Autism Wears Blue Suede Shoes

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So you think you should be wearing these blue shoes of mine do you? I’ll gladly allow you to put them on if you feel you need them.

I’m sure after a mile or two you’ll find they definitely aren’t the right pair for you even if they are your size.

Yes, I know you think that blue shoes are special and they are the thing to own and you’re jealous when you see them on me and you wish to the moon and back that they were yours, but like I said before, you will probably only get a mile or two and they’ll start to really hurt and you’ll gladly give them back.

You see these are my blue worn shoes and only I have learned to wear them through pain and years. Yeah, yeah, I’m sure you think you can handle them just fine and would wear them so much better than I. So I guess it’s one for the money two for the show
. Three to get ready now go, cat, go.

I know you are so jealous of these blue suede shoes I wear. You think to yourself they are the most beautiful shoes you have ever seen. What soles they have for their age… and how graceful they move through the day. They must fit perfectly, after all the GIRL is always smiling who wears them, and she knows everything. She works right in the blue suede factory.

Yes, life in those blue suede shoes must…

no it has it to be PeRfeCt.

If only I had them my life could be too……

I do think you should know that some days the pain with them is intolerable. I am grateful that I have learned to just sit back….

take them off

and put up my feet to think that this moment in time shall pass too.

When you have finally learned to wear blue suede shoes as one should… you learn….It’s all moments of time and they all pass…….. some just take a little longer than others. So I sit and wait….and you learn…. You learn to some days …. never put those shoes ….and other days you wear them all day….. with a smile

Stories are stories, we heard them since childhood. They are embedded within our minds. Because the prince always saves the princess especially when the shoe fits.

But…..I stand within these shoes to say the shoe may fit but you may not be able to walk all day in them…..so please don’t just judge by the shoe or the smile…..it truly doesn’t resemble what it all’s about or how an individual may have the ability to hide the pain or walk the walk everyday, every hour.

Oh, by the way please don’t step on my blue suede shoes. I truly can’t take on another load. I may have a smile but that’s not really what is inside…..You see some of those indentations on those shoes are from people stepping on them everyday and everyone continues in their own way so please…. hear my pleas and lay off of my blue suede shoes. Really this is not a quest it’s a plea. I am old, so are my shoes, and so is my soul. Your eyes may tell you something different when you look but…please don’t….. I honestly can’t handle more….my back is becoming weak…my heart hurts and my soul is tired, so please don’t step on my blue suede shoes…

The spots….what are the spots?……those my friend ….those are the tears that I cry almost everyday asking G-D for the strength to continue to wear shoes of such beauty….because I know the strength and the quality of these shoes….and most important…..I believe…..

I believe that ANYTHING in these shoes is possible with love, patient, tolerance, support and more love…it is ALWAYS POSSIBLE…

The discoloration….oh well…that’s just trying to squeeze through situations where you are so frighten that you leave scrape marks on the side.. trying to gracefully get through…or from the night that you just continued to ask for one more knowing you were safe with the people you where with to get you home… just to kill the pain that you where feeling for weeks or months and somehow, someway without anyone really knowing you just had to get it out even if it wasn’t who you are and had to stab it even if it meant that you couldn’t put the shoes on for two days later and the people you spent that time with never really know who you were…..even if you wanted them to.

Yes, I wear these shoes. I wear them everyday and I love these shoes more than anyone can ever love a life, but G-D sometimes they hurt so bad and make me wonder …….CAN I really continue to keep these shoes.

Oh that dent in the side…..well that was just like any other morning and it was either I hurt the one I love or slam into the wall….I choose the other as always….they are only shoes…they are older….they can take the slams….The one I love is just trying to make it his own way through the day…

They may not appear as what they really are. You see I truly love these blue suede shoes and yes I know they are a gift from G-D, so I treasure them every moment of every day, but some days they are just harder to wear than others, so please bear me the moment to adjust to the extra discomfort on any particular day and again please don’t step on my blue suede shoes. I am doing the very best I can……can you not see…..

