White Rabbits, Special Needs Parenting and Anxiety

...Delayed, Apraxia, Autistic, Nonverbal, Hearing Impaired' IEP, ABA, OAE, ABR, APD, ANSD, ASL...

Round and round those words go. Everyday, Everytime I stop. In the afternoon lull when Charlie naps. While on hold for one doctor or another. In the quiet pre-dawn hours of another sleepless night. As I smile, encouraging her babbles, when we play. In the moments of shame when I lose my temper. In the choked back tears as I watch her struggle to interact with peers before giving up and deciding to play on her own. Like the White Rabbit I am stuck in my anxiety, its become my mantra.

'Don't worry, she'll talk when she's ready'.

Haha, don't worry. Anxiety is as much a part of me as my brown eyes and freckles & just as inherited. If you've met the incredible women of my family you totally get what I mean. 

I worry because we don't have answers. I worry because we just have hints. I worry because there is Google, WebMD & the terrifying pictures of 'what ifs' they paint. I worry that the choices we've made are the right ones. I worry about her safety. 

The last one makes it hard to breath, to think, to speak at times. It casts a shadow on every moment spent away from the safe haven of our home...at the zoo, the mall, the park. It makes  the thought of leaving her with someone else overwhelming, even when its with a family member or friend I trust implicitly. It ruins silly movies like 'Finding Dory' because it is the animated embodiment of my worst fear.

Usually I keep this paralyzing fear in check, tucked away deep inside like a shameful secret. Being a parent of a child with special needs requires your A game everyday. My daughter needs a fierce warrior mama ready to fight and advocate for her at all times.  She doesn't need the ugly and uncomfortable ball and chain that is her mother's anxiety holding her back.  So I hide it behind busy schedules fueled by coffee and nervous energy. I drown it in wine, sarcasm and cursing.  I hide it until I am alone then its....

...Delayed, Apraxia, Autistic, Nonverbal, Hearing Impaired' IEP, ABA, OAE, ABR, APD, ANSD, ASL...

Decisions Decisions

The level of frustration right now. It is beginning to feel like the entire system is set up against Charlotte's future. 1001 hoops to jump through, forms for days, so many phone calls I have a crick in my neck. The nonstop negotiating and begging for appointments and coverage. The fact that some person in an office that has complete use of their senses gets to determine if my child's ability to hear and speak is 'essential' is the most difficult part of this all to swallow. That ASL is 'an acceptable form of communication' despite the fact that the general public, myself included, has no idea how to use it. 
Coping with this is the most alientaing
Pity Post over, climbing down off soap box and back into mama bear shoes.

2017 New year, New list

So I didn't prepare accordingly(SURPRISE!) and was going off of an old list. .This is 2017's challenges, I will start at week 3 and go from there :) 

My week 2 didn't post last week so I will post those pictures today and start fresh tomorrow! 

The following photos are for  'Happiness Is'. For me Happiness is being with my daughter C. She is effervescent and spunky. Happiness is a new camera to break in. Happiness is new filters and brushes in Lightroom that need fiddled with. So the Window Sessions were born,  we did these photos last weekend, when the city was sheathed in ice. Our dinning room window has a pretty wide ledge with an unused heat radiator underneath, it over looks our back courtyard and pond- the perfect location for an impromptu photo session :) HOLY NATURAL LIGHT! I just tossed my darling daughter in the window and started shooting, I wanted her to be Charlie. Her innocent joy bubbling out, visible in each captured giggle. She is so HAPPY in these photos!   

Starting tomorrow I will be going by 2017's list 

Aha! I have returned!

So my amazing, wonderful, generous husband got me not only a new camera but the whole Adobe Dreamweaver, Photoshop, Lightroom suite for Christmas. #spoiledwife I know. I so don't deserve him.
So I finally get to continue on with this blog and the 52 week photo challenge. So like I know n the first post I said i was starting on some random week to fit the calendar with the project BUuuuT since its 1/5 I can start on week 2(since I did week 1 already). 
Stay tune people!!! Shit getting real!

Because everyone else keeps saying it....

'The Truth about Raising a Child with Speech Delays'....

If you have a child with delays odds are family, friends and casual acquaintances send you every blog  post they find on a Sunday morning that might have the words 'delay' in them.

