Sunday, January 31, 2016

How Does A Single Parent Of An Autistic Child Make A Living?

I have raised the subject of keeping a job while raising an autistic child, on my Facebook page. I have made sarcastic jokes about getting that phone call from the school nurse because my child was "very agitated" and "could you come pick him up?" I have shared the "resumé" that was written by my good friend at Autism In Our House. (<Hey, look!!! I learned how to insert the link...I think...) It included some of the little "emergencies" a potential employer might expect upon hiring a parent of an autistic child. I have played the possible scenarios in my head, over and over, and I really just want to know, HOW IS IT POSSIBLE?

There have to be parents out there who make it work. Otherwise, families with autistic children would be starving. But I really want to know what the answer is.

I imagine if a person is a skilled professional in a specific field, the possibilities would be greater. If a mom or dad were a longtime employee, going back before becoming a parent, there would be better odds of keeping that job, even with all the disruptions that will inevitably come. But I think there are a lot more parents out there who are in a position similar to my own.

When I got married, my husband told me, AND I QUOTE, "I will shovel shit, seven days a week if I have to, I want you home with our kids". I swear to you, those were his exact words. Luckily, for a good amount of time during the early years of our marriage, no shit shoveling was necessary. His business was doing well, and we were living comfortably. I was pregnant with our daughter when our son was diagnosed with autism, and being a stay at home mom enabled me to do all the running around that followed. Evaluations, therapies, school programs, doctor appointments, more evaluations, more therapies...I only gained 11 pounds during that pregnancy. There was a lot of running.

Those early years were busy. I spent several hours a day in the car. The school programs we chose were on the opposite side of our city, and because our boy was non verbal, and I was home, we chose NOT to send him to school on a school bus. Had I been working (at a paying job), we would not have been able to get him as much help as we did.

Fast forward to our move to the suburbs. The economy had crashed, business was no longer booming. We struggled quite a bit and the marriage suffered. Badly. I was accused of being lazy. I was told I was using autism as an excuse to stay home and do nothing.

It was an ugly period of our marriage. Really ugly.

So I took a part time job in a school lunchroom. And then my husband left.

So now, my soon to be ex is suggesting it is time for me to head back to the full time work force because his choice to exit the "til death do us part" has negated the whole "shoveling shit" promise.

I certainly don't enjoy the whole "living on the balls of my ass" existence. I wish the possibility of finding worthwhile employment was...a possibility. But here are some of the dilemmas I find myself facing:

1) I am a 52 year old woman with a GED and no college.
2) I haven't been a member of the full time work force for the last 20 years.
3) I have no currently marketable skills.
4) I have no family close by to help with my kids.
5) In addition to a non verbal autistic teenager with the mental capacity of a two year old, I also have a daughter in the throes of puberty. She is dealing with the emotional fallout of my broken marriage and exerting her intense need for independence. It's a really bad time for her to be left unsupervised.
6) Special needs child care is expensive.
7) Summer camp for my girl and ESY (Extended School Year) for my boy only go to the beginning of August. There are approximately four weeks at the end of the summer when my kids would be home.
8) Winter break.
9) Spring break.

Ok, with all that being said, I really need to know, where do I go from here?

Even if I'm able to find a job that pays a decent wage, the cost of commuting, maintenance of business attire and child care would pretty much eat up any salary I might earn with my minimal skills. It's like I would be leaving my children to be cared for by strangers, and there would be no money left. Not to mention, that non verbal boy...who do I trust? My daughter is responsible. I can run to the store and leave her with her brother. I can go to an after work meeting (for my lunchroom job) for an hour, once a month, and she is ok to keep him safe. But she's 12. My boy is usually even tempered and a pleasure to spend time with. But he is a 15 year old boy. He is becoming a man. He has OCD and is sometimes unable to control his obsessive compulsion. And my girl is tiny. So leaving her alone with him every day? Out of the question.

