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.

 

The Autism Mom’s Guide to Snaking Your Main Drain. Yeah, it’s not as fun as it sounds.


Sammy likes to flush everything.  Toys, coins, beads, food, gallons of milk, bars of soap, toothbrushes, anything he can find. And so he often clogs the toilet.

I really didn’t have a grasp on how the whole plumbing system of my house worked until Sam started causing countless plumbing woes. And out of necessity, because I lacked the funds to hire another plumber, I learned how to do it myself.

If the clog is in your toilet, but the plunger won’t work, you can use a snake. You can buy one at your local hardware store. Don’t buy the cheap one, it will break. (yes, I learned that the hard way) Buy the more expensive one (which will only be about $20 or so)

The snake will remove most toilet clogs – like plastic big birds, toy phones, and bars of soap.

But sometimes, the snake doesn’t do the trick either. That’s because the clog is past the toilet, it has gone into the main drain line.

Here’s a picture that explains it:

…oh wait.. that’s the wrong picture. Here it is:

Basically, all the drains in your home feed into a main drain line that runs under the house, then underground through the yard and out to the sewer or septic tank. And they all feed into it at a  different place, so in my house for instance it starts in my bathroom, then goes to the kitchen, laundry room, and guest bathroom – the sink, then toilet, then tub. So if there is a clog in the main line, you can pinpoint it by what drains and what doesn’t. If my tub drains but the toilet doesn’t then the clog is between the toilet and the tub. But if the tub won’t drain either, then the clog is past the tub, in the main line somewhere between my bathroom and 75 feet or so into my front yard on the way to the sewer.

And this happens at least twice a year. We hit a point where nothing in the house drains, no toilets, tubs, or sinks, and so of course it is a total disaster situation and we need to remedy it immediately. A typical plumber will charge at least $50 just to show up and knock on your door. And usually ours clogs on weekends, of course, so we would have to pay extra to get a plumber out. Any work on top of that and you are easily looking at hundreds of dollars in plumbing bills. All for that stupid toy that he flushed. The one he begged you to buy, then as soon as he got home he ran to the bathroom and flushed it. Yeah, that one.

So if you are in a similar spot as me, and you just can’t afford another plumber, then you can do it yourself. Yes you can!

You need a power snake. It is like the little toilet snake I mentioned before, but it’s bigger and badder. It is powered and long. They come in different lengths – 50, 75, 100 ft. We usually get the 75ft, it’s about 100 ft from my house to the sewer so it’s a risk that it won’t be long enough, but so far 75 has been enough. 50ft is too short, I think. Usually, in our situation, the clog seems to be about 70 ft or so into our yard.

You can rent one from Home Depot for about $60.

So Step One: Admit you have a problem and go rent a power snake.

There it is, don’t be intimidated, you can DO THIS!

Step Two: Locate your clean out valve. Ours was really hard to find, even the plumber couldn’t find it and he ended up taking our toilet off to do it. You cannot power snake the drain from the toilet, tub, or sink because they have traps and the snake will just break the pipe. So if you can’t find the valve you can take the toilet off and snake it through there  – but that’s a big pain. The clean out valve is usually located on the ground, near your house, either on the front or side of the house. If you can’t find it google “how to find my clean out valve” and it will give you some tips, that helped me find mine. Mine is on the outside wall of my house under my bathroom window – which is a really weird place, I found it all by myself :)

They usually have a round top with a square head and you need a set of big pliers to open it.

Step Three:  Set up your work space. You will be here a while, so I suggest you bring a chair.

Step Four: Bring the snake into position, set up the pedal where you can easily reach it with your foot. Make sure there is nothing in the way that may get tangled or snagged. The snake is strong and powerful but you always have control of it with your foot so you can always stop it if you need to. You absolutely must have leather gloves to do this. NO way around it. Home Depot gave them to us when we rented it the other two times but this time they didn’t so make sure you ask for them.

Pull the snake out and put it into the hole. Don’t try to shove it in, it will feed itself in once you turn it on. haha.

