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.

YES…….AUTISM DOES SUCK

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I am really very tired of people saying how awesome autism is.

AUTISM SUCKS

It’s that plan and simple. Yes, you heard me …..it sucks. I want to bark it as loud as I can, but before you judge my words….understand what I bark.

Does the GIRL love the BOY?

Oh course she does, but she would love him as much without autism and life for the BOY, the GIRL, the dad that died, and every other family member would be so much easier to live without this damn autism thing controlling it.

I really get so tired of people talking about how great autism is. What is so flippin’ great about autism? You tell me what is good about autism? I really want to hear and I don’t want to hear something like, “well they are kind sweet people.” BS, you think the BOY wouldn’t be sweet without autism? People say that autism defines who they are, well again I’m going to say you define who you are….. not autism.

OK, don’t misunderstand me. I am not asking for a cure here. If I am asking for anything I am asking for a way to decrease the severe symptoms in some to make life more tolerable for those on the spectrum that need it (I have met many with the GIRL that autism does not CONTROL they lives, but many it does). Why is it that life is just so darn difficult for some?

I watch the BOY so many times want to do something and then that darn autism gets in his way and he can’t get around it. It’s like a big bully blocking him from doing what he wants to.

The GIRL sometimes will tell the BOY that he needs to get it under control and the BOY answers he can’t. WHY? It’s that bully autism getting in the way.

Yes, sometimes it makes me angry. Angry because I watch the BOY work so hard for so many things and he is controlled by this Autism thing.

Years ago the BOY started noticing he was different than his classmates, so he thought if he changed his name he would be the same as the other kids. Now we understand that everyone is different and this is a blessing, but he just wanted to fit in. You all know the feeling, because I am sure at one time or another in your life you too wanted to FIT in.

For weeks the BOY continued to change his name from Tom, to Dick to Joe, to Anthony and so it went Clark, Harris, Mandel and so on, BUT that damn autism kept kicking him.  The GIRL told him he could not change his name everyday. If he insisted on a different name than he would have to pick his first name, middle name or last name and stick with it.

The BOY chose his middle name. He still uses it many years later (the GIRL is happy because it is what she wanted to name him anyway) and the damn autism still controls him.

So, yes, autism sucks. It controls many individuals and until we can learn how to help those with autism not be controlled by it…..I, the Doodle will continue to say.

AUTISM SUCKS…

Be Kind…support autism (even if you hate it, because it’s really the person you are supporting) peace hugs love a doodle.

No Halloween Allowed

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Halloween is around the corner. What will you do and how will it be handled in your home.  We gave up on Halloween years ago………….

The GIRL used to like Halloween. When she had the BOY she was so excited his first Halloween. She couldn’t wait to dress him up.

The BOY was only 8 months old on his 1st Halloween, so he didn’t really fuss when she dressed him as a beetle. On his second Halloween he wasn’t too excited to be a crayon and by his third Halloween he HATED being Elvis.

The GIRL didn’t give up on Elvis.

Every year she would sit for hours making his custom. Yes, the silly GIRL MADE his costumes. She wouldn’t go out and buy one. She would sit for hours at the sewing machine making him one. WHY? Because she has that crafty hand crap thing in her and she has to do it. She says it’s therapeutic for her. Personally, I don’t get it. Just go buy it and bring it home and wear it. Hmmm, who has autism here……

Together they would carve pumpkins with intricate designs. She would put newspaper on the floor and have the BOY help her take out the pulp. The BOY liked that part, but the candy and costume part didn’t cut the mustard in his book.

SO………….

After several more years of meltdowns that lasted hours and maybe one stop at a neighbors, the GIRL stopped making the BOY dress up. She thought that maybe he would do best handing out the candy when the other children dressed in costumes came to their home. That didn’t work either. He HATED the kids coming to the house and wouldn’t go near the door on Halloween.

