Autism Acceptance Month

April is Autism Awareness month. I feel as though I spend so much time talking about Emily and how autism affects our life. I can't comprehend how anyone isn't "aware" that autism is growing at a startling rate and 1 in 68 are now affected. I believe when Emily was diagnosed almost 10 years ago the rate was 1 in 140. 

I don't know what causes autism. I don't get caught up in ways to "cure" Emily. I accept Emily for who she is and work around her needs. Acceptance starts at home. It's accepting every day will be a challenge and being prepared. It's accepting that public outings are so difficult and draining but necessary for the future of Emily and others like her. Acceptance is a friendly smile, an acknowledging hello or an engaging conversation from a stranger after my child wanders over and waves in their face and walks off in an attempt at being social. Acceptance also means letting others help when times are tough. Needing help, wanting help and being able to accept help is one of the more difficult challenges many autism parents face. We accept our children and their exceptionalities but find it almost impossible to accept help from others when we need it most. 

This month I will focus on Autism Acceptance. I have accepted the challenge of raising a special needs child and I want her to be accepted throughout her life. Kindness counts but acceptance is essential. 

Thanks for reading~

Jessica 

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 

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  

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