Foot on pedal, the little black thingy – that’s the pedal.

Step Five: You are ready to go.  Plug it in, turn the power switch to “Forward”. There are three settings – forward, reverse, and off. Forward sends it in, reverse sends it back and winds it up. It doesn’t do anything until you push the foot pedal.

Ok so when you push the pedal you need to have both hands on the snake as you feed it into the hole. It doesn’t just feed itself, you have to pull it and feed it in. Make sure it doesn’t get stuck or too much slack. If you hit a clog you can’t get past, sit on it for a while and run the snake then back it up. You may pull the clog out this way.  If you allow it to get too much slack you run the risk of it recoiling, and you could possibly get your fingers caught in there. Yeah, there’s even a “Watch out you can lose fingers” sticker on it. And that freaked me out too, and the first time I used it, it wasn’t feeding right and I got too much slack and it recoiled – it wasn’t that scary but I can see how it could have totally caught my fingers and been really extreme –  but it really isn’t as crazy as it seems. Once you get a feel for it you will be a pro like me. You can always just lift your foot off the pedal and stop it, even if you get a bunch of slack and it gets crazy, just remain calm. You are the master of this machine. Show it who’s boss. It’s like a sewing machine on steroids – a piece of cake.

I had to take a hand off to snap the pic, hold it with two hands as you push the pedal and feed it in. At first I had a hard time getting it in, but just be patient and keep trying, once you get past the first curve it’s smooth sailing.

You may feel it hit an obvious clog, or it may knock it out of the way without you noticing. Sometimes when you reverse it and pull it out you pull the clog out too, other times you never know what clogged it. This time it looked like our clog was just a bunch of paper towels – the snake came out wrapped in wads of them….

Ewwww

And yeah, it’s really me doing this work. Don’t I look like I am having fun?

Yes, it’s really me doing the work. I’m having a blast as you can tell.

So there it is. After that you just reverse it out, hose it off, and bring it back to the store. (they’ll charge you if it’s dirty) Check the tub and toilets to make sure they drain well. If they don’t, just snake it again. The snake comes with different attachments, I haven’t needed them yet, but if it doesn’t work the first time try the attachments.

Happy Snaking Everyone! :)

Aside

Last year, when I heard Dr. Temple Grandin was coming, I almost choked on my bagel.


My admiration for Dr. Temple Grandin started a few months after my son was diagnosed with autism. He was diagnosed May 30th, 2007,  at age 2 1/2.   He started speech and occupational therapy. And while he was getting his therapy, I would sit in the waiting room and read books about autism. Book after book.  After book. …after book.

I felt so lost and clueless about how to interact with my son and how to help him. I had little idea about what autism was and what the diagnosis meant.  And so I realized, I just needed to learn all I could so I had a total grasp on what this diagnosis meant.

Knowledge is power.

And as I read and read one name kept popping up: Temple Grandin.  And she was an example, and the only example it seemed at times, of how autism could actually be a good thing. A gift, in fact.

More info about this absolutely amazing woman, my hero, Dr. Temple Grandin – a woman with autism who is also a college professor and has a PhD and has revolutionized the cattle industry and created more humane treatment for these animals, can be found at: http://www.templegrandin.com

So anyway… I was at our annual  local autism conference, which is a totally awesome conference especially considering our area and how small on the radar it is.. and I was eating a yummy bagel before the conference started and chatting with the people there and someone said ” …well next year Temple Grandin will be here…”

…and I was so in shock from what I heard I inhaled deeply in shock, like an  “uuuuuuuuuuhhhhhhhhhhhhh” kinda noise…. except I had a piece of bagel in my mouth…

Luckily, my tongue stopped it from lodging in my throat.

But I definitely “almost” choked on my bagel.

Dr. Temple Grandin is my hero, and I hoped to someday meet her, but never imagined it would be so soon – and so close to where we live.

