x y and z

change is hard.

for anyone. autistic or not. and in that way we are all a little autistic. 

Maddux is in her last year of middle school. As we inch closer to high school I am somehow forced to think of her forever. 

Where will she be after high school. 

Where will she live. 

How will she make money. 

In a small world of maddux and me I always assumed it would always be me with her. Always waking her up for school. Taking her to the horse farm. But she grows up. She actually gets to an age that she HAS to be somewhat of an adult. 

Make a living.

Function as a productive human being. Right along with the rest of them. 

I dreamed of getting her there. My whole point in life was to make her flow from one stage to another. Well we are approaching the stage where we see what she is made of. 

So many families are supported for years until the reach the college level. The kids "age out" of school. They get forgotten. Pat on the back and GOOD LUCK with life. If you do not stay on top of whats next, 8 steps ahead, you get left behind. Which means Maddux gets left behind. Well, no she doesn't. I did not get her to leave her behind. I did not get her to not find out what she is meant to do.  I did not get her to become too tired to worry about it and not plan for her adult life.

NEWS FLASH: autism doesn't disappear at 20. 

You guys have watched her go from a 12 month old non verbal child obsessed with her white blanket with tassels to a 13 year old teenager who met Chris Daughtry and told him she was taking over his band at his next concert. She will not do certain things she thinks she will do in the future. But I let her believe it bc why not. It will change eventually and we can say in those time frames she literally thought she was gonna be Daughtrys guitarist. It's fine. 

Moving to High School I am thinking of moving her to a smaller school. Away from the people she has grown up with. Girls and boys that I want to see graduate. The kindergarteners that I watched walk into their first day of school I want to see them walk across with stage with her. Maddux and I may just watch them but I can say those were some great kids for her to be a part of for so many years. But that is for a whole other post in 4 years. 

Meanwhile, I plan.

-get her on an 8 year wait list for healthcare.

-make her transition plan and decide this year where I feel she will be as an adult. 

-send her to high school on a vocational course or standard course. certificate vs degree

-neurophysch evals updated

-Developmental Disability Waiver

-Medicaid

How bout lets just decide what outfit she will wear to the next school dance. 

Well I can't. One bc she hates to dance and would never go to one. Two, because I decide now how she will function later. I do not think I have ever said this before in a post bc I feel super confident in all my decision making with her. But this one I am a bit scared. Overwhelmed. I just dont want to say,    "man, I wished I had done xyz....." 

she changes people.

There are 2 things I know about her.

 One, she is her own person and could care less what anyone thinks about her (my favorite part).

Two.....

 she changes people

She is not super aware of her surroundings unless it interests her.  A lot like most of us. But unless it involves a dog, another special needs person of any age or her friends she could care less. She has 3 very close friends.
She doesn't count her likes and is not trying to build an empire of friends. She has few and knows that is all you need. Although she has few, the 3 she has are kids I would be proud to call my very own.

They support her.

They love her attachment to dogs.

They embrace her Chris Daughtry shirt that she refuses to wear anyway but backwards.

Kudos to her who in middle school where it can be the hardest time for a girl to "fit in" she stands out and eats lunch with the principal.
She has even caught the eye of a boy or two who when they actually realize what life is all about will see she will be the last girl standing with realness.

Slowly I see her changing people in ways that helps them at what ever stage they are in life. Younger and older.

She doesn't see it but I hope one day she will be aware enough to see how she affects people. I have written a letter to her and to her brother on their birthday every year since they were born. Each year showing what they accomplished.

What they stumbled on.

How they changed from it.

You never know what each day brings. Knowing those letters are here, that I hand wrote to them and they can read one day when I am not here gives me a feeling of mothering them even when I can not any more.

Maddux created a special bond with this girl and she wrote a letter about Maddux for a project and I wanted to share it and let it have its own post for her blog. She has been a big part of Maddux's life this year and her words melted me. Thank you Miss M for making my girl feel special. She sure thinks you are swell.

 I know this bc she smiles.

the letter

and fyi Maddux refers to herself as Macy. Her teachers thought her name was Macy for 3 weeks....
this kid kills me.

Keep her close Maddux (Macy)


"In life once you fear you LOSE. With me I always ask you to never be scared.
We know that tomorrow is not promised, but as long as we are by each others side
 in life every possible moment allowed we are WINNING"

imprinted.

