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.

The Cure Next Door

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Some children have not looked at their mother’s for years. Some at the age of seven have never spoken a word, not even ‘Momma or Dadda,” and others bang their head until it bleeds. All of these children have autism. Autism is a life-long neurological disability that affects over 1 out of 55 individuals in the United States. Imagine your child disconnecting from the world and having a child whose eyes look, but don’t see, whose ears hear, but don’t listen, whose cries never end and doctors offer little help. Fad interventions such as auditory integration therapy, secretin therapy, and chelation therapy reveal how desperate parents are to cure their children of autism.

Auditory integration therapy claimed to cure autism in 1997. It was developed by Dr. Guy Berard in Annecy, France to help people with auditory processing problems. According to Dr. Berard, individuals with autism have auditory processing problems, and develop a distorted perception of the environment. He stated that autism could be cured by twenty sessions of this miraculous intervention. The therapy is accomplished by a device, which randomly selects high and low frequencies from a music source (a cassette or CD player), and then sends these sounds via headphones to the trainee. Any licensed audiologist can perform the therapy provided they have the magical device. Audiologist’s phones were ringing off the hook for this new miracle. A parent would wait patiently while their child sat in a small room with headphones on. The theory was simple; it would enable children with autism to perceive the environment as everyone else. Each 30-minute session cost approximately $300.00. Families would do whatever was necessary to raise the money for these sessions.   Some children would utter their first word after the sessions, however, the progress did not continue. Soon, parents’ stopped talking about auditory integration therapy. It simply vanished, as did their money, and their children were no better off then when they started the program, moreover, some were worse than before they started.

Another ray of hope appeared when Virginia Beck, a mother of a young man with autism appeared on 20/20 and Dateline in 1998, stating her son was cured by secretin therapy. Secretin is a polypeptide hormone involved in the regulation of gastric function. It is prepared from the duodenal mucosa of pigs and is not licensed by the Food and Drug Administration for the treatment of autism. Secretin could be purchased from a pharmacist provided a parent could find a physician to write the prescription and to administer the medication intravenously. To be cured of autism it would require 15 to 20 injections at $350.00 per injection. The children would bellow blood-curtailing cries to be freed while physicians used straight jackets to hold them down for the 45-minute sessions. Many children went into convulsions from this fad intervention, more important, others died. Once again, everyone stopped talking about the famous cure of autism.   Secretin did not cure autism. Desperate and penniless parents stopped pleading with pharmacists and physicians to perform this grueling therapy on their children.

Another huge craze was Chelation therapy. Chelation therapy was first developed by the United States Navy as a way of removing toxic metals from the bodies of military personnel exposed to high concentrations of lead during the 1940’s. In 2002, it became another intervention for autism at $125 per treatment, because a physician in England stated that the Measles, Mumps, and Rubella vaccine, which contained thimerosal caused autism. The only way to expel the thimerosal was through this treatment, however it would take between 20 and 100 intravenous dosages to show results. Parents believed this intervention made sense; after all, most of their children seemed to withdraw and exhibit bizarre autistic behaviors right after the Measles, Mumps, and Rubella vaccine. This therapy was thought to be without a doubt the cure for autism. Some children developed high fevers with hallucinations; others vomited uncontrollably for hours, while others kidney function diminished. Once again there was no change. Parents took their children home with little hope of every finding a cure.

Tomorrow will probably bring another fad intervention claiming to cure autism.   Parents will continue to run to their banks to mortgage their homes, and borrow from friends and family. They will stop at nothing, regardless how bizarre or costly. If someone tells them it is a cure, they will believe it, because hope is one of the only things they have left. Hope that a cure will come in time and hope that they have the strength, courage, and commitment to try just one more time.

On the other side are many individuals who say seeking a cure is wrong, yet many seek and try to find reasons for autism.

WHY?

Should autism be abolished? Is that the right thing to do?  REALLY!!!

Will we ever be able to just accept things as they are?

Will we continue to put our children through these horrible “quack” cures?