These suggestions by my ex, I'm relatively sure he is misinformed regarding the resources that are available. There are financial options that would help. SSI will probably be a possibility, once the divorce is final, and I have the necessary financial documents to present with an application. There is also help available in my state through Perform Care, (formerly known as the Department of Developmental Disabilities). But again, I need the documents regarding finances in order to submit any application. There are no babysitters. There are no discounts on special needs child care. There is also no after school program. I am pretty sure I know WHO is misinforming this ex of mine, who is all too happy to assume I just don't want to work. I imagine if I had a family member who owned a business that provided me with full time employment, and I was able to bring my kids to work with me, well, that would sure make the process a little simpler. It also might make me a bit smug, and feel like I might be in a position to presume everyone should be able to do everything I do.

But that's not the case for all of us, is it?

I don't go out. I don't visit friends. I sure as hell would never consider leaving my kids home alone so I could go out for drinks during the week. I rarely spend money on any kind of recreation. I'm not dating. My whole existence is about caring for my kids. Because I don't have any current options to EARN more money, I do everything I can to limit expenditures. But as this divorce moves closer to being final, I wonder what resources my husband has consulted in his mission to relieve himself of responsibility. He is currently taking care of his kids, and I do know he always will. But he appears to have decided that his choice to walk out on his wife and his promise somehow created magic possibilities for me.

When we first began having financial difficulties, darling hubby suggested I go back to work, and I would ask him back then, "What would you like me to do with our children?" He never had an answer. He still doesn't have an answer, but apparently, he is all too happy to point a finger at me, and leave the burden of making whatever arrangements will alleviate his own responsibility firmly on my shoulders. He doesn't care who his children are left with. As long as he can save a few bucks.

I don't know how this will all play out. We have a legal process to go through. But I sure would love to hear from anyone who has found a formula that works. I'd love to know if there is some magic solution I am overlooking. I'd love to know, where do I go from here?

Saturday, January 30, 2016

Whatever Will I Do With All These Blogging Riches?

It has recently been brought to my attention that there is a gross misconception about blogging among those who have never explored the soul cleansing, cathartic, emotional release of bleeding emotions into words.

There is really no money to be made here.

There are sites to which a blogger could submit a work of the very deepest emotion, or the most clever, witty account of whatever adorable antics the children have gotten into, and perhaps be compensated on some small scale. One site I'm familiar with will pay a blogger $100 for an original post, but only if it is written in the style they deem to be consistant with their standards, they reserve the right to edit or alter the writing in any way they see fit, and they will then OWN those words, leaving the blogger legally unable to publish those words anywhere else without credit going to the original publishing site. For $100. Most often, as I hear more and more frequently, a blogger is compensated in "exposure and readership". Well, thanks so much for the chance at fame, but your fame is not putting gas in my car or food in my kids.

I started blogging as a desperate attempt to dig myself out of the loneliness of a miserable marriage. I thought I was happy for far longer than I actually was. It wasn't until my ex completely shut me out of his existence that I realized how completely alone I had been for years.

I first began writing on Facebook. I started a public page to discuss all I was experiencing with my son on his autism journey, the adventures of raising all three of my children, and the pain and emotional abyss of being married to someone who hated me. I never really changed in all the 23 years we had spent together, but he decided he absolutely hated me for not turning out to be the wife he really wanted. That turned out to be my cousin, apparently. But that's a story for another day.

I eventually started writing here, on this blog, because so many people told me it was a great way to try to earn some money while still being able to be present for my kids. They were liars. But between writing here and on Facebook, I found a community of people with whom I have so much in common, many friendships were born of these words. Some of them, I will probably never meet. A very few, I have had the honor and privilege of meeting in person, and am a richer person for knowing every single one of them.

I have become intimately close with some of these friends. I don't mean sexually, intimately. I mean, deep, dark secrets intimate. I mean, hold each other up through hard times intimate. I mean, when you are hurting, I am here for you intimate.

