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 

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 

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 

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 

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 

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 

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 

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

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 

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 

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 

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 

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 

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 

True Colors-Purple

For those joining in late, I am highlighting a different color each day to represent the broad spectrum that autism represents. You can read about it in my first post kicking off Autism Awareness Month. Today's color is Purple. Emily wore a purple dress today. Purple Rain by Prince is one of my all time favorite songs. It's also the color of bruises. 

Emily has learned over the years to control much of her impulsiveness. There wasn't much warning in the early years before a meltdown or tantrum would occur and she would resort to what's known as "fight or flight" as a way of dealing with the stress and anxiety of everyday life. She would run from teachers, run from classrooms or attack whoever was in close proximity. Many people don't know the severity of those early years because I didn't talk about it much. I was in what's known as "survival mode". Many might say denial as well. As Emily has matured the outbursts have lessened. However, with her growth, when she does have a tantrum or meltdown they are intense and they hurt. She usually saves the "fight" for herself or me. I take some comfort in knowing that she can control herself around others and they are safe although you can never let your guard down. I would rather her take her frustrations out on me than herself or anyone else. I am here to say the biting and the pinching that she does makes me cry, usually not from the physical as much as the emotional aspect. 

One of the things that I wish people knew and understood is that Emily doesn't want to hurt herself or me. She is just doing what her primitive brain tells her to do. The attacks are often in public unfortunately. It is horrific to have your child, who is almost as big as you, attack you in public. One of the things I wish people would do is not stare. I can't stop an attack once it's started. I can only remove Emily from hurting herself or anyone else. That usually involves me dragging her to a safe place that's quiet and out of the way. It's a spectacle at best. It's also exhausting for us both.

 If you encounter an episode like I've described, know that the child isn't a brat and that the parent is doing what is best for the safety of the child and others. You might also offer a understanding smile. No words needed. Just non judgemental glances while we nurse our purple wounds. 

            Bite mark from the Museum 

          Scratches from Cheerleading 

Thanks for reading~

Jessica 

True colors-Red

These spectrum color days are more challenging than I thought. I chose red today because it's the color of the shirts that Shell Gas Station employees wear. 

I pick Emily up every day at 2:00. We have one hour in the car before we pick up Luke and Anna Grace. For those that know our story, cars are not Emily's favorite place to be. Her bribe/reward is a snack every day after school. Sometimes I can convince her to a drive thru treat but her favorite place to go is the Shell station on the corner of Cahaba Valley Road and State Park Road. It's connected to a KFC so she calls it KFC. Her snack every time we go is always the same. Coke icee and white puff corn. Has to be the big $2 bag. Not a small one. 

We've been going in there for over 2 years. After about 6 months of going 2-3 days a week and getting a small icee, one of the regular employees told me the largest was the same price. Anyone who knows me knows that made me happy. Soon after that a friendship was born. About a year after our trips started I began doing my social skills work with Emily. Since the Shell Station was a frequent stop I decided to turn it into a teaching time for her. We soon "met" Mr. Al, the employee who told us about the icee deal. I began encouraging Emily to say Hi and thank you. He began to greet us with excitement as soon as we walked in the door. He started asking Emily how her day was and telling her he hoped she did well the next day at school so she could come back for another icee. He not only took time to talk to her but he also made a point to introduce her to the other regular employees. We now know Miss Theresa, Miss Pattie and Mr Anton. They all speak to her and tell her to do good in school. These are people that I'm not sure I would have ever hung out with in my previous social circle but they have become great friends. We enjoy our visits and Emily just adores Mr. Al. 

The beauty of this is that I have never told any of them Emily has autism. They've never asked what's "wrong" with her.  They have accepted her and all of her quirks and random conversations and treat her with as much love and kindness as I could ever hope for. These are the people that make our days easier. 

Mr. Al recently changed to a different shift and Emily doesn't get to see him often. She always asks whoever is working, "Where's Mr. Al?" Today he was working and Emily was very excited so I took the opportunity to take a picture. I haven't done it yet but I'm going to contact Shell and tell them what a difference these employees have made in the life of a child with Autism. 

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 

 

True Colors

April is Autism Awareness Month. Last year I blogged daily about the humorous things that I find in raising a daughter on the spectrum. As an advocate for Emily I talk openly and honestly about her/our struggles. I share our stories to promote awareness, but most importantly to encourage acceptance. The autism spectrum is broad and individuals face a variety of difficulties that are unique and challenging. Somewhere over the spectrum you can see the true colors shining through of those with Autism, and they are all beautiful. 

  You with the sad eyes

Don't be discouraged
Oh I realize
It's hard to take courage
In a world full of people
You can lose sight of it all
And the darkness inside you
Can make you feel so small

But I see your true colors
Shining through
I see your true colors
And that's why I love you
So don't be afraid to let them show
Your true colors
True colors are beautiful,
Like a rainbow

Show me a smile then,
Don't be unhappy, can't remember
When I last saw you laughing
If this world makes you crazy
And you've taken all you can bear
You call me up
Because you know I'll be there

And I'll see your true colors
Shining through
I see your true colors
And that's why I love you
So don't be afraid to let them show
Your true colors
True colors are beautiful,
Like a rainbow

 

I will choose a color every day during the month of April and blog about the significance or humor I find in that color. 

Thanks for reading~

Jessica