Will we?  When do we stop?  Can we stop?

Bite Autism Speaks in the Ass

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I, as a doodle, would like to bite Autism Speaks in the ass. I’d take a big ol’ bite too. One that would put them out of commission for months or years just to heal. WHY? Because they aren’t actually helping individuals with autism NOW. They take a huge amount of money out of local communities and don’t even give a pawful back. Don’t get your pants in a bitty. Hear my bark. Do your research!

When the Wrights first founded Autism Speaks the GIRL thought it was going to be great because Bob Wright was NBC’s Universal Chief and she thought this would really put autism on the globe and in households as a common word. Basically it has done that, but along the way lost its focus. It appears it has clearly become something about ‘power,’ ‘money,’ and ‘polotics.’ Not about individuals with autism and local communities.

Autism currently is occurring 1 out of 68 births. Amazing isn’t it? Damn, that should scar any doodle and any person who is donating money to autism to make sure that it is going to places that is going to directly help individuals.

Those of you that are donating to Autism Speaks and supporting them in any way, I strongly urge you to look at their financial records. Do you know they are paying salaries over $450,000 a year? Yes, you read that number correctly. Do you really think an organization that is to support people with autism or any disability should be paying salaries in that range. Don’t you think that a portion of that money should be going back to families?

Then they come into your town and host these huge Autism Walks. Oh, you can’t wait to get your team ready, make your shirts, pay your walk fee and even raise extra dollars to support autism. You think you’re doing good. You have not done good. YOUR ARE STEALING FORM FAMILIES AND PEOPLE WITH AUTISM. ARE YOUR PROUD TO BE A THIEF? Do you know that they average about $200,000 a walk? How much of that money do you see for your loved one with autism? How much money could you use for your loved one with autism? Do you know what $200,000 in the hands of a good organization could do for your loved one with autism?

THINK ABOUT IT PEOPLE.

Every year they march into your town and tell you what a wonderful job they are doing for your child and in reality what have they done for YOUR child? It’s your money they are taking. Reminds me of the old Medicine Shows with traveling horse and wagon teams who peddled “miracle cure” medications and other products between various entertainment acts. You giving Autism Speaks money is no different than buying from the medicine man thinking it’s going to cure you. Shame on you. It has to stop. Too many local families need support and they are not getting it.

It gets me in a furball mood when I hear families complain about nothing being done for their loved one in their local community and they point their fingers at their local community service providers saying they are not doing anything.

GET WITH IT PEOPLE. AUTISM SPEAKS IS SUCKING THE MONEY OUT and decreasing the chances of your family member with autism getting support.

Typically your local community service provider is funded by the state or a local grassroots non-profit. Do you know what that means? Little to no money, but people who truly care about the individual with the disability are working there and I can assure you they are paid about 1/8 or less than Autism Speaks personal, and yes, they have highly qualified degrees. Now you go give your money to Autism Speaks or you ‘light it up blue,’ or some other stupid thing like that and guess what? That small non-profit or state agency doesn’t give a piss hole bucket back from Autism Speaks to do something for your loved one with autism. So…….that is why you sit begging, screaming and demanding more….BUT you are doing that from the wrong people…They don’t have the money because you gave it away to HOLLYWOOD, POLITICS AND FANCY LIFESTYLES.

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we need more things to help us not steal from us~

Article to read. Remember Autism Speaks is a non-profit organization and their financial records are open to the public. Please look at them and think about what they have actually done in your community and for your loved one with autism. We will forgive you if you gave to them in the past. But stop, do the right thing.

http://www.thedailybeast.com/articles/2014/06/13/autism-speaks-but-should-everyone-listen.html

Be Kind Support Autism peace hugs love a doodle

Are Foul Odors Associated with Behavior?

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Sunday…..what an interesting day to say the least. The morning started out GREAT. The GIRL told me we were going for a ride after our errands and lunch. I love rides, especially with the top down.