Fast forward to a year later, I counted down the days and finally it arrived! I have a short video of me asking her a question about my son not sleeping much at all. I was so nervous but I seemed to get through it alright. My mom shot the video. Thanks mom :) I also got a chance to meet her and get my books signed. It was such an amazing day that I will cherish forever :)

Here it is – me talking to my hero. She is amazing. Her speech was amazing. I am still in awe.

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Please tell me you don’t seriously think autism is a fad!


Happy Autism Awareness (and Understanding and Acceptance) Day! :)

I read another “no offense to people who have kids with autism, but I think autism is a fad and is overdiagnosed” comment yesterday. And it ticked me off.

Definition of FAD

: An intense and widely shared enthusiasm for something, esp. one that is short-lived; a craze.

 Definition of AUTISM

: a variable developmental disorder that appears by age three and is characterized by impairment of the ability to form normal social relationships, by impairment of the ability to communicate with others, and by stereotyped behavior patterns

 
 
 
You know, maybe there is something to that comparison. Because autism definitely involves “An intense enthusiasm for something” …though, not always so “short-lived” and definitely not usually “widely shared”- like Sam’s current obsession with the iPad, or flushing the toilet, or swinging on doors, or shredding stuff…
 
But when people say that they think autism is a fad, and the new ADD, etc. they aren’t talking about Sam flushing toilets – they are saying that we are jumping on some sort of bandwagon. That it’s the “in” thing to do.
 
And you know as I typed that I had a bit of a lightbulb over the head moment (maybe even a blue lightbulb perhaps) and that “ding ding ding” sound — so here’s my clever thought: ADD was believed to be the “fad” back when we were kids – and now we are all adults and having kids and “they” say autism is the fad now. Sooo… since we are thinkin it might be genetic, maybe the autism is the next generation of ADD. Like those with ADD have kids with Autism. My hubs has ADD. And my daughter does, too. Evidence shows that Autism may be several genes working together to create autism – some of those being the genes that cause ADD.
 
Soooo… in a way, they nay-sayers are right.  Autism is the new ADD.
 
But they say that the rise in Autism rates (now 1 in 88) is due to over diagnosis and increased diagnosis of those who are just “socially weird”  and years ago wouldn’t have been diagnosed. And I think that may be some of the reason. But no way can it be the only reason for the drastic rise.
 
This piece of an interview with the director of the National Institute of Mental Health, Dr. Thomas Insel, and Dr. Peter Bearman, the professor of Sociology at the College of Arts and Sciences at Columbia University, helps explain what the research indicates as far as why the rates are on the rise.
 
Dr. Insel: From what you know now when you add all of those together how much of the increase can you explain?

Dr. Bearman: Well that’s a complicated question, but I think we can pretty uniquely associate about a quarter of the increase from the birth cohorts from 1992 to 2001 which is a lot, to diagnostic change on the border between diagnosis and mental retardation in autism. I think we can associate about 16 percent of the increase on the other border between autism and other neurodevelopmental disorders on the spectrum: Asperger’s, PPDNOS etc. And those are largely non over-lapping components of increase, so that’s about 40 percent. I think the spacial clustering itself adds another few percent. I would say I am confident that 40 percent of the increase I think I know what caused that. That leaves a lot of increase left, 50 percent is a lot to look for still.

Dr. Insel: Any ideas about what’s driving that other 50 percent?

Dr. Bearman: Well, some is genetic. I think that the increased parental age accounts were 11 percent of the increase over this period and that’s a lot and the mechanism by which increased parental ages expressing itself I think likely largely genetic. I think the tricky part is going to recognize that it would be harder now to find that 50 percent. It would look like it should be some toxicological environment that’s shared because of the spacial clustering. Because there’s a very strong process of amplification of the understanding of autism that leads to increased diagnosis as parents learn how to recognize symptoms a very, very, small event that would transform the environment five years ago, ten years ago, even you could imagine, 40 years or 50 years ago, when the moms of children with autism now were in utero as eggs- a very small event could cascade into a larger epidemic now.

Dr. Insel: So what do you tell parents who ask about this if you have friends who have autistic children and they say “What’s going on here? Why this epidemic?” What do you say in response?