I chose to write about my life anonymously. It is the best way to have the liberty of telling the whole truth of my story without compromising the identities and the safety of the players in that story. But there is a very small group of these internet friends with whom I have become so emotionally attached, who know me. We've spoken on the phone. We have spoken via video chat. We have exchanged Christmas cards. And a few of these friends have been kind to me. Once, after posting about my frustration upon realizing that after my son fell asleep and peed on my couch, I couldn't shampoo the mess because my ex had taken our carpet cleaner when he left us, one of these dear and extremely thoughtful friends purchased and sent me a new carpet cleaner. No matter how much I protested, she swore she and her husband had finished their Christmas shopping, and when they found themselves to be ahead of their budget, they had planned on donating the extra money to someone who needed it. I posted about my dilemma that day, and she insisted, it was meant to be. It was a blessing beyond most of what I had experienced in my life.

Another kindness that came about as a result of this rich, blogging life was after I posted about having to pee in the dark because lightbulbs were not on my "list of things I can afford this week". An amazing and thoughtful friend then sent me a package of lightbulbs. I have also been the recipient of Christmas cookies, chocolate, 4 sweatshirts, (2 of which were for my children), 6 gift cards for coffee, 2 gift cards for Target, several Christmas ornaments, some silky panties, a package of razors, a purse, a scented candle, a favorite coffee mug, a Superhero cape, and a bottle of vodka. Most of these were gifts for Christmas and birthdays. All over a period of three years. While none of these incredibly thoughtful gifts can ever be considered "making a living", the kindness and love with which they were sent have irreversably changed me as a person. I have seen the open hearts of people I have never met and connected with them in ways that would never have been possible with the closed mind and closed heart of someone like my ex.

Now, because I am technologically challenged, this blog is simple. I don't insert links, I am not sure how to point you to an older post, (except to say, "Hey! Just keep scrolling down!"), and I simply type out words on a keyboard. I finally figured out how to insert a photo, but it's a process and I don't have the patience to add one for this post. I know how to make a meme, (thanks to all the really simple apps), and I can post a link on Facebook. Beyond that, my computer skills are archaic. And for the dolts who think they know me better, that means REALLY OLD. But this little corner of the interwebs is about as far as I realistically aspire to go. I don't have unreasonable expectations of getting rich or famous. I just like to write about life in general, and hope that it helps me connect to another human. I hope that somebody else out there finds some hope in my stories of survival. That's all. But there is no money to be made here. It is not my living. It is my only social life.

As for all the riches this blogging life has brought, of all the things I already drank, shaved with, wore, ate, burned, carried or hung on a tree, the greatest riches are the friendships that have given me strength and hope through some tough times, and given me love and laughter I would never have known without having shared my words. I enjoy interacting with people, even if only behind a screen. I enjoy helping people, as evidenced by the numerous private messages I have received, telling me how something I may have said gave someone the strength to keep pushing forward/leave an abusive relationship/begin an emotional healing by writing about their own story. Helping them helps me to feel like I have a purpose.

It is sometimes said, the two most powerful words ever spoken are "Me too". So to everyone who has ever stopped by this blog or my Facebook page and liked, commented or shared something that made you feel connected, that's my "Me too". These connections are the riches of the blogging life. It's not buying me a family cruise, but they validate my existence in a way one man never could. So thank you, for being my riches. Thank you.

Saturday, January 16, 2016

Taking Responsibility - How I Sabatoged My Own Marriage.

Let me start off by clarifying, as soon as I forced myself to see the reality of my husband's relationship with my cousin/best friend/Godmother to my daughter, (known for all intents and purposes as "the cuntsin"), we were done. We managed to stay on life support for another two years, but it was basically a vegetative state and we should have pulled the plug sooner.

