Autisms – A day in the life of what autism is like for us.


Since today is World Autism Awareness Day I figured I would spread some awareness to you guys just like I did to the people at the park and my neighbors.

Sam is a very sweet boy. He is such a joy, such a love, the world is a better place with Sam here. But he has some very difficult behaviors lately. And most of them aren’t really due to his autism but to the other disorders he has – mainly OCD (obsessive compulsive disorder) and SPD (sensory processing disorder). He obsesses over things and gets very anxious when things don’t go exactly the way he wants them to. And he is very sensory, he has a hard time with loud noises, bright lights, he needs constant motion just to feel normal, he needs deep pressure, proprioceptive and vestibular input all day. He is still pretty much non verbal, has no concept of danger, and elopes every chance he gets. Like at least twice a day at school.  So he can be quite the handful.

It really should be plural — “Autisms” — to best describe autism… because there are many different kinds of autism. I want to help people understand more about Sam’s autism. I think one good way to give you an idea of what autism is like for us is to give you an example of a typical day for us – today – here’s how today unfolded…

3am – Sam is actually sleeping, but often he is up and having a party at 3am. Sleep disorders have been a constant with him since he was born. The kid can function on little to no sleep. I’m up with baby, she still eats usually once or twice a night, so with these two I very rarely get a good nights sleep.

6:30 – 8:00am — wake up, get 3 kids ready fed and dressed, 2 kids ready for school. #1 goal: Try to keep Sam happy during this transition (he doesn’t like transitions) try to keep him from getting stressed out, having a meltdown, and injuring himself. #2 goal: get them to school on time, groomed and fed.

8:30am- 9:30ish…am — drop older kids off then walk with baby at the park, pause and admire the trees, the alligators swimming, hawks and eagles, owls. I feel so blessed to have this kind of beautiful nature so close to my son’s school.  I drop him off and head there after and enjoy some calm, peaceful moments. Realistically the only calm and quiet I will experience all day. I deserve it and I take it. And soak it all in. I walk fast and sweat my stress away. And hopefully some pounds, too.

10am – 2pm — home taking care of baby, at this clingy 8 month old stage. She is so sweet and happy and I want to love her and squeeze her all day, but I need to clean and make phone calls, like that dentist appt I’ve been putting off and stuff, because this is all the time I have to actually get things done, and the house looks like a bomb went off, as usual. But alas I have a baby and she will not settle or nap, she will demand my attention all day, and I will accomplish little. This too shall pass.

2:20pm – drive to get kids, dodge idiot slow drivers who are on vacation while I’m just trying to get from A to B on schedule, feed baby a bottle while driving.

3:15 – arrive home with all three kids. In the driveway, after Sam obsesses over our cars doors for 5 minutes or so, he is ready to move on to his other ritual, shredding the leaves on the bushes in front of the house. And now that the car doors have been obsessed over and the leaves have been shredded we can go inside happily. If I try to cut that ritual short he will have a meltdown. I follow with him on his car harness and attached leash, which is tightly wrapped around my wrist while I carry baby. If he wasn’t on the leash he would run off. I know because of all the times he has run off, and because my wrist is red from all the times he tried to run today already. And since he has no concept of danger, running off can have major consequences.

3:40 hubs is home from work, yay! someone to help me with the kids. But of course he’s tired because he was working all day. Me too. He rushes to get ready, change his shirt – today Sam has OT. Dad takes him, he has a good session except for obsessing over the cars in the parking lot, as usual.

4:40pm – boys are home and Sam wants to go to the park. He is freaking out, crying, sobbing, screaming, begging to go to the park for his daily nature walk. We tell him he needs to wait, it’s not time yet. He is upset, cries big elephant tears, breaks mamas heart, all because he has to wait a few minutes before he can go to the park. I buy him a $2.99 in app purchase for his car wash app and he’s thrilled, he has 32 more cars to wash, he is happy now and will actually wait for the park without freaking out the whole time. $2.99 very well spent.

6:00 – Sam and I head to park – get there – he obsesses over every car in parking lot. He wants to touch them, open the doors, or at least try to, peek in each window and admire the interior — sometimes he gets one with unlocked doors and that’s the jackpot. He’s so big now, 9 years old, 65 pounds, all muscle, that it is a full on wrestling match to keep him away from other people’s cars. He is totally obsessed with cars, like on an unhealthy OCD level. We’re working on hopefully getting past this phase soon.