Dr. Bearman: Well, I think parents are struggling. It’s just enormously difficult to have a child with autism. It makes it very hard. I think parents are naturally searching for explanations, and I think that the message now is the search for a quick and dirty explanation might not be advancing science.

“the quick and dirty” part makes me think of Juno. I love that movie :p

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Mark : Technically, that would be kicking it Old Testament.
Juno : Exactly! Right? Do you know what I mean? Like in the good old days. When it was quick and dirty.

 It definitely bugs me when people think autism isn’t real, that we are just labeling kids who don’t need labels, or that I am doing it because it’s the cool thing to do. Sam’s cool and everything, and I love him just the way he is, but last night we were up with him until after midnight because he wouldn’t sleep and instead climbed, ran, and crashed into stuff every chance he got.  And every time he walks by the stove he touches the burner to see if it’s hot. Even after he burned his finger a few days ago and cried for hours and has a blister now. He still touches it. And he dumps the shampoo and dish soap if we forget to hide it, he emptied our spice cabinet onto the floor in 2 minutes flat, if I have a nice tall refreshing drink and take my eye off of it for a second he grabs it and flushes it, and my house perpetually looks like a bomb just went off in it. NONE of these things make me feel like I am in a cool club. Or that I am part of some current fad. It is actually quite the opposite. It is isolating. And overwhelming. And definitely not the sort of bandwagon I would voluntarily jump onto. Don’t get me wrong, now that I am on the wagon I love it and I think I am blessed to have a special son — but it’s hard. Very hard. And saying it is a fad is total crap. There, I think I said that very eloquently. :p

Ever wonder what the side effects from long term use of melatonin are?


If you have a kid who doesn’t sleep, especially a child with autism, chances are you have heard about the ol’ save all – Melatonin. It helps these kids sleep and it’s natural. What could be better than that?

Because sleep is important. I remember when I used to sleep, it was nice, I miss it.

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So we started Sammy on Melatonin shortly after his diagnosis in 2007, after his therapist and other autism parents told me how great it is. And we used it regularly for over a year. Though it helped, it was far from a cure for our sleepless nights. It seemed to work great some nights and others it seemed to have no effect on him at all. I have found no pattern or trigger explaining why he doesn’t sleep on some nights. It seems he just has good weeks and bad weeks. And he has never been a sleeper. He was one and a half before he slept through the night.

So then I started wondering if there were any side effects associated with Melatonin.

I think we are so quick to assume that it is safe because Melatonin occurs naturally in our bodies. But there are side effects.

My search didn’t turn up too many scary side effects. Just the usual: upset stomach, drowsiness, headache, possible mood changes, …ok I can handle that…. but then some that concerned me a bit like depression, hallucinations, nightmares, changes in blood pressure, and reduced body temperature.

But the one that really bothered me and made me decide to stop giving him Melatonin was the growth hormone issues. Since Melatonin is a hormone, unnatural amounts of it can throw off the natural balance of other hormones in our bodies. And that may cause issues like breast growth in males, or shrinkage of the testicles, or infertility in females.  

“Melatonin side effects include decreased sperm count and motility, and women attempting to become pregnant should not take melatonin because it may decrease their fertility. Breast enlargement in men taking melatonin has been reported, according to the NIH. Other hormonal effects associated with melatonin supplements include decreases or increases in progesterone, estradiol, thyroid hormone, growth hormone, prolactin, cortisol and others. Taking melatonin supplements during pregnancy may raise melatonin levels high enough to increase the risk of developmental disorders. Breastfeeding women also should not take melatonin as it can be transferred to the baby.” <– that’s from this website: http://www.livestrong.com/article/95733-side-effects-melatonin/#ixzz1qZ7urU5U

And there have been studies in lab rodents where their testicles shrank. It really concerns me that there haven’t been any long-term studies on how Melatonin affects children. But the idea of it affecting his growth and development scared me away from it. That was years ago….