Looking back, it's probably fair to say we never belonged together in the first place. You really couldn't find two people more opposite to embark on a life together, and yet, there we were. Perhaps it was that opposition that was so attractive to us both. I think if he were ever to speak to a mental health professional, it might be suggested that he has a severe Hero Complex. (Among other things...) When we met, he wanted to save me. I was a fly-by-the-seat-of-my-pants single mom of a not even two year old, living on unemployment in my parents' house. I had no real plan. I was probably just hoping for a prince, and there he was.

Please don't misunderstand...I wasn't just sitting around waiting for some schmuck to come and bail me out of my life. Had a life with this man NOT been the path I chose, I surely would have found another way to go on living. But as it turned out, as I went about the business of living in that time, I dated other men, and THIS was the man with whom I fell completely head over heels in love.

We dated for two years before moving in together. We spent five years living together before getting married. So nobody can say we didn't know each other well enough to be sure about starting our happily ever after. When we got married I was 35 and he was 32, so you can't really say we were too young to know better.

So what the hell went so horribly wrong?

If I were a narrowminded asshole, I could say he cheated on me and leave it at that. But I'm not a narrowminded asshole. I've been on my own for 15 months, and in that time, I've had plenty of time to think about my own responsibility in the demise of our union. Here are a few of the mistakes and errors in judgment on my part:

1) I believed everything he said.
When he told me he would love me forever, I believed him. When he told me he would chase me around the bedroom for at least the next 50 years, I believed him. When he said he was determined to live like a king, I believed him. When he said he would shovel shit 7 days a week if that's what it took for me to be home for our kids, I believed him. And even though in the beginning, you would never have found a more loyal, trustworthy husband than mine, things change and people change. When he said he would never betray my love, I believed him for much longer than I should have. I will never trust someone so completely again.

2) I spent too much money and tried to hide it from him. 
I know lots of families go through this issue. I went through it on a grand scale. While my ex will swear on a stack of bibles (in which he has no belief), that I spent all his money taking my family out for breakfast every day while he broke his ass working, that is a figment of his accusatory imagination. The truth is, we were having babies. I had two pregnancies in opposite seasons and needed maternity clothes. I was buying everything on the planet for our kids. There were times when his "self employment" left us short on cash, and a bad business investment (that I protested) left us with hardly any income for a six month period. He swears this is untrue. But if he goes back and checks his tax records, he will see I am right. So during those times, I was buying clothes for the kids, diapers, sometimes food, birthday gifts for everyone we knew, Christmas gifts, and clothes for my own post-pregnancy, shrinking derriere. We were going on vacation. We had bought a new car. We bought another new car. And I was buying whatever I wanted for our kids and justified it by telling myself he promised we would be living like kings. (I believed him...) So as I paid the bills and we ran short to cover them all, I would shuffle them around and pay the most important ones first, until it just got too far ahead of me. I tried to fix it without his knowledge, going behind his back for help, and when he found out, it almost broke us. That was 12 years ago, and it took a hefty home equity loan to bail us out, but we managed to move past it. Mostly. Except for his eventual need to be in control of every penny, to the point where he demeaned me on a daily basis by leaving me a twenty dollar bill on my nightstand every morning. Like I was some corner prostitute.

3) I said "no" to sex when I was exhausted. 
I surely don't mean to suggest that every wife should have to give it up no matter how tired she might be, but sex is really an essential way to stay intimately close to a spouse. And when the constant demands of newborns and toddlers and life in general leave us feeling too drained to even go through the motions it can also leave us with a disconnect that can sometimes never be repaired. I WAS exhausted. Our boy was collicky for the first four months. He never did sleep well, and therefore, neither did we. When he was a year old, a pregnancy that ended in miscarriage left me devastated and depressed for several months. Then came our girl. At the same time, an autism diagnosis for our boy was dropped in our laps. Lots of reading, calling, running, driving, doctors, therapists, and OH, YEAH...AN INFANT...I couldn't keep track of when my last shower was, so never mind romance! But that hurt us. He even threw it in my face before he left, even though the last three years he was here it was HIS turn to say no. Sex is important in a marriage. If it's not happening there is either something very wrong, or it needs to be penciled into the appointment book. Unless you BOTH don't want it. Then you do what works.

