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"Someday I'll wish upon a star
And wake up where the clouds are far
behind me.
Where troubles melt like lemondrops
Away above the chimney tops
That's where you'll find me"
Showing posts with label Autism. Show all posts
Showing posts with label Autism. Show all posts

Thursday, March 12, 2015

It is well with my soul

                    Emily riding Merlin

Yesterday, as I was responding to a post about the lack of services for adults with autism, the sense of frustration, fear, desperation and helplessness from other parents of kids on the spectrum hit me hard. Most times we are able to make light of such situations in an attempt to lessen our stress. But the worry is always there. The ever present fear of the future is overwhelming. 

We read articles about the struggles other parents are facing when their child becomes an adult. We block it out. We skim the surface. Knowing the inevitable is coming yet not having the knowledge, strength, courage and determination to do anything about it. Knowing the work that must be done and feeling an incredible amount of guilt we aren't doing more. 

"Peace I leave with you; my peace I give to you. Not as the world gives do I give to you. Let not your hearts be troubled, neither let them be afraid". 

As I was reading comments from other parents yesterday, John 14:27 immediately came to mind along with my favorite hymn.

"When peace, like a river, attendeth my way,
When sorrows like sea billows roll; Whatever my lot, Thou hast taught me to say, 
It is well, it is well with my soul." 

This morning peace found me in the form of a rare 8 minutes of silence in the car instead of repeated questions. It found me watching my girl happy and at peace within herself riding a horse. Indeed it is well with my soul. 

Eight minutes of silence playing Luke's iPad 

Thursday, January 15, 2015

Take the pills they said...


Often during my journey somewhere over the spectrum I get off the yellow brick road and find myself lacking a strong heart, courage and knowledge to stay the course. While looking for the wizard to show me the way, I put my faith in things that are seen. Time after time I am reminded that my plans are not HIS plans  and I am left finding humor in these instances. 

Since Emily was diagnosed with Autism at the age of 3, I have been consumed with the fear of puberty. Two weeks before Thanksgiving I was forced to face those fears and I was not prepared. How do you explain menstruation to a child like Emily? How could I teach her self help skills related to this when she just became independent with pooping? Thankfully it was just a light period and aside from her being proud to wear a pad and announcing it to everyone she met, it was tolerable. After much thought and speaking to her pediatrician we decided a continuous dose of birth control was best for her. She did not need the added stress of a period. I could not keep her home one week every month without facing regression at school and there was no way I could send her and ask the teachers to handle that. So she started on those magic little pills that were going to prevent anymore worry. 

Taking the pill was a challenge. She can't swallow pills, so every night I hid that tiny thing in a spoon full of cool whip or ice cream. Met with some resistance, spitting it out and even chewing, we stayed the course. There was not going to be a period because we were taking these pills. I was sure of it. Well, a week into the second month I went to give her a bath and low and behold there was blood. I was in denial. It couldn't be. It shouldn't be. Maybe if I ignored it then it would go away. She was teary and emotional after bath and wanted to go to bed at 6:15. So I put a pad in her panties and put her to bed. It was just a one time thing. She'd wake up in the morning and be fine and I'd send her to school. Because they said she wouldn't have a period on the pills. I was awakened the next morning by two pair of messy panties on the floor and my girl who kept saying, "It's ok baby. I know your tummy hurts. Mommy will rub it." Not only was there a period but she was in pain. In an effort to soothe her, I got her a milkshake from McDonald's. I took a picture of my precious girl to post for prayers and maybe to complain a little. After posting it and saying "Lord help us" I saw the Church sign behind her. Faith. It was at that moment I realized I had put my faith in those little pills when it should have been elsewhere. 

I smiled and the rest of the day was filled with things I found humorous...Pulling up to the drive thru and the lady asking if we wanted ketchup and Emily replying to her, "Hey! My pad hurts." No thanks lady. We have enough red today.

I am currently awaiting a return call from the pediatrician to determine if she can get the shot to cease menstruation. Believe when I say I am not putting my faith in a shot! 

Thanks for reading~
Jessica  

Wednesday, April 30, 2014

True Colors-Pink

                Emily in her pink room 

Pink...the color associated with baby girls. There's also Pretty in Pink, Pink
Floyd, Pink(the singer) and even Pink Panther(yes I'm that old). I've never liked the color pink much. I am not a
girly girl. I don't think I own anything pink except for a pair of running shoes. There may be some subconscious irony to that I need to dive into later. 

