Autberg

My first idea to helping Alexiss understand the parts of themself that are not typical and give Alexiss points to use to advocate for themself was to take the DSM-5 criteria and break it down then merge that to words I see used within advocacy groups.

Graphics are great, but I've still yet to find one with the same categories. Add in that some advocacy groups do not include voices of Autistic people and it can be a hard place to deciding where to even start. 

I went straight to the DSM-5. I hate the word disorder and deficit. If I could fix the world in a day, I'd strike those words out of the criteria. It's only a disorder and deficit in a neurotypical world from neurotypical perspectives that everyone should be more typical. Autistic people are simply different and a minority, they are not broken, they don't need to be fixed any more than brown eyes need to be changed to be blue. It is a difference in brain function, that is all. 

Whenever Ali tries to open up and explain that they are autistic, it's usually met with friends honing in on what they can see and figure that's all there is to it. They can't even perceive that communication style and perception are a part of that. That with work, Ali can understand the nuances of communication and can become neurotypical. When miscommunications happen, Ali tries to say she doesn't understand the situation because she's autistic. They are expecting Ali to pick up on "hints" instead of spoken literal words. Why is it, Ali is made to conform? Why is it people can't just be more literal and say what they mean. Why must they be so cryptic in a facade to be polite?

Others take it an an excuse with impatience or a "disorder" with pity. Neither bridges the gap, neither shows acceptance and awareness. None help foster honest communication. Ali's brain is different, it works different, you can't expect brown eyes to change to blue just because you think they should. Maybe it's age, maybe it's the typical world not having exposure, maybe it's driven by pressure to fit society's "normal" box. 

My next step was to break those criterias down to easier terms and merge it with terms I see used often in Actual Advocacy groups and traits that Ali could relate to. Then to take it one step further, I broke it down into what people probably notice and what they may not notice or understand is a part of being autistic. 

I showed this all to Ali yesterday and it's posted with permission. I do not claim to speak as an advocate without an autistic voice behind me. It's a first draft and I'm sure I'll have some edits, but it was a good start. Ali agreed with it, learnt some of the things that are unique to the autistic mind and had some happy "a-ha" moments. 

We all take for granted a certain level that talking things out, we all come to the same basic understanding. We think everyone thinks like we do on a grand scale. It's not until these differences are presented that we can start to find true communication. 

Even in my world of grown-ups, it's very misunderstood and most times met with confusion. I get it, what a concept that there's people that are different that don't or can't be "typical" and that their lack of fitting in is a disorder that needs to be fixed. How unaccepting of a message for these kids. I can't even advocate for Ali among my peers and be met with an open mind. Autism has long been treated as a disorder and deficiency. As a society, we need to stop. The invisible box everyone needs to fit into needs to disentegrate. 

Hello again!

It's time to start this up again! It's been a long time, but the privacy was as necessary to me as starting this back up is. This is where I find my best voice, where I have time to think about my words, where I won't get cut off and where I don't see your expressions and reactions to my words. You see, I'm a sensitive soul that has learned to exist means to morph and tiptoe around without offending. That's a truly impossible task for me to speak my truth and share life. 

Being quiet for so long has disadvantages. It's disconnected so much. It was necessary to stop sharing Ali's story until they could give consent. It was no longer my story to tell. It's also taken many years of being a sponge from many different views to bring it all together.  

I guess the start of the pause was putting pieces together to understand Ali's anxiety, behavior, thoughts and actions were not as easy to put a finger on than all the help I was asking for could provide. I started seeing signs that Ali is autistic years before anyone would listen. Alli presented all the female traits and most testing and assessments are based on male presentation. That was a battle in itself. 

You may wonder, why bother at all? The easy short answer is that I didn't want Alexiss to grow up feeling like the odd one out. I figured, as a mom, if they understood themselves, they would see what I see. Not an odd different kid, but a brilliant different minded unique kid. Not a kid that doesn't understand people, but a kid that doesn't understand typical people that was just as valid and had just as many rights to be. That they don't need to change.  

We paid for an assessment, right before covid, while Ali exhibited some autistic traits, it was borderline. Not enough. "They" don't like labeling kids because to them the impact is negative. Never thinking it's the reactions of the world driven by experts needed to change. This was followed by a recommendation for a social skills class and some ablest therapy sessions which I quickly stopped. 

