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Feb 25, 2012

Kim Stagliano's post: "The Crappy Life of an Autism Mom"

Kim Stagliano is another autism mother who has three children with autism.  I read her book, "All That I Can Handle: I'm No Mother Theresa," and reveled in it because she was so honest about everything.  She didn't make apologies for telling the truth about the struggles raising children with autism, but you could also sense her deep and intense love for her kids.  Anyway, since my last post was about potty issues, I felt like sharing her article, "The Crappy Life of the Autism Mom," published in the Huffington Post, because it's just so appropriate.  So many of us dealing with autism and potty training can relate.


Kim Stagliano

The Crappy Life of the Autism Mom
Posted: 01/03/07 05:05 PM ET
Autism is like a box of Bertie Bott's Every Flavor Beans (from the Harry Potter books.) Some autistics got the raspberry cream or root beer flavor. They can speak eloquently, write blogs, move out on their own, marry, have children and manage their autistic traits. Others with autism, like my three girls, got the ear wax/vomit/dog poop flavor. They need help 24/7 to navigate the world. When I talk about autism, I mean the version that my three girls got. I'm not talking about the sort of autism that encompasses quirky kids with some social deficits who are otherwise brilliant.
The ND community tells me and tens of thousands of other parents that we are disrespecting our kids by trying to help them. The ND blogs berate us as wanting to change our kids because we don't accept them. Here's a "taste" of what autism looks like in the Stagliano household. Would you want something better for your kids?
Twice last month, we had a "crapisode." What is a crapisode? (This is where you might want to stop eating and put down your beverage.) My 10 year old (#2, appropriately for the purposes of this entry) pooped in the toilet. That is reason to cheer, believe me. Toilet training is a major issue in my section of the autism community. Our kids can wear diapers into their teens and beyond. So Miss G pooped. Hooray! But Miss G forgets to flush. And she rarely closes the lid. Not hooray.
Miss Peanut, my 6 year old, seems to believe that being a Virgo means she simply MUST swim in any puddle larger than spit. The toilet is like an Olympic sized pool to her. So Peanut goes into the toilet after Miss G has had her, ah, success. Peanut flings kaka everywhere and gets it all over herself, the floor, the walls, the tub, the baseboards and the window. Wes Craven could not film anything scarier than what I saw that school morning, 35 minutes before the bus was due to arrive. That's a "crapisode." It happens in the blink of an eye while I'm washing dishes or doing laundry. I'm alerted by a splashing sound that drops a brick into my stomach. Miss G doesn't understand to flush and close the lid. Miss Peanut doesn't realize that a face full of feces is rarely considered a way to amuse oneself outside of the fetish community.
I will never stop trying to help my girls recover from their autism. I can not tell you what recovery means. It varies by kid and according to God's grace. If recovery means only that Peanut understands she should sit on the toilet, not play in the toilet, I'll take it.
Recovering your kids doesn't mean denying their value as people. To the contrary, it means we are willing to devote our lives, our savings, our sanity to their improved health, development and well being.
Maybe we need an expanded vocabulary. The ND's can keep the word autism and my kids get a new label. Fine by me. Just don't tell me to give up on my girls and accept their version of autism (remember the Bertie Bott's beans) as simply a different type of personality. Because THAT'S a load of crap.

Potty

So, after spending 30 minutes hosing (or showering...whichever way you want to look at it) off my daughter and cleaning up a bunch of crap (literally) underneath our swing set, I'm just going to have to say that I'm grateful for the times that my kids are successful in the potty area.  That way I won't scream, or throw myself a pity party...or vomit cause some aspects of life are just pretty disgusting here at my house.
I am grateful for the many resources out there for potty training.  An example of one resource I really like is the social story that I got the above picture from.  I know it's a faux pas to put pics of kids pooping or peeing on the internet, so it's hard to explain to a kid who is visual and not good with language where their poop goes.  I found that social story at http://sam26847.tripod.com/id23.html, and it's my favorite one out there.
I was all proud of myself when I thought up a game for Caiti where I had three pictures:  One of the potty, one underneath the swings, and one in her bedroom.  It was called "Where Do I Go Potty?" I attached little velcro pieces to the different places and then cut out a pic of poop and put velcro on the back.  The funny thing is...on paper, she totally knows poop goes in the potty.  She got it right every time she tried. It is just getting her to do it in real life that is the hard part.
I just got a pretty good ap on the iPad, it's also on the android, called See Me Go Potty.  Here's a link for the information.  http://www.avakid.com/products.html
It's a great potty training ap.   Anyway, I like that it has an Avatar that you can make look like your kid, and that it shows an animated version of an accident or of going to the potty along with a nice little script that I expect Garrett will memorize and repeat spontaneously.  It would make me really happy if he memorized the words and then actually did what he was saying..."I walk, walk, walk to the potty." Then I wouldn't have to have the responsibility of taking my kids potty on a schedule.
So, to repeat my first sentence...I'm grateful for the times they go in the toilet, and not in their pants or on the ground.  I like the days when I don't feel like I live in a giant toilet.  Here's to hoping things will progress.  As always...patience is the key...right?