7:00pm – he’s ready to leave the park because he’s too obsessed with the car that was unlocked to have any fun on his nature walk. All he can think about is opening the car doors. He is totally obsessed to the point that all his muscles are tight and he is having a total meltdown when I tell him he can’t touch the cars. I give in and let him touch them. I failed, I know. But at least he can stop freaking out. Well, a little at least.

7:20 – almost home but he wants to go to the park in our neighborhood now. I say ok since daddy started this ritual and he said Sam likes to climb trees and stuff so it seems harmless enough. On the leash, of course, or he will probably run into the road. Or at least into someone’s car.

arrive at park – Sam sees all the other cars and freaks. Has to touch them. But the owners of all the cars are there, playing tennis, swimming, basketball, and staring at us. So I wrestle him, beg him, tell him “NO TOUCHING CARS!”

Everyone is staring. Not every day you see a screaming, flailing 9-year-old on a leash with a mom wrestling him and telling him “no cars”. We know a few people, say hi. The others are staring so much I look at them and joke – “Well today is Autism Awareness Day so I guess we are spreading some autism awareness here haha”

They just keep staring. No laughs. No “It’s ok” — nothing but scorn and judgement. Which we unfortunately are very accustomed to.

Our house is through the woods at the park, a shortcut. I’m so tired and done from the day that we go through the woods and walk  home. Leaving our car at the park so we can avoid more parking lot drama. And more stares. I have to drag Sam home because he wants to touch our neighbors cars. He is screaming and crying as I try to wrestle him away from the neighbors driveway and pull him in the house. I come in front door with a screaming Sam.

Hubs is home with our baby and 11-year-old. I am spent, I tell him he needs to take him because he’s the one who started the whole routine of going to the neighborhood park. I’m mad, he’s tired, I’m tired, we’re so stressed. I yell, tell him he shouldn’t have started taking him there because it’s too tough. He takes him and we trade, now I’m home with baby (screaming hungry tired baby) and 11-year-old (of the ADHD, grumpy, whining, I hate homework variety).

At this point I am trying to feed and settle the baby. I asked hubs to make sure she did her homework while I was at the park. He didn’t. (but he did do the dishes and laundry so that helps) So here we are, in another homework battle of wills. And she is definitely going to win. I have no fight left in me. All I can do is beg her to do her homework.  Pretty, pretty please! And after that shower and brush your hair. PLEASE! Be a good girl for mama, don’t argue, just do it. PLEASE. She rolls her eyes. I hate puberty! This is going to be an interesting few years. And, like her, I also hate homework. I think it’s crap that they make kids do school work after they’ve been at school all day.

After the boys go back to the park and get the car, obsess over cars, who knows, I didn’t ask, Sam is home and obsessing over something else and feaking out and screaming. We tell him it’s time to settle down, take bath, transition him to his room. He’s happy, door closed and locked. whew!

And I look and it’s 9:11 – first of all that’s way earlier than usual, so that’s good as long as he actually settles down. And second – it’s “11” – I always see 11’s – supposedly it’s the angels telling me they are here and listening. ha. If they are listening hopefully they are bringing me lots of money soon so I can hire help, buy a big house, have a huge yard with a big unclimbable wall around it, you know, the usual. http://numerology-thenumbersandtheirmeanings.blogspot.com/2011/05/number-11.html

Now it’s time to figure out what to eat. I’m starving.  Now that’s Sam’s settled down I can relax a little. Oh and make sure the other kids have what they need. I play catch up, make sure 11 yr old has homework done, help her brush hair, love on her, apologize for being so stressed and busy all the time. Baby is asleep, finally, after a pretty much nap-less day. She only napped in the car so that doesn’t count.

It’s already 11pm. Time flies. Kids are asleep, and I finally get to rest. I  melt into my bed and sleep.

2am – Sam’s awake. party time. He’s running all over his room, climbing, jumping. I can see him on the video monitor. I give him his iPad since he obviously isn’t going to settle down. Baby wakes up for a bottle. Feed her and settle her back down.

Baby won’t sleep. Sleep, baby, sleep! Please! Pretty please?!!?

4am – baby is still awake. And so is Sam. And me. I give Sam a snack in his room, water and cheez its, his favorite. He’s so picky he doesn’t eat much so I figure he’s probably hungry. As soon as I close his bedroom door and walk away I hear the cheez its get dumped on the floor. Then the water. Oh good, another mess to clean. Something about the smell of wet cheez its totally gags me.