The soles ….oh yes they are very aged ….years of day in and day out of trials and tribulations ….people always continue to provide their input for what will work….BUT they don’t wear these shoes….they really don’t know….I am sorry blue suede shoes just don’t fit like others…..they are different…

And I stand as strong as I can say G-D,   “well, you can knock me down, step in my face
 Slander my name all over the place 
Do anything that you want to do 
But G-D, please let the people lay off of my blue suede shoes

Please understand the wearer is only human…. doing the best they can…and so grateful that you have finally taught us to ask……and ask…..and even beg if we have to….we love these shoes…..we love them with them with every breath…because we know…we know every spot, every crinkle, every mark, every dent…every thing about them…they are mine…they are love…they are life… they are you…G-D….give them the chance…..to dance!

peace love hugs a doodle…support autism…

Mind-blindness and Empty Shelves in the Autism House

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Well this morning began almost like any other typical morning in our home. The BOY was up at 5:07am, dressed by 5:11am, and the washing machine was running a load by 5:13am. Here is where the almost comes in. The dishwasher was not concurrently running with the washing machine. For a moment I thought, what the heck is the BOY ill today, and then I quickly recalled the flood we had yesterday from the dishwasher. That’s a whole different story. So this morning was almost like any other morning in our home before 5:30am minus the chug, squirt, swish sound of the dishwasher.

The BOY was in his giddy little mood this morning and even though he appeared to be happy on the outside I know as a doodle knows not to ‘look’ at him because that happy moment is GONE. The BOY has 2 standard morning moods GIDDY or HORRID.

NEVER STARE AT THE BOY IN THE MORNING. Oh heck, never stare at the BOY anytime. It pisses him off. Sometimes I do it just to piss him off. Hey, what can I say a doodle gets bored too.

The GIRL gets up, throws on some clothes to take me out for a little relief. It’s Monday and I personally dig Mondays. Mondays means garbage. (Yes, I say garbage but to the BOY it’s trash) I love going out and taking my sweet butt doodle time sniffing everyone’s garbage along the way. You know it’s the best way to find things out about your neighbors. The GIRL doesn’t get it. I actually know that the best way to the guy’s heart across the street is by tuna.  I dig tuna, so I always have to take extra long on his trash. As we walk along lifting legs on everyone’s trash, I’m thinking BOOYAH life is good. The air is crisp this morning and I’m managing to pee on almost everyone’s can or bag out there today. Oh, I should clarify the GIRL does not lift her leg. She actually yells at me for lifting my leg on everyone’s garbage and attempts to drag me along to move a bit faster, but I’m never in a hurry on Mondays.

We return from our walk and the GIRL gets her exercise on. She gets on this damn machine that makes some horrible noise, plugs these strange things in her ears and goes pretty darn fast for like 30 minutes. Personally, I don’t get it , what the heck is she trying to do. She doesn’t go anywhere and to think she doesn’t want to sniff trash with me. HUMANS….

We eat our breakfast…..well the GIRL and I do. The BOY typically takes 2-4 bites and says, “YUCK, I hate this, this is gross, besides I’m not hungry. My stomach is making that grrrrrr sound.” He then stomps up from the table and throws out whatever he is eating and the GIRL and I finish our breakfast.

This almost normal morning the GIRL went to get in the shower and realized she didn’t have any soap. Now I have to give credit where credit is due, the GIRL has become rather thrifty with money since it has become a shortage. She coupons, watches the sales, and gets some really awesome bargains. The GIRL stocks many things that we all use on a regular basis like soap, shampoo, deodorant, toothpaste, lotion, tissues, toilet paper…you get it. I mean she’s not a hoarder but she keeps about 2-3 months of most things stocked and buys them on sale with coupons to help us stay within budget.

Out to the garage she ventures to find the shelf where the soap is EMPTY. Yes, I wrote EMPTY. At first she thought she was looking on the wrong shelf because there was plenty there just last week. She looks again and now starts looking at me, like what the heck did you do with the soap and I’m like hey don’t look at me I prefer to never bath remember and Doodle’s don’t eat that crap.

She starts to look further. Oh no the deodorant is GONE.

What NO SHAMPOO.

TOOTHPASTE GONE…….and then it hits her.

