blurred lines

Maddux always refers to age 7-11 as her favorite years.
the years before bullys.
the years before school work got dumb.
the years where all kids loved each other the way they were.
the years when the hardest decision you made was what are you going to eat for snack that day.
I also agree those years were the best. she compares every stress she has to those exact years. When she went into middle school, her first year was fine in general. She had lost her 2 best friends to a different school in the transition and they were no longer part of her life. That she took the hardest. Ending of friendships is never easily understood even for adults. I didnt even know what happened. But that was the start of the slow slide into her journey of mental health.
It was there she found her new best friend. But the demands of middle overwhelmed her. Even being in special education. everything being modified. IEP's do not control peers. Kids who loved her in elementary destroyed her in middle. TRACK 3 specifically was her worst group of kids. Kids she did not know. Kids who go to our pool and she clams up if she has to see them. They all look like they have rachet hearts so I'll just move on.

Maddux went through these stages:
-staying in her room
-dark. curtain closed with blankets on top
-would wear sunglasses so people couldn't see her
-lost 20lbs
-mad at literally every question you asked her
-sometimes she would wear a wig to cover who she was
-stopped running bc people and her actual gym teacher made fun of her run (she has still never run to this day)
-she had a pinterst board that looked like the poster child for depression
-never smiled
-refused pictures or videos

literally nothing made her happy, except when she found Jesus in all that. I will let her tell that story bc she has always had a frienship with Him. The imaginary friends she would talk to from an early age, like all kids, turned out to not just be imaginary. That story is for another day.

So, long middle school years ended in me knowing her local high school would eat her alive. So we opted for a smaller charter school. We started her out in the regular setting but quickly learned it also was NOT for her. We placed her in the vocational program a few weeks in and it was the best decision we ever made. But the start of the school year is where I knew she was really mentally struggling. Yes she had done all those lists of things above you have to realize... I am not working with just depression. I am working with autism.
The lines are blurred.
The understanding is off.
Do I say thats just her autism. Do I say oh thats just her teen years. Do I say I think she has depression. What do I say. Its never straight forward with her. Its a twisted maze of hill and valleys in a brain that thinks and interprets differently coupled with Maddux. Who the heck knows.

Before the shifting around to vocational a few weeks into highschool I have to backtrack to her first day of high school. It was a half day on Friday. They went to each class for about 20 minutes. Monday would be her first full day. Knowing Maddux is autistic the school did not send anyone to help guide her to class. it was a hot mess. not one person helped. not one person seemed to care. I could see in her face she was not gonna be able to do this. So I went in. In her classes. Sat with the 9th graders and not one teacher seemed to notice. I left there so hot mad. But this is the set up to Monday morning.

We talked it up all weekend. I had to really tell her it was all going to be okay. Be excited. The whole nine yards. She goes to bed. I go in to wake her up for school at 6:30am. As i walk in I see something on her forehead. Then I turn the light on only to see what her insides were feeling. She took her scissors and instead of cutting herself she rubbed them over across her forehead over and over still she got what looked like an eraser burn. She said it was the only way the pain in her head would stop. She had to cause it on the outside to distract from the inside. I sat downstairs the night before probably watching tv while she sat in her room agonizing over what the next day would bring. the anxiety of it all was too much. She did, what I learned later, was a coping mechanism for her but did it in a place I could see and everyone else, too. And this is when the journey to her mental health started.

stick around.

it gets better.

3 years

last i left off 3 years ago, my final sentence was:

welcome to your new world maddux. i am ready. you are ready. now lets see what happens.


Little did I know the following 3 years we would spin. spin into more unknown places, familiar but forgotten places, and walk head on into what the literal Jesus is happening places.

To recap our last 3 circles around the sun would be to quickly move past the hardest 3 years of our lives. Both Maddux's on her own and ours as a family. Specifically me. If you refuse to talk about something, you are not healed. It's gonna come back. Prepare yourself. If you are afraid to speak certain things into existence, prepare yourself. If you think your child isn't acting like their normal. Prepare yourself. I can go into each of these things later as we unravel it all but for the sake of writing a novel I will bullet point.

depression
anxiety
self hurting
isolation
return of seizures
malnutrition
homeschool
pectus excavatum
brain tumor
cbd
JESUS

there you have it. our 3 years in a bullet points. minus the bullets bc I don't know how to do those on an iMac. that is Maddux's 3 years. My journey was quite different but similar. Mine went as so:

depression
depression
PTSD
depression
isolation
anger
depression
cbd
JESUS

see similar.. but different. we all handle things differently. we all carry it differently and we all move through life in ways to make what we deal with doable. but what happens in the end of all the unraveling is if I did not have that last word on either of our lists I know for sure Maddux would not still be here and my condition would definitely be unknown. Just ask my mama Carol and papa Guy.

So we are back. back to continue to share our journey. back to coach what we have learned. advice against things we did we shouldn't have and for Maddux to tell you her journey in her words. Maddux is here. She is the biggest light to everyone's lives who know her and shes ready to tell you how this whole new life came to be. we just had to LISTEN.

what happens.

I have noticed that my blog has shifted. Shifted from one type of writing to another. In the beginning it was about
her therapy.
her meds.
her stages.
now I gear it more towards the future. You never hear about the autistic kids who grow up.
the ones who age out.
where do they go once they hit middle school and beyond.
who helps them once they have decided, as their own person, THIS IS WHO I AM.
no amount of therapy will change her at this point.
change is not what i was going for. just living is what i was going for. Maddux is who she is. there is no need for the "model student" to be near her bc we have established "HER"
Do i care if she looks at me in the face when i talk to her... no. do i care if she stims when she sees wheels on a car. no. it is her. why is there therapy to make it stop. why does she need to look at my face when i say hello. she talks to me better when she doesn't. heck she talks to me better through an ipad. her texts are hilarious. she can text me all day and not say one word and I AM OKAY with it.

they grow up
they become who they are very quick in life. quicker than a typical child
they do not have time to figure it out. they have more of life figured out at age 4 than we do at age 40.

with all this information you have to decide: which path will help her be who she is, the way she is, and create a lasting life long after I am gone.

Leaving middle school gave me one IEP to decide where she will go from here after high school graduation. will she get a typical degree 4 years from now or will she get a vocational degree. setting the stage for her college career, if any, and life career. at the end of 8th grade i am to set her path. WHAT? but true. all the years of therapy all the years of extra help and CA classes and anything ever done in her life led us to this one IEP.

So knowing maddux from day 1, seizure 1, autism day 1... to now she mapped out her path for me. I know what she can and cant do...to a certain extent. she has shown me what she needs to survive in school. she has shown me academically what she is capable of and in her home life... i am still learning. for now.... we move on based on her cues.

we take her away from the kids she has known since kindergarten. away from the school system who has helped us get her here and we put her somewhere smaller. a place where she is still allowed credible academics but with less noise, smaller class sizes and we pray.

welcome to your new world maddux. i am ready. you are ready. now lets see what happens.

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!