Emily loves pink. Everything is pink. It's like pepto bismol everywhere. She is my girly girl. My girl on the Autism Spectrum. The minority. The one that doesn't fit into the mold of boys with classic autism. I have less than 10 friends with girls on the spectrum. It's lonely and scary. I share quite a bit about Emily as I've said before to raise awareness and ask for acceptance. Not just for autism but for girls on the spectrum. They are a different breed I believe. They have unique challenges because of their genetic makeup. Hormones are coming into play for us and it's something I have been preparing for since Emily was 3 years old.  

Emily has a heart of gold and a nurturing quality about her despite the autism diagnosis. She is my forever kid. My special lamb as she's been called. She will never get the opportunity to be a mama in the traditional sense of the word. My heart hurts for her. She would make the best mama, mainly because she mimics behavior and will tell her siblings what they are supposed to be doing verbatim from what I say. I call her "little mama". I think she does a great job of keeping them in line. 

Tonight's last Autism Acceptance post is Pink. It's for the girls.  It's for the parents of the girls. It's for those who support me and give me the confidence and reassurance I need to keep going. Emily is only 11 years old. I have many more years of perpetual pinkness to go. I can't grow weary of pink, even though it's not my favorite color. Just like I can't get tired of dealing with autism. My path has been laid before me and it's not lined with gold or any other color. It's a pink pebble pathway that I get to walk alongside my girl who continuously shows me the beauty in all things. I don't like pink but I do believe in pink. 

"I believe in pink. I believe that laughing is the best calorie burner. I believe in being strong when everything seems to be going wrong. I believe that happy girls are the prettiest girls. I believe that tomorrow is another day and I believe in miracles". Audrey Hepburn 

Thanks for reading~
Jessica 

Tuesday, April 29, 2014

True Colors-Silver

                My weather watcher

Storms always bring Emily to the windows. She can usually sense a storm coming a few days before. She notices the change in cloud movements as well as the wind direction by the way the trees blow. Her behavior is usually not "calm before the storm". It has been a rough week weather wise, not to mention behavior. 

One of the things I always try to do is find the silver lining in storm clouds. There is always something to be thankful for and the saying that life isn't about waiting for the storm to pass, its about learning to dance in the rain is true. Now, if I could find the silver in the lining of the ceiling that is about bust with water from the faulty installation of the new AC unit. The only silver I'm finding so far is in my hair!

Thanks for reading~
Jessica 


Thursday, April 24, 2014

True Colors-Indigo

I'm needing to fill a few more colors of the rainbow "spectrum" for Autism Acceptance Month so indigo is next.

"I'm trying to tell you something about my life. Maybe give me insight between black and white. The best thing you've ever done for me, Is to help me take my life less seriously, it's only life after all." -Indigo Girls..."Closer to Fine"

One of the great things Autism has afforded me is the ability to take life a little less seriously. I've always had a sense of humor with a bit of sarcasm attached. Not everyone gets it or likes it but laughter is the best medicine for me. 
Trying to take a selfie at lunch and I captured this surprised look. It may come as a surprise to many, but there are people we come across sometimes who don't particularly accept or acknowledge Emily. Rather than let it bother me I like to have some fun with it if I can. Particularly if someone is rude. So here is the tale of the Dollar General trip today...

We were checking out and Emily attempted independent conversation with the cashier. She has always asked people what their names are but here recently has obtained an obsession for name tags. So here is the conversation. 

Emily- "What is your name?"
Cashier-Ignores
Emily-"What is your name again?"
Cashier-(Stopping and looking up) "huh?"
Emily-(pointing to her name tag) "What is your name?"
Cashier-(being a smart a$$ and pointing to her own name tag) "What does is say?" 
Emily-(because she can't read and knows she needs to respond) "TJ"
Cashier-mouth open speechless
Me-You are right Emily. She does look like TJ the Sushi Sample Man at Winn Dixie. 
Cashier-still speechless

We paid and walked out without uttering another word. I thought Emily did an amazing job considering the woman's total lack of interest and rudeness in speaking with her. I often have to help facilitate the conversations and sometimes when dealing with individuals like this lady my sarcasm comes right out and I get a chuckle from it. It helps me from getting my feelings hurt and "the closer I am to fine".