But Sam still won’t sleep. And many times when he stays up all night he ends up sleeping all morning and missing school. I used to just wake him up and make him go to school. But he had a really grumpy, tired day once and I guess he disrupted class all day and his teacher said he needs to be well rested to attend school. So he ends up staying home. And his sleeplessness is really affecting his attendance. Not to mention I am completely exhausted and sleep deprived.

So once again I was half asleep texting his teacher to tell her he was up all night and is sleeping now and most likely will not wake up in time to make it to school. And she asked if we ever tried Melatonin. And I thought, hmmmmm…. I might just be at that point again.

So I bought the melatonin, and that night we woke up at 4am. And he was really upset. He was tense and sad and standing on his toes and just really out of sorts. And man I was so tired. So I gave him the melatonin and he was asleep in 20 minutes. It was amazing. Usually once he’s up he is up for hours.

But then I googled “melatonin side effects” again. And it bummed me out. They really don’t know what long-term use does to our kids. But there is definitely evidence of it affecting growth hormones. He hates it, so giving it to him is tough, but for now I will definitely use it when he won’t sleep. I just don’t see it as a long-term solution.

Why don’t they sleep?

The latest tip is to maybe try tryptophan, Any one have any experience with that?

What do you use to help your kid sleep? Any advice is welcome – I need to catch some z’s.

—- Sleepless in Autismland

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:)

 

 

 

 

 

 

 

     Things get destroyed beyond imagination. And that destruction occurs in moments. Seconds. Fractions of seconds.


     Sammy, my son with autism, is extremely active. He is in constant motion. He is always jumping, climbing, running, dancing, etc. If he doesn’t have structure and supervision he causes mass destruction. He is big now, 7 years old, and so he has become much like having a wild bear or gorilla in the house. Things get destroyed beyond imagination. And that destruction occurs in moments. Seconds. Fractions of seconds.

   He does not sit still. His favorite pastimes are: shredding anything he can find that is shreddable (paper, cardboard, his sister’s homework, etc.) and climbing anything that is climbable (the doors, the cabinets, shelves, couches, TVs, tables chairs, the kitchen sink, the fridge, the counter, the toilet, the shower, the closets, etc.) and then jumping from and/or swinging on the thing that he just climbed.

     I’m pretty convinced that even if I removed every article of furniture from the house he would still find a way to climb all the way to the ceiling.

    And of course, when you climb and shred things all day, the best thing about that is that you can sprinkle confetti all over the house from the highest point in each room. So, a floor that has recently been cleaned can look like something out of that Febreze commercial in about 2 minutes flat.

 

I tried to find confetti videos on youtube to maybe help satisfy that visual stim – and he likes them – but they don’t really stop him from shredding things and making confetti in real life — this is one of his favorite videos at the moment:

 

   Cue the crazy, tired mama

        So I have a question for anyone who reads my ramblings. What do you suggest I do with Sam to help decrease the chaos and destruction at home?  He needs activities that are messy, full of movement, and confetti, and in a perfect world – activities that I can orchestrate easily, isolate to one room, and that will occupy him while I clean, cook, tend to my daughter – you know, the usual.

     We have some tried and true favorites, like trips to the park and swimming and painting and swinging. But I need new ideas. What he needs most is sensory input. He likes deep pressure and lots of movement and impact. He is always seeking proprioceptive and vestibular input. :)

We have a small playroom with a hammock swing and tv and padded floor and small trampoline. But he is pretty bored with it and always wants me to push him on the swing for hours on end. I need to find more activities that he can do by himself while I get other things done around the house. The way it is now, I clean one side of the house while he destroys the other side. Then we switch. And repeat….

   The other day I was cleaning the living room and Sam was in the laundry room smashing lightbulbs and licking the broken pieces. Yup. Licking them.  So I can’t clean while he is home, and I can’t clean while I work (obv) — so when do I clean? At midnight?