The storage shelves are ALL EMPTY and suddenly she hears that little voice in the back of her mind and it’s the BOY saying just last week he didn’t like that toothpaste. In fact he told her that a couple of times not only about toothpaste but he mentioned he didn’t like the green shampoo nor the blue deodorant. The GIRL just wasn’t really listening.

So here we are now the cupboards are BARE and all I am thinking is thank goodness the BOY doesn’t do anything that involves doodle snacks. I went to check just to make sure. I am safe.

So our almost typical Monday ended up in a money saved money tossed and tomorrow will be another day with locks on the supplies type of day.

GIRL: BOY, I do believe we will be implementing a new program here. You cannot just throw things out that you don’t like.

BOY: of course I can. I don’t like it. I don’t want it.

GIRL: it doesn’t work that way

BOY: yes it does

DOODLE: GIRL give it up the BOY already did it so YES IT DOES.

That’s our BOY. Mind-blindness sorta goes with autism for the most part and the GIRL is not fond of it this almost typical day.

 Lesson Learned by GIRL:  Always LISTEN TO THE BOY. ALWAYS

Be kind, love peace hug a doodle. Support autism.

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.

friends

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.

pool

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.

Autism Storms the House

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It was a difficult day for all of us. The weather was beautiful and the GIRL had big plans for all of us to spend most of the day outside enjoying it, BUT autism got in the way today and we spent most of the day being quiet and trying to ride out the autism storm that was brewing inside the BOY.

The BOY has been doing GREAT. We have had very few eruptions in the last several weeks. Just the other day at the doctor’s office the GIRL said we were all doing awesome. Perhaps she spoke to soon, perhaps the change in the weather is just too much for the BOY.

As any other Saturday the BOY was up bright-eyed and busy tailed well before 6am. The GIRL and I decided to hang around in bed for a while enjoying the cool crisp morning air. We finally got out of bed around 7:15am. This seemed to start the hurricane within the BOY. The GIRL is assuming he wanted us up earlier so he could come in the GIRL’s room to collect her clothing from the day before and night so he could start his Saturday laundry.

Agitation begins.

The GIRL and I go out for our morning walk. I was loving life today. It was cool and I was frisky. YAHOO. We are gonna go out all day. The GIRL was feeling good too in the crisp weather. We took a 2 mile walk and returned home.

The BOY was dress like it was ten below outside and he informed the GIRL it was cold outside and the GIRL said, “well it’s not really cold it’s CHILLY.”

Lava building up quickly to spill over!!!! OH NO…NOT CHILLY.

The BOY then starts to perseverate that it is not CHILLY it is COLD. 10, 20, 50, 100 times he repeats this and starts his over correction with the GIRL and ordering her to say things the way he wants them said. YES, you read it right he says, “I order you to say…….”. The GIRL always replies with the only ORDERING done around here is in a restaurant and we aren’t in a restaurant.

Me, I’m hanging out by the front door. The GIRL has it open with a gate in front for the cool, crisp, clean air to come in the house and oh the neighbors are doing a garage sale. There were a lot of new cars pulling up and lots of strange people walking very close to my door and I thought I should probably bark at those humans, after all they could be coming to harm the GIRL and the BOY.

ERUPTION!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

The BOY begins smacking himself in the head, calling me a stupid idiot, the GIRL, his when really angry, GOAT FACE and smashing his hand on the table, sofa and throwing the stuff on the coffee table.

Now usually I go in on these storms and I can stop him but today, well I just knew it was too bad a storm and if I went in I probably would not have come out. So the GIRL and I backed off. The GIRL instructed him to go to the other room to relax.

It GOT WORSE.

He continued to hit himself in the head, break the bed, rip the stuff off the wall and scream at the top of his lungs. I was like GIRL we have to go in and she said, “NO, he needs to calm, we can get hurt.”

Calming in our house typically is to shut down things that stimulate senses. So off goes the TV and I don’t bark and the GIRL doesn’t talk. We become QUIET.

QUIET BRING CALM.

About an hour later the BOY was somewhat calm. Three hours later we decided to try to run some errands. It wasn’t the worse day we had out, but it wasn’t pleasant either. The GIRL knew the BOY was on the edge of eruption the mere 2 hours we were out so not wanting another storm of such magnitude we came home.