Thanks for reading~
Jessica 



Tuesday, April 22, 2014

True Colors-Cream

Cream. Ice Cream. Whipped cream. Cream the rock band. Even creamed potatoes.  All favorites of Emily's. 

Emily has been having moments of what I call clearness for two days now. Yesterday she was walking around the house looking at objects on the walls and naming them as if she had never realized what they were. One in particular was a pair of cross candle holders. Outside she went around the backyard looking at the windows upstairs and realizing one was her brothers room. I can't describe what it's like when she does this. I've talked about it before. It's like I am getting a small window of time to see her mind clear. It's like she has some clarity in her thoughts and can process them appropriately. It's bittersweet because I know they never last longer than a minute or two and usually aren't frequent. However she has been on a roll for two days now. After dinner tonight of her favorite mashed potatoes, I caught her at the table with the empty box and a piece of paper. She was saying and enunciating "mashed potatoes" as she copied letters onto her paper. 
This is amazing for many reasons. One she doesn't like to write. We were dismissed from private occupational therapy a few years ago because her writing potential had reached a plateau. We haven't given up and her teachers make sure she gets ample writing time at school daily. But she doesn't have homework and it's rare outside of school or therapy she writes. It's not her thing and aside from signing her name I decided the battle to write "journals" was pointless for her future. But occasionally she will do something like this out of the blue and remind me that all of the years of therapy weren't for naught. While she just knew it said "mashed potatoes" and that's what she was writing, I'm still proud.  It's a functional item that she was attempting to learn to spell. In my opinion, it's the cream of the crop! 
I can't post the video here of her telling me she wrote "mashed potatoes" but creamy butter counts for something. 

Thanks for reading~
Jessica 



Sunday, April 20, 2014

True Colors-Tan

         He is not here. He has Risen

Tan is the color of the doughnuts I use every year to share the true meaning of Easter with my kids. I didn't get any pictures today which is a first. We had a wonderful Easter and I loved seeing their smiles and screams of joy. I also ate too much. Maybe I'll stop the doughnut tradition next year. Maybe next year the Bunny will also cut back on the amount of sugar in the baskets. WHEW these kids were on fire this afternoon. I was glad the water guns that were left provided a much needed outlet. It was a beautiful and blessed day. 

Tan is also the last name of the "Joy Luck Club" author Amy Tan. A best selling book about mothers and daughters. A favorite of mine. As parents of kids on the spectrum we do belong to a club of sorts. There is also much joy in our hearts and minds, although it seems at times we are as empty as Jesus' tomb. Because of Him I have the courage and the strength and the forgiveness I need to raise child somewhere over the spectrum. 

" So this is what I will do. I will gather together my past and look. I will see a thing that has already happened. the pain that cut my spirit loose. I will hold that pain in my hand until it becomes hard and shiny, more clear. And then my fierceness can come back, my golden side, my black side. I will use this sharp pain to penetrate my daughter's tough skin and cut her tiger spirit loose. She will fight me, because this is the nature of two tigers. But I will win and giver her my spirit, because this is the way a mother loves her daughter." -Joy Luck Club

I hope you all had a blessed Easter!
Thanks for reading~
Jessica 

Thursday, April 17, 2014

True Colors-Black



Black is my signature color. It's classic, timeless and sophisticated. All of the things I am not, so I wear it in hopes I can one day achieve Audrey Hepburn status. Emily wears quite a bit of black also. Mostly black leggings since zippers and buttons are still not doable due to fine motor delays. 

Black also represents sorrow and grief.  On this Good Friday, I decided to blog about the color black and discuss the sorrow and grief also associated with autism. For me personally, I never really grieved over the loss of what Emily could have been. I accepted her diagnosis early on and focused my attention on ways I could make her life better. I have moments of sadness, but the most sorrow I feel comes from my inability to spend equal amounts of time with each of my children. Emily requires constant care and attention. I am mentally, physically and emotionally exhausted every day. Unless you have a child with special needs, that is very difficult to understand. I try to get quality time with the other two often but because life is as it is, that doesn't happen much. Even conversations in the car about their day isn't 100 percent undivided attention because Emily is there interrupting with her needs of reassurance. So sometimes when I know our hearts need it most, I let Anna Grace or Luke stay home from school. I get to have that quality time that we need and they deserve. 

