Merry Christmas

Here is is Christmas Eve and I feel like George Baily from it's a Wonderful Life.  If you have been stuck under a rock for Christmas and have never saw this fabulous movie, I strongly suggest it. If you are against old time sappy black and white films, please put that aside and allow yourself the pleasure of seeing the impact that one person can make on the world.  This entire Christmas season, I have been trying very hard to hide the fact that I too have felt like a failure in so many ways.  All I ever wanted to do was have a career that was satisfying, a relationship that was loving and the ability to be the best mother in  the world to a child who cannot provide for himself.  I have fallen under some tough times lately, I won't get into all of the details because I do have faith that God will bring me through this.  Christmas is a magical time, but it can also be a time of self reflection and a time when depression can set it.  I feel I was forced to leave a job that didn't validate me after giving them the best years of my life.  I needed a break, a time to take a rest from the rat race of running constantly and spinning my wheels only to find myself further and further behind the eight ball.  I have a lot of pride and I keep these things to myself.  A lot of things have been coming up for me, what is it that I am meant to do with my life, how can I continue to help support our family in this relentless economy, how can I stop the cycle of bills coming in and no way to pay them while trying to be a good role model and mother?  How am I supposed to do this when so many factors seem to be working against me?  I am a person who feels things happen for a reason, and my faith is tested everyday, but somehow I always find a way to get it back.  I know I am not the only person out there who has ever felt like they were forgotten about.  In the big scheme of life, when I see people doing all the wonderful things, going on vacations, sending their kids off to college, buying new homes, remodeling old homes, meanwhile I am wondering how I am going to get my car inspected or find a way to just put gas in it.  I wonder where it was that I fell short and where did I go wrong?  Is it right to just be humiliated into doing things that other people dictate to you to do.  Is it right to feel like less of a person when someone calls and threatens you about a bill you just can't pay right now?  Is it weak to say I am too depressed and overwhelmed to go out and start all over again or that I am just so tired of going years and years with no sleep worrying about the future of my son, or worrying that he will wake up in the middle of the night and do something that can't be undone while I am selfishly sleeping?  These are the thoughts that I have been pondering for months now.  I guess when I was working, I didn't have time to really think about them, but they were still there festering under the surface.
Putting that all aside , I want to say that I experienced a Christmas miracle and this is one thing that I will never ever take for granted.  I innocently posted about anyone having an old microwave that we could use so that Zach does not try to make his own snacks on the stove and a tragedy ensues.  I really was not prepared for what took place afterward, and I am humbled and grateful and just a puddle of mush today. ( Meanwhile I gotta get myself together because I am working coat check tonight down at the restaurant to earn a few extra bucks)  An old ex head start parent offered me hers, and within 10 minutes Tammy was knocking on my door with a brand new microwave courteous of her and my cousin Gail.  My phone was ringing off the hook from Tim and Maria, offers were coming in from everywhere and I just can't believe how loved and appreciated we really are, and how many people DO care.  Cousin Davey and his wife Nichole left a beautiful gift on our front porch this am and I am just speechless by every ones words, gestures, thoughts, prayers and kindness.  I am not leaving anyone out, I appreciate everyone of you.  You all gave me something back today, a piece of me that I thought was lost, buried, or never was there in the first place.  It's back, and I am back.  This is no small matter and I am moved and motivated to pay it forward myself and count my blessings as I have asked all of you to do in my many blog entries and posts.  I can go on and on here, but the point is made.  This is what Christmas is about.  I love you all, my dear friends,my family and everyone out there who is in the same boat.  It is amazing what a difference a day can make and just when you think you have been forgotten about a group of angels show up to remind you that you haven't been.

I need to go get ready for work, there is not enough visine to make me look presentatble today ,but I dont care.  Thank you all so very
much.  And again Merry Christmas Love Ron. Lesa and Zachary.

Special needs parents

Yesterday was Zachary's Christmas Program at school.  For anyone who has ever attended a program put on by special needs , it is the sweetest most heart warming  experience you could ever witness, They try so hard despite all of their fears and complications.  It is funny as hell when some of them get so excited they literally jump out of their skin when they see their parents, or when a little boy stands up and reads the night before Christmas and then bursts into tears because he is so overstimulated by the applause.  Some of the kids really ham it up, while others act like they are too cool for school ( that would be my Zach).  It is just something that words can't describe and the emotions that you as a parent feel watching these kids try so hard are so overwhelming that it is hard to put into words. Every parent there is rooting for every child. It is as though for one  brief moment we all become one family cheering for "our" kids and taking pride in watching each and every child's accomplishment as if they were our very own.

As I looked around the room and saw the tired faces of all of these parents/grandparents/caretakers sitting there with their cameras and video recorders, I couldn't help but feel an instant camaraderie with them.  You can just look at each other and there is an instant bond that is unspoken yet says so much.  I know for a fact without even formally meeting them, that they have spent many nights awake worrying themselves sick about the future of their child.  I can look them in the eyes and know exactly how they felt the day that they realized that their child was not like other children and that life as they once knew it was never going to be the same.  Just a simple handshake with one of these parents can tell a whole story, a story that I know, a story that we all know.  A story about an unconditional love that only gets stronger as the years go by.  There is no competition with this group of individuals.  You will not observe a click of parents who think their child is better than all the others, or who is mad because their child didn't get as much stage time as another.  You will not find any parents judging what a child is wearing, because we all know that certain children cannot bear to wear certain fabrics.  There is such an absence of ego, and such a unity of spirit.  It is really extraordinary.  I can sit there and know without a doubt that if my child tried to dart out of the auditorium, that there would be a group of fathers who would instinctively run over and make sure that didn't happen.  I know for a fact that if there was a child on stage who was upset and throwing a fit, not one parent in that room would feel annoyed or that their child was slighted, or that the performance was ruined. We have all been there, we share a bond,, it is inevitable.   There is an overwhelming sense of compassion and gratitude among this group of individuals.  People are courteous, they move out of your way so that you can see your child when it is their turn, they bring plenty of tissues and pass them around.  They clap and applaud for each and every child, they laugh with the kids and cry with the other parents.  There is  mutual respect, admiration,

and empathy.  Parents of special needs children can become lifelong friends in an instant.  Something comes from deep inside that can make you just meet someone, even if it is on the Internet ( Colleen, Janice, Pam, Dawn, Kelly ) and just love them and their child immediately and go out of your way to try to help them in any way you could.  A part of you that tells a complete stranger to call you anytime day or night if they need a shoulder to cry on, or advice or just someone to bitch to about how unfair life can be at times.  This is no small matter, this is one of the perks of having a child with special needs.  There is a whole community of strangers out there who love and care about you and your child whereas a friendship that didn't include this common ground may take years to blossom, we can skip through all the bullshit, and get to the heart of the matter in seconds flat and have complete faith and trust in each other.   For this I am grateful.  We need each other and we pull strength from each other.  We are the experts and we consult with each other.  I looked again around that room filled with tired, weary,overworked but hopeful caring people who for one hour put all of their cares and worries aside  and I silently blessed every one of them, because they are my friends, my family and my fellow soldiers who share a common bond and an important mission that has been entrusted to us.  May we continue to rise to the challenge.

Ronnie

I don't feel like I can blog one more day without telling everyone about my wonderful other half Ronnie.  We started dating when Zach turned five years old and although we knew each other a few years prior to this and were definitely VERY FOND  of each other the timing was not right.  So we went on our first official date on Ron's 30th birthday where we met for drinks along with some other friends.  Ronnie was aware that I had a child and I swear I told him that night that he had been diagnosed with autism, Ron doesn't remember me saying anything.  The next night after our first date Ronnie came over and was excited to meet Zach. Zachy just took to him right away.  I will never forget it he had just had a bath and had his little feety pajamas on.  He looked so sweet and lovable and Ronnie was goofing around with him and I was thrilled that they were hitting it off.  I had separated from Zach's Dad when Zach was two and although I had a few dates here and there, I was basically alone for much of that time.  I feared most of the guys were intimidated by Zach's condition and that was just as well because we were a package deal.  With Ron it seemed to be different.  After they played around for a little bit I put Zach to bed and we were talking and Ron came right out and said "what's different about him, he played with me, but he didn't say one word, does he have hearing problems or something?"  My heart started to pound because I swore I told him he had autism the other night.  Ron claimed I didn't or at least he didn't hear me, so then he started asking questions about him, not as an intimidated stranger but as someone who was truly interested.  There was no judgement or fear only genuine curiosity. 

So our relationship progressed very quickly and naturally as well as Ronnie's relationship with Zach.  Zach would wait for Ronnie to come over every night for his hour or so of horse play and I saw a real bond forming between them.  It made me so happy that someone else was able to see Zach for the wonderful child he is and not just focus on his autism.