Feb 21, 2012

First-Then

As an autism mom, and I'm sure so many autism parents can relate, I'm thankful for "First, Then" statements.  It is pretty cool that I can use these statements to help my kids understand that eventually they will get what they want or that they don't have to be stuck doing something they don't want to do.  I've used it as a motivator to get them to do their chores, to go potty. Every morning I get Garrett gets motivated for school by stating, "First school, then daddy."
Speaking of daddy, I had the CUTEST, SWEETEST little experience yesterday with Jason where I used a "first-then" statement.  Yesterday was President's Day, so all the kids and Kevin were home.  We had a pretty good day.  Jason was Kevin's shadow all day, and I think Kevin loved it.  He totally wore Kevin out though, asking for rides, etc., all day.  So, in order to give Kevin a break I had Jason come take a nap with me.  He was so upset, crying for several minutes, and I didn't know how to calm him down and get him to go to sleep.  Then I heard him say, "Dee dee."  I knew he wanted to be with his daddy, so I said, "First Nigh Night, then daddy."  He sort of stopped mid cry, and looked at me with his big, teary eyes, and repeated, "Dee dee?"  So I just kept telling him "First Nigh Night, then daddy," and he calmed right down and was asleep in a matter of seconds.  It was so sweet to get him to understand that he could still see his buddy if he took his nap first.  :)

Feb 13, 2012

Mod Podge

As an autism mom, I'm thankful for Mod-Podge (a.k.a. decoupage), and here is why:  As a part of Caiti's therapy, she is supposed to get herself dressed in the morning before school.  She has a picture schedule to follow, and at times, we have velcroed pics of different items of clothing on the drawers to help her know what is in them.  This doesn't work too well at my house though because Jason thinks it is way too fun to take the pics off of the velcro and put them somewhere else.  I figured out that I could redo my daughter's dresser in a more functional way that didn't involve little pictures and velcro, just using some fun paper and some Mod Podge.
Mod Podge Dresser Tutorial:
Supplies you will need:
Of course you will need a dresser.  You will also need Mod Podge (or you can make homemade Mod Podge by mixing equal parts Elmer's glue and water), Mod Podge Sealant spray (if you so desire), Scrapbooking Paper, Alpha Punchouts (if you are lazy or have bad handwriting like me...they come in the scrapbooking section and have various fonts of letters you can just punch out and glue on to your projects), scissors, a pen or pencil, a screw driver and whatever embellishments you choose to use.
Step 1:

Remove drawer from dresser.  Using a screwdriver, unscrew the drawer handle and place the handle and screws aside for later.
Step 2:
Measure out the part of the drawer you want to cover.  I used two scrapbook papers per drawer.  Cut the paper to size, spread Mod Podge on the drawer front and carefully place the paper on top of the Mod Podge, making sure to smooth out any bubbling (one website suggested using a credit card edge to smooth out the bubbling).  Once the paper is in place, take the handle screws and carefully poke them through their holes from the inside.  This should leave a small imprint where the holes should be. Then take the screws and forced them through the paper on the outside where the imprints were left to make the holes for the handle.
Step 3:
I decided to add some embellishments to my drawer handles.  I bought felt buttons in different colors and shapes.  They already had holes in the middle, but if they hadn't, I would have just folded them in half, and cut two slits (like an X) and placed them on the drawer handle (as shown above).  I then reattached the handle to the drawer, using the screw driver.
Step 4:
Using a pen, draw a picture of what you want to go into the drawer you are working on.  Cut the picture out, and either cut out letters or use punch-out letters to spell out what will be in the drawer.
Step 5:
Add another layer of Mod Podge, so that the drawer surface will be sticky.  Then place the cutout letters and drawing where you want them to go on the drawer.  Afterward, apply a couple more coatings of the Mod Podge, being especially generous over the letters and the picture.  Don't worry about the white color of the Mod Podge.  It won't look like that when you are done.
Step 6:
Allow the drawers to dry.   You will know they are dry when the Mod Podge is clear.  Once they are dry, follow the directions on the sealant can.  Spray the drawers and allow them to dry before returning them to the dresser.
Finished Product:
here are my sons' dressers.  Can't decide which I like best, but I'm happy with the results.  :)