So the GIRL and the BOY have not celebrated Halloween for years. The GIRL would just hand out candy to the other children who would stop by the house. It’s not always important to celebrate every holiday.

The GIRL was looking at some antlers in the store the other day. She better not think she is gonna dress me up since the BOY doesn’t want to. No way am I wearing something like that.

If you are a parent of a child with ASD, please consider your child’s limits. I’m not comfortable wearing antlers maybe your child isn’t comfortable in a costume. Is it really that important?

If you do go out start small, maybe go to 2-3 houses and build up each year. Maybe even go to people’s houses that your child already knows. Write a social story about trick or treating and practice getting candy.

 

Most important be safe support autism peace hugs love a doodle.

Hold for five minutes and then Laugh…

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It’s Friday night. The GIRL and I have been talking. Yes, I talk with the GIRL. She shares stories with me about the last 25 years of raising the BOY and surviving autism.

For the last couple of days we have all been happy. When the BOY is happy we are happy and life is good.

Tonight we talked about being happy and how you can love someone so much that causes you sleepless nights, hours of paperwork, breaks things, ruins most of your plans, screams, yells and yet on the other side is sweet, kind, gentle and just a love. That’s the BOY.

He makes us smile and he melts our hearts. The GIRL says the hardest thing of raising someone with autism is society. Now remember the BOY isn’t a child, even though I call him the BOY, so when he was young autism wasn’t a household word. Everyone just thought he was an unruly child with a horrible mother. The GIRL has been in many uncomfortable situations through the years and it took her a long time to find comfort in those moments where society was cruel. How did she do it? Well after she thought about the moments she laughed and she laughed and laughed. Finally one day no stares or comments bothered her, because she just found the humor in it all. Sometimes we just have to learn to laugh like….

…when we are in the store standing in a line for a very long time and he leans forward telling the woman she is excused and repeats this at least 4 times before the GIRL says, “it’s fine,” and the BOY blurts out rather loudly in the line, “it’s not fine, she ripped one and is suppose to say EXCUSE ME.”

Or

…when you are in a restaurant and he is in a bad mood or doesn’t like the PIZZA (remember it’s all we eat out) and he spits the food back on his plate and very loudly says, “YUCK…this is gross, I hate this restaurant, the pizza is GGGGRRRRROSSSS.” Now remember the BOY never says something like this just once.

Or

…when he sees a 6’4” man over 300 pounds with a beard and tattoos all over his arms and he walks right up to the man with perfect, I mean perfect, eye contact, points his finger at him and laughs. Laughs right out loud…

or

…when he comes out of the restroom and in a very loud voice says, “now the pee feels better”

or

..when your out somewhere and he just decides to dance and starts laughing out loud and saying, “I’m so happy, isn’t this great?

Or

….when he tells the woman that her dress is really ugly

or

…when we are having a really difficult day but we must complete our errands and he is calling me a MURDERER or GOATFACE in a store and EVERYONE is staring and moving to the front of the store, like there is a blue light special but in this instance to see if someone is getting murdered. People love gore.

BUT…… you have to LOVE it when he puts his arms around the GIRL from behind and says to her, “oh mom, I’m so glad you are home. I missed you so much.”

YES, autism with the BOY is sweet and sour (wish he’d eat Chinese food, I dig the wontons), but he is ours and well to be frank we think he is dog gone great.

 

Dealing and living with society is not easy.  Most people do not understand autism because they can not see it or they don’t want to understand it.   You must learn how to get over the clickers and shakers (the people who click their tongues and shake their heads at your child’s behavior).   Your child needs to be out in society. It is how he will learn. Never allow the looks of others to bother you. Our thing is: if the BOY isn’t hurting himself or others he is fine and let them stare. The BOY needs to learn. The BOY always learns, sometimes it just takes a little longer, but in time with patients, a positive attitude and persistence…….he does.

SMILE….it will be over before you know it. As we read on one mother’s blog…”you can do anything for five minutes,” and if we remembered who said it we would gladly give her credit, but of course we don’t.  After 5 minutes….. LAUGH……….