It appears that the weather always has an effect on the BOY. Maybe it’s the sensory thing of going from shorts to pants. We live in Florida, so most of our year we are in shorts. Maybe he doesn’t like the feel of that and it just makes everything else harder to deal with on a daily basis. Maybe it was because yesterday was Halloween and he hates Halloween. He wishes that someone, somewhere, somehow would steal this holiday and never brings it back. Sometimes these eruptions are from things in the past that he just runs over and over in his mind until he breaks. We never know. 

Each day is a new day. Life isn’t always as we plan it but we always try to make the best of each of our days. Thank goodness for tomorrows.

 

Autism….like a monster…can cause FEAR!

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It’ s that dreaded time of year when goblins, witches and monsters will roam our streets. Fearful creatures will slither into our life inducing screams, terror, and heart pounding moments. The blessing is it’s only for a night. Autism doesn’t come with a costume; it’s not just for a night and it does come with a daily distinctive level of fear, especially if you are the sole caregiver of an adult with autism. Yes, fear with autism is imminent.

The GIRL is sure that every parent lives with a specific level of daily fear for their child in one way or another. She believes that having a child with severe to moderate autism heightens that fear for many parents. Just listen to the news everyday and your fear is bound to escalate. It seems on a daily basis now some horrible act is being performed on an individual with autism. Fear is something that has always crossed her mind when the boy’s father was alive. The difference is it didn’t creep into her daily thoughts and slip into her dreams waking her in a cold sweat to spend countless hours awake worrying over the ‘what ifs’ and how to best protect the BOY that would enable her to diminish the fears and know that he was safe. When the BOYs father was alive as silly as it is or sounds she always felt there was a safety valve there and all would be fine.   Now don’t misunderstand she had certain fears but not to the level now. Once the BOY’s father died everything changed. It changed from worrying about the future to fear of the future.

The GIRLS fears vary, sometimes she fears that she is not going to make it to the end of the day because something may happen halting her from seeing the morning sunlight once again. She fears that something might happen to spiral financial liabilities out of control leaving her and the BOY losing their home or food on the table each night. She fears that she will become very ill and not be able to provide care. She fears that something will happen to him when she is not right there and fears that an accident will happen and she never return home when she is driving or traveling alone, and the biggest fear of all is that when she is no longer here that he, the BOY, will be treated with ill respect and become extremely sad and depressed in life, no longer a happy young man. So yes, the GIRL lives in FEAR on a daily basis. Perhaps different from goblins and witches but fear is fear and it manages to creep into her life every day.

I know you’re probably saying what the heck is the difference of a regular parent and the GIRL is going over the top with this fear stuff. It is true that as a parent you always want to protect your child regardless of their age. When you have a child with autism life just seems to be so different and that different becomes so normal to the family that when they look out at others lives they seem so abnormal. Would the GIRL trade lives? Some days yes without a second doubt when autism takes over so strongly in the home that it literally cripples her and the BOY. Oh, yeah on those days she would love to. On every other day, NO WAY. Everything about the BOY is adored by the GIRL which may seem abnormal in a typically home, like how he runs up to her when she comes in from work and hugs her from behind or after they spend the day together and he tells her it was the best day ever and then in his own little limited language tells her how much he loves her, or he dances through the aisles of the store when’s happy. These are things that probably most 25-year-old males will not do, but the BOY does and the GIRL adores it. It’s like she always has her little guy near.

It doesn’t seem to matter how much you attempt to prepare for the future of your child who is not able to provide total care for themselves it is never enough and this fear continues to creep into your life. The goblin, witches and monsters are always right around the corner breathing down your neck. They creep into your life daily and nightly. They are within our society and we must continue to educate, educate and educate society and continue to stress the importance of differences and how to be kind so eventually these monsters too will understand and support those that are different from them.

The GIRL always says, “well you just have to keep moving forward and being prepared with every step.” She says that but I, the Doodle, knows she is scared. She just tries to be tough, but inside she’s peanut butter and I love peanut butter. I always try to tell her I will always be there for the BOY. She just smiles and says, “Doodle I know you will be.”

Be Kind, Peace hugs love a doodle and support autism.

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?