that she really can't help it, no more than any of us can help our crazy.

For now, I just sip my wine and hope that the next day has a little less crazy in it. 

Tuesday, September 13, 2016

Group Home Blues

Weekly Meal Prep
I confess, to this day, I still feel a little twinge in my heart when I drop Red off at the group home. Maybe I'm a snob, but I still don’t like the sound of those two words strung together (group home) and all of the subtext that they carry. It may not be logical, but in my head, those two words are synonymous with, “You failed.” He can not live with you because there must have been something as a mother that you did or did not do.

It was toxic when we lived under the same roof. He could not get along with anyone in our family. Even the dog would run and hide when he saw him coming. He was unhappy and he felt he had the right to constantly disrupt any semblance of peace. He was miserable and determined to  take us all down with him. There was constant turmoil and if there wasn't, I was sitting on the edge of my seat waiting for the next bomb to drop. Our home was not the haven. It was the storm. 

Intellectually, I know it’s not my fault that he lives in a group home and not in a dormitory or a cool little apartment somewhere.  It’s not anyone’s fault. It just is, what it is. This is his path.

We gave him every possible opportunity to choose another path. He wasn’t capable of doing that. He sees me as an extension of himself.  As long as I am within arm's reach, and eye's view, he would prefer that I do the work to help him grow up. The distance between us has given him no choice but to do the work for himself. 

He liked the group home at first. Then he hated it, and now, he is somewhere in-between. It's definitely is not the comfort zone of the cushy home he grew up in. However, his discomfort there is making him grow. Whereas the comfort here with his mama at his beck and call, was keeping him stagnate. 

Sometimes it almost like the universe has to take these drastic measures to make me do the hard thing for these boys. I am resistant to making the tough decisions. I want to coddle and comfort when what they need is a little discomfort so that they can grow. They need that gentle push out of the nest so that they can fly. 

It’s been almost a year now, and Red has grown. I've written in detail about his progress. He's not driving yet, but he is beginning to fly. 

He is still not quite where he needs to be in order to live totally independently, but he has maintained employment for almost 3 years now. However, he doesn’t have enough income to live on his own. He still requires assistance with budgeting, transportation, remembering to take meds, remembering to wash his clothes, change his sheets, and things of that nature in a timely manner. 

When he lived with me, I was never sure if he would remember to actually lock the front door every time he left the house. He can be so forgetful and absent-minded at times. (I have no idea where he gets that from. I'm not forgetful at.all.) There were and still are, a few things that make me wonder if he is ready to live outside of a supported environment. 

I opt out of the dozens of panicky phone calls that I can get from him on a daily basis. I know that his complaints are not anything new. He is only allowed a maximum of two phone calls to me per day. Every since the group home changed management, he has been complaining.  

One night, he made his last acceptable call to me at 6:30 p.m. instead of the usual 8:30.  I answered, "Last call for alcohol!" He laughed but sure enough, later he would call again. 

I don't take his superfluous call. When I don't answer, he calls his father. Eventually, he asks to speak to me again. The answer is still, no. We are done talking for the night. I knew that all he wanted was to complain about what they "might do" at the group home. The infamous, "What if's?" 

When he first moved, the home was operating in more of an independent style which suited him. He was used to a certain amount of autonomy at our house. We had been working on independent living skills over the past several years. He knew how to cook for himself (although he didn't like to). He was responsible for his own laundry, keeping his room and his bathroom clean. He would go out with friends to church, to the movies and things like that.

The agency that was initially running the house when he moved in, ended up acquiring additional group homes. Subsequently, over the past few months, they have transferred the management of the home where Red lives to another division of their agency. The new management has been making changes to the program. They are trying to get things in order to meet State guidelines. 

The proposed changes, like doing an in-house day hab, are putting Red into a panic. He is used to his schedule. He’s used to his routine and doesn’t want anyone coming in and messing with it. He’s goes to school, then to work at the gym. He does his workout afterwards.  He goes to church on Wednesday nights and Sundays, and occasionally he gets together with friends for the movies and other recreational activities. 

I am actually proud of the fact that he keeps his schedule pretty busy and takes initiative to get together with friends when he has free time. That is something he would not do when he lived here. He would just sit around complaining, waiting for his very few friends to make plans with him. 

He’s beginning to get angsty with the changes that are being put in place, even though most of them won’t really effect him because he already has such a busy schedule. He is functioning well and his goals are not the same as some of his roommates. This doesn't stop all the "What if" questions. 