Support Autism Peace hugs love a doodle.

Out of Ordinary

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Today, the GIRL remembered…… and shared this story with me…. the Doodle.  I had nothing to do with this story, but here is how it went………

It was the later part of 1992 when the GIRL jumped out of bed like a greyhound taking off at the sound of a bell after a rabbit. It was four o’clock in the morning and the loud screeching sound of her alarm had just woken her.  The sun was still sleeping the night off and so was the two-in-a half-year old BOY.  The air was damp and cold for Orlando, and the GIRL shivered as HER bare feet hit the ground.  There was no time to crawl back into HER warm bed; SHE was on a very tight time schedule. The BOY and SHE had to be in Miami by nine-thirty in the morning. SHE knew exactly what had to be done to get out the door on time.  The one thing that SHE didn’t know was that on this day, one six-letter word would change their lives forever.

Five hours and fifteen minutes later the BOY and GIRL arrived in Miami at the Children’s Medical Hospital.  The BOY reached out and took HER hand in his as they entered the six-story stone building.  The lighting inside was dim; crying sounds echoed in the halls, followed by brief moments of silence.  Intravenous lines hooked to long metal polls on wheels were attached to some children as if they were an extension of their bodies.  Wheel chairs rolled up and down the hall occupied by small frail individuals.  If fear had an odor, the GIRL believed SHE smelled it that day. Parents lured behind their small fragile children, looking weary and worn in search of hope.

No one had a smile on his or her face nor did they look one another in the eye.  The BOY started to cry and tried to wiggle his small delicate hand from HER grip. It was almost as if he sensed, something was just not going to be good on this day. Unconsciously SHE tighten HER grip on the BOY’s hand and continued down the cold hall towards office number 226.

The receptionist was a middle-aged woman with a tight mouth and a turned up nose. She peered over her glasses, gave a little grunt noise, and abruptly handed the GIRL a clipboard with forms attached to it. “Fill these out and return them to me,” she said in a stern voice.  The GIRL took the clipboard in one hand, the screaming BOY in the other, and took a seat. SHE answered the extremely detailed oriented questions with speed and accuracy and returned them to the receptionist who simply pointed to a chair and informed HER they would have to wait to see the doctor.

After thirty-five minutes, a young nurse came over and escorted them into a small alcohol smelling room.  On the wall hung a stethoscope, a blood pressure monitor and an otoscope. The main piece of furniture in the room was a long shiny silver table covered with a thin piece of white crisp paper that you could almost see through.  The BOY seemed frightened as he tightly wrapped his arms around the GIRL’s neck like a baby monkey would to its mother.  The doctor came in; shook the GIRLS’s hand; and briefly introduced himself as Dr. X. He then asked the GIRL to leave the room in a somewhat polite tone. Outside the small room the GIRL sat like a statue.  The only thing moving was HER chest from HER heart beating heavily against it with anxiety.

Dr. X came out of the room with a frown on his face and beads of sweat on his forehead.  He simply asked the GIRL to get the BOY calm and meet him in his office.

Dr. X continued to ask a series of questions about the BOY’s three years of life. He placed his glasses on his desk, wiped his forehead, and said; “I don’t know how to say this, except to be up front.  Your BOY has autism.”  He proceeded to inform the GIRL that autism is a life long disability and what sorts of options are available for individuals with autism. SHE didn’t hear a word the doctor was saying.  The six-letter word autism kept echoing in HER head as if it had just been shouted from a mountaintop.

After explaining everything the BOY would not be able to do in his life to the GIRL and suggesting that the BEST place the BOY could live was in an institution, he bade his farewells and wished them luck.  The GIRL picked up the BOY and held him tightly in HER arms as if someone was going to take him away from HER and entered back into the busy cold hallway.  It was clear to HER now why no one looked one another in the eye in this stone building.  HER eyes started to swell with tears.  The BOY put his small hands on HER face and gave her one of his beautiful innocent smiles.  Suddenly something happened, HER tears stopped and SHE knew at that very moment that HER life with this atypical child would forever be blessed with treasures that many individuals would never have the pleasure of discovering so SHE looked in the BOY’s little face and said, “BOY, I promise I will make it better because I know you can and you will.”