Accepting that I am doing all I can to be a good mama to all three of my kids is the hardest struggle I face. The sacrifices I make are nothing compared to being the sibling of a kid on the spectrum. Today will be a Good Friday indeed because I'm spending it with my baby boy. I will also probably wear black. 
With Luke after his Boosterthon Fun Run

Thanks for reading~
Jessica 

Wednesday, April 16, 2014

True Colors-Orange

Orange. The color of beautiful sunsets, pumpkins and cheese balls. Large containers of cheese balls that leave little fingers with a thick coating of the orange stuff. I don't know why Emily chooses to eat these in the car when there are far less messy options. I think she knows I pick my battles and just making it through the two hours I spend in there with her every day is my goal. 
Acceptance. Knowing what keeps her happy even if it means a mess. Knowing it's not the end of the world if my car is disgusting, even if I am fairly certain things are growing in the back seat. 

Acceptance. Knowing that at the end of every day the sun will set. Often a beautiful shade of orange and that I will wake up to more orange throughout my day on the ceiling of my car where my beautiful girl wipes her cheese ball fingers. 

Acceptance. Asking others to overlook the nastiness when they ride with you and understand that sometimes being cheesy is easy. 

Thanks for reading~
Jessica 

Monday, April 14, 2014

True Colors-Gray

Gray...the neutral color between black and white. In our journey over the spectrum, I love the color gray. It is the period that I can stop, reflect and actually have a moment of clarity. In my experience with autism, things are black and white. Good and bad. Cut and dry. Other "colors" can be scary because they require me thinking outside of the old crayon box. I have become accustomed to a way of life I never knew existed. So while I am exploring all of the beautiful colors on the spectrum, the truth of the matter is, it takes quite a bit of creativity sometimes to get through the day. No one wants to use broken crayons, and the fear of meltdowns and tantrums, often keep me coloring in the lines with my standard black and white crayons. It's what I know works. 

Gray is also known as a calming color. Emily has become very good at knowing what soothes her. For that I am eternally grateful. She has a back massager that she brings to me often when she is stressed. She asks for her "tickle back". It's during these gray times that I realize how far she has come, but also how difficult life is for her. 

So while I complain about the stress I deal with daily, her world is much more complex than mine. My job is to help her paint the beautiful pictures of life I know she's capable of creating. To do that I have to use all of the colors. I have to be prepared to deal with broken crayons and know that there's still some use, even from the tiniest bit of wax, and that the periods of gray will come when I need them most. 
Emily getting her "tickle back" before bed

Thanks for reading~
Jessica

Friday, April 11, 2014

True Colors-White

Emily wore a white dress to prom. It's 10:30 at night and I'm still trying to get the mud stains out of white baseball pants(whoever made them should be shot) and I still haven't changed out of my white Capri pants from today. I'm tired after the past few days and I'm ready for my white noise machine that helps me sleep sometimes. So "white" is what it is tonight. Just a few pictures showcasing how difficult it is to get a good picture of Emily. Thank goodness for rapid fire photo on my phone. 

                        Smile Emily 
                    Over here Emily
                  Don't squint Emily 
                   Just a few more
            Don't smile like that Emily 
           Emily put your hands down 
                   Okay Emily I'm done

Thanks for reading~
Jessica 




Thursday, April 10, 2014

True Colors-Gold

      Ready for the standing long jump 

Today was the annual Special Olympics for Shelby County. I believe there were over 30 schools with athletes in attendance. This is Emily's 3rd year participating in our local Special Olympics, competing in the 50m dash and standing long jump. I am always moved to tears watching these athletes compete. The smiles, the laughs and the look of determination on their faces is something I wish everyone could experience. The motto of Special Olympics is "Let me win, but if I cannot win, let me be brave in the attempt". While they don't give out gold medals. these athletes shine brighter than any precious medal. They are all winners. 
            Emily's friend Cameron     competing in the adapted bike race. 

Thanks for reading~
Jessica 


Wednesday, April 9, 2014

True Colors-Peach

                  Ain't that just peachy 

I wanted Autism Awareness Month to focus more on the acceptance of those on the spectrum, so I will share how it's also hard for me to accept some things. 