4:30am – baby is finally asleep, Sam is still awake, locked safely and happily in his room. I fall asleep.

5am – jolted awake by what sounds like crying. But it’s the damn cat! Cat, you don’t realize what you are doing to me. This is all I have, these few hours of sleep, please shut up. Please please, pretty please. In my half asleep grumpy tired mind I think about throwing the cat in the pool. That’ll teach her. But she’s spared. Instead I let her in off the porch and she shuts up. Smart move, cat.

6:30 – Wake up time! What? No! Not yet. I just started to actually get some good sleep.

…and repeat.

 

He is way smarter than you might think he is


Sure he doesn’t talk much at all. He seems in his own world at times, and getting his attention can often be quite the challenge. He would rather push you down the slide than talk to you or listen to you. It’s because he likes to watch things go down the slide — not because he likes to push people. You are just furniture in his life.

So I can see how one would then possibly come to the conclusion that he is not very smart. Mentally retarded. Not aware of what is going on, etc.

Wrong.

As far as intelligence goes, he hit some milestones before my typical daughter did. Like his ability to count at a very early age, his total mastery of the alphabet by age 3, his super genius puzzle skills, and his understanding of mechanics and how everything works. He knows how to work an iPhone or iPad better than I do. He is also pretty darn good on the keyboard and drums, and he sings and dances like a star. 🙂

Einstein was a late talker and some think he may have had autism. As well as many other great minds throughout history including: Nikola Tesla, Thomas Edison, Isaac Newton, Mozart, Beethoven, Van Gogh, DaVinci .. the list goes on and on. They were absorbed in their work and often times anti social and what most people would consider “weird”. And yet we recognize them as geniuses who changed the world.

He is just ignoring you. He has other things that he is interested in instead of communicating or socializing with you. Don’t get me wrong, he does communicate — he talks and uses sign language and is improving everyday — and he does like to be social. He loves his family and loves having people around. And tickles. And hugs. And dancing and singing with me.

Just because he is ignoring you doesn’t mean he isn’t aware and he doesn’t have intelligent thoughts. It probably just means you aren’t as interesting as watching himself dance in the mirror, or Elmo, or the iPhone.

Autism isn’t as scary as the news wants you to think


     Are you afraid of autism?

     When I was pregnant I was afraid of being too stressed out because I heard stress causes autism. I stressed over not stressing.

      I know the main reason I get the same questions over and over again about autism is because people are afraid. They want to know how they can dodge this bullet.

     Fear not.

     Autism occurs in 1 in 100 children and 1 in 70 boys.

     Scientists have NO CLUE what causes it. No matter what the study you heard on the Today Show said — the fact remains, they have no idea what is causing autism.

     It is believed to be genetic. There is no test for the gene. So you have no way to know if you have the gene.

    So really, it’s a crapshoot.

    No matter how many things you avoid, no matter how much you worry about not worrying, no matter how close in age your babies are, or whatever the latest study is telling you to be afraid of, your odds are the same. And frankly, they aren’t that great as far as avoiding this thing you fear so much. If you have a kid, your kid has a 1 in 100 chance of having autism. If that child is a boy, he has a 1 in 70 chance of having autism.

     AAAAAHHHHHHHHHHHH!!! I’M FREAKING OUT!!! SCARY STUFF …. right?

     Nah. Autism isn’t scary and it is nothing to be afraid of. I think it is a gift – and so does Dr. Temple Grandin – she has autism and she wouldn’t change it for anything.

    And I wouldn’t change my son for anything. He is perfect and awesome just the way he is. (Yes, I really think that. I really wouldn’t take his autism away if I could – though I would definitely get rid of some of the not-so-fun behaviors.)

    So I think you should just take a nice deep breath (deep breath in …. deep breath out …… there …. doesn’t that feel better?) and stop worrying so much. Your kid will be fine, and no matter how much you worry and avoid things that may cause autism — he will still have the same odds of having autism. Sorry Charlie.

   Fear not. Everything is as it should be.

“He doesn’t look like he has autism.”


 

What do you think autism “looks like”?  Like Rain Man?