SHE then undersood she was given a special child because on the day the Boys’ time came God knew an out of ordinary child would strive with the GIRL.

Her promise held.

support autism peace hugs love a doodle

 

 

Really Doctor…do you know about autism?

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Drs. and Autism. Don’t ya love them?

Office visit is at 4:00pm. We arrive at 3:50pm. Prompt!

The GIRL busts her butt to make sure we all get there on time.

SHE hates being late. SHE says it’s just down right rude, but she’s considering it now, especially for a  doctors visit.

Wait….wait…..wait….wait

1 hour 52 minutes the BOYs name is called.

HE is a bit charged at this point. “So BOY how are you today?”

BOY: “I DON”T KNOW LEAVE ME ALONE.”

And so it starts as he slams his body into her sofa. The doc gives up trying to communicate with the BOY quickly as he only gets LOUDER with her.

The GIRL just sits quietly as the doctor begins to tell the GIRL all of the things SHE SHOULD do and HOW SHE SHOULD do these things because ‘those with autism” need these things. The GIRL just nods. I wonder how many times she has heard these exact same words 22 doctors ago. Adult psychiatrists SUCK!

I’m thinking DOC what the heck is your flipping problem and are you yourself on drugs? Do you have rocks in your head for brains?

Have you ever lived day in and day out with autism? And do so for over 24 years?

Do you wake up in the morning with it and go to bed with it?

Do you know what it is to spend half the night up because your child (now an adult) isn’t sleeping? So in reality you haven’t really slept well since before he was born which is over 25 years.

How many over 20 hour meltdowns have you ever dealt with?

Do you have any idea what it’s like to hear the same thing over at least 200 times in one day?

Do you have any idea what it’s like to know you will never have grandchildren?

Do you have any idea what it’s like to be so damn tired but you know you have to keep on keeping?

Do you know what it’s like to watch your child climb the walls from the new medicine that you just gave him and said is the perfect one for him?

Do you have any idea what it’s like to have to fight for EVERYTHING? I literally mean EVERYTHING because society basically hasn’t accepted that a child like yours should have the same rights as everyone else?

Do you have any idea what it feels like to see your son graduate from high school and they sneak him in the back and then ask you to take him as soon as he gets on the other side of the stage?

Do you know what it’s like to know you are going to die and who is going to love him and fight for him like you?

Do you know what it feels like to never have your son invited to a party or go out with is friends?

Do you know what it’s like to everyday get up and try to remain positive?

Do you have any idea what it’s like to even have to FIGHT for an education for your child?

Do you have any idea what it’s like to know there is NO BRIGHT FUTURE for your son?

Do you know DOC REALLY DO YOU?

AT THIS POINT MY DOODLE HAIRS ARE ON END and I’ve only started with the Doc.

I’ve come to my final decision as a Doodle. I am not fond of people with all their fancy initials behind their names with LOTS of ADVICE on HOW TOs and YOU SHOULD BE DOING…..

I’ve decided that the next time we come to see the DOC and the DOC gives all this wonderful advice I’m gonna bark up and give her a piece of the DOODLE.

DOC, TAKE THE BOY FOR A WEEK AND THEN PLEASE TELL ME WHY IT’S FOR ‘THOSE AUTISTICS’.

6:05pm appointment over. Time with Doc 13 minutes.

Always remember you the parent knows best. You know your child better than anyone, regardless of their education. No ones knows what it’s like to walk in your shoes, expect you. When professionals give you a laundry list that you know is wrong. GET RID OF THEM. One, a good professional will NEVER give a laundry list, they understand life goes on and is already full and then adding autism makes it a bit rougher. A good professional will give a bit at a time so it can be handled by all and have positive outcomes.