I've blogged about Emily's negative behavior during moments of sensory meltdowns and severe anxiety. Meltdowns are different from tantrums. Both are equally as intense for Emily and for a very long time it was difficult to determine which was the cause of her behavior. As with many kids a simple "No" will cause tantrums. Emily's tantrums of course are usually epic in proportion. This was the case with the broken glasses above when told she could not eat her bothers lunch, as well as her own. 

Just yesterday when I picked her up from school she was crying about getting in trouble for not being patient. I informed her that she would not be getting her coke icee after school. This did not sit well with her and she cried, pinched me and head butted my shoulder while I was talking to her teacher. When we reached the car, my purse was in the passengers seat. I didn't move it fast enough so she started throwing things. Still angry she wasn't getting an icee. She then took off running from the car. Thankfully she ran back towards the school. I got out and ran around after her, but made the mistake of grabbing her arm. This stopped her in her tracks, however, it also brought her to the ground. The mere touch of my hand on her arm made her throw herself on the ground in an even bigger fit than before. Now, I'm thankful this happened at school because they are used to this type of behavior. I'm thankful she ran back towards the building rather than the parking lot. However, I will never fully be able to accept tantrums. If you have never seen a half grown person rolling around on the ground screaming in a fit of anger, I hope you don't. This is the part of parenting a child with autism, that I don't like. I sternly told her to get up and get in the car and she complied. She also still did not get her icee. I do not reward negative behavior. 

So when I am left looking at a pair of broken glasses or my child, who is as big as I am, throwing herself on the ground in a fit, I just say to myself,... "Ain't that just peachy."

Thanks for reading~
Jessica 


Tuesday, April 8, 2014

True colors-Brown

     "Don't it make my brown eyes blue"

I could go lots of places with the color brown but considering half of my blog is poop posts I'll skip it this time. I have brown eyes. Emily has blue. I have had several people compliment Emily recently on her social interaction. In particular her eye contact. Many people have seen my afternoon "car conversations" with Emily. I started that as a way to pass the hour every afternoon in the car as well as work on her recalling events from her day. I would use my phone to record our conversations. After a few months she began to tell me she didn't want me to record her. She still had a hard time making eye contact with my phone. I decided to turn the steering wheel over to her and see what happened. 

I have several friends that Emily sends video messages to. They in turn send her messages back. I flip the video to where she can see herself as she's talking. I believe that this is has been a huge stepping stone in her ability to engage in conversations a little longer and hold her gaze for a second at least. The only trouble she has is understanding the other person isn't actually in the phone so she can get immediate conversational turn taking out of it. Everyone should have FaceTime! 

Thanks for reading~
Jessica 

Monday, April 7, 2014

True Colors-Yellow

      "We All Live in a Yellow Submarine"

I know the picture is of a battleship but we did go on board a submarine as well recently. Emily is also a big fan of the Beatles and "Yellow Submarine" is one of her favorite songs. My goal this month is to help others be more accepting individuals like Emily. In order to do so I have to tell the stories. This is one that I am glad ended so well. 

Over Spring Break I decided to take the kids to do something fun, of their choosing, within reason. Luke chose the USS Alabama Battleship in Mobile, Alabama. Hitting the road early for our two hour trip, Emily did well. Asking tons of questions of course, but no meltdowns. As we arrived to the massive boat, the kids were in awe. We paid our admission and walked on board the deck. Emily was very excited about the water surrounding it. The other two kids ran ahead into the ship with Emily
and I following to start our tour. They scurried down a ladder to explore the floor below. Without thinking, I started down the ladder only to be stopped in my descent from Emily's cries of "No! I can't!" I realized at that point our two hour drive may have just been ruined. I called down to the other two to wait up. Upon hearing Emily's cries they popped back up the ladder with complete annoyance. Emily wasn't going down the 10 or so steps, there were no elevators and I wasn't going to let the other two roam without me. So this is what happened as it typically happens if I want to be able to participate in outings like this with all three kids...