We all did our little Sunday chores, got dressed, and started to run some of our errands before we had lunch and our “BIG” ride. The BOY was in a happy mood. We were all happy. It was a beautiful day!

First stop Target to get me food, and treats, and vitamins for the BOY. Next stop JoAnns to purchase some more crafty junk. Yeah, the damn GIRL likes to craft. I’m like hey craft me a rub down, but she makes all sorts of junk and is happy doing it. Guess she needs something to do that she likes.

Today for some strange reason my stomach was acting up. It was, well you know, gassy. The line in JoAnns was rather long and my belly was starting to hurt, so I very quietly tried to politely release some gas thinking my stomach would feel better. One in the line quiet foul smelling release, two quietly released in the line and on the third one the BOY starts up, “What is that smell, that smell is horrible, I mean that is a really bad smell, eeeewwww that is GROSS.”

I’m like dude, come on I’m your best friend, I’m trying to omit this foul abhorrent smelling odor without anyone noticing. BOY, come on, don’t rat me out. HELL NO THAT DIDN”T WORK. Now the farts are coming faster and stronger and it’s our turn at the register. The BOY continues, “EWWWWW, that is really gross, what is that smell.” The girl at the register was trying to be polite and didn’t really look the GIRL in the eye, she politely put one hand sorta over her nose and the other to scan the items. RIP……ah, I am feeling a bit better getting that out, but must admit is reeking in the aisle.

Now the BOY gets really loud and people are starting to look around, “what is that GROSSSSSS smell, oh, man THAT REALLY STINKS.” The GIRL at this time wants to put a plug in my butt, or walk out the door and leave the purchases or just have the floor open and suck her in, but being the pro she is. She just smiles at the cashier and says, “thank you so much for your help.”

The BOY is still saying how bad the foul odor as we depart. The GIRL immediately takes me over to the grass area and tells me to get busy (busy is my word to go, you know take a poop). But, but, I’d don’t have to go, I just have gas. After some time the girl is like forget it and we all load back in the car. The GIRL is hesitant about this because the car is rather small, so she puts the top down.

Next stop lunch. YUP, pizza restaurant, you know where we know everyone by name, and all about their families. Gas still coming. Pizza and foul smelling orders don’t mix well and I think it got the boy. He was still continuing to complain about the odor when the food came. One bite and he lost it. “That’s it, it’s gross, I can’t eat it. I’m not hungry.” The GIRL asks for the check and a box, collects the food, pays the check and out the door we go.

My stomach is much better, but the BOY wasn’t. He starts hitting himself in the head and yelling at the GIRL that he was going to tell his father and then in the next breath saying right he couldn’t tell his father cause he died at the temple. (I’ll tell you that story soon, but yes, sad to say the BOYS father died). The GIRL tells the BOY he needs to relax, or they will have to go home. The BOY can’t relax. I’m just hanging in the back. I give the BOY a nudge to say like come on dude we don’t want to go home already, my stomach is better I won’t smell any more and he yells, “DOODLE DON’T TOUCH ME.” Hits himself in the head, shakes his body and calls the girl, “GOATFACE.” That dreaded word…..this continues for about 5 more minutes and the GIRL makes the executive call………..

TURN AROUND

Home we go. The GIRL and I go for a LONG walk when we get to the house leaving the BOY to relax. When we return the BOY is fine. He is calm and relaxed and the rest of Sunday was a breeze.

I had no idea that farts could set off such behaviors. Note to self…research….do foul odors trigger behaviors. Oh well! There’s always next week for the long drive. Ah, the life of a doodle.

Support Autism peace hugs love a doodle.

 

Sometimes it’s hard to tell what sets a behavior off and sometimes it’s just to hard to work through the behavior. Let the people relax. Give them space, give them time. Everyone will be happy in the end.

The LOVE/HATE Relationship

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The reason I HATE autism is……..