Then enters Ronnie's friends, a bunch of guys many of who had reputations of tough guys not to be messed with.  Well Zach turned these tough guys into silly clowns who would stand on their heads and do anything to get a laugh from him.  Their total acceptance of Zach and their respect toward me was so evident.  Many of them including Ron would say "God bless the person who ever disrespects or picks on this kid" He was treated as their little mascot. Here were all these guys with tough reputations, covered in tattoos and they were so enamoured with little Zach, letting him jump all over them, roughhousing with him and genuinely interested and concerned with his progress.  Many were trying to get him to talk in silly ways and I never felt so safe or so loved in my entire life.  My relationship with Ronnie was growing stronger every day and we were definitely a threesome, me Zach and Ronnie.  Ronnie gave up his freedom, his finances, his sleep and his entire life before he knew us to spend time with us.  He was becoming Zach's father in every way and I couldn't feel more proud or more protected.  One funny story I can remember was one morning my father had come up to visit with Zach and I, I guess we had slept in and the doors were locked and my dad was lurking around the house, looking in the windows to see if we were up.  Well one of Ron's friends who happened to be nearby at the time noticed this and got enraged by this "peeping Tom" and went right over to him and asked him what the hell he thought he was doing lurking around my house.  My father was a bit disturbed ( but I think he was silently happy that men out of the blue were looking out for us) He explained he was my father and the guy was embarrassed and apologized but I thought it was the most heart warming story.  Our time together was not always marked by fun and games, there were some serious issues with the school system, illnesses, surgery, a move to our new home and PUBERTY which would have challenged the saintliest of men.  Through it all Ron was right there beside us all the way.  He is my boyfriend and my best friend.  He is practically my husband and he is without a doubt Zach's real father.  Ron's family embraced us as if we were part of the family right from the start.  Ron has gone so far as to get tattoos marking his commitment to us.  He has my name on his chest, Zach's initial on his arm, and the autism ribbon on his forearm

   

         There is so much more I can say but I think the pictures and my synopsis of our relationship says it all, so on the eve of Zach's 18th Birthday, I wanted to pay homage to Ron, and say we did it, we made it, and here comes a new chapter of our lives that we will take on together.

If Zach had words I know he would say Thank you for being my advocate, my protector, my buddy, my Dad and my biggest supporter. 

and I ask all of you would you feel afraid if you had THIS protecting you and your child at night?

We are very lucky, and I wanted to take this time to thank him, my best friend for providing us with the definition of family.  We Love you.

Love Lesa and Zachary

A phone call I wasn't expecting

This morning I am sitting here going through my emails and trying to figure out how to post separate pictures on each of my different blogs and the phone begins to ring and I look to see that it is Zach's school.  I automatically think that he is sick or something, so I answer the call expecting to need to get up and get myself together and go pick him up.  As a side note, when I was working, I got the calls all the time, that he was sick and needed to be picked up.  Since I have stopped working, I have YET to get a call like that.  I think the reason is that I get to keep him home now, when it is questionable whether he doesn't feel good.  Since he doesn't talk and is very routine regimented, he makes an attempt every morning to get up and go.  When I was a working mom and I felt Zach needed to stay home it was such an ordeal.  I would have to make sure he really didn't feel well. then I would have to call my parents to see if they were available to watch him, if I couldn't reach them, I would have to make the decision, if I were keeping him home, I had to call my boss, the school and the driver to cancel. I would then have to make sure that if I had any appointments, I would have to call a co-worker to ask them to find the numbers and call the appointments etc etc, it was a very stressful thing.  I know all working moms have this dilemma  when their children are sick, but as I have mentioned before, usually there comes a time when a child is old enough to stay home alone and take care of themselves. I never had that option, so I was probably guilty of sending him to school sometimes when he should have stayed home.  Anyway.... ( wow did I get off topic) I answer the call and it was from the director of education from Zach's school.  For those of you that don't know, Zach goes to a private school for Autistic and Emotional Support funded by his home district which is Wyoming Valley West.  She informed me that the Wyoming Valley West district called her and asked her to call me to see if I wanted him to participate with the highs school seniors and receive a diploma at the 2012 June graduating ceremony.  I cannot explain why but it hit me like a punch in the stomach.  I know by law they had to offer me that opportunity for him, but the thought of him in the middle of a huge stadium with hundreds of kids he does not know, getting a diploma from a school he has never attended just seemed so ridiculous and it hit me right where it hurts in the heart.  I hung up the phone and started to cry my eyes out.  Usually I do very well and I have accepted and embraced Zach's autism, but when milestones such as birthdays and senior year come up, I just can't help but wonder who he might have been.  Would he have been a good student, a good driver?  Would he have been popular and had a girlfriend?  I wonder what kind of job he would have and where his interests would take him as far as picking a college and a major.  It was so unexpected and so jarring. Sometimes I am innocently sitting here doing my thing and out of the blue BAM!  I get hit with a realization that this is not a dream and that this is my life.  As much as I love it and him, there will always be that little part of me who wonders who he would have been.  I guess that's normal.  It just set the stage and I can see this becoming a very emotional day.  I had big plans to clean the bathroom today, but I think I am going to just sit this one out. The dust bunnies in the bathroom will certainly be there tomorrow.  The old me would have plunged into the bathroom and used it as an excuse to distract myself from the heartache I just endured.  The new me is going to sit here and allow all of the feelings to come up in order to come out.  I am grateful for my incredible son, he is awesome and the love of my life, but WOW  that phone call really threw me for a loop.  

More than just a haircut

Ok, I am one of those moms who cringe at old school pictures especially of the boys that I knew, with those god damn homemade haircuts. UGH, What were our parents thinking when they did this. I swore I would never do that and I was never even taught to cut hair so...........
Anyway I'm giving Zach his haircut last night (ahhhh the irony) I get this big rain poncho and I put it on him. I set the lights on high in the kitchen, put a little music on to set the mood and I start asking him in my BEST impersonation of a high powered MALE overzealous hairdresser exactly what he would like me to do with his hair. Well he is just cracking up laughing, and I don't know if he gets the joke or what but he is just hysterical. So I start clipping his hair, and I do not know what happens when I cut Zach's hair but something comes over me and I BECOME A HAIRSTYLIST. There I am clipping and blending and changing the guard settings on the clippers. Then I finish him up and start trimming the back and blending the bottom, cleaning it all up, nice and fresh and clean. I stand back and I can't believe how absolutely gorgeous it looks. It boggles my mind, because I swear I have no idea what the hell I am doing. And he is just the best customer in the world. " Zach, put your head up, put it down, look up, look down, sit still, stay still, look at me and there he is like a trooper." So I decide to get the electric razor out and give him a prefect shave. He has sporadic patches of hair under his neck, some patches thicker than others, all kinds of hair growing off of his chinny chin chin, the start of a mustache, the beginnings of a uni-brow. My boy is becoming a MAN. he will be 18 on the 6th of December and I remember a time when he wouldn't sit still for one second. Now he is concerned about how he looks, letting me use my eyebrow trimmer to trim that uni-brow and skim the little hairs growing on top of his ears ( just little light fuzzys nothing gross). So I take off the rain poncho, slap on a little aftershave and this kid looks like a million dollars. He helps me after I sweep up the hair by getting the dust buster and cleaning up all the little tiny ones I couldn't sweep. Then this is where it gets really funny, I tell him to look at himself in the bathroom mirror and I see him there staring at himself really pleased with the job his mom has done. Then, he starts running around the house like a lunatic happy as a clam. You know how a dog acts after they get a bath, they just go crazy running around? Well that is what he does and it is so cute. As I watch him zooming around the house, I realize that there was a time when haircuts were such an ordeal, I dreaded taking him, I would tell the stylist to just do the best they could with all of the squirming, and now my little man sits for me like a trooper and lets me work my magic. Now I don't know what a real professional stylist would think of the haircut, but I gotta admit, I am pretty damn proud of the job I do. I morph into a hairdresser every time he sits down in that chair and it is just such a labor of love for me to do. I will post a picture when he gets home, if I can figure out how. Now school picture day is Thursday and I have long stopped getting his picture done. He has a fake smile that is downright scary and every time he sees a camera that is what he does. Yuck, I don't like it, so I decline, especially since one time they actually sent me his package of pictures home and he was crying his eyes out. Hello? Am I supposed to include those pictures in our Christmas Cards? I know the photog is busy and doesn't have a lot of time, but if I were them I just would feel so guilty sending a pre-payed package home of a child crying his eyes out and expect the parent to pay for it. Those sorts of things used to depress me so much and make me feel the sting of his disorder. One time they took the class picture of his small autistic support class and the teacher was actually in the process of chasing a child to get him in the picture and that was the picture they took and sent home. So no more of that! It is insulting and ridiculous that they couldn't take another shot. Are these kids that unimportant that they don't feel a parent would be crushed by getting a picture like that? So rather than dread picture day, I just don't do it anymore, I give him his haircut and get him all spruced up, then I will take the picture with my ipad or my digital and make sure I have him in a natural pose laughing or just being himself. There is a magic that us moms of special needs children possess, we can do the impossible, we become therapists, doctors, nurses, hairstylists, teachers, advocates, photographers, multi-taskers and saints.  We are also able to size up any situation and make a very close prediction of what may happen , so we are also prophets and psychics.  We can do anything.  Next time we are concentrating on never underestimating our child, let's do ourselves a  favor and stop underestimating ourselves as well.  There is a power that comes from within that is beyond words.  Today suspend the guilt, the worry the uncertainty and celebrate. We are a group who becomes softer, the harder life gets, we become tougher everytime we are put in a situation that makes us feel weak.  We become motivated and energized by our challenges.  It's no accident that we can morph into things that are unexplainable.  My usual ending to my blogs is how lucky we are to have our children, today, lets flip it, how lucky are they to have us??????????