Doctor: Raymond, do you know what autistic is?
Raymond: Yeah.
Doctor: You know that word?
Raymond: Yeah.
Doctor: Are you autistic?
Raymond: I don’t think so. No. Definitely not.
                                                      —- From the movie Rain Man

     Autism can only be diagnosed by observing behavior. There is no blood test or brain scan that shows that they have autism. There are no characteristic facial traits or other physical signs of autism. They look just like anybody else. For more details on autism I recommend you read my other post: What exactly is autism? How did you know he had autism?

     They don’t all look and act like Rain Man.

     Though some are savants, they aren’t all human computers like the character in Rain Man. And actually, though the person they based the character on had autism like tendencies — his actual diagnosis wasn’t autism. 

     His name is Kim Peek:  “Kim Peek was born on November 11, 1951. He had an enlarged head, with an encephalocele, according to his doctors. An MRI shows, again according to his doctors, an absent corpus callosum – the connecting tissue between the left and right hemispheres; no anterior commissure and damage to the cerebellum. Only a thin layer of skull covers the area of the previous encephalocele.”  He had an ability to retain 95% of the information he received, most people remember more like 45%.  (I grabbed that info from this site)

     So you are right. My son doesn’t LOOK like he has autism.  But he sure does ACT like he has autism. 😛

Are you a polluter?


When I asked someone if they know where I take the batteries to be recycled she looked puzzled and said “I always just throw mine away.”

So I realized it isn’t common knowledge that batteries shouldn’t be thrown away, and that they are contributing to the pollution in our food and our water. This is stuff I learned in my endless hours of autism research, and I just assumed everyone knew. So in case you don’t here is the info:

Batteries contain all kinds of toxic ingredients including mercury, cadmium, nickel, and lithium.

While some manufacturers have reduced or eliminated their use of mercury in consumer and commercial or industrial products, there are still many existing items in the marketplace that contain mercury.  Click here to find out which common household items contain mercury: http://www.epa.gov/hg/consumer.htm 

And so what’s the problem with throwing away a little mercury?

Mercury, an element naturally found in the environment, is also a very serious toxin. Mercury can harm the brain, heart, kidneys, lungs, and immune system of people of all ages. It has been demonstrated that high levels of methylmercury in the bloodstream of unborn babies and young children may harm the nervous system and delay cognitive development.

The mercury goes into the environment and then into the food chain. How?  The mercury enters the environment and it eventually settles in the water. While in the water, microorganisms transform mercury to methylmercury, a highly toxic form of mercury that can build up into high concentration in an organism. Every time the fish eat the microorganisms, they build up their methylmercury concentrations. Every organism that eats these fish is also building up their methylmercury levels.  So the cycle goes on and on, and essentially you are eating the batteries – see how I did that there?

Rechargeable Batteries
Rechargeable batteries are full of all types of toxic heavy metals, etc.  Luckily, the battery industry sponsors the operations of the Rechargeable Battery Recycling Center (RBRC), which facilitates the collection of used rechargeable batteries collected in an industry-wide “take back” program for recycling.

And so you ask: Where do I recycle my batteries?

Call2Recycle® is the only free rechargeable battery and cell phone collection program in North America. Since 1994, Call2Recycle has diverted over 60 million pounds of rechargeable batteries from the solid waste stream and established a network of 30,000 collection sites. Advancing green business practices and environmental sustainability, Call2Recycle is the most active voice promoting eco-safe reclamation and recycling of rechargeable batteries and cell phones. Call2Recycle is operated by RBRC, a non-profit organization. http://environment.about.com/gi/o.htm?zi=1/XJ&zTi=1&sdn=environment&cdn=newsissues&tm=123&gps=416_180_630_493&f=10&su=p1037.1.155.ip_p504.1.336.ip_&tt=2&bt=0&bts=0&zu=http%3A//www.rbrc.org/

Recycling of non rechargeable batteries is becoming more commonplace, but it can still be a challenge to find a local drop-off location.  If you type your zipcode into the drop off center locator on this website you can  find the nearest spot to recycle your alkaline batteries: http://earth911.com/recycling/hazardous/single-use-batteries/

Older Batteries Should Always Be Recycled
Old batteries that were made before 1997—when Congress mandated a widespread mercury phase-out in batteries of all types—should most surely be recycled and not discarded with the trash, as they may contain as much as 10 times the mercury of newer versions.

Every little bit helps. I hope you will do your part in trying to clean up our environment and preventing further pollution 🙂

“Do you think his autism was caused by the shots?”


Short answer: Maybe.