Support Autism Peace Hugs Love a Doodle!

Autism Movie Lines

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Going out a day with the BOY is sometimes like a burlesque show. I have to put my ear to the ground and take lessons from the BOY. He is as smooth as a slicked back hairdo. HE knows what excerpts to pick up from those thousand of hours of Disney movies. HE knows how to use them and HE uses them.

The BOY watches the same movies over and over and over and over and over and over and over and over……well heck you get it.

I’m like NO..PLEASE I’LL LICK ANYTHING CLEAN FOR YOU ….JUST DON’T PLAY IT AGAIN…….and HE DOES.

So let’s just get it straight a Doodle’s life isn’t all glam. Really, the first time or two it’s OK but seriously do you really think you could hear the same movie over 525 times in …..a flippin’ week. It’s a little like the old Chinese torture. There are times I want to pull my fur out one by one.

Doodle back on point.

Yeah right, using the lines in the right place.

The BOY at the grocery store as the girl shoves the food through the scanner and over to be bagged. She rarely looks up, only for a moment to say hello and then immediately back to the scanning, but the BOY is SLICK. You know he chases name tags, faster than I can chase my tail, so the grocery line goes something like this:

BOY: “Oh Sandy is that you?”

Sandy: “Yes,” (very hesitantly) Sandy continues to scan, no emotion at all on her face, she doesn’t even smile at me and hey I am a chic magnet but nothing so that is when the BOY steps up his game.

BOY: “Sandy, you’re looking marvelous today…is that a new haircut?” (from Monsters Inc)

SANDY: looks up with a little blush on her cheeks…”Oh…my how did you know…thank you so much.”

BOY: “Oh yeah Sandy you look marvelous.”

SANDY: Now very happy that someone paid her a compliment. “Well, what’s your name?”

BOY: “I’m the BOY and this the Doodle.

SANDY” “Well the BOY it’s so nice to meet you and your Doodle is handsome.”

BOY: “oh yeah, (we are bagged up and paid) well I gotta go. See ya Sandy.”

Sandy is still smiling as we walk away with BOY pushing the cart.

In a restaurant it could go like this:

BOY: “Julie (the waitress, as you know we know all the servers names in every pizza restaurant near our home cause we ONLY EAT PIZZA for lunch) you have beautiful eyelashes (from Hercules said to Meg).”

JULIE: blushing….”Why thank you.”

BOY: “Oh Julie you are so beautiful.”

I’m thinking BOY, can you tell her she can pet me. She is a beauty.

JULIE: “So BOY (the servers ALL know us too) how is your day going.”

BOY: “Oh, nothing.”

The BOY has a ton of these lines and the strangest thing is that even though communication is one of his weakest links, he knows how and when to use these lines. They still work on the GIRL when she puts on a new outfit and he says, “Well if you ask my opinion, that dress is rather slimming on you.” (Tarzan) Yeah, the GIRL likes it, even if the dress is 2 sizes to small.

Sometimes the BOY will say things like this to the Ugleest girl I’ve ever seen. I’m like BOY don’t tell her she’s beautiful and before I know it he reads that name tag and blurts it out, and then I see the strangest thing happen. The Uglee girl lifts her head high and graciously thanks him for his kindness and BOUYA the BOY has a new friend and made a change in someone’s day.

So what’s a Doodle’s point. KINDNESS. The BOY has KINDNESS, something we all need. He doesn’t look at people as short, fat, skinny, old, ugly, beautiful, smart or dumb. People are all the same to him and he is KIND. We all need to try some kindness. It makes every one feel warm an’ fuzzy inside, and shouldn’t everyone at sometime, somewhere have that feeling?

Tell the G-D damn stroller pushing people at Disney this. SPREAD THE KINDNESS!

Peace hugs love a doodle that supports autism.