I have been sitting on this post for a while. trying to know the best way to showcase her. the right words. the best picture. the right angle. how she should look. but while i have been sitting and thinking and shooting over and over for a month, i realized i really don't need words. this tattoo states it all. it's just a quote. one beautiful sentence. but one that sums up my being for her. my purpose. and apparently what God felt i could do and do well. i have always called her my angel baby. even before anything happened. never really realizing how she would change me and a million others who walked through our lives. so in true maddux fashion she refused to take pictures with me. I tried and tried but she refused. but that is her. so instead she took the pictures of me. and in some ways i feel like that is even more special. i got to grab an almost face of her. but all others are photo credited to her ability.

so to everyone who changed me and her and to the people who build me and/or her up in some way through our walk....thank you and you are forever imprinted within me.

pride

there is love

there is fight

there are goals 

there is war

there are struggles

there is complete and utter determination

and in all of that there is maddux.

for one child who has no clue of what she has accomplished in her 12 years here, she walks through life with nothing but pride in herself. and not pride from the fact that she did x, y and z. but a pride of another kind.
pride that she can blend but is okay when she doesn't
pride that she loves things that spin and thinks others are weird when they do not
pride in her 12 imaginary friends bc they know things others can not help her with
pride in being who she is and not questioning why she is
pride in hatred for socks
pride in fact that she wears nothing other than flat Toms or straight up stilettos
pride in her ability to talk to an animal better than a person bc there is not expressive language she has to deal with bc all they can do is listen 

this is something i need to learn to do myself as her mom. so on mother's day i learn from her. 

i follow her lead

i trust her like she has trusted me for the last 12 years

maddux and i did this ourselves and today we both choose pride


rest easy my maddux...smiles await you when you rise

normalcy

Normalcy: /n/   the condition of being normal; the state of being usual, typical or expected

in the world of autism there can be no more important word than that. it is where the root of this word is born that you take that definition and create its meaning. 

8:00 she texts all her people good night

8:30 she goes to bed, gets on her jammies, washes her face, i tuck her in. 

8:45 she gets up and gets her water

8:50 she talks to her imaginary friends about her day til she feels comfortable enough to go to sleep

her baby doll on her cheek her small dog tyler in her hand

7:00 she wakes up. not a minute before or a minute later 

7:03 hugs charlie as he runs for dear life from her

7:20 she gets ready for school and never tucks in a shirt, buttons every button the shirt has on it, pulls her pants up so they no longer fit her and she now looks like she has pants a size too short

7:40 she leaves for school, still in her booster seat at almost 12 bc she likes how it feels

attends school and does way more than any child at that school bc it takes her 20 minutes longer to do each thing asked of her

3:00 she get in my car after stimming while watching the tires of other cars go by and can probably name every tire known to man and which make and model the tire belongs. she grabs charlie. and smiles

3:10 she has a snack with charlie

3:20 plays on her ipad until its time to learn more stuff from me that will help teach her how to be a mom when she older. although she has informed me that she will not be a mom bc she wants to just take care of Davis and its too hard to do both. 

5:00 teach her to hold a knife and cut with purpose

5:05 fight her on a new food that she says "feels weird" and she doesnt like the smell

5:30 show her how to get the shower ready and help a child who hates bubbles how to properly clean her body and her hair. IMPOSSIBLE!

6:00 homework bc apparently the teachers felt her previous 6 hours at school weren't enough. Mama can not do improper fractions so google is my BFF. even then i still have no clue. true story.

wash. rinse. repeat.

This is us. this is our normal. is it yours? nope.

in my house i have 2 normals. one that follows a more popular route. then i have hers. its a crazy mix of "do it yourself" and "let me help you". is one better than the other? not in my book. but i will tell you the one that is less popular changed the way i created his normal. 

adjust.   adapt.  change.           go be your normal.              you learn things there. 

pretty little bow.

i was chosen.

for some odd reason i was picked specifically for maddux.

you are picked for that one child. you will be the one and only person on this earth able to care for your child the way you should.

well I am here to tell you that that is too much pressure for one person to handle. we are apparently given a certain amount of strength within us to handle the ins and outs of parenthood.

what happens when it is too much?

where do you go when you have nothing left?

im not going to throw in a bible verse here bc honestly that sometimes gets annoying. i don't need a verse today. some days i just need Him.