I am turning into such a sap, but I love it

Did you ever wake up and just out of no where, a wave of anxiety comes over you that almost knocks you the ground, and tries to consume you whole? That happened to me this morning, I started thinking about Christmas and how it used to be with so many loved ones who were once such a part of my life now gone, I started remembering how fun it was to have Christmas Club money and go out and buy presents and decorate and have that innocent spirit, and want to play Christmas songs and all that jazz, and lately it has just been such a different kind of feeling. Missing loved ones, never enough money for everyday expenses let alone Christmas presents, then the ripple effect starts with how am I going to pay this and who is gonna take care of Zach when I have to get another job, and ugh! All that BS, Luckily this morning I was able to stop it dead in it's tracks and realize it was just a trick my mind was playing on me. So I took a few deep breaths and started to pray for that miracle, today's miracle was just praying for the trust I have been yearning for. The trust that no matter what is happening outside of myself, inside there is a place of peace that no one can touch. Meditation is really under-rated, just quieting your mind and letting each worry pop in the air like popping
a balloon is a very powerful anecdote to anxiety. I also have a visual that I use that really helps me that I would love to share. I imagine myself in this room, that is decorated with all sorts of neat things, it is the perfect temperature and it smells of all of my favorite things, vanilla, sage, Cinnamon, citrus, baked cookies, any smell I can think of that brings
me happiness. So I am in this room and there is a washing machine in the room, I prefer my washing machine to look like a big red apple, ( don't ask, maybe its because I love my IPAD so much I don't know) So i go over to my big red apple and picture myself putting all of my problems and fears into this beautiful red apple that has that wonderful apple pectin smell. I visually can see the fears in my mind, money worries, health concerns, general anxiety, fear of failure,all of the stuff that worries me so deeply and put them in the machine one by one. Once they
are In that machine, it starts to play beautiful music and I imagine them all not disappearing but being cleansed, renewed, reformed, rejuvenated, cleaned and purified into managable parts that I can work with. I cannot tell you how much this visual has helped me. I program my mind that once these problems are put into this special machine, I no longer have
to worry about them. They are being cleansed. I use this technique a lot and it helps. It
helps me to fall asleep at night. I swear if I close my eyes and think deeply enough I can
actually smell the bleach ( which for some reason is one of my favorite scents). So I did this
this morning, then I found a beautiful rendition of How Great Thou Art sung by Carrie
Underwood and I bought it from the i tunes store. I grabbed a blanket and pleaded with Zach to
snuggle up with me. WE put our headphones on and listened as this beautiful humbling song
played into our minds. He layed with me so quiet and still and the words were so beautiful
they just stung my eyes with tears and I felt so humble. How small my problems all began to
seem. I guess my point is that we all have those feelings of dread and doom and gloom, and they are not fun, but it is what we do with them that matters. Sure we can get up and start to distract ourselves by shopping, cleaning, watching TV or whatever we do to take our minds off of our worries but isn't it so much better to acknowledge them and release them. If it needs to be done every day isn't it worth it? The next step is THE hardest and that is getting back on with your everyday life with the trust in place that I did something about them today. I didn't just mask them and try to forget about them. I mentioned before, these feelings come up for a reason, and if they don't come up, how are they going to come out. It may take everyday to do this but I am convinced that a few minutes in the morning or anytime during the day can make for a much more relaxing mood where I may actually have the right mindset to do productive things about my problems that are not a desperate attempt fueled by worry but are a genuine attempt fueled by trust. And THAT is what makes the whole difference. So for today again, I choose to trust that what is happening is happening for a reason. It can't hurt, it can only help. We are all a work in progress and I am so in awe of my son, who genuinely lives for the moment, he has no regrets of the past and no worries of the future, he is engaged right now in the present. He is so much more in tune with the divine. Our snuggling session this morning made me feel like I was in the presence of something so much greater than all of the sickening worries of the world. I was brought to my knees by gratitude and the feelings of anxiety began to melt away, until the next time, which I am sure there will be, but rather than fight it, I am going to roll with it and see where it takes me. Have a great day everyone, and keep that feeling of gratitude in your heart no matter how hard. Real life can be such a bitch sometimes, I have not become a sap, I just feel more comfortable and relieved handing over my control to a power that works FOR me and not AGAINST me. I have some very cute Zach stories that will be coming up in future posts, and I am so stoked about my new website, so stay tuned.

I hope everyone had a great Thanksgiving, I know I did. zach ate wayyyy too much, he is sort of hung over this afternoon, suffering from what I think is a food hangover.  I'm feeling much the same way today, kind of hard to get moving this morning, just sitting around drinking coffee and surfin the web.
I wanted to explain to everyone what had happened with the initial ad-click campaign I had going with Google Ad-Sense.  We were doing very very well, I scored almost 300.00 in less than a week and that is thanks to all of you faithful readers.  The money was going to be used for Christmas, because being unemployed does not leave much room for anything else but barely scraping by with the bills.  So one morning I was checking the balance on my Google Ad-sense account, and it read that my account had been shut down due to illegal activity.  Now I could not understand what illegal activity it possibly could mean, so I appealed the situation, they wrote me back saying that there are numerous reasons that they could do this.  Maybe someone who previously used this service was shut down, and if they happened to click on one of my links, that automatically made me disqualified, another possible reason was if two people from the same household, both clicked on an ad at different times and because they check the IP address of every click, that could have possibly been another reason.  They just would not give me any specifics as to why MY account was shut down, all I know is I made them 300.00 and they refused to pay me.  Can anyone spell SCAM?  I was so excited that I would be getting paid for doing what I loved, and very disappointed that they would abruptly shut me down and refuse to pay. Being that they do not have to give you a reason, I would advise against anyone joining their services.  It seemed too good to be true and well you know I guess if it seems that way it usually is. I did report them to the CA Attorney Generals office and I am going to leave them to take any action that they see fit.  There is no sense getting all riled up over someting I can't control.  So I want to thank everyone for their help, you all came through like troopers and unfortunately SOMEONE benefited from all those clicks, it just wasnt' me.  I joined with another advertising company who seems much more reputable, so please if you see their ads on my blog, feel free to click away.  This company starts you out slow, with some basic ads and the more traffic you generate, the more ads they will give you in the long run.  So it's back to square one.  I am going to be starting my advice blog, you have to know that this is something I always wanted to do.  I consider myself very intuitive when it comes to helping others, I may not have the right solution, but I can certainly help you maintain an attitude where it will move you in the right direction.  It's a passion of mine.  Since leaving social work a few months ago, i find that I miss the aspect of helping others and giving them motivation.  There are many things I do not miss but that is one piece that I really did love about my job.  I also studied tarot cards here and there for most of my life even back when I was a young teenager.  I really believe they can be spot on sometimes, and while they do not predict the future they give us insight and options into our issues, our strengths and our weaknesses.  I will be using them on my new sight as well.  I was informed yesterday by  good friend that mercury is in retrograde right now and that means this is not a good time to start any new projects, sign any contracts, and it is a good time to finish up old business.  Being slightly superstitious, I am going to follow this advice, so right now I am working on the new website and trying to make it ready to go, probably very soon.   I wanted to introduce it properly and ask everyone to please feel free to use it.  I am trying to work on getting some ads placed on the new one, and a pay pal donate button, so if you use it and feel it has helped you, feel free to donate whatever you can.  I am still trying to find my niche and make a living for my son doing something that I love.  I am hoping by giving a free service that will benefit myself and others this may be a catalyst into adventures that I would not even know existed if I didn't give this a try.  I have read some very wise quotes lately and I feel they have been coming to me for a reason, many of them saying things like "do what you love and don't do it for the money, if there is a service you can provide and you trust in the universe to lead you in the right direction, things will take care of themselves, money included."  That requires some deep trust but what have I got to lose ( except my house, my heat, my lights, my phone )  hahaha  just a joke.  Your life should be your career.  If you wake up each morning with anxiety and lack of enthusiasm for your job, it's a pretty good sign that you are not meant to be there.  I have done that for many years and it basically made me very resentful, very tired and I forgot who I was and what I really loved to do.  I am placing my ultimate trust in the universe, and I am inviting everyone to come along for the ride.  The website will be called "sprinkles of hope" it will be a sister of sorts to the good the bad and the beautiful, and what I am asking of you all is to keep following me especially if any of it resonates with you.  I hate to be weird and have a waiver saying I am not responsible for anything if I give someone some really shitty advice.  I am doing this with my BEST intentions, and I trust and have confidence that I can at least give some positive spin on anything that is not going right in your lives.  perhaps someday I will use this whole experience to write my first book that is a real dream of mine.  What I need from you all is participation and feedback, lots of feedback, good or bad, I can take it.  By all means share share share, if you know someone who needs some help and has no where to turn, point them in this direction.  I can only do this with readers and referrals,and you guys are the ones who can do that for me.  I love writing this blog, it makes me feel so alive.  There was a time when I was so afraid to share anything that I wrote, i was just too embarrassed.  I don't feel that way anymore, I feel empowered every time I sit down at this keyboard and begin to tap away.  Remember there will be no judgement, no breach of confidentiality, no ulterior motives, just a desire to  combine what I feel is my gift to share. So by all means you can start sending in any issues to my email of lshusta@aol.com just put sprinkles of hope in the subject title.  I will be compiling them and working on them and when the time is right, I will be posting and hoping that there is some fun, some healing and some good reads for everyone.  I can't do this alone.  So Bring it!  Love to all and please continue to follow me on this blog, if you haven't subscribed, please do so. 