    He is non stop into everything. If I leave him in the bath he squirts the toothpaste into the tub. Or sticks his head in the toilet. Or covers himself in VapoRub. We have locks now on the cabinets so we can hide the stuff now and hopefully limit the destruction. I am thinking we need some sort of climbing structure in the playroom (which is small, approx 10ftx9ft) and some way for him to jump and get impact … 

Any suggestions are much appreciated. My brain doesn’t work well after years of sleep deprivation so maybe the solution in right in front of my face and I can’t see it. Well, I can hope anyway eh? :)

Aside

Mama said there would be days like this…. wait… no she didn’t!!


Mama said there would be days like this…

…. wait…. no she didnt.

Mama never said I would have a son who is almost 7 and still doesnt talk, with communication being a not-so-fun version of charades.

Mama never said I would spend my days up to my ears in bills I can’t pay, while my son w autism follows behind me shredding anything made of paper he can find and sprinkling it on the floor like confetti.

Mama never said I would feel so overwhelmed I cry.

Mama never said I would worry and worry and worry about whether my child will ever lead an independent life — and if not who will care for him when I am gone.

Mama never said my house would be a total disaster zone that I dread coming home to – with a mess that no matter how hard I work never seems to get clean.

Mama never said I would cry the whole way home from dropping my son off at school because the lady from the Project Lifesaver program (that provides a GPS tracker for my son in case he wanders off) called and scolded me – AGAIN – for the fact that my son has lingering anxiety from the dentist appointment from hell and now won’t wear his GPS anklet. She tells me how important it is that he wears it and it takes every bit of strength I have to not respond to her with “NO SHIT!!!!  I’M THE ONE WHO CALLED YOU!! I’M HIS MOM!! OF COURSE I KNOW IT’S IMPORTANT TO FIND HIM IF HE WANDERS OFF!!!!!!!!!”

Mama never said I would spend my days in such a constant state of panic and worry and stress that I chase away friends because I snap at them or I’m just no fun because I’m so stressed and tired.

Mama never said I would feel so alone as an Autism Mommy.

Mama never said the family would ignore my child if he has special needs and exclude him from family events, forget his birthday, etc. and not take a moment to try to understand him.

Mama never said my life would completely revolve around autism, stimming, ABA, OT, OCD, ADD, SPD, and that I would always feel like I’m not doing a good enough job combating the problems my children have.

Mama never said it would be this lonely. And stressful. And exhausting. And lonely… I feel so alone… did I mention I am lonely? :P

Mama never said I would spend a large portion of my time scrubbing shit off of walls after my son smeared it all over — AGAIN!!!

Mama never said I would have to chase after my almost 7 yr old as if he were a toddler because he still has no concept of danger and will dump a pot of boiling water on his head, run in front of a car, eat anything he sees (as long as it’s not food), jump off a balcony, wander out of the house … any dangerous situation you can imagine is one he will enter.

Mama never said my daughter’s teacher, cheerleading coach, girl scout leader, and friend’s moms would think I am a flaky reject mom and give me attitude when we are late or forget something or show up with half of what we should have. Seems it’s just a matter of time before they grow sick of the constant “sorry, I have my son to take care of so I can’t drive her – can you give her a ride?” or “sorry her brother shredded her homework again” or “sorry, I thought I already did that – I must have gotten side tracked and never finished” or “sorry we are late – I couldn’t get my son in the car”

Mama never said I would take my son to the dentist and it would result in a 6 week period when he was so crippled by anxiety that he wouldn’t wear clothes, ride in a car, or let me touch him or hold him.

Mama never said any of that stuff!!

Sorry for the negativity today – we all have our moments. I don’t know what it is with me today – but I am just completely exhausted and want to crawl under a rock and hide there all week.

But I will instead try to stay positive. And focus on all of the joy my kids bring me :) And try to ignore the mess that never gets clean and take these few moments when both kids are at school and spend them on myself. We all need a day off – or half a day at least. Sorry for the Moody Monday post – have a great day everyone :)

Our little mini ABA therapist


Having a brother with autism is definitely not easy. But my daughter doesn’t remember life when she didn’t have a special brother. She was 2 when he was born. Oh, how simple life was then… I didn’t know how easy I had it!