“What if they say I can’t cook my own meals now?”
“What if they start making me eat their high fat, high-salt, unhealthy menu?"  
“What if they say I can't work out after work!”
“I’m not doing this!” 
“They are trying to take away my rights! I am adult! They can’t control me!” 
“I’m not some helpless kid they can push around!” 

Naturally, his anxiety sparks my anxiety. It doesn’t take much for me to start worrying. I’m really good at it. I start thinking, What are we going to do next? How much longer is this situation going to continue working for him? 

Of course, he takes anxiety to a whole new level. Then he becomes increasingly defensive, angry and defiant. 

I don’t think the new staff  are used to a consumer who is quite so independent, vocal and articulate about his wants and needs. He is not the one (just like his mama) who goes along with the program, especially if the program doesn’t make any sense to him. 

A few weeks ago, after a heated exchange between Red and a Case Manager he was told, “Maybe you shouldn’t be here if you’re so independent.” Yeah! She actually went there. 

A few days later, we ended up having a meeting with the Area Director of the agency. He assured us that the staff member needed some additional training and should never have used those words. He assured us that none of the things Red was worried about were going to happen. He said they would find a way to make things work. They would set his goals for independence in preparation for his moving forward into a more independent living situation within the coming year. 

The latest panic phone calls were about him using Lyft from the group home when no one there is willing to give him a ride to go to church or to go hang out with friends or his new girlfriend. (Yes. There is a new girlfriend. That’s a whole other blog.) He uses the money from his paycheck to pay for this additional transportation, since he doesn't drive yet. 

He says, his Case Manager told him that he can't use Lyft. They have to know who he is leaving with, do a background check. 

Now, let’s think about that for a second. If he were to get on a city bus, would they background check every driver? 

Currently, he goes from school to work and to work out. This is essentially an 8 hour day that he is managing on his own. If he gets off early he could walk or meet up with a friend to do whatever he wants and they would have no idea who he is with or what he is doing. So really? What is the problem here? 

We don't have many busses in this area. Using Lyft in my opinion, is a great independent living skill. He had been using an inexpensive Taxi service. When I found out that Lyft operated in our area, and was less expensive, I suggested he try it. Blue is only 17 and he uses it, when I'm not available. 

Over time I have found that when I don't accept one of his calls when he is upset,  often by the time he calls again he has either forgotten about the problem, or he has resolved it. 

This time, it turns out that he called the state 800 number for the State of Texas agency that supervises group homes, to advocate for his perceived rights violations. I don’t think this was the first call to them (which I'm sure is not thrilling to the managing agency). 

He told me that the state told him that he had every right to use Lyft. All of the other concerns he had, like they were not buying his protein and vegetables because he wasn't eating from their menu, was also resolved. The State would be contacting group home management about his rights to ensure they are not being violated.  

I would venture to say, he has this whole self-advocacy skill in check. 

p.s. -We are looking into other living options, but nothing happens fast enough for him. 

Monday, September 5, 2016

We Are Marriage

Open Air Cab in Paris
You are the clear blue pool 
to my white sandy beach 
You are decision
to my contemplation 
You are practical 
to my anxiety 
You are the long way
to my shortcut
You are the planner  
to my go with the flow
You are the organized
to my mess  
You are night 
to my morning   
You are science fiction
to my romantic comedy
You are engaging
to my humorous  
You are facts 
to my motivations 
and behaviors
You are the manly man
to my girly girl
You are the black and white 
to my living color 
You are the conspiracy theorist
to my hopeful optimism 
You are red wine 
to my white
You are the cookie 
to my cocktail
You are New York 
to my L.A.   
You are discipline 
to my indulgence 
You are provider 
to my nurturer 
You are strong 
where I am weak
You are my left hand
I am your right  
You are science 
to my language
We are marriage
We are parents  
We are explorers
We are music
We are dance  
We are art
We are  

Wednesday, August 31, 2016

Umbilical Cord

I'm the kind of mother
who feels your joy
who anticipates your pain
you get a shot
I flinch
I feel it
maybe more intensely than you do
you are anxious
I am shaking
you are happy
I am ecstatic
you are sad
it lays heavily in my heart
I want to wrap you up
in a bubble of protection
I can not
I want to protect from pain
yet, pain is growth
you are no longer children
yet, you will always be my children
the prettiest babies
in the history of the world
to have and to hold
four pounds, eight ounces
five pounds, thirteen ounces
now you pick me up
you hold me
I want to coddle and comfort
yet, discomfort makes progress
I do what I have to do
not what I want to do
I let you fly
I watch you fall
I see you get up
standing strong
from inside my body
to out in the world
my babies
my strong young men