The MAN, the BOY, the GIRL & AUTISM

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This will be the longest story ever written by me. I couldn’t stop the GIRL through her tears once she started. Last year on this evening she said, “Goodbye,” and told the MAN to always stand at her side. It was the last the BOY and GIRL saw the MAN. You can read it all, some, or none, but this is the story of the GIRL and  BOY and the MAN and AUTISM and well as the Doodle that I am, I had to share.

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It was the wee hours of the morning that the phone rang loudly in the darkness. The GIRL bolted up in her bed grabbing the phone quickly not wanting another ring to echo in the darkness of the early morning hours, and at the same time knowing it was the final ring call for the MAN and just the sound of it caused her great pain. Her heart started to cry before she even pushed the button to talk and with a very weak “hello,” the voice on the other end told her, he was gone. It was November 6th, 2013, approximately 2:13am.

Illness comes to all of us, sometimes in strange ways. Some for a day or two with fever, chills and other ailments, but to the MAN it started in April or earlier. He wouldn’t tell the GIRL things like this he would just nonchalantly mention that he wasn’t feeling well from time to time when she would drop off the BOY for his every other weekend stay. The GIRL would make suggestions for his ailments and go on her weekend of rest and solitude.

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The GIRL looked forward to these every other weekend stays. It would give her a break from the BOY and enable her to recharge for the upcoming 2 weeks. The BOY was getting harder. His behaviors were starting to escalate and no one could figure out what was actually happening. He was difficult for the GIRL and the MAN had great problems for the mere 48 hours that he had him. Each needed a break after their time with the BOY. Discussions among the GIRL and the MAN about the BOY and his future were starting to become a bi-weekly event. The MAN was adamant that the BOY never live in a home other than his own and the GIRL agreed but she couldn’t continue to be the main caregiver. It had to change. Little did she know the change that was to come.

The GIRL was with the MAN since she was 18 years old. She was 55 when he passed away. He was much older than her and already had two boys of his own when he met her. He was divorced and living the fine life. He drove fancy cars, had fancy clothes and jewelry to match. He lived in penthouses and houseboats. Life was fast and fun for him. He thought she was beautiful. She was somewhat intimidated by the MAN. He was strong, powerful and somewhat demanding, but there was something about him that made her stick around him.

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Fourteen years later they were married and expecting their first son. Life was always exciting with the MAN. He loved to live large. Renting limousines with champagne for a drive across the state or jumping on a plane to fly to an island and sometimes across the country for the weekend was not an uncommon experience for the two. They laughed, they fought, they cried, but most important they loved. Each had an innate understanding for the other and the GIRL learned. She learned how to be a business woman. She learned how not to be meek and mild, how to stand up for what she believed was right and to be heard. She learned how to manipulate almost any negative situation and turn it to a positive one. The MAN was proud because he knew there was now little that would the GIRL couldn’t do on her own, and he, he was the TEACHER. He was not only proud, he admired her strength. Every time she fell down he watched her stand up and do it bigger and better the next time. He always told her she was strong. Maybe he was preparing her for the future. Maybe he knew what was to come and wanted her to be strong enough to make it through. Maybe, just maybe he always knew.

The baby BOY was diagnosed with autism a little over the age of 2. The MAN was beside himself and the GIRL dove in head first to learn whatever she could about this thing called autism. She traveled from one side of the country to another (grateful that money wasn’t really an issue for her to do such) and she read everything she could find. The MAN never picked up a book. He just couldn’t deal with it. He tried, but as I said, he was older and well it was just darn difficult for him to accept and support, but sometimes he tried.

The older the BOY became and the stronger the behaviors became the more frequent the disagreements between the MAN and the GIRL grew. The daily disagreements turned in hourly screaming matches with the BOY slamming doors and breaking things, which was understood because that was truly what he was seeing daily. The MAN would never look to support the GIRL with the BOY and he would say she was the expert so she should handle him. The GIRL was exhausted and couldn’t fight with two anymore. After 18 years with the BOY together, the GIRL felt the best thing for all was to be separate. The MAN and the GIRL divorced. He was still her best friend who knew her better than anyone as she knew him.

They started to become a team for the first time for the BOY. They went to dinner together. They talked and they still laughed. They helped each other when they could. Life was good, and all were adjusting to their new separate family. She would call, he would call and they would plan. The BOY was doing great when they first separated and then about 3 years later his behaviors started and he was becoming extremely difficult.

It was a week in June when the MAN didn’t answer his phone or call the GIRL back and she knew. She just knew. Something was wrong. The MAN was always afraid of doctors and hospitals and reluctantly off to the hospital was the MAN and within hours he was diagnosed with colon cancer that had already metastasized. The GIRL being who she is asked for every paper and read them over and over and spent hours in the University library researching all the test results and then she cried. She cried for the MAN. She cried for the BOY and she cried for HER. She knew the ending now and it wasn’t in anyone’s favor, especially the MAN.