Long answer: I think my son was born with autism. I even think he had autism while in the womb. I think autism is a part of who my son is, and I think he has always had autism. In the womb he didn’t kick very much. He moved so little that twice I checked myself into the hospital because I was afraid he had died in there since he never moved.  Also, anytime I would rub my pregnant belly and try to picture who my son was and what type of person he would be I would always picture him at a table with a tutor. I envisioned that he would need extra help, that he would have trouble learning. And at the same time I knew he would be fine, and that we was smart – just different. I don’t know why I had these thoughts – and now I see that I must be psychic.  I will add that to my to do list: work on harnessing my psychic power. 🙂

He was always different. If I had known the early signs of autism it would have been obvious that he had autism. But I had no clue what autism was. And so he wasn’t diagnosed until he was 2 1/2 even though I always knew he was different. So I don’t think my son was born typical then changed, or got a shot and suddenly had autism. I have heard many first hand accounts of that happening though, so I believe it is true and it happens. They basically break it into two categories – early onset and late onset autism.

“There are two types of autism—an early-onset type and a later-onset regressive type—retrospective studies have suggested. When infants have the former, their level of complex babbling, word production, and declarative pointing are lower than those produced by typically developing children at a year or so of age. When infants have the latter, they behave essentially like normally developing infants during the first year or so of life, but by age 2, use significantly fewer words, respond to their names much less often, and look at people much less often than typically developing children do (Psychiatric News, October 7, 2005).” http://pn.psychiatryonline.org/content/42/15/28.1.full

So is it the shots or not?

Well I think you should definitely be educated on what is in the shots. And be aware of how many toxins are in there, the fact that formaldehyde is in the shots. On the CDC website you can read about the ingredients: http://www.cdc.gov/vaccines/pubs/pinkbook/downloads/appendices/B/excipient-table-1.pdf

and on another government website you can read about how formaldehyde is classified as a known carcinogen: http://www.cancer.gov/cancertopics/factsheet/Risk/formaldehyde

So yeah, I would then think that most rational folk would ask “So why are you injecting us with it?”

So is it the shots or not?

I think it has something to do with toxins in our environment.  And those toxins enter our bodies through the water we drink , the air we breathe, the food we eat, the shots we get, the paint, the plastic, the aluminum, the mercury, etc. I believe what the scientists have found in their research.  I think genetics comes into play because we don’t all react the same to these toxins.  Kind of  like how smoking causes cancer but some people can smoke their whole lives and never get cancer.

Here are some notes I took at an autism conference about this:

“It is believed that autism is 90% genetic. These genes aren’t all bad – sometimes they create genius!

Autism seems to be caused by a group of genes all acting together to create autism. These genes are called the “Broader Autistic Phenotype”. Evidence of this can be found in family members of the affected child. They tend to have ADHD, social deficits, and depression. So autism is the collaboration of all of these genes working together to create autism.”

So basically I think, and science seems to be proving, that autism is genetic and those with autism have a predisposition to being affected by these toxins. So in a roundabout way – yes, the shots can be causing autism. Just as much as the water, and the food, and the plastics, and the bug spray, and the fertilizers, etc.

Do I vaccinate my kids? Not anymore. They’ve already had all of the shots that I was required to have. They both have the “religious exemption” and I know what all the nay sayers say — but look at the vaccine requirements when we were kids vs today– why do they have to get so many compared to when we were kids? Requiring two chickenpox (varicella) shots in order to start kindergarten is where I drew the line.

Comparison of CDC Mandatory Vaccine Schedule
Children birth to six years (recommended month)

USA 1983

DTP (2)
OPV (2)
DTP (4)
OPV (4)
DTP (6)
MMR (15)
DTP (18)
OPV (18)
DTP (48)
OPV (48)

USA 2008

Influenza
(prenatal)
Hep B (birth)
Hep B (1)
DTaP (2)
Hib (2)
IPV (2)
PCV (2)
Rotavrus (2)
Hep B (4)
DTaP (4)
Hib (4)
IPV (4)
PCV (4)
Rotavirus (4)
Hep B (6)
DTaP (6)
Hib (6)
IPV (6)
PCV (6)
Influenza (6)
Rotavirus (6)
Hib (12)
MMR (12)
Varicella (12)
PCV (12)
Hep A (12)
DTaP (15)
Hep A (18)
Influenza (18)
Influenza (30)
Influenza (42)
MMR (48)
DTaP (48)
IPV (48)
Influenza (54)
Influenza (66)

Too many, too soon?

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