Giving up or giving in?

I was thinking a lot about life last night and how nothing at all is ever certain. One day your up, the next day your down. How can it be that things outside of ourselves can affect how we feel so intensly? It really is no wonder how sometimes we think we are going crazy. You get a letter of good news or you somehow come in to a little extra money, via a rebate or bonus or whatever and then you turn around and something goes wrong with the car so the money you got is automatically spoken for. There are two ways to look at this. The first one is to bitch and say I never get a break, I always get brought down no matter what good happens, or you can look at it and say Wow what a lucky break, I got that extra money just in time so I could get my car fixed. I have really been going back to the Course in Miracles lately and it's wise teachings tell us that everything means nothing. WE give everything that happens in our lives the meaning, therefore we are so much more in control of our lives than we think we are. If something happens in our lives and we attatch the meaning as something good, that is certainly a step in the right direction but then something happens and we attatch the meaning as something bad, then the cycle perpetuates, one day is good, one day is bad, sometimes your up, sometimes your down. What would happen if we just accepted everything as "this is what is supposed to happen" and trust that it is part of a plan that we have no business trying to
control. This may seem like a paradox but the more you give up trying to control the events that happen in your life, the more in control you are because you have learned to accept the natural flow. The pressure is off. imagine how liberating that would be, to say the pressure
is off, I don't know what is supposed to happen in any situation, but I am just going to pray
for a miracle, no matter what. Whatever is happening in my life right now," Dear God show me
the truth about this, help me to surrender my control over any situation, I pray that whatever
is happening now is part of YOUR plan for the greatest good of everyone involved. I will
step out of the way and let YOU take over. " Then I don't have to worry anymore because I
know that if I let Him lead the way ( and Him can mean whatever you want it to be,God, Jesus,
Universal Power, Source etc ) I know that I am allowing a power in to my life that knows
exactly what is best for me and exactly what is best for everyone" This is deep and hard
work. We are so conditioned to think that we know what is best for us at all times, but how
many times did you get what you thought you wanted only to realize you were wrong. hence the
old adage 'be careful what you wish for' How many times did something happen to you that you
thought was the worst thing in the world, only to later realize that if it weren't for that
event you would not be the strong person you are today. I think about accepting Zach's autism
a lot when I study the Course in Miracles. I do not claim to be a Zen master by any means
and very often I revert back to old ways of thinking and feeling, and that is when my life
seems out of control. i think it's all about being honest. i don't think God wants us to
struggle, I think he just wants us to trust. If something in your life is so painful that you
feel like you can't handle it, the best thing to do is say God, I know that there is
something for me to learn from this experience, I am willing to do so, but could you please
have it shown to me more gently? One pattern I have noticed, in my life anyway, is that if I
don't handle a situation in a way that gives me and the other person peace, the situation
will just keep coming up again and again and again, the characters may change but the lesson
is still there. If we keep doing what we have been doing all along, why would we possibly
think the results are going to be any different. Thus the definition of insanity. So for
this Thanksgiving holiday let's all give it a try, lets be thankful for what we have and lets
not be so dependent on control and results. Our prayers are still very important, but rather
than pray for specific things, let's give ourselves a break and pray for the highest level of
greatness for everyone involved. Whatever that may look like, and whatever that may be. I
used to pray to God to cure Zach's autism, I prayed and prayed and tried everything I could
find on the outside world to make that happen. I now pray to help me to learn and grow from
Zach's autism, to accept him as he is and be so grateful that his care was entrusted to me.
Quite a different spin on the same thing. If I were still praying for him to be cured, I
would have missed out on all of the greatness that he has brought into my life and the lives
of others.
This approach to life is not giving up, it's actually just the opposite, it is giving in.
There is greatness planned for all of us or we wouldn't be here, our job, is to get the hell
out of the way and allow it to happen. Its not easy and you will find yourself reverting back
to old ways now and then, but that is also part of the process. Then you will see how those
old ways do not serve you and you will drift peacefully back to full surrender, and Bam!
lesson learned, time to move on to another. If this does not resonate with you by all means
there are plenty of other ways. I am not trying to be a preacher, God knows I am struggling daily with my own issues. But it IS food for thought. Speaking of food, everyone have a
wonderful Thanksgiving, enjoy, and don't forget to BE GRATEFUL.

