Maggie AKA rapunzel

A Haircut is usually a simple, non-eventful activity. Nothing is uneventful or simple with autism. Maggie has had two haircuts in her life, both something out of a horror movie. SO... her hair is longggggggggggg. Something out of a movie long. And surprisingly minimal tangles. 'Tangled' - clever name for a movie :)

But hey, she's cute and she always lets me put it up in a messy bun or ponytail even braids. So Im not going to lose sleep over the issue.

The girl pulls it off!

Hockey!

Being the Minnesota girls that we are... We love hockey! I don't know if it's the ice and cool breeze or if it's the names we can't pronounce or spell. Cute boys who can skate. The fights! Well duh it's the fights! It's all about full contact sports with Mags. She likes action. My Dad and Kelly were able to get us Chicago Blackhawks tickets (13th row near the goalie- sweet!)

The Wee fan excited for Hockey!

All decked out in proper attire including a smile.

And she was so happy during their warm up! She loved the straw in her drink, impromptu chewy - very clever little girl.

Hockey @ Madhouse on Madison

Everything was going well until... National anthem. Load noises, louder music, weird lights... It was all down hill from there.

She just couldn't take it. My little fan wanted to get out of there so fast it wasn't funny.

But watching the game from the bar inside the arena was perfect...

What did I take away from this experience? Well...

1. Nothing ever goes as planned - So What? That's life! I'm not going to stress or get mad over it but I think a babysitter will be arranged for next time.

2. Recognizing what the world is like through Mags perspective is complicated and I need to work on understanding it.

3. Maggie looks darn cute in a hockey jersey!

Playing with the dough

Ok So I have the song American Pie stuck in my head... go with it!

A LONG LONG TIME AGO, I CAN STILL REMEMBER WHEN THAT PLAY DOUGH USED TO MAKE YOU CRY. I KNEW THAT IF I HAD MY CHANCE I COULD MAKE YOU ENJOY THE DOUGH, BUT SENSORY ISSUES WERE TO MUCH :-)

While she did play, she did spend quiet a lot of time simply looking from a distance.






A few years ago, a few months ago it was like pulling teeth to get her to touch anything that set her off sensory wise! WAY TO GO MAGGIE! See Play Dough is not scary!!!

Miss Snuggles

My Child has days where if I touch her she whines and hits me. Other days she wants to hug and play with my hair. Recently she's been more cuddles and snuggles then throwing fists like Mike Tyson. Which I appreciate. I like this side. I love when she'll sit next to me and want to curl up with me. And I love it even more when I have my camera convinently ready to snap the moment in time. She's just so cute and sweet and adorable - She can fool people into thinking she's an angel and would never throw a fit. Ha!

(but I know you better sweetheart)

Oh and the drool! And don't forget the Vikings t-shirt - maybe the combination of all things Maggie made for a particularly delightful child that evening. I'm not sure, but I wish I could recreate it every night! (I looked at this picture and realized the porch looks like jail bars on the window...)
My Baby is 5 and has already lost 6! six teeth! Her smile looks like such a big girl with those gaps in her mouth. And she is looking older and older everyday. I love when she's happy and connecting with me. Which often is not the case. Most nights she just wants her space and to be left alone to stem. I worry about her not wanting human contact. I have to remember that smells, textures, pressure and an assortment of other factors that I never think about - Is all that she is thinking about or control what she will or will not do.

Work Related Injuries

There is no Workmans Comp for being a Mother. And Injuries are part of the gig right? Read the fine print, I think to myself, "it's just in the moment and don't take it personally" It's hard to separate your emotions from your child, but when they are in 'that place' of frustration and anger or an inability to communicate their needs, lashing out seems like a alternative method of communicating, as a parent it's necessary. I have taken a few sippy cups to the head. Been hit, slapped, and clawed at! Oh and in public, that's the best when every parent in a store is starring at your child and judging you, thinking to themselves "the worst parent in the world" or muttering as they stare at you "can't you control your child" - NOT! It's mortifying. It's exhausting. It's amazing how many times Maggie and I fall asleep after a huge meltdown because it takes a lot of energy for her to get as worked up as she does and it takes me even more energy to ignore every judgmental parent, stay calm and protect my child from harming herself - even if that means I take a cut, scratch or hit.

Minor hand scratching with a dirty fingernail - it hurts more now because it's infected.

This one hurt, drew lots of blood and is healing. But it's all part of the job right?

Chewy Tubes

How Chewy's took over My Life... A long time ago I thought things like, "Where are my keys?" or "Where is my phone?" now I seem to constantly say "Where is a chewy?" I can't escape it! It's like the blob in a horror movie. At one, very well organized point, I had a chewy in my purse, the car, the diaper bag, her bedroom, and a few in the living room. 

Now I am down to one (and yes I am singing 'one is the loneliest number' in my head.)

I don't know the exact day or time when my brain turned to a focus driven force to always be aware of the exact location of the Chewy's in the house but It happened. 

I know, I know they help with oral motor, oral strength, sensory processing, speech & I'm sure other valuable ways. And we can't seem to go anywhere without them so whether I was prepared for this or not the Chewy Tube has become part of the family!

Various chewy's - prefers the green and yellow

Oh and did I mention these babies are 'Adaptive' Oh yeah!! $10-15 a tube. And don't get me started on the vibrating chewy's they start at $25 - On AMAZON of all places :)

Adaptive

Cute isn't he?

Maggie's speech therapist is working on closure of the lips, control of her muscles in the mouth & her ability to blow/suck. First came blowing on a horn and a bubble machine. Now comes sucking through a straw. Of course it's not an ordinary straw... Oh Nay Nay!

It's Fancy! In fact it is 'Adaptive' - Now if the world of disabilities is new to you then let me explain. First your child is diagnosed. Then you must learn a whole new vocabulary or terms that your world will be bombarded with. I noticed everything was 'Adaptive' this or 'Adaptive' that... the description began with Autism, ASD, or Sensory. Then I noticed the price.

HOLY ADAPTIVE SMOKES BATMAN

Why is a package of 4 straws for kiddies at Target is 4.99 and a single adaptive straw 27.99 ?!?

Not so cute anymore don't you think?

Honestly Kids are expensive!! Disabled kids ridiculously expensive! If there are health issues - I can't even imagine! But why, WHY do companies take advantage of parents who are desperate to try anything to help their children. I don't understand but I really appreciate when therapists know how stupidly priced items are so they give samples away.

Thank you Heidi!