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(originally written & published on February 19, 2012)
We have an 8 year old son with severe/ classic non-verbal autism. He is our only child. So we have untypical lives. Here are 13 things that are normal/typical for us in our life on Autism Avenue, but not to most others. Some may be things that parents of babies of toddlers find familiar, but not parents of neuro-typical 8 year old boys…
Do I really feel and live the “why be normal?” mantra. If you’ve been reading this page long enough you’ll know that’s not always the way I feel. I’d love a typical/ normal lifestyle. But this is the hand we’ve been dealt so i say let’s make the best of it and find humor in the “not normal”, right? If you can’t beat them, join them… 🙂
So here is is our story and I’m sticking to it…
1) We can’t leave hand soap (or any soap) out in our bathrooms because Kyle like to eat it. He’s really tested the concept of “non-toxic” on product labels!
When guests come over we have to instruct them to unhook the child proof latch below the bathroom sink and grab the soap from down there… and replace it and lock it up again, don’t forget! :-). We went thru a similar phase where we had to hide the toilet paper too cuz he liked to eat it or unravel it, but that phase has subsided…. for now
2) We normally change Kyles sheets every 2 weeks. And somehow every morning after we change the sheets Kyle has an accident & wets the bed and we have to re change the sheets we just changed yesterday…Oh and it’s the usually the only time he has an overnight pee accident. Twice a month, right after the fresh sheets were put on.
3) Up until a few months ago, we always had a big supply of size 5T Pull-Ups on hand. And a big sale would send this daddy into a tizzy!
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4) We always have 10 boxes of microwave popcorn in Kyles cabinet in the kitchen. When there’s a 10 for $10 sale we get very excited! And popcorn can be served as a supplement to breakfast, lunch or dinner.
Basically popcorn is an anytime food in this house.
5) We always have lots of baby food bananas on hand. Does Kyle love baby food bananas? Not really…. But it’s how he takes his pills.
We can put a pill on a spoon with some baby food bananas and he will wolf it right down.
6) Kyle still sometimes needs to be strapped in to his seat when he eats. He’s got some feeding issues and has had a history of LOSING quite a bit of weight. So sometimes it has to be done.
7) We’ve got a DVR full of Sesame Street, Dora the Explorer, and Jacks Big Music Show. Some are Kyles favorite episodes that we’ve saved from as far back as 2004. And I totally see Kyle still watching these when he’s 34 years old…
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8) He’s got a bookshelf full of the same toddler books.
Kyle’s been reading his same favorite books for YEARS and it’s very hard to get a new favorite into the mix. But he always rips and destroys his favs for his birthday or Christmas he’ll usually receive a gift from someone of new copies of his old favorites….
9) Kyle has an autism service dog. NOTHING typical about that! 🙂
You can read more about “Princess Paula” HERE
10) We still have child gates on rooms we don’t want Kyle in,
child locks on cabinets we don’t want him in, and most amazingly Kyle has NEVER been in our basement! Basement is unfinished and has WAY too many dangerous things down there. Basement door is ALWAYS locked…
11) Kyle likes to sit on the bathroom sink and drink the hot water from the sink.
I would say that 60% of his liquid intake for the day comes this way. A few times a year in our downstairs bathroom he’ll sit a certain way and pull the main pipe out of the wall and they’ll be water all over the floor. Autism Daddy is not the handiest daddy so I’ll just duct tape the crap out of it… 🙂
12) Kyle has a trampoline and a swing inside the house, in his playroom.
We have quasi gym flooring in there as well.
Having a meltdown? Go work it out by bouncing on a ball while bouncing on the treadmill…
13) Kyle isn’t too cool to want to be picked up and held. In fact he goes thru phases when he wants me to pick him up all the time. He can be very huggy/kissy, probably more than your typical 8 year old. But I’m not sure how I’ll be able to continue to pick him up when he’s a teenager and weighs ?? pounds. I guess I should give up running and move towards weight training….
Those are the 13 that popped in my head right away on a Sunday morning at 5:45am while he was eating popcorn for breakfast and drinking water out of the sink. But there are tons more, so maybe I’ll update this list periodically or come up with a new one from time to time….
What are your things that are normal for your asd household that would be considered untypical to most?
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I can't believe how many things we have in common:
baby food bananas...check
same toddler books...check
trampoline...........check
locks on cabinets....check
things I want:
service dog...would LOVE to have one
1. Jack hates alarm clocks we turn our alarm clocks around or just palin hide them! we finally just started using the ones on our cell phones!!(he hates the noise they make)2.We always have some orange chips on hand(doritos) its the only kind he'll eat as long as they're shaped perfectly! 3. He sits on the middle couch cushion and NOTHING can touch it or be around him, this is where he likes to rock and bounce while watching tv:)...the list goes on....:) Thanks for sharing your story , hearing ti makes ours seem "normal" :)
I have 3 Aspergers Boys, and the one thing that is normal in our house is NO SLEEP! Excellent Blog. xx
Two Aspire boys here ...age 17 and 8 and yep.....NO SLEEP!
I've considered weight training myself.;-) We have enough toys for a small daycare, but 1 child, who's very picky about what toys she'll play with. I guess my husband & I keep buying new ones thinking that maybe she'll like it so much that it will spark something that will cause progress. That make sense?
I've just gave a whole pile of toys to charity. My son just loved to spread them all over the floor then scream that they "dirty". Hate to think about the amount of money I've wasted.
My little man eats every thing. All the wooden tables, chairs and even the stairs have his teeth marks. He also only eats sandwiches with cheese and ham spread or jam. Chicken nuggets and sausages are his only meats.
If anyone knows how to keep a very tall 4 yr old in his seat belt can you please Give me hints. Its a very big issue ATM!