War and Peace

Sometimes when I tell people my son has autism, they immediately think of Rainman.  They ask if he could count toothpicks when they spill on the ground,  or if he could count cards, or whether he is an "excellent driver"  (smile)
Rainman is considered a savant and it is a very rare form of autism.  The movie was written about a real young man, but that condition is rare. Although Rainman did serve to bring awareness to autism ( and this was before the autism explosion) I think sometimes it gives people a distorted view of the autistic mind.  I usually tell people that Zach has none of the characteristics of Rainman, and then it gets hard to explain exactly what autism is and how it affects children.
I notice though that as Zach gets older he is very aware of changes in his environment at home.  He can walk in the house and notice immediately if something is missing.  It's usually something that we would think was insignificant, such as a key chain that is usually on the coffee table or something as trivial a pair of scissors that are usually laying on the coffee table.  As soon as he comes home from school he walks in the living room and immediately demands his ipod, ( the one he throws in my purse every morning when he runs out of the shower nude) even though he doesn't use this one he demands it back and plugs it into the computer where it will charge all night.  He then scours the coffee table for the remote controls, There are four of them and if they are not within his sight he will start giving me the sign that something is missing, and we have to find all of the remotes and put them together on the table. Most of these little quirks revolve around our coffee table.  He has two little baskets of electronic toys on the table such as a Bop it ,hand held Simon, hand held Poker, little portable radios, and lots and lots of headphones.  These two little baskets are his world and I would NEVER EVER mess with them.  I don't care how messy they make the room look or how unorganized they are, I respect those baskets as his "junk drawer".  I have always had junk drawers and as many times as I try, I can never throw anything out of them, I mean who knows when you might need to use that little roll of measuring tape, or the tiny screwdriver key chain, or the cool looking ink pen that no longer works, the half full box of birthday candles, the Santa clause pin that you will wear when Christmas comes.  You get the idea.  I think we all have them and Zach is no exception. So this is as off limits to me as a diary would be to a young girl.  I didn't realize that his bed room held the same allure.
So one night Ron and I are sitting in the living room watching TV and we begin to hear a ruckus upstairs that sounded like a herd of elephants.  We looked at each other and said "what the hell is going on?"  so we run upstairs and Zach is in his room frantic.  He is pulling all of his toys ( that he never plays with) off of his shelf in his closet, he has his books ( we kept every book he ever had since he was a baby) strewn all over the floor he is in total panic mode crying, shaking and signing "book".  I was very confused and I hate to see him in that kind of agitated state.  The fact that he is non-verbal can be very frustrating for him when something is bothering him.  I can only describe his state of mind as fight or flight, he was absolutely beside himself, frantically emptying out his dresser drawers, pulling his mattress off the frame and looking under it.  He was jumping up and down so hard I thought the floor was going to cave in, meanwhile making the sign for "book" "book"  "book".  Ron and I are saying " Zach look here are your books, what is the problem?" but he was not satisfied.  I was desperate and I called my mother, because sometimes when I was at work my mom would wait at my house for Zach to get home from school and while she was waiting ( bless her heart) she would straighten up the house and put a basket of clean laundry away, do up my dishes, throw a load in the washer or whatever she could do to help.  So I call her on her cell phone and I thank God she answered.  I said "Mom Zach is busting a spring here in his room and signing book over and over, I don't know what to do, do you know anything about why he might be doing this?"  She got very quiet for a minute and at first she said "No" then she said " Oh my God, I took a couple of those old baby books today to give to your Aunt Ruthie's new granddaughter"  She said "Lesa those books were in stacks all over his bedroom I only took about three of them  there is no way he could know they were missing"   So I held the phone out to let her hear his frantic panic and anxiety attack, while he was still tearing his room to shreds.  My Mom happened to be out shopping with my sister-in-law in Wilkes Barre at the time, so she had to call my aunt Ruthie to find out if she still had the books or if she had given them to her granddaughter Maggie.  Luckily Ruthie still had the books, so my mom had to leave the store, drive to Edwardsville pick up the books and bring them to my house. How did this boy walk into his room, take one look at the hundreds of books that were stacked all over his room and immediately realize that three were missing?  It was quite an eye opening experience.  We all have a little Post Traumatic Stress Disorder after THAT episode.  I admit I was in awe of his ability to be able to do that, and maybe he does have a little bit of Rainman in him after all.  My poor Mom felt so guilty, who would have known?  Once she brought the books back, Zach immediately calmed down, he began smiling and everything was right in his little world again.

Real Men like Freaks

Ok, here's a good one in keeping with the same vein as the vodka for lunch post.  Now don't forget at this time, I was working full time and our mornings were very very hectic.  It was usually me pushing and prodding and yelling and trying to motivate Zach to be somewhat independent.  He is so dependent on prompts, it's cute but it makes for a lot of wasted time.  For example I tell zach to go brush his teeth and he will bring the toothbrush out to me to show me that there is toothpaste on it, and I have to say " Ok Zach that's great, now go in and brush" and he will go in and do two strokes and come out again and show me, and I will have to say, " yep good job, keep going, and he will run in and do two more strokes and come back out, and well you get the picture.  So this goes on and on all morning with everything.  Put your deodorant on, and he runs out ( mind you he is 100% nude when he does this ) with his deo and I have to say Ok buddy good job, now put it on.  So this goes on every morning.  I started really encouraging him to be independent about picking out his own clothing.  I will set out a pair of pants, clean underwear, and clean socks and his job is to find a shirt, get dressed and get his coat and hat on with minimal prompts.  Also as an aside note that has nothing to do with the story but it very funny, Zach has an ipod that he doesn't use but keeps plugged into the computer to charge.  For some reason he insists that I take this ipod with me every day, so if he hears me getting ready to leave he will run out of the shower soaking wet and grab the ipod and throw it in my purse and then run back into the shower.  It's just a weird and wacky thing he does that we no longer question, but I digress.  So anyway one morning he gets finished up, took his shower, ran out nude  threw the ipod in my purse, brushed his teeth put his deo on and got dressed. I was very proud of him for being so independent.  At this time a friend of ours opened a boutique and she must have gotten a lot of promo shirts.  Many of them were Michael Jackson King of Pop shirts, both Zach and I love Michael Jackson so she gave us a big bag full of them.  By the time Zach was done getting ready he had already had his coat on and I didn't think to check his shirt.  So he goes to school and I go to work just like everyday.  When I went to pick him up at my mom's after work, I walked in and everyone was laughing.  My dear auntie from Indiana was in for my niece's wedding shower and I couldn't understand what was so funny.  I also couldn't understand why Zach was wearing some kind of old sweat shirt that I know he would never wear.  My mom handed me a bag with a shirt in it and a note from the teacher.  I open the bag and look at the shirt and I almost fell over.  The shirt said in BIG GREEN NEON LETTERS  REAL MEN LOVE FREAKS and then on the back of the shirt it said THEY JUST WON'T MARRY THEM  along with a picture of a naked woman who had whipped cream covering all of her private parts.  This shirt must have been mixed in with the bag of Michael Jackson shirts.  Now Zach can't read and he is not a pervert. He must have put it on and put his jacket on immediately afterward, which I encourage him to do.  The note from the teacher was very good natured.  She wrote that they needed to change him due to inappropriate clothing that goes against the dress code.  She also wrote that she was SURE I was not aware of this.  So my attempts to foster independence and my always being in a rush failed again.  Now, not only do I have to check his backpack, but I have to check his shirts as well.  The only thing I do know for sure is that his teeth are brushed because he makes sure he keeps me posted on every single stroke of that toothbrush.  Oh How I love that Kid!  He keeps me on my toes but man does he make me laugh.

Vodka for Lunch?

This is one of those stories that never hesitates to bring a laugh. I would say Zach was maybe nine or ten at the time, and I signed him up for The YMCA special respite. It ran once a month on Sundays and it gave parents a chance to go out and have little fun for a few hours while the kids played at the Y, they swam and watched movies, played basketball etc. My job was to provide a lunch and a snack, and swim suit and towel, no problem right?
Well the camp ran on Sunday afternoons, so it was Saturday night and I was down at Ron's restaurant doing coat check. I usually brought some magazines and candy for myself to keep busy while I was working, so I just grabbed Zach's tote bag. During the course of the night one of the wine salesmen came in to have dinner. I checked his coat and he gave me a few samples of grape and green apple vodka, just little airplane bottles that he wanted me to pass along to Ron to try and possibly put on the drink menu. I thought nothing of it and stuck them in the side of Zach's tote bag. When the night was over I packed up all my magazines and crossword books and also put them in the tote bag.
The next morning was YMCA day, so I took out my stuff, packed a lunch, packed a swim suit and towel and sent Zach off for a day of fun, while Ron and I went for a bite to eat and maybe a drink or two.
While we were sitting at Chillis enjoying our time alone, it hit me like a ton of bricks
" OH MY GOD, I SENT ZACH TO CAMP WITH TWO BOTTLES OF VODKA IN HIS BAG." I didn't know whether to laugh or cry. WE just burst out laughing. It was so innocent and I kept picturing the counselors saying " OK Zach go get your lunch and him coming out with two bottles of vodka" I was mortified but I had no way to call them, I had no way to explain, so we just finished out the day. I was too embarrassed to go in and get him when it was over, so I sent Ronnie in. Zach came out and we checked his bag and the two little bottles of vodka were still in the side pocket untouched. I don't know if they ever saw them, or if they saw them and just didn't say anything, or if Children and Youth was going to be making a visit to my home the next day. I was such a nervous wreck, I think I drank both of those bottles of vodka on the ride home. Well luckily no one from Children and Youth came, but I didn't send him back to THAT camp. Now I diligently and obsessively check his backpack every morning before he leaves for school and I still can't help but laugh when I picture the possibilities or the look on the counselors face when he unpacked his sandwich, bag of chips, cupcake, banana and bottle of vodka? Oh man, that was a close one.