4) I kept trying to be who he wanted, even though it meant not being myself.
He needed the housewife who would be just like his mother. An episode of Everybody Loves Raymond comes to a marriage counselling session, Debra and Ray come to realize he wishes his wife was more like his mommy...yeah, that show was a pretty accurate depiction of my life. Except that my mother-in-law was a much younger, hot tamale version of the doting mommy to her son. I loved her then, and love her still. But I never did want to BE her. I tried. I tried to keep the house immaculate. I tried to cook for him the way his mommy did. I would call her and ask her how to make this, or that. But all the things that mattered so much to him were never all that important to me. I want the house to be clean, but I don't need to be the mom who waits for everyone to finally take off whatever they were wearing that day so I can wash, dry and put away everything we own before I can put my head on the pillow. I would try, and give up. And try, and give up. Ultimately, in his eyes, I failed miserably. He recently told me "YOU wanted to be a housewife and I LET YOU. And YOU just couldn't do it!!" No. I couldn't. I didn't want to be married to the house. And I wanted to sleep sometimes. And I wanted to be my own loud, corny, friendly, center of attention self, and not the floor scrubbing, brownie baking, curtain pleating, underwear pressing, stand quietly behind her man, 50s sitcom wife he created in his head. I am the same woman now as I was when he met me. Only I am much happier with who that is. And completely unwilling to change to please any fucker who expects me to.

5) I ignored how much our opposite personalities had pulled us apart.
He loves the summer. I don't. He loves being athletic. I don't. He loves being outside. For me, there are lots of variables that need to be in place before I enjoy it. He is an old fashioned, provincial, closed minded, creature of habit. I am a forward thinking, open minded, evolved, lover of moving forward. In the beginning, I could laugh it off and overlook a lot of our differences. When we got into the nitty gritty of raising kids, those differences became an obstacle. If ever there is another man in my life, and he ever has a belief or character trait that makes me cringe, I will leave skidmarks.

6) I put my happiness in his hands.
When we were deep in the grind of everyday life, it was always my love for my husband that kept me happy. He'll tell you otherwise, but he has also convinced himself of anything that makes him look like a victim. I was deeply and madly in love to the point that 10 years into the marriage, (and 17 years into the relationship), I could still feel my stomach doing flips when I heard his truck pull in driveway. Even after all the fighting and disrespect, and being treated like I was never good enough, I still believed in 'til death do we part. To love, honor and cherish, as long as we both shall live. For me, it was never about, "I'll love you until you disappoint me". And when I ultimately couldn't live up to the perfect vision of housewife in his head, he gave up any attempt at caring about whether or not I was happy. And when his connection to someone else became undeniable, he went out of his way to ensure I was UNhappy. And I allowed that to happen. The person I am now will NEVER allow that to happen again. If any man is ever lucky enough to be allowed into my life again, my happiness will be important to him. But he will not be in control of it.

7)  Despite what my intuition was screaming at me, I purposely convinced myself that there was no way these two closest people in my life would ever betray me.
Our gut is a powerful thing. The head can be observant. The heart can be deceiving. But the gut never lies. If we overthink things, we can convince ourselves that any tragedy we were ever afraid of is looming or currently happening. But when we are PURPOSELY AND DESPERATELY trying to convince ourselves that our most dreaded fear could not possibly be happening, and our internal alarms are going off at EXTREME RED ALERT, we have to pay attention. My husband and my best friend were too close. Not only did I allow them to become close, I encouraged it. I was so happy my husband and my best friend could get along so well. "Let's go help her." "Don't you think we could give her a hand?" "Now that her husband has left, we'll need to be there for her." Those are things I said. To my husband with a severe hero complex. Does that make me responsible for the fact they ended up together? No fucking way. But...if I am ever so blessed again to be in a relationship with a good man, I will be the most self absorbed, possessive bitch his sorry ass has ever known. He will NEVER allow another woman to become close enough to become a threat to our commitment. And don't get me started on the poor bitch who might ever be fool enough to put her hands on my man. Just don't.