The MAN knew the GIRL would look after him and help him. He knew she would spend hours researching everything to ask every possible question and be able to communicate with his medical team as if she was a part of if. Yes, he knew, because he knew the GIRL better than anyone and he was right, so he asked her to stay and stay she did to help. She hired people to provide daily care for him; she coordinated most of his medical needs and was there to hold his hand, drive him to his appointments and to talk. Just talk. They talked about the BOY. They talked about their love. They talked about their pass, and they try to talk about the future, but all the MAN would say was, “you can do this. You are strong. You can do anything and I don’t want to hear anything else. You can. Remember GIRL NEVER say you CAN’T, can’t is just another way of saying I don’t want to.”

The GIRL would try to spend time each week with the MAN. Family tension rose quickly and the GIRL didn’t get to see the MAN as much as she wanted. His mother, who was of higher years gone by, became belligerent and intolerable to the GIRL and started to accuse her of stealing from the MAN. The GIRL was devastated by these accusations, because her heart was only love and she would never steal from the MAN. She didn’t have to, the MAN would have given her anything, at anytime. The MAN truly loved the girl and always would. The GIRL knew this and that is the one thing that always made her feel secure. The most precious memory is their last walk with him in his wheel chair, too weak to walk on his own, and her pushing him (he only trusted her to push him) and she leaned down to hear him and his head cuddled hers as if to say, I love you and I know it’s over and it was great doll. The last thing she told the MAN was I love you and she meant it. She will always love the MAN. He is the father of the BOY. He was her friend, her lover, her partner, her husband and her mentor.

After the phone rang the GIRL couldn’t sleep. Her pain was beyond any explanation. She just didn’t think it would hurt this much. She told the MAN’s sister she would go to the MAN’s house in the morning to get a suit for him. He was to be buried in Miami near his father. When the GIRL arrived at the house the older boys were already there. She wanted to comfort them even though their relationship for the last several years had been strained, they just lost their father. They met her at the door and refused to let her in. She was so distraught that she didn’t think it was her own home that they were prohibiting her from. She left in tears and they barricaded  the home from her entering it for several weeks. Little did she know that pain she felt that day was only the beginning of the pain to follow of the MAN’s death. At the service she sat with the BOY as stiff as the corpse within the casket. The rabbi started and his sermon went on and on speaking of the MANs 2 sons. He never mentioned the BOY. With each passing moment and each mention of the MAN’s sons the GIRL grew stiffer and sadder. She started to pray to G-D that the BOY had no knowledge of what the rabbi was saying. How is a son forgotten? She left the synagogue with a knife in her heart and held her breath on the 45 ride to the cemetery. At the cemetery all of the family was invited to stand on one side. The GIRL and the BOY was excluded, again, the pain, the anguish was beyond anything the GIRL could ever possibly imagine in life, yet she stood and took the BOYs hand after everyone was done and hand over hand put the dirt on the MAN’s casket while the BOY tried to wiggle his hand free from such as task. All she said was, “you are strong, you can do this.”

The hours have turned into days and the days into nights and the nights into weeks and now it’s a year that the MAN is gone. The pain is still there and the GIRL is very much alone to make decisions for the BOY alone. She is scared, frightened and worried. All she keeps hearing is, “you are strong. You will be fine.” The MAN’s mother’s behavior is well forgiven, because the GIRL realizes that she can never imagine such to a mother. She loves the mother and always will. She loves the family, but knew the day she walked out the door of the MAN’s house she would never be a true part of the family again. A pain she will always live with.

I believe it is difficult for any outsider to look at this situation and understand unless you were wearing the shoes that they all wore. Living and keeping love in some autism families are just beyond possible for some and for the GIRL and the MAN this was true.

The best part of all is the GIRL was there and the MAN and the GIRL knew that LOVE still lived in their hearts and always will.

The GIRL thinks the MAN sent me to their home to help and well…….I’ll never tell her different.

Yes, Autism Does Have a Language and LOTS OF FRIENDS

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The GIRL is tired today, very tired. She almost fell asleep driving on the highway. This is not good because she didn’t even bring me out with them today. She said, “Doodle, you need a break, stay home.” Time changes are always a mess for the boy and difficult for the GIRL. She says that over the years with the BOY she has probably lost over 252,000 hours of sleep and that doesn’t include the time change hours that she lost, that is just mom of autism lack of sleep.

The BOY doesn’t adapt well to time changes. His biological clock stays true  and on fall -back time he is up by 4am raring to go through the day like a bull in a china shop. That means breakfast should be within an hour and lunch a couple hours after. The GIRL has finally figured out through the years on the fall back time to give him snacks throughout the day so he keeps food in his belly and doesn’t get super cranky. Sometimes it works other times it’s a failure.  Today wasn’t bad, but anything was an improvement from yesterday.

About 2 months ago, I started doing this blog and then started a facebook page. The GIRL was not in the best frame of mind when I started all of this, but day-by-day as she peeked over my paws she saw something and I saw something in her.