Oh those impulses

Anyone who has a child with autism knows first hand how impulsive they can be. There was a time that i had to watch everything he did, especially while we were out in public. On the days that I HAD to take him with me to the grocery store, I had to watch his every move, or he would sample anything he wanted. I would see a friend I know at the store and we would try to say our hellos, meanwhile I would be watching him like a hawk so he didnt just open up a box of crackers or crack open a bag of chips. A few times I heard the familiar PSST! and noticed that he was opening soda bottles. This was a phase thank God, but it went a little further than that. Zach had a real obsession with urinating in any bathroom he could find. Now it took us a long time to get him potty trained so that was one obsession that I allowed. Everywhere he went he had to urinate in their bathroom, and that included every Dr. Office, every store, every house I took him to, everywhere. So one day he and I are out taking a walk through the neighborhood. It was a beautiful summer day and people were sitting on their porches and people were walking their dogs, just a really nice night. So we start walking and lo and behold I see an old discarded toilet sitting in someone's front yard. Dear Lord, Of all things. I spotted it about one hundred feet away and so did he. I guess the people were
Putting the toilet out for the garbage the next day. So here I am bear hugging him past the toilet seat. He was pulling away trying to use it and I am laughing and panicking at the same
time. People were staring at us, because he was not a toddler by any means, he was at least eleven or twelve and I am holding him for dear life walking past the toilet. I finally get
him past it with every bit of strength that I could muster, meanwhile trying to explain to him
why there was a toilet in the front yard in the first place, which I admit was a little
strange to me as well. So we keep walking and we walk on past a porch with about six or seven
girls ( early twenties ) sitting out there smoking their cigs and trying to act intimidating.
There was a little girl about four years old on the porch with them. AS we are walking by
Zach notices a jump rope lying in the middle of the side walk. He picks it up and very gently
tosses it off the sidewalk into the grass, because he felt it should not be laying on the
side walk and he was right. So we continue to walk and then I hear it " Oh sure, yeah don't
worry about it no problem " Now I have been around along enough to know when I am hearing
sarcasm, and this was definitely dripping with sarcasm. If Zach had done something wrong, I
would be the first person to admit it and reprimand him. He gently moved a jumprope that
should not have been laying in the middle of the sidewalk in the first place. Now this little
bully waited until were at least two houses past her porch before she started saying
something. I am sure she was trying to impress her friends, but she didn't realize that you
don't F with the mother of an autistic child, so I spin around and yell " What did you just
say?" So Miss toughie with her tattoos all over her neck said " he just whipped my daughters
jumprope and he didnt even say he was sorry." I repeated in my most sarcastic tone "whipped
her jumprope? He moved it off the street and your lucky I didn't trip on it." I then said "
he has autism what is your excuse? And if anyone of you on that porch has a problem with what
he just did come down off that porch now and we will settle it QUICKLY" I also whipped off
my Jackie O sunglasses for a dramatic effect. Well not one of those girls had a problem with
what I said, they all sat there tongue tied and little miss bully who's bark was much worse
than her bite, yells " Whatever! Have a nice Day " To which I reply " Yeah that's what I
thought" Now could I have handled that better? Probably, but it felt so good to put that
little snot in her place and maybe she will think twice before she opens her mouth and tries
to show off for her friends who obviously thought she was wrong and did nothing to try to back
her up. So I went home, mad as a hornet and told my fiance about the whole experience. He
asked me to please re-route my walk at least for a little while.

passions

There has been a lot of controversy whether an autistic child's obsessions are actually passions. Where do our own obsessions become passions? What are we passionate about?  This brings up a lot of interesting food for thought.  It reminds me of the little boy we had in pre-school who was diagnosed with aspergers. This sweet little guy was over the moon for vacuum cleaners. He spoke of them constantly, he discussed makes, models, brand names, bagless versus bagged, he even had opinions on swiffers and swiffer jets and had quite a collection of old vacuum cleaners handed down from his grandparents. To the adults around him this just seemed bizarre. He wanted to kiss the vacuum every day and run the dust buster for his teacher. His whole little world was consumed with his favorite machinery. Now this can be looked at in a few ways. Is it normal to want to kiss a vacuum cleaner? Well not to the average child, but by telling him he couldn't indulge in his favorite passion, you could see that a little bit of his spirit was being broken.  It has been embedded into our heads that we must act appropriately at all times and day dreaming about vacuum cleaners certainly did not fit the bill. It was ok for little girls to love their baby dolls and their accessories that came along with them. It was Ok for the little boys to talk excessively about their cars and monster trucks, fire engines and police cars, but poor little ( lets call him Joey for sake of anonymity) was made to feel different and deprived of his passion by concerned but well meaning people. It broke our hearts to say the least and got us thinking. Myself and Joey's teacher had recently attended a fabulous seminar about autistic children and their passions. We decided to work Joey's passions into his daily learning and what a difference this made. Rather than make Joey write his name ( which at that time meant nothing to him ) she started having him trace the names of his favorite vacuum cleaners; Hoover, Bissel, etc and then show him pictures of the vacuums. Joey then worked for his time to indulge his passions and it made all of the difference in the world.  This was met with some opposition from the behavioral agency he belonged to, who wanted to completely eradicate this behavior.  This was a huge lesson for me.  What if someone told me or you that something that brought you so much pleasure ( and was relatively harmless) was so bad and so wrong and that you would actually be punished if you tried to pursue your passion.  Can you imagine how that would make you feel? Could you imagine how further isolated and different you would feel if someone told you, you cannot read, or knit, or play a sport or collect comic books or whatever you love to do because they did not feel it was socially acceptable?  WE need to be aware that these children are just as important as we are, and that if something grabs them and makes them happy, who are we to say it's wrong?  Sure maybe it has to be shaped a little and toned down so that they can also interact in the world and do the things that will help them to be independent but it is a matter of respect.  I am guilty of it myself.  Before I knew better I used to do the same thing, so this is not to berate anyone who felt that they were doing the right thing by trying to extinguish behavior that they thought was inappropriate for this world.  It's about living together and respecting our differences.  When in doubt, think of how you would feel if someone told you that you could no longer twirl your hair when you get nervous, or you can't pace the floor when you are trying to think. For us we call them coping skills but for autistic children we call them stims.  WE were all put here to contribute our part to the world.  Let's accept them for their uniqueness.  After all they are much more spiritually developed than we are.  Rather than change them, let's join them and see what they can teach us.  Who knows there may be a hidden vacuum cleaner genius inside of us waiting to come out.  Its time we all learned to think outside the box and who better to teach us?

This whole Penn State scandal has me sickened. Why would these people who are so on top of their game do something so vile and violent against children, many of who were "at risk" children. Are these sick urges so strong that they would risk falling from the highest place they can be and with no regard for anyone, single handedly ruining these children's lives. Was coaching one of the most popular college football teams in America not enough of a thrill for them? Didn't they get their fill of violence from the game? And the cover ups, are these men so loyal to each other that they would sacrifice the life and trust of young boys who are considered high risk? The whole thing makes me lose faith in all that is good. The spirit of teamwork, the adolation of fans everywhere, and still it wasn't enough. The whole mess brings me to a subject that has been brought up to me quite a bit in the last few months. That subject is residential care for my son, so that I could have some sort of life and so the state could make money from him. Now if I hand Zach over to the state, he will be eligible for all sorts of things. Food stamps, clothing allowances, recreation, and a place to live independently from me. If I keep him home, basically I am on my own. Is there something wrong with this picture? Why does this country value splitting up families? Call me cynical but if anyone thinks I am going to turn my precious son over to some strangers who are getting paid to care for him in light of all of the abuse and maltreatment I have seen just in the past two months, they have another thing coming. Kids like Zach who are nonverbal and so gentle in their disposition are the country's MOST VULNERABLE aside from the elderly who can't care for themselves. What would make someone so arrogant as to think that I wanted to dump him off like a bag of old clothes that are going to Good Will. I was given a job to do in this lifetime and that is to love and care for a child who is not able to do so himself. Is this job difficult? You better believe it. Do I doubt myself? All the time. Would I trade him in for anything in the world? HELL NO. He is my boy and I decide what is best for him, I tuck him in every night, I decide when he needs to be disciplined, not the state. You can call me cynical and maybe I am, but all I want is a little help to maintain him to stay home with me. My trust level for well meaning people is fine, as long as I am the filter that stands between them and my child. I would never put my son in harms way. I refuse to take the chance. People are basically good, but is it worth it to me to find the one bad apple in the bunch? I have been put on this earth to protect that boy and that is what I am going to do and I am going to do it until I take my last breath. I have Ronnie and my parents, my brother, my aunts, uncles, nieces and friends. We are the professionals, and we will make the decisions about him. Thank you very much!