I should probably come up with a cute little nickname for my daughter since I don’t really want to use her name… though of course it’s public knowledge so it’s not that secret… but I would prefer to not use it. So hmmm…. what should I call her? Chatty Cathy? Fire Head Red? Super Sis? Freckles McGee?  The Female Child? She-Who-Talks-A-Lot? Little Tweeny? That Kid Over There? Decisions, decisions.

Having a brother with autism is tough and can be quite a challenge, but she does so well. She loves him so much. Just LOVES him! And she always has. She is a very loving and protective big sister and Sammy has looked up to her since he was born.

Of course I hear like 20 times a day how unfair I am. They fight over toys and she tells me at least once a day that I love him more than her. I look like I am always watching a tennis match, my head tuning back and forth to keep an eye on the action, since I need to pay them both attention but they are usually going in two different directions.  And no matter how hard I try, in her eyes I still tend to favor him more. Which of course I don’t.

But in between all of those moments – are moments of amazement. She is so calm and patient with him. And she is naturally such a great teacher. She is also really good at knowing what he is trying to tell us. The other day she was playing with this rocket splash toy (it’s from Discovery Toys and we love it) Here’s a video from youtube showing the toy in action:

Sammy loves watching the rocket shoot up  into the sky and then crash on the ground. And Big Sis Fire Head Red was the rocket controller. She grew tired of playing with it and walked away from it. But Sammy still wanted to watch the rocket and didn’t know how to work it himself.

There are a few steps involved:

First flip the switch to off so the rocket can charge, then place the rocket on the launch pad thingy, then stand back and flip the switch and watch it take off. Sam had trouble with the charging part. He didn’t wait long enough before flipping the switch back so it didn’t have time to build pressure and it didn’t work.

I was watching them through the window as I cooked and tried to get dishes done, etc. You know, the usual. I yelled out to Red Head Freckle Face: “Please just help him do it so I can finish dinner.”

But she didn’t want to. I even tried to bribe her with money but she wanted to swim instead. But then I looked out the window and what did I see? She was teaching him how to work it. And she did it better than I would have. She is patient and on his level. Our little mini ABA therapist.

First she took him, hand-over-hand, and flipped the switch off so the rocket could charge. Then she said “Wait.” The she took him, hand-over-hand, and picked up the rocket and placed it on the launching pad. Then, hand-over-hand, back to the switch to flip it on – and blast off!

He didn’t get it the first few times, and she just kept calmly walking him through each step. After about 10 – 15 tries he had mastered it and can now do it all by himself with no help.

Words can’t even describe how she makes me feel, but I tried. I opened the door and said “You have no idea how proud I am of you. You are absolutely amazing!!”

She will change this world big time – I can just feel it. She has  compassion, patience, and understanding that cannot be taught. She is amazing. And she’s my daughter! Wow!! :)

How much of me am I gonna give you?


I have read things with suggestions about how much info someone should make public on their blog. I read some good tips like:  the last person in the world that you would ever want to read it might read it. And that creeps me out…

And I have read differing opinions about using real kids names, many bloggers use cute little nicknames like “cheeze monkey” when talking about their kids.

I haven’t thought up any good nicknames, and so I usually just refer to them as “my son” and “my daughter”.  And that takes the same effort as typing “cheeze monkey” so it seems to work just fine. But I know that my kids names are public knowledge. If you know who I am, you can find out what I named my kids.

So then I think, well then might as well use their real names. And if you have done your blogger stalker homework then you already know I slipped on Facebook and used my son’s real name. His name is Sam. AAAAHHHHH!! They know his name now!!!!

And if you do a tad bit more homework you can find out my last name, you can take that and search databases and find where I live, look at a google map image of my house… really if I think I have any kind of privacy on these here internets then I am just fooling myself.

So if the last person in the world who I would ever want to read my blog reads it then they will really not gain any info they cannot find with some simple 21st century cyber stalking — they will just know more stuff about autism and all that fun stuff.

So I really don’t know how much info I want to put on my blog. Haven’t figured that out yet. Since I have ninja like reflexes and a pit bull I am not concerned about anyone intruding in my little bubble. Only a  fool would mess with me!