  1. the BOY has it – that’s right I said it. I would be so much happier if the BOY didn’t have this damn autism thing so the GIRL, the BOY and I could live a somewhat normal life.
  2. it is so darn rigid most of the time- yes, I hate that the GIRL and I have to do things that have become normal to us that really isn’t normal because we know that it helps with not having to deal with hours of meltdowns and house destruction.
  3. we don’t always get to do the things we want to do – yeah, I know that’s life you can say, but put yourself in my fur for a couple of days and then come back and tell me about it. There are many things that the GIRL and I would like to do but we don’t because the BOY just wouldn’t be able to handle them or he would be so over the top that it wouldn’t be worth it.
  4. many times it takes the total enjoyment out of what you are doing. Sometimes things can be going along great and then all of a sudden we miss that antecedent (the thing that happens before he blows) and BOOYAH we got a MAJOR meltdown on our hands. Day ruined.
  5. there really isn’t crap out there as far as support for adults. I mean in my conversations with the GIRL, everyone works so darn hard with them when they are little and as they age the work put into them becomes less and less. If you don’t have money…forget it you can’t afford squat because you need to pay for respite (just a fancy word for baby-sitter) for 40 hours week while you work (yup almost your whole paycheck). I understand plasticity and all of that crap, but WTF everyone grows up and needs a job or something to occupy their time.
  6. people are always staring and making clicking sounds with their tongues of disapproval and shaking their heads like it is disgusting. I know the GIRL says she could give a crap less about these ignorant people but truth be told it starts to feel like a knife jabbing at you and going a little deeper every time. Sometimes when I see someone staring, I would like tell them that we are paying 1K for a week to stay with the BOY, or to tell them yeah I overdosed him with medication this morning.
  7. there is ALWAYS more paperwork to do. I’m begging for doodle hugs, but no the GIRL is too busy filling out paperwork. She says it started before he was diagnosed and she shows me cabinets of paperwork from the BOY. They ask the same damn questions over and over and over and over…..hey maybe they have autism……………….
  8. the pressure it always puts on the GIRL to have to make those final decisions about the BOY life. The GIRL always asks G-D why she is the one to have to make these decisions. She is never comfortable making life long decisions for someone. She has always been somewhat of a free spirit and believes strongly that everyone has choices and she never wants to make the wrong choice for the BOY.
  9. regardless how many people you know in your circle of support you still always feel you stand alone. You feel like a cast away stuffed bear. from your childhood, in the middle of the night, always looking and seeking that extra support and walking through life like you are on top of an giant egg that may crack at any time and worried….. worried what if you die…where will the BOY go….what will happen then.
  10. if it is your only child, as the BOY, and you love children, that you will never know the blissful joy of holding a grandchild and being called bubba (grandma). Oh yeah the GIRL has lots of issues with this. SHE LOVES babies and would love to have a household of them calling her BUBBA, but the reality is she never will.

Things I Love about autism is….

  1. it doesn’t lie. The GIRL told me this and I am not sure if you know that lying is a complex social skill, so most kiddos with autism don’t lie. That’s right they tell it like it is.
  2. it’s kind, sweet and loving. The BOY is the most caring individual you could ever meet (when he’s not having a meltdown). He always gives people the nicest compliments. He does not discriminate if they are tall, short, fat, ugly, black, white, or what their faith is, he is kind. People are people to him. He is kind to all and the GIRL and I truly believe that kindness can change a life forever…..
  3. it changes the people who live day-in and day-out with it. It makes them stronger, more supportive caring people. The most important thing is it teaches them the pure importance to appreciate the smallest triumphs in life, something so many stumble right over every day.
  4. the people that the GIRL and I meet everyday are just awesome people and typically we find that the world is kind.
  5. it teaches us all every moment to NEVER and I mean NEVER underestimate what someone’s ability may be regardless what silly label has been placed with them. We all have abilities….just give them time to bloom.

 

Well apparently I hate autism more than I love it………….. I’d like to take a big flipping bite out of it….oh well I need to go lift my leg on some trees and sniff out that raccoon that’s been hanging near my stuff.

Support autism peace hugs love a doodle.