Miracle or Grievance

Yesterday was a strange day. All day long I was haunted by anger, rage and that hollow feeling you get when you know you have been unfairly wronged. it wasn't anything or anyone specific, It was just one of those days when everything seemed unfair and I had a lot of thoughts of revenge and what not. Obviously this is not a place where I want to be. i kept wondering why am I feeling this way when I am really making a conscious effort to change, surrender and accept. It really bugged me because the feelings appeared to be valid.
I started to remember some really profound lessons that I learned when I was studying the Course in Miracles a few years back. For one, it is good to know that this stuff comes back to you when you need it, but if you don't make a valiant effort to continue to be a student, you don't have access to it's wise solutions instantly, which is I guess what I need to keep working on. Anywho....... I remembered a very wise clause. " do you want to be right or do you want to be happy?" Most days I want to be happy but yesterday I just wanted to be right.
It's amazing how comfortable the feelings of being a victim and a martyr can be. As the day went by and I allowed myself to wallow in my anger, I started remembering other quotes and clauses and they kept coming back to me. " you can't change the thoughts unless you acknowledge them" " feelings need to come up before they come out" " when you plan an attack on someone even if it is mentally, the sword is really just coming down on your own head"
The prevailing message I was getting was that it is OK to feel these emotions, but it wasn't OK to keep them. The Course in Miracles states that all you have to do is show up for life with a willingness to believe that there is something bigger than what is really happening, and all you have to do is acknowledge where you are falling short, ask for a miracle and let the rest go. Sounds easy. I really was not in the mood for a spiritual cleanse yesterday, I just wanted to wallow in my anger.
I know from my own experiences though that wallowing in anger sets up a ripple effect and no matter how much I think that my silent anger is not affecting others around me, I could not be more wrong. It affects everything. Every little disappointment is magnified and almost justified when you are coming from the place of anger. You start to set up self fulfilling prophecies. Your outlook on life is directly related to what happens to you in life, it is
certain. So what do you do?
Well towards the end of the day, I realized that is wasn't fair to myself or my family to be walking around with such toxic emotions. By allowing myself to feel the emotions all day, I actually got sick of them by the end of the night. There was a part of me that wanted to start berating myself for having these feelings in the first place. After all I am trying to walk a different path by making some major changes in my life, changes which do not include being angry, resentful, jealous and revenge seeking. I decided not to keep these feelings, I don't want them. Again, I started to remember the teachings of a Course in Miracles, it is not up to me to change the feelings. All I have to do is allow them to come up and then affirm that they do not serve me in any way. This is different than stuffing them down and pretending that they don't exist because we all know THAT DOESN'T WORK! I got out a pencil and paper and in a good old fashioned way, I wrote down the names and situations of EVERYTHING and EVERYONE that was bothering me. By the time I got to the end of the list I started to feel some relief and release. The last person on the list was myself. If I was going to call people out on being assholes, I might as well call myself out as well.
Ironically the daily message that Marianne Williamson, (my favorite author and interpreter of A Course in Miracles) shared with her fans yesterday was this and I quote

Marianne Williamson

‎"You can have a grievance or a miracle; you cannot have both." (A Course In Miracles) Any time we indulge an attack thought, we're deflecting a miracle. We all have those thoughts, but the point is to be aware enough to surrender them. "Dear God, I surrender this thought to you, for I would see the miracle that lies behind it. Amen."
So that's what I did.  They say when the student is ready the teacher appears.  I released it all up and then I ripped up the paper that held all of the ugly but NECESSARY emotions.  I feel better today, so I thought I would share.

Be still

It's weird not working, I wake up every morning and look out and think oh my god, thank you for not making me go out into the world and deal with all the bullshit of the day.  Do I deserve to not work?  I don't want to work for someone else and have them make decisions that impact my life, without even taking my life into account and that is what happens when you work for someone else.   It really is drudgery!  Sure you meet some great people and make lasting friendships but by believing all the hype about having a steady job with secure income and secure benefits etc, it really is a lie.  Nothiing is secure, nothing is steady and relying on someone else to decide what you are worth just makes for misery.  I can't help but judge myself sometimes because I am so conditioned to believe that your worth is based on your work and what you do and how lazy you are or aren't and whether or not you are a good little compliant employee.  UGH!  I get mad at myself sometimes because I am home alone and LOVING it, playing around listening to music, writing, thinking, dreaming, I can't help but wonder if that is so bad?  Why do I sometimes feel like a lazy bum, when I am doing what I love to do and being a better parent, because of it.  I am no longer exhausted and resentful, and that has to be a good thing.  There has to be a place for me in this world where I can earn and enjoy making my living.  There has to be a place for all of us where we use our God given talents to contribute to our lives and our work and not resent it.  I am on a mission to find this middle ground, and I am on a mission to put all my thoughts about what I "should" be doing on hold, and kind of just live and be and trust that the right opportnity has already come along and it isn't something out there, it is something inside that I already know but will only be revealed to me if I am open enough to allow it to come out.   Much of this self discovery is due to my son's autism.  He deserves a mom who is happy and well taken care of inside and out.  I never lost the ability to want to play.  I love to dance around the house singing at the top of my lungs, or sitting home alone, playing with my hair and a curling iron and seeing what I can do with no one around to bother me.  I love stealing a cat nap or watching my favorite old sitcoms or music videos on you tube.  I love to write and think and explore where I am and what got me here.  Everyone deserves this kind of life and I would be the first person to encourage someone to take that chance.  I have a ways to go wih accepting that I am worth it and that I do not have to struggle and fight and resent and earn the right to play.  Usually my best ideas, plans, luck etc come out when I step aside and allow.  When I give up the struggle and surrender to the impulses inside of  me that say, relax, take it easy, "be still and know that I just 'am'" Be still and know that I am , Be still and know that I am Be still and know that I am .  Yet it bears repeating one last time, Be still and know that I am .

The Ipad

Well it's been about a month since I opened that sleek little box, and to say I am amazed is an understatement. I sit and listen to those fingers tap tap tapping on the keys and my heart just explodes. This was a different experience, one I didnt force on him, I got the little miracle machine, I downloaded some apps, gave him permission to use it, and all of a sudden he just welcomed it into his world.
He puts his headphones on and I sit in awe watching him play his color slaps and shape slaps, he is popping balloons while they count, he is answering questions about what emotions the people in the pictures are feeling, he is matching sounds to their source, answering questions about who helps you when you are in trouble, who do you go to when you are sick, what is a healhy food, and what is not a healthy food. So much communication, so much information coming out that I didn't even know that he knew. One month ago, I was watching him wander around the yard with his music, now I am watching him activate apps, clap for himself, sit focused for hours at a time. He is asking to take the ipad in the car with him, he sits on the porch tapping away. Who would have known? Last night I was watching him and he actually had this very blog up on the screen and was looking at it. I am hearing sounds, that I didnt even know the ipad could make. This is no accident, this machine is a miracle. I can't help but be in amazement as in my previous post, I said, I had zero expectations, for this. i was going to let it go and see what happened. If he didnt like it, I would sure put it to good use, but I presented it to him at a point of surrender. I let go and didnt force it on him, and lo and behold, he loves it and it is showing me how much more is stored up in that brain of his that I was unable to gage due to the lack of speech. Now since I am getting older, and smarter about the ways of the world, I can't help but point out the life lesson here.
Surrender! Sure it's great to have goals and hope for the best, but when you are objectively able to live your life in such a way that you realize there is a higher source that knows what is best, you can take those chances without becoming dependent on what YOU think the outcome should be. This is where I think we all set our selves up for failure. How many times did I put my faith in the actual object or desire I had only to be let down again and again. maybe the trick here is putting our faith in faith. Could it be that easy?

Autism Moms and the Workplace

Autism Moms and the Workplace

Educating the masses

Yesterday, I was at Walgreens picking up Zach's prescriptions.  For some reason the man behind the counter insisted I owed him a co-pay even though he has two full insurances.  One covers the cost of the prescription and one covers the co-pay.  Now I have been getting and keeping track of my boy's meds for over ten years and never once did I have to pay a co-pay, so I was a little perturbed that he just kept insisting that I had one.  I asked him to run it through again, with both insurances, I am positive he just went through the fake motions, because within a minute he told me that the store was indeed correct and the co-pay was denied.  Granted the co-pay was only about 6 dollars but it was the principal of the thing.  If I had to pay co-pays for all of Zach's meds, I would need to take out a second mortgage on my home.  So I payed the guy begrudgingly and decided to call the insurance companies.  I called Geisinger Plus, and was put on hold for at least a half hour, listening to the lovely elevator music and the reasons why I absolutely need to get a flu shot.  Finally I talk to a live person and I explained the situation to her.  She got a little snotty with me and told me that she cannot speak to me about my son's medications.  He is over 14 and he needs to be the one to ask the information.  Without trying to make a fool out of her, I told her he is non-verbal and doesn't speak.  So she then asks me if I have power of attorney over him.  My question to her was "Power of Attorney? over my minor son?  She asked if Zach was home and if she could speak with him.  I couldn't help but laugh, and I told her he was at school, but promised her that even if he WAS home, I am sure he would allow his mother to get information on him, since he will not even hold a phone to his ear.  Again, I am put on hold.  More elevator music, more pressure to get a flu shot.  She comes back to the phone and states that she spoke with her supervisor and he is going to send us paperwork out that Zach needs to sign giving them permission to speak with me about his medication information.  I informed her that Zach cannot read or write, and at this point I was picturing me reading this long HIPPA law to Zach and asking him to sign it and I started cracking up laughing.  So again I am put on hold, more elevator music and MORE pressure to get the damn flu shot.  So she gets back on the phone and said her supervisor needs to cover all the bases and even if Zach scribbles on the paper with a crayon, that  will suffice.  So that was that, I was not able to get a single bit of info about Zach's meds until he scribbles on a piece of paper and I date it.  I wonder if they will let me write his name with dots and let him connect them so he could write his name legibly. ( To be continued )
I couldn't make this shit up if I tried.