Ikea



As an autism mom, I'm thankful for Ikea.  I'm not just thankful for all their awesome but affordable products...the main reason I'm thankful is that my favorite home movie was captured at Ikea.  My sister and my friend (who is also the kids' tutor) took my daughter to Ikea on an outing.   They do outings sometimes to help them learn to act appropriately in their natural environment.  Needless to say, Ikea was a little much for my daughter with her sensory issues.  Here is what finally calmed her down.  :)

Feb 8, 2012

Weighted Blanket

As an autism mom, I'm SO thankful for my sister, Nicole, who has my family for Christmas this year.  Earlier she had asked me what I would want for my kids.  I told her, "If you were really rich, I would say weighted blankets!"  She then made it happen for me.  She found online tutorials for weighted blankets, and spent hours and hours thinking through how to make the best blankets for my kids and sewing each individual quilting pillow and weighing them to make sure the weight would be distributed evenly.   She was so thoughtful about the little details.  For example, my youngest, Jason is very into biting and chewing everything.  So, to prevent him from ruining his blanket, she added ribbons on the ends for him to chew on, like some baby blankets have.  We just got Jason's in the mail (such a wonderful early Christmas present!), and we are so excited to get the rest of them.  I am so grateful for the time, money and thought that she put into these.  I know this will help so much with their sleeping issues...which will then help with my sleeping issues...which will then help me be a nicer, cheerier mommy.  :)

Feb 3, 2012

Pinterest

As an autism mom, I'm blessed/cursed to have discovered pinterest.  But I'm grateful for it.  It helps me find lots of good ideas for my kids, their diet, activities...etc.  (My board for GF/CF foods is http://pinterest.com/roach_family/gluten-free-casein-free/
and my board for autism is http://pinterest.com/roach_family/autism/). 
The main reason I actually like it is that it has helped my creative juices to start flowing (although I kind of hate that expression...it makes me think of someone drooling or something).  I've gotten out of my own uncreative rut and decided to try out some of the crafts and ideas on there, and that is something that makes my day a little brighter.  :)  Here are the things that I have actually gotten done on my pinterest boards: http://pinterest.com/roach_family/stuff-i-actually-did-from-pinterest/  Who knew I could be semi-crafty/homemakerly (if that is even a word).


Feb 2, 2012

Swimming Pools

As an autism mom, I'm grateful for swimming pools.  My kids are so obsessed with the water.  I find Caiti constantly turning on the sink in the bathroom or the kitchen or trying to climb into the washing machine.  I have found Jason sitting with his feet inside the toilet all too many times...sigh.  So, yes, I'm grateful for a body of water that isn't gross to get wet in and won't flood my floors.  :)  Of course, I have to include the life jackets in my gratitude list.  My kids had adapted swim lessons last year, but as with all things, that takes time for them to catch on.  Their life jackets help them feel independent and help me to know they are safe while in their heavenly pool.

Feb 1, 2012

Extended Family

As an autism mom, I am thankful for my amazing extended family who loves my kids unconditionally and are there for me when I need to laugh or cry.  :)  They are the best.  Such a blessing in my life and the lives of my kids!!!!

Larraine McCrea (a.k.a the gluten gal)

As an autism mom, I am thankful for my Aunt, Larraine McCrea (who makes me call her Ant instead of Aunt cause she's contrary).  She has been such a support to me my whole life.  As an autism mom, she has been the most important resource when it came to trying the gluten-free/caseine-free diet. 
Ant was diagnosed with celiac disease after being sick and misdiagnosed for many years.  As a way of coping with this diagnosis and helping others with celiac disease, she started her blog: http://www.theglutengal.com/.   She is very creative and an excellent cook and has so many awesome gluten free recipes on her website.  She has given me so many ideas for how to eat gluten free without having to go to go to some expensive health store, buy obscure products or learn fancy ways to cook things.  It was so refreshing to learn how to eat this way from someone that would make regular meals.  :)  Once I started the diet with my kids, Ant started adding caseine-free options to her gluten-free recipes, and now the majority of her website is both gluten and caseine free.  Sometimes I even contribute...like the GF/CF candy list in October.
This diet isn't for everyone with autism.  Some kids don't see a difference at all.  But for my kids, it helps them to sleep through the night, stim a lot less, give better eye contact and not be so much in their own heads.  Just the sleeping part, alone, makes this diet worth it for me.  Thanks Ant for helping me figure it all out.