 i see my life and how it has gone from a 13 year old tom boy who climbed trees, to how i was molded into the mom for maddux. there is no way you can tell me that my life was not specifically designed for a life with maddux. all wrapped up in a box and with a pretty little bow.

when i had my first seizure at 13 i did not know that one day i would look at my child with the same fear i felt those days i tried to fall asleep but was awakened by a seizure saying "i wonder what the heck that was"
or how every day at lunch in high school at 12 o'clock on the dot i had a seizure in front of my friends, hoping no one saw me staring at my lunch unable to really talk and hoping i was not drooling.

i remember being asked to the homecoming dance by a boy that will remain nameless, but don't think for a minute i do not remember his name! then i remember him not taking me bc he found out i had seizures somehow.

i was there. i was not the smartest. so i can tell maddux i know.

when you find out your seizures are caused by a tumor which is cancerous and typically carries about a 10 year life span, you start to see how in line your life had to be for me to be here for her. without the seizures they would not have found the tumor early enough. without the radiation i would not be here to raise her. and without her i would not be me.

so take out my tumor and you take away the one thing in my life i am sure about.

so yes there are days that i ask if i have enough left to do this for possibly the rest of my life. im gonna say that i hope so. if my life ends up being as neatly strung together as it has so far i can not wait to tell you about it.

image by pastel photography

no rules.

~Where can you go to feel an unbelievable amount of support around you even if there is no conversations that day?

~Where can you go where when you pull in the parking lot you get a huge feeling of emotions rush over you that you start to cry like you did when you saw your child for the first time?

~Where can you go that the cheers are louder tha

n your ears can hear and high fives are like gold?

we found that place this spring. Thank you Miracle League of the Triangle for showing Maddux the true meaning of playing a sport and for bringing together her and her future husband: Davis!

beyond.

yep. sometimes it feels like this...

and then you see this.

crossroad

For some reason I find myself depressed on Mother's Day. Not that I think I am not a good mother but it makes me wonder whether I did what I could for Maddux this year. I do not leave Cade out of the equation but lets face it, I could leave him in the house for a week and he could take care of himself. So today I decided to get Cade to take a picture of how I feel. Workout clothes still on, hair a mess and in my favorite spot. Might I add he is quite the photographer! So here I am, wondering where to take Maddux next. Where can I use my money for the most good while targeting where she struggles the most. I always find a way so I do not worry too much, but I do spend a few days feeling heavy while I figure out her next path. I have listened and made all the decisions to get her where she is and God did not lead me wrong in 9 years so I trust He will pull thru again.

a box and a notebook.

what I did for 4 years is right here in these pictures. Everything Maddux knew and lost in those 4 years is here. Yes, I said 4 years. She knew it, she lost it.

We taught it again.

She lost it.

Her favorite letters~ P and X

Her favorite people on felt so I could use them on a board to help her not forget her family.

Baby Faces- Oh that book was so loved!

Good Night Moon- given to me my my sister from her girls and read so much that she could tell me the story herself. Those were the only words sometimes she would say in a day. They were complete sentences, whole phrases~ memorized.

Then there were the notebooks. The hard part. The record of seizures. The times she would stare, drool, turn bright red, not breathe, turn blue.....

And yes the number at the top right corner are the number of seizures and how many minutes they lasted that week. But on the bright side that was later in her seizure life. Earlier it was the total in a day.

She slept.

She seized.

She slept.

She seized.

No wonder she did not know anything.

The box makes me smile the notebooks make me sad.

Somber posts... yes but it is things like this that show me how much she has accomplished. Where she has been. One day I will figure out youtube and post videos of her back then. That is more real but I fear putting her out there.

Within those notebooks are what she has accomplished, also. Every word mumbled. Every sound made. If she had a fever, I wrote it down. What she ate is all in there. I could probably hand this notebook to a DAN doctor and they could find a pattern and tell me how to treat her better. But no one can tell me I was not a good mom. I do question it from time to time. I am the one who takes her to the doctor, gets her to eat food that is not her favorite. Takes her to and from therapy she does not fee like going to that day. And heaven forbid I teach her how to brush her hair. Not her favorite thing.

So for now I am not her favorite. She loves her daddy. But I am making her a wife, a mom and a person who can live like any one else one day. So for that I will take the back seat.