To all of us

This was a poem I wrote about 5 years ago, that I just found.
Poetry: Autism
by Lesa Shusta

to all of us who went on with our everyday activities and smiled when we knew deep down something was very very wrong
to all of us who did the secret research when no one else knew
to us who tried as we might but couldn't deny it
to all of us brave enough to face the truth
and hear "those words"
and still went home and carried on..... making dinner, paying bills going to work, grooming ourselves and our children, while our worlds were spinning out of control
To us who accepted, protected, fought, cried, begged, and wondered how we were going to tell our boss, our parents, our grandparents, our friends with typical children, strangers in the community
to all of us who had the unwavering hope in the beginning that we would beat this
to us who have lost sleep, canceled plans, dreaded simple activities such as haircuts
to all of us who put on a brave face
and to all of us who broke down in public
To those who changed a diaper much larger than a diaper should ever be
and who go without every single day
who groom our teenagers with love and dignity
to us who are brave and petrified at the same time
who know the meaning of the term a hard days night all too well
who breathed a sigh of relief that a car was not speeding down the road when our child darted out
and who went on
and go on
everyday
you are not alone
we will not fail our children
we will pull the strength from somewhere...
We will pull it from each other
Lesa Shusta

How Life has changed

Well it's been two months now since I have decided to leave my job, and give myself some much needed respite from the rat race.  I wake up in the morning and there is so much peace in the house.  All of the nonsense that used to go on every morning has miraculously disappeared and I am starting to realize where much of the sludge came from.  It's hard to explain just how difficult it is raising a child with autism.  Routine is so important and those mornings when times seems to fly by, those kind of mornings where you stand by the cofee machine waiting for it to get done and you look and 20 precious minutes have gone by and you have done absolutely nothing.
Some mornings I would send Zach into the shower while I ran around trying to pull my self together ( a task that gets harder and harder as the years go by) I would give him about 20 minutes in the shower before I would go in and supervise and make sure he is washing up and not just playing around.  So I would hear the shower running, knock on the door thinking that he was in the shower, only to find him sitting nude on the toilet, with a towel over his head laughing his ass off.  These moments are sweet and funny but not when you have that constant tick tick tick of the clock in your ear.  So I start yelling, Zach!!!!  The bus is going to be here in 15 minutes you still have to shower, take your meds, eat, brush your teeth, get dressed, and then start your routine of finding the perfect electronic music device that you are going to take to school that day.  UGH!  So the panic would start to creep in, and I would start pushing and prodding and put him in the shower and wash him up my self, ( yep thats what I have to do ) Meanwhile anything I did myself to my hair or makeup was imediately ruined by the steam of the shower and the sweating and panicking of not getting to work on time.  Zach has no concept of time, nor does he care about time, he moves along slowly enjoying the cool water and the soapy loofah while I am getting out his meds, putting toothpaste on his brush, running outside to my trunk to get his lunch and snack that I had to hide so he wouldn't wake up in the middle of the night and eat it.  I still have to get dressed, get my stuff together, I go to get his clothes that I carefully laid out the night before, only to find that he found them and threw them down the cellar and mixed them nicely in with the dirty laundry laying in the basket.  I try to find him different clothes only to realize that they are all thrown down the cellar and mixed in with the dirty clothes.  By this time, I am going through the clothes trying to find the cleanest dirty ones, throw them in the dryer with a fresh dryer sheet, get him out of the shower only to find that there are no clean towels, despite the fact that I just washed them all the day before. (Zach has a habit of getting up in the middle of the night, and he has himself quite the little party, he takes a few showers, changes into new clothes each time he does and throws the clothes and the towels in the basement when he is done with them.)  So I am doing all of this, meanwhile the damn cat is so pissed that I haven't fed him yet, he is running through my legs trying to trip me.  I am drying Zach off with my robe, because it is the only dry thing in the house, I convince him to please take his meds before he brushes his teeth, cuz,  well it just seems like it would be more pleasant for him that way.  He takes his meds,, starts to brush his teeth, I run upstairs and look in my closet and hate everything I own, plus I look like I just ran the new york marathon and I figure you can't shine shit, so I throw on whatever I can find, not even remembering that I may have worn the same outfit one day prior.  I come downstairs and Zach is still nude brushing his teeth and taking his own sweet time.  I run down the cellar to get the clean dirty clothes out of the dryer all the while looking at the huge piles of laundry that will be waiting for me when I get home from work.  I have to get him get dressed, realize his shorts are on backwards ( and by this time, I couldn't care less), his socks are not as white as I would have liked them to be.  He has stubble growing all over his face, even though I swear I shaved him the day before yesterday.  I take a big gulp of coffee which has been sitting there for twenty minutes,  only to discover it is ice cold.  I can't find my keys, the clock is ticking, the bus is late, his mp3 player is dying, I have a bag full of double A batteries, but the one he wants to take to school today requires TRIPLE A batteries, which of course I have none of.  A minor meltdown ensues, while he tries to jam double A's into triple A sockets, I try to convince him to please take one of his other music sources ( and make a mental note to PICK UP TRIPLE A BATTERIES)  He is having none of it, so I run upstairs and try to find a remote control with triple A batteries so he will calm down.  Meanwhile the cat is squirming in and out of my path, crying and begging to be fed.  Finally, I have to leave, and I am leaving Zach with Ronnie till his bus comes because I am now late, so is Ron and so is the bus.  I get in my car, look and of course the gas tank is on empty.  I drive to work, my mind concentrating on everything but the road, I start thinking about all of the tasks I need to do once I get to work.  I am praying that Ron doesn't call me to tell me of another catastrophe caused by a glich in the routine.  I walk into work, look around to see if anyone is looking, if they aren't I sign in at regular time even though I am about 7 minutes late ( which isn't bad when you think about what I went through to get there)  I sit down at my desk EXHAUSTED, and some well meaning friend comes to me and says, boy you missed a spot in the back of your hair, it's all straight except for one big nappy curl.  I laugh it off but mentally I am either thinking "screw you" OR I start feeling sorry for myself and start remembering the days when I actually cared about  what I looked like and how I presented myself.  It begins to dawn on me that I mentally and physically just put in a full shift , yet it is only 8:20 AM.  I am still  miffed about the hair comment, I didn't pack anything for lunch, but it doesn't matter because my lunch will be spent running out for Triple a batteries, or was it double A batteries?  Will I have enough gas to get to the store and get back to work, or will I need to stop on the way?  Through all of these days, I come to find out that the funding for my job was going to be cut and the job I was offered required almost double the amount of work as my old one, the need to be at work a half hour earlier each day and a pay cut of  $3.00 less per hour. 
Now they say that the universe gives you sign posts all of the time to guide you on what direction your life should be going in.  The universe was clobbering me over the head with a baseball bat.  I just couldn't keep this up anymore.  I was scared to death to do it, but I summoned up the blind faith to say enough is enough is enough is enough.  With no particular plan in place, I listened to my inner voice which used to whisper, but lately began to shout " take a leap of faith, stop putting all your energy into NOTHING, remember the definition of insanity" ( doing the same thing over and over and expecting different results) and just let it go!  Trust that something bigger is at play.  So I did, and here I am sitting at my computer watching the sun come through the window, and sharing with all of my dear readers how I got to where I am right now.  I pray that I made the right choice.  I am going to follow my heart and write, I am going to write and share until I can't write and share any longer.  I am changing how I look at everything, being practical, logical, and untrue to myself, was not working.  It was affecting my ability to parent, to be a friend, a daughter, a lover and a person who has more to give than just going through the motions everyday to stay stagnant, broke, unfullfilled and unhappy.  I have no idea where this road may take me, it may bring me to foreclosure on my home, it may ruin my already damaged credit, it may make people think I have lost my mind, but that is a chance i decided I am willing to take.  I will never know where it would lead if I didn't take the leap.  For now, I am enjoying being a stay at home mom for the first time in 17.5 years.  So let's see where this takes me. Thanks to eveyone who has been following this blog.  It is very therapeutic for me to write, and I can't wait to see where this change takes me, one thing I know for sure, I would never know unless I put my fear aside and took the leap.