That's it, in a nutshell. We were probably doomed from the start. Probably never should have been together at all. But I'm thankful every day, as I love my children, for every moment. I'm thankful for the good days, when he convinced me I was loved. I'm thankful for the lessons of the hard times. I'm thankful for the strength I take with me. I'm so very thankful for the realization that I'm happy with the person I am, and that I never did give that up for anyone. Especially not the prince who turned out to be a frog.

Thursday, January 14, 2016

Becoming Famous - Take THAT, Cancer!

Over the last few days, there has been a flood of social media posts in tribute to David Bowie, and now today, to Alan Rickman and René Angelil, (husband of Celine Dion), all taken too soon by that hateful beast, cancer.

Had any of them been an average Joe, and not a rock legend, or one of the greatest movie villains of our time, or a music managing genius who had the good fortune to marry the greatest singer he would ever have the privilege to know, it's probable that nobody would be talking about them. Cancer steals loved ones from us every day. But because THESE cancer victims are famous, and have all touched our lives in one way or another, everyone feels their loss. We're all in mourning.

So I found it ironic when I read the story of Dorian Murray, who has battled cancer for half of his eight years, and who has expressed a wish to become famous BEFORE his cancer defeats him. So I thought, we're not talking about his cancer because he WAS ALREADY famous. He's becoming famous because he has cancer.

And then I thought, "Well, that's a crappy way to think of it!"

No. I don't want to talk about this amazing, brave, strong boy because his doctors have run out of treatment options for his cancer. I don't want to remember his wish to be famous as "his dying wish". I want to help a young boy realize a dream, and I want to always remember his name because even after all he's been through, and even in the face of what comes next, this beautiful boy is smiling. Barring some miracle, he will never grow up and have the chance to show us all he can do, so he wants the chance to know we all will remember his name because he fights the good fight. His chance at growing up to live a great life is being stolen from him, but he is great, right now.

I have a family member who was diagnosed with cancer when she was 9 months old. Her mom traveled to wherever she had to go, just to get her the best care and treatment that was available. It was an exhausting trauma, but her mom never flinched. And I remember hearing my mother talk to her on the phone, asking her, "How are you holding it together? If it was one of my children, I don't think I could go through all this without falling apart." And I will never forget what she said to my mother.

"Every day with her is a gift. If God chooses to take her back, I will be grateful for every day I was allowed to have her in my life."

I was 14 years old when I overheard that conversation and it has always stood out in my mind, whenever I have had hardships to face. My own struggles have blessedly never come close to such a trauma, and for that, I am grateful. And that 9 month old baby with cancer is now 40, and lost her mom to cancer a few years ago. And every day they had together was a gift.

I have seen too many people claimed by the beast. I watched a friend bury 2 of his 6 children and his wife, all victims of cancer. And I see him rejoice in ever having been given the privilege to love them.

So as I look at photos of the smiling face of Dorian Murray, I think of how difficult it must be for his parents to accept the end of a battle they have all fought so fiercely. How do we help them as they cherish every moment they are blessed with this courageous child? We grant his wish.

Tomorrow, Friday the 15th of January, there is a plan to ensure the world will always remember the brave, strong, always smiling Dorian Murray. Wherever you are, whether or not your life has ever been touched by cancer, take a picture of yourself or your loved ones, and post it with a sign of your location. Let's show Dorian every corner of the universe his story has touched. Let's not wait to talk about a boy who "used to be", but let's all celebrate the amazing boy who IS. Click and post. It won't even cost a thing. And don't forget the hashtag #dStrong.