Some days I feel like rolling my eyes at these articles, blogs and Op-Eds sent to me. Some days they hit so close to home that I have to hurriedly wipe my tears away so that outwardly I am as strong as my daughter needs me to be. I can't afford to be a bumbling, emotional person, I have to be a rock hard advocate for my child's rights. Some days its impossible. Some days the flood of anxiety, fear and self pity crushes against the dam I've built inside and it is overwhelming.  Some rare days I try to open up about all this but I quickly become an inarticulate mess. I can tell when I've said too much, that I've let too much out because no matter how close I am to that person I  know I've become too real and made them uncomfortable.
I love that people send me these articles, even the poorly written or the ones that have absolutely nothing to do with being nonverbal. It means that for a minute during the day someone that is not me thought of my child. They thought of her as more than their child's friend, their great niece, they acknowledged that she isn't 'normal' and that our family is 'going through something'. It lets me know that no matter what she is loved by so many.

Signing 'more' and confused why she's not getting more Halloween candy. 

She isn't normal...

Well as with everything in my life, the 52 week project is off to a rocky start. First as was mentioned in my first post my DSLR was not working- its still on the fritz and I've still not replaced it. The old girl is 10 years old and she definitely has some wear and tear on it. Well this past week the camera on my cell phone died, so short of sketching the assignments I've put it on hold.  So enjoy this little peek into life...

Today I got the best unsolicited advice regarding my 27m old daughter C.  It wasn't directed at me but more to a group for parents with kids with APD as a whole. 'Stop treating your child like they are normal, s/he isn't normal.' It was(is) hard to hear that but so important too.  My expectations and goals for her are for 'normal' children. C is many amazing things, many of which area byproduct of her not being 'normal'. She's so sensitive to others feelings and has a tenderness to other 'non verbals' like new babies and animals that is so beyond her age. She will sit and puzzle over something until she understands how it works and can do it herself. She's fiercely independent and has the bravest heart.  It breaks mine when she hits herself because she can't get others to understand her wants and needs.  I can't stand watching her try and initiate play with new people and have them walk away because she can't say a simple 'hi'. It enrages me beyond reason when strangers stare at her as she gestures and grunts to communicate to me in public. I hate that the only way I feel I can really keep her safe is to keep her home with me, away from the stares, sneers and judgement, away from those that would snatch her up and she wouldn't even be able to protest, she can't even scream for 'help'. 
. I am so scared for her future, for the hopes and dreams I have had for her since I first heard her heart beat. 

Week 1: Who Are You?

Hello, 

So the main focus of this blog is the 52 Week Project. Each week will be a different photo 'assignment'. I will adventure into the world around me with my trusty camera/Phone( the one in the photos below took a nose dive, sadly it was not its first but it was it's last) and shoot it. That is after I've packed a diaper bag full of snacks, toys and diapers and had a giant cup of coffee. Once upon a time I didn't drink coffee.... I was also single and young so there is that. 

So back to the PROJECT,  its week one(I am using EverydayEyeCandy's list, but there are tons of others you can pick... Pinterest is a good place to start). La Shawn's list is great, I have to tweak it just a bit because well like a true procrastinator I am starting October 1st rather than January 1st.  

So this is called 'Who Are You'. Wow that could get deep. I'm staying shallow. 

I am Lauren, Lauren Martin, formerly Lauren Rapp. I was born in St Louis, moved to Des Moines, grew up with 5 AMAZING siblings, 2 of the best parents anyone could ask for and an army of dogs, hamsters, fish and for a short time a blue parakeet named Ocean. After going through a quarter life crisis I packed up my Jeep Grand Cherokee and moved back to St Louis. That impulsive and crazy decision was the best I ever made, 7 months after moving here I met Todd. After a rocky and embarrassingly drunken start we were married in September 2011.  We welcomed our fur baby, Hammie a miniature American Eskimo in February of 2012 and our skin puppy Charlotte in July 2014. 

I am currently a SAHM, and learning to be comfortable with that. I spent the last 17 years working, I love being with my daughter but I miss some of the driven purpose work provided. To help with that I am pushing myself to become a *Domestic Diva*. I apprenticed as a mom most of my childhood under a woman that worked 40 hours a week on the night shift, served a home cooked meal every night, was a girl scout leader, basketball coach and homeroom mom. The woman even made our Halloween costumes by hand and was the annoyingly crafty woman that made personalized May Day baskets for all the kids on the block. Oh and the icing on the cake is she bakes to put Betty Crocker to shame. I make a mean bag of Bertolli and burn cookies by looking at them. 

I am somewhat trained as a photographer BUT most of my formal training was in 35mm SLR and darkroom. I have learned most of what I know for digital by reading blogs, watching webinars and YouTube videos. My personal goal is to work my way up to taking pictures professionally and successfully running my own studio. The 52 Week Project was recommended as a way to hone my eye and give purpose to my photos. Please if you have a suggestions, I am an open sponge?...book? I am whatever 

This Weeks Photos  I don't have photo info on these because unfortunately I had to take with my phone.  Any photos I will post settings taken on!