So here’s a start. Here is a picture of my super kids. They are too cute to not show off! :)

There is plenty of time for worry – this is time for calm


I often get asked how I handle my stress and I usually have the same answer: I meditate. When you think of meditation what pops into your head?

When I used to think of meditation, I would picture people sitting with their legs crossed, their hands on their knees, with perfect posture and in a place of total enlightenment:

And that’s awesome. But my back hurts. And when I try to sit like this, instead of quieting my mind, all I can think about is how uncomfortable I am and how much my back hurts. And so that was when I would stop meditating and declare it doesn’t work and give up. Then I saw an interview with Deepak Chopra  and he said to meditate you should get into a comfortable position.

Of course as an autism mommy, business owner, mommy of a typical 8-year-old, domestic goddess,  etc… I don’t get a lot of “me time”. Very rarely is there quiet in my home. Usually it is quite the opposite:

So my version of meditation is not a very zen version of calm. Maybe we need a new category for meditation – the busy mom version.

I catch whatever few moments of calm I can find and use those moments to take deep breaths and quiet my mind. My favorite place to do this is my bed – lying flat on my back, no feet on the floor or hands on knees with palms facing up… just lying flat. But I do touch my pointer finger to my thumb, this helps center me in my happy place. My happy place is the blue ridge mountains.  

And maybe I am doing it wrong – but it works.

I try to get at least 20 full minutes of meditation time a day but usually I have to just split it up into several little moments throughout the day. I sometimes close my eyes for a minute and focus on my breath at red lights, or in the car line while picking the kids up from school (I recommend putting the car in park if you try this haha) And even when I can’t close my eyes I just take the time to intentionally focus on my breath and calm my mind. And one of my favorite times for nice quiet meditation is when I get in bed to go to sleep.

I breathe deep. Inhale big and exhale longer than I inhale. I clear my mind. Which is next to impossible since I usually have to listen to the kids and translate the sounds to determine the level of destruction they are  causing in my absence. But that’s okay.

Thoughts will enter my mind, I worry if I paid that bill or what’s for dinner or if homeworks done or if the dogs need to go out, but then I just usher the thought out and clear my mind again. There is plenty of time for worry – this is time for calm. And lots of thoughts enter, and they just get ushered out. I just keep my focus – picture my mountain view – and clear my mind.

Another approach I have tried is to focus on what I want. Once, I really wanted to win these concert tickets so every day all week I meditated for 20 minutes and pictured myself on a mountain with the tickets in my hand. And you know what? I won the tickets!!! It was awesome!! But I didn’t have the same luck when I pictured myself with a giant winning lotto check in my hand. Doh! So I went back to just clearing my mind and not thinking about anything except how it feels to be on the mountain looking at that magnificent view. It feels happy and calm :)

I have moments of being a very stressed out person. And I am often irritable and overwhelmed, I am always grumpy in the morning, and exhausted by 2pm though my son usually doesn’t settle down (if he sleeps at all) until after 11pm. My typical daughter can drive me batty with her constant chatter and questions – and one liners — like last night when I was cleaning dog pee off the floor and yelling and mad at the dog and then I slipped in the pee and fell and hurt myself — she chimed in with “Well that’s what you get for yelling.” And of course my son with autism keeps it interesting by climbing and/or breaking  and/or peeing on everything in sight.

Sooooo… of course I drink plenty of booze.

But aside from that — one thing that really keeps me sane in this crazy world — is meditation. And a positive outlook. And realizing that this is my life, I need to be here now and enjoy it before they are all grown up and I am a lonely old woman with a perfectly clean house and no more kids running around keeping it interesting. Well except for the grandkids…

An anonymous poem I found in a magazine reminds me of what is important:  “I hope my children look back on today, and remember a mom who had time to play. There will be years for cleaning and cooking, but children grow up when we aren’t looking”

So I just have to roll with the punches and realize how blessed I am. One day I will look back fondly on this time as “the good ol’ days” :)

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