You see the GIRL has been working in the field of autism ever since the BOY was diagnosed. Yup, she eats, breathes and lives autism, and has done so for a LONG time (I think it’s why she gets a little cranky time-to-time), actually about 24 years now. She has worked doing one thing or another and truth be told she was really starting to lose appreciation for many parents. She was finding too many parents looking to blame others for their child’s issues and looking for others to “fix” their child and if they didn’t “fix them” throw an attitude that the person or place isn’t doing their job. She was finding too many parents that were constantly demanding more supports and services of her when she was doing well over the top of what one human could do and it still wasn’t enough for them, BUT they would refuse to step up to the plate to offer help when she would ask. They just wanted her to do all the work. They gave her excuses like, they were tired (hello), they had a child with autism (hello), they had a job (hello), it was too far to drive (hello she drove there) and they didn’t have the money (hello), or they were a single parent, how could a single parent help (HELLO AGAIN). She was finding too many parents not wanting to face the reality of the diagnosis and too many wanting everything in life for free because they had a child with autism (she really hates that). She was just getting burnt out and was still trying to bring herself and the BOY back together from losing the BOY’s dad.  Needless to say the last 2 years has been an over the top struggle for the GIRL and she knew it.

BUT……..then she found them from looking over my paws. The parents from all over the world that are out there speaking up, banding together to provide for one another. They provide arms to hug with, shoulders to cry on, hands to pick one up, tissues for tears, laugher when needed and hearts to love with. These are the thousands of moms and dads that she has found through my blog and facebook. They are there. They are not looking to blame. They are not asking for free stuff every minute. They are not demanding her to do more. They are just there. There to let her know once again she is not alone and we are all on this same damn boat floating out in the sea looking for a captain who can tell us where the hell we are going.

Some of our friends are going to bed when we wake up while others are battling autism battles and rights with schools, while some are struggling to just keep their child safe from harming themselves and some waiting for that one word. The best part is almost all of them do it with humor….humor because we all have learned that it is easier to laugh and if we didn’t laugh we would never make it day after day after day. They try to make each other laugh and sometimes it’s a humor that only they get because it’s there side of normal that most other people don’t get.

It’s almost as if it’s a language of it’s own. Perhaps it is AUTIELANG or something, but whatever it is, it gives them all a peace within. A peace that others know, understand, support and love. It gives a peace that someone is always there no matter if it’s the middle of the night and you’re awake due to autism not sleeping or a bad night, someone is always there to laugh, cry, pick you up or hold you.

It’s their world……a very special world to be in with a language of it’s own. A world where only the strong survive with bangs and bumps, but survive. The GIRL is happy to be a part of such a beautiful place with so many wonderful people.

The Doodle is honored and pleased to be a friend of each and every one. If you want to meet some really cool, awesome autism heroes go to my facebook page and check out my likes. Tell them the Doodle sent you. They are all better than best and will make your day that much better.

Be kind support autism peace hugs love a doodle. The doodle loves you.

Is that Frisbee Autism

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Well lay me down and roll me over today was one doggone ditty dancing day.

Which reminds me if they say when it rains you need to learn to dance in the rain, I must be the best damn dancer for a doodle of course.

The BOY went to work today. Yeah, HE has a job. HE works about 4 hours three days a week at a resort in the pool hut (of course it is something with laundry). HE folds the towels, helps the girls hand them out to guests (heck yeah it goes over real swell when a guest asks a question. “I DON’T KNOW,”) and he does some laundry from the spa. HE loves going to work. Everyone there knows him and me of course. I dig it cause all the girls there fuss over me. Some days I act like I can’t do anything on my own….oh yeah…those girls just make a Doodle like me smile.

The BOY is usually up and ready for his job by 5am (of course earlier than his usual holiday days). His driver picks him up at 8:15am, but he is always up and ready well before she decides to roll in the driveway.

The GIRL helped carve the job out for him. Like she went there, found out what everyone did in a day and took the parts that he could do and made it into one job. He does the same thing as everyone but just a little different. The coolest thing is the OTHER GIRL works there…you know the one with the little furry guy that’s so little cause she doesn’t give him a big enough bowl to get the nourishment that he needs to grow like me. She is always there if the BOY needs something and that makes the GIRL’s tummy smile knowing someone is there watching out for the BOY besides me, the Doodle, but heck I can’t speak Spanish.

When the BOY finished work today, BOY 2 came by. He’s so cool. He takes the BOY and me everywhere. BOY 2 comes almost every day and the three of us hang out and do guy stuff. You know drink, gamble, fart, and watch sports. How doodlesome is that?

Today was double Ds (doodle delicious) because we went to play Frisbee golf.

Oh yeah, a Doodle’s dream it is. First the ride there with my head hanging out the window. Running with the wind in my hair and the BOY throwing that disc as far as he can, and me running after it to bring it back (oh, wait that’s not how the game works). OH I’M SO CONFUSED. This isn’t fetch?

No wonder the BOY keeps screaming at me, “NO DOODLE DON’T.”

Amazingly the BOY decided it was fun to watch me do that and he stopped yelling at me to stop, but then he didn’t want me to stop running and bringing it back. I am dog tired tonight.

It’s important to remember that everyone can work if you find the right work for them and everyone can have some double D days.

 

Support Autism Peace hugs love a Doodle.