We had looked into seat belt locks when our son was younger, but we never ended up getting them. They were pricey and I was afraid what would happen in the event of a accident... We just struggled through it taking away things that were important to him until he got it. Such as going to the store for a new DVD. If he unbuckle the belt at any point before it was ok, then we would turn around and go home. if he did it on the way home. Then he didn't get to watch the DVD. The whole time explaining why seatbelt were important and that he had to wear it. It didn't take long for him to understand.
We did twist the bottom connector of his 5 point harness of his car seat so the button to push to open it was facing his body to make it harder for him to open.
http://www.perfectlysafe.com/92205-bucklealert.html This lock is very inexpensive and works very well. My son was not able to unlock his seat belt.
There is a place called United Seating and Mobility that I called for my grandson. They are going to help fit our grandson with a safe device. He is also 4 and we cannot keep him in his carseat. They are going to work with Easter Seals. When he was first diagnosed with autism they told us we could get a harness that is for the car it buckles in the back of the child and hooks onto a tether in your car.
They say it takes a village to raise a child. I help my daughter alot with her son, she is a single mom raising 3 children. The middle child has autism. He is 4 and his sister soon to be 3, it's about like having triplets when it comes to those two.
I have a vest and tether for my eight year old and it is a lifesaver
My son does the soap and paper eating thing too. It's not all the time but it happens from time to time. We have had to replace our toilet 2 times and remove objects from it over 15 times, when he was younger. My son self-talks non stop ALL DAY he isn't the easiest to understand, but we are grateful for his speech. However, he seems to have to levels of volume loud and louder and he is always making some kind of sound. Every. Waking. Moment. He doesn't sleep well either. I have been living on an average of 3 hours of sleep each night for the last 13 years. He has an extensive DVD collection of Thomas the train, veggie tales, Wallace and grommet, Barney, mickey mouse, Tom and jerry, scooby doo, lots of Disney, and dream works movies. Usually he will watch a small part of a video over and over again, until we make him stop. When he was young it was all sesame street. We would even song him the songs to help calm him when he got upset , or we were at a doctor's office. Now he is very ANTI sesame street. His two younger brothers didn't get to watch it at all. Also he is obsessed with logos. All logos, from shopping bags to brochures, production companies on the back of DVD's . He also loves previews on DVDs more than the actual movie. And he still watches preschool programming at the age of 13.
Wow TamS it sounds like you stepped right out of my house with my Sally boy! As I am typing this I am listening to the same Disney Chanel intro on his iPad for the 20th time! And somehow he keeps getting on YouTube to watch the same fresh video of blues clues cursing. And is now repeating what he thinks is "rock you!". Sally boy repeats episodes of shows/ DVD intros, self-talks All day long. And his diet is soooo poor. He looks sickly with the circles under his eyes. Carbs are his BFF! I have 3 boys and Sally boy is my middle and I am now having to explain to my older sons friends why Sally boy is doing what he's doing or why I am changing a 5 and a half yr olds diaper. So I'm pretty sure my sons friends notice our not so typical house. Luckily he has shied away from the eating every non edible item. And his sleeping patterns, well they suck! And Salvatore to has only 2volumes, loud and louder so when he's up, we are all up! But as non- typical our household is it is our family and I love my boys more then life itself, we may be quirky but we are nothing shy of AWESOME! Well at least in our household we think we are, screw the typical households that don't agree! Lol
We use melatonin for sleep. Ask the doctor. My 11 yr old takes 6mg, but he is 170 lbs. You can get chewable melatonin online at iHerb.com.
Sounds pretty familiar. Except we can't keep any balls in the house. Nathan pokes something, anything, into them to pop them. Even if he loves them.
I love reading your blogs I keep reminding my husband to add it. Our 4 year old son Garrett has PDD and yes just like you our breakfast choice was popcorn this morning too (smartfood of course)We try to keep a good stock of popcorn of any kind in the house especially the one mentioned above. I have just about given up on trying to keep the kids room clean, we have a typical 5 year old boy as well and he usually gets stuck trying to help us clean up the explosion that Garrett has made. Garrett also has a shelf of books that are his favorite and are kept where he can get them the rest we keep out of reach. There are many a day that I wish I had a trampoline and I am sure that my neighbors do too due to the fact that Garrett jumps constantly and I know they don't like hearing him at 7 am jumping on the hardwood floors in front of his TV. I am happy to say that we do not have many meltdowns as of this point Garrett is a very laid back and happy loving little boy and I would not change him for the world he is my Hero!!!!
Although it isn't as severe, many of these are rather familiar. If we ever run out of popcorn we are in big trouble. I buy the biggest box I can find. We also have a closet full of toys that we aren't allowed to get rid of and shelves full of books that are toddler style. I love reading your blogs!
My son has Aspergers...but he used to eat my cotton balls. I would have to hide them. He said they tasted like fluffy clouds. :-) And how would we know what clouds taste like?
LOL I wish my little boy unraveled toilet paper and ate soap. Unfortunately, like his Daddy, he likes the water. Now, I draw the line at the beach, but he's totally content with CLIMBING INTO THE TOILET!!
So know, our bathroom is also on lockdown. I usually have to put weights on the toilet lid to keep him out.
Never a dull day 'round here!
Your blog puts a smile on my face. While we are not dealing with the same intensity of issues as our PDD-NOS daughter, I relate to some. She eats basically 5 things and I am sneaking baby food into them as much as I can. She has a closet full of clothes but will lose her mind if she cannot wear her favorite pink shirt everyday. I try to get it in the wash every other day. I say she can wear her regular clothes in the morning to school, and during quite time, she can put on the pink one. It's a nice balance that she agrees to. She is, without a doubt, the most amazing person in the world to me and I've learned a great deal from this beautiful 3 year old. You and your wife a great parents!