Emily ran around crying loudly. When I say ran, she ran away from me. All the while crying loudly, "No mama I can't!" All while people are looking. Now here's the part where I have to make decisions for Emily. Not everyone can do this. As a matter of fact I'm not sure there are more than a handful of people who can handle her when she gets like this and successfully push her past her fears. I have read books and been told by therapists about exposure therapy. Essentially you make an individual face their fears in an attempt to diminish them. This is typically done over a period of time. Now, I don't always have a long time with 3 kids. This trip was one example. I knew that Emily was excited about the boat. I knew she was excited about the water. I knew she wanted to go down the ladder. After about 15 minutes of her running around screaming and crying and me trying to coerce her down the ladder we were both at a level of intense anxiety and panic. In a moment of desperation I thought that maybe telling her the ladder was just like a pool ladder would connect and she would willingly go down. The water outside the boat must have been the connecting factor because at that moment she agreed to go down. I'm about 90% sure she thought she was going swimming and while that could have brought on another meltdown, it was a chance I had to take. She cried nonstop down the ladder. It took her a solid 5 minutes to go down the 10 steps. But she did it. As we explored the ship there were many more ladders we had to climb up and down. After the 4th one, she was a pro. I was so proud that she had overcome her fear of heights to be able to enjoy our trip. 

The moral of this post is that we all could live in a yellow submarine. We could all be stuck under water in close quarters. But we can't stay in there forever. It's very challenging when Emily has an anxiety attack. I have forced her to do many things that she has initially told me No on and almost 90% of the time the outcome is good. She is proud of herself for overcoming her fears and accomplishing new feats. My wish is that others were accepting of our challenges and understanding when they see a meltdown like this in progress. Anxiety for Emily has to be treated differently from her sensory overload. It's a lot of work and it takes someone who really knows her and she trusts to help her work through these times. I am glad I get the chance to do that. 

Thanks for reading~
Jessica 

Sunday, April 6, 2014

True Colors-Green

I'm a day behind so I let Emily choose a color for yesterday. She choose green. I think of Kermit the Frog and his song "It's not easy being green".

It's not that easy being green;
Having to spend each day the color of the leaves.
When I think it could be nicer being red, or yellow or gold-
or something much more colorful like that.

It's not easy being green.
It seems you blend in with so many other ordinary things.
And people tend to pass you over 'cause you're not standing out like flashy sparkles in the water-
or stars in the sky.

But green's the color of Spring.
And green can be cool and friendly-like.
And green can be big like an ocean, or important like a mountain, or tall like a tree.

When green is all there is to be
It could make you wonder why, but why wonder? Why Wonder, I am green and it'll do fine, it's beautiful!
And I think it's what I want to be.

Be who you are...even if you are a princess who wears your crown a little bit different. 

Thanks for reading~
Jessica 

Wednesday, April 2, 2014

True Colors-Blue


Today is World Autism Awareness Day. A day recognized 7 years ago to spread awareness about autism. Blue is the color associated with this day. There are many organizations that fundraise and hold campaigns to bring more awareness towards autism, which the CDC now says, affects 1 out of 68 individuals. 

I lit my house up for the third year in a row. I didn't get a picture tonight but this is the beacon shining bright from last year. Can't miss us.

Emily also wore blue today. However, I failed to get a picture before bath time so I was left to get a picture of her swinging
from her bar in her blue t shirt.

Blue is the color associated with this day, and I participate, but I do believe that autism is a complex diagnosis not contained to one color. It's a spectrum disorder which highlights many unique and interesting characteristics.

Thanks for reading~
Jessica 

 

Friday, October 11, 2013

Sisters

When I found out Emily was a girl, I was overjoyed. I had such great dreams of she and Anna Grace being best friends like my sister and I were. Dreams of them playing dolls and dress up together. Sharing secrets and laughing. 

I learned pretty quick that wasn't going to be the case for my girls. First off Anna Grace was jealous, as she had been the center of attention for almost 3 years. She didn't want any baby stealing her spotlight. However, as they both got older I still had hopes things would change. They only got worse as Emily's needs became overwhelming and I had to devote much of my time calming meltdowns and preventing tantrums. Anna Grace was annoyed and embarrassed most of the time. However, she was extremely defensive when it came to her sister. No one messed with Emily without Anna Grace having an opinion about it. 

There aren't very many times that these two girls get along. I suppose if Emily were typical the odds of them not get along would have the same chances. It always melts my heart though when I see an unforced hug or kind word between the two. I know that they both love and care for each other at times like this...

Thanks for reading,
Jessica 

Monday, August 26, 2013

One step forward, two steps back

It's another poop blog. It seems as though a fair portion of my life consists of it so I share in case I'm not alone.
Emily is in a regression with her pooping. I was hoping it was a one time incident a week ago but unfortunately I'm seeing a trend. Rather than dwell on the negative, I'm just going to find the humor in it and do what I have to do to get her back on track.

First off I am going to say this as I've said it before. When a bowel movement is in the potty or in a pamper, it's poop. When it is in panties and on other surfaces and items, it becomes shit in my book.

This morning Emily woke up early. I heard her in the bathroom and called up to check on her. She said she was pooping. I asked her if she wiped and she said yes. She has been doing this independently for less than a year. She will be 11 next week. She has been using toilet paper instead of my towels and washcloths(which she puts back under the sink dirty when she is done) for about 4 months. Much progress has been made in her independent pooping. Well I didn't go up to check right then since I was putting contacts in Anna Grace and straightening her hair while trying to get breakfast on the table. She came down and I got her dressed as usual. Before we left I did go up to glance under the sink to make sure there were no shitty towels in there. Not a one so I assumed toilet paper had been used. We took the other two kids to school and returned home to wait until it was time for her to go. As a precaution before I took her to school I decided to check to make sure she wiped good. I will be damned if when she pulled her pants down she didn't reach around with her hand and touch her hiney. That was my first indication it was bad! Poop on finger. I then looked down and saw a pile of shit in her panties. I instructed her to take her pants off which she did but stepped in the poopy panties while doing so. This was not a job a couple of wipes could clean so I put her in the tub. With less than 30 minutes to get to school and an empty tank of gas I ran upstairs to get more clothes after tossing the poopy panties in the trash. I walked in her room and nearly fainted. There was shit in her bed and on her precious Penny the Pig Scentsy Buddy. Apparently she had not wiped with anything and had gotten back into bed using the sheets as toilet paper.

The sadness lies in the fact that progress had been made. She was doing so well in this very important skill. This is the third time in recent weeks she has been content to have poop in her panties without saying a word to me. She doesn't poop often and it's always been a huge part of her struggles when and if she goes. I will just have to work with her more to regain the skills she just had. One step forward and two steps back sometimes but we persevere.

The humor in this is that it is not typical. It's not something you wake up on a Monday morning and think...Yippee I'm going to clean poop today. In hindsight I'm almost glad I don't see these things coming. So today I laugh in the face of autism and say I can handle any shit that comes my way. Bring it.

Thanks for reading~
Jessica

Thursday, July 18, 2013

The lady with the coffee scares me

For the past few days Emily has been saying "The lady with the coffee scares me". I had no idea what she was talking about. It could have been me since I'm never without a coffee cup in the mornings and I can be scary. I asked her if she saw it on a movie or on her iPad to which I got no response other than her repeating that the lady scared her. It was brought up several times a day and I could tell she was visualizing whatever it was and was truly anxious about it.

One of the very first indicators that Emily was not "typical" was when she was around 8 months old. The way she looked at books was odd. She looked at them with a puzzled look and very closely. I took her to a pediatric ophthalmologist who assured me everything was fine. At the age of two her anxiety was so severe that it was debilitating for her. She was scared of everything. Mostly people. It was also at that time when in a crowd of people she was say "Where's mommy?". I would be holding her but she would scan the crowd and ask. I took her back to the ophthalmologist who again told me her vision was fine other than being slightly nearsighted. He did however mention face blindness. She was able to differentiate between family members and those we knew so we brushed it off, but the idea was there that she was not processing faces correctly. It was almost 2 years later before she was diagnosed with Autism.

Individuals with Autism process information differently. I knew that Emily was affected visually more than anything else. I still didn't know how she saw things, only that it was different and often scary for her. Many studies have been done on individuals with Autism Spectrum Disorders and the face processing anomaly. The brain perceives faces in a way that makes it difficult for her to recognize the full face. It also makes it difficult for her to read emotions in others. This has affected her life in so many ways. While I can teach her to control her anxiety in relation to her fears I can't change the way her brain views things. It is one of the more difficult challenges I face as a mama to a kid on the spectrum.

Thanks for reading~
Jessica

And if you are wondering who the "lady with the coffee" was...