Covid was a blessing as it gave Ali a safe bubble to be Ali! It gave me the space to support Ali, to foster Ali to drop the masking and be themself. What a gift! 

Once again, we paid for a private assessment and we're lucky enough to get someone who cares and actually took extra time to consider and research how girls present as autistic. I could not tell Ali my suspicions. Due to masking for years, it was natural for Ali to change to what was expected. It was heartbreaking to not be able to share this whole world with Ali, yet. A place where others understood that being autistic doesn't mean broken, weird, odd or just plain strange. 

Finally this spring! Ali got the diagnosis this spring! 

Now that we've had time to adjust and understand a bit more, Ali's finding the need to understand more and be able to advocate for themself! This will be my journey as I help Ali with tools, views and thoughts. 

Loose Toof

It's finally happened. A loose tooth! Everything was normal Monday when Alexiss went to school. When I picked her up I got the usual running hug THEN she exclaimed "I got a loose tooth!". I was waiting for more; that perhaps she had done something and hurt herself and it ended up with a loose tooth. Nope, it was A LOOSE TOOTH.

Suddenly, my mind was racing "I'm not ready for this, what happens when it's time to come out... I don't wanna... I don't wanna... ewwww". Heck, I had no idea if I had days or weeks to prepare myself for it. I was excited but I was nervous. So was Ali.

So I'd heard that eating pizza does the trick for helping get teeth out, but apparently, so does chewy homemade chocolate chip cookies. At bed time last night I asked to see her loose tooth again, she moved it and it didn't move back. It was obvious that it had to come out before bed. Oh dear... I'm not ready! But, we've all seen it work; tie some floss (like I'm tying shoes) and pull, right? WRONG!

I looped the floss and tried to put it over her tooth which was a feat in itself. I'd just get it close, she'd move her lip and off it would come. Over and over again. The two attempts that did tie ended up loosened as I pulled and no tooth came with it. I'm trying not to shake and show how grossed out and terrified I am, we're both giggling and being troopers. "Okay, Ali, this time it's going to work". WRONG!

Now what? Before panic set in on both our parts I figured I'd better smarten up.

After a few failed attempts, I thought I'd just try without the floss but it's that curved front bottom tooth. I don't think dry or wet anyone could get a good hold. After I don't know how many tries I remembered the knot that I hate to do (and usually skip) when casting-on my knitting, the slip knot! That's sure to work! As I pull it tightens. It did! EWWWWW. I almost feeling like gagging, Ali is crying. Thank goodness I had the foresight to have a cup of water ready for rinsing.

This morning she was nervous about eating without her tooth and terrified of brushing her teeth, but we made it through and she proudly ran up to her teacher when we got to school and showed off. It seems she's the first kid in her class with a loose tooth and they were tracking how many days it was going to take to come out on the black board.

If you look close enough, you can still see the tear in her eye. She was brave, until the tooth came out. Then I think she collapsed into a puddle in relief finally able to let out how scared she was feeling. I didn't cry, but I certainly needed a few minutes to regain composure. The next one will either be more nerve wracking because we know what we're in for, or better because it wasn't so bad the first time. We shall see.

Christmas and Keys

Christmas has come and gone and we're back to school and work. It was a wonderful happy whirlwind of jolly busy days and a few down days. Alexiss performed in her first concert and a kind neighbor who'd had a few under her belt saved Mark and I an awesome seat! Alexiss was trooper, even though it went past her bedtime.

Alexiss had only asked Santa for a pink pony and a Paw Patroller. Unfortunately the Paw Patroller was no where to be found, not even at the North Pole! He made up for it by hiding the Paw Patrol gang (stuffies) through out the house.

Christmas Eve we were all in a fluster, Maw in the kitchen and Alexiss in her dress. Awaiting the arrival of our close friends Matt and Cindi. We ate, we laughed....we had a great night and day. The turkey was amazing! Much better than the year I tried turkey breast in the crock pot and the plug had kinda come loose, mind you ham and eggs for Christmas was just as good, it's the company that makes it memorable.

So here we are, in 2016. Alexiss begins going to school for 3 full days instead of 2 and this Momma is going to take every other Friday off instead of going into the office. Yes, yes, I know today is Wednesday and I'm home updating the blog and that that goes against what I just said. You see, I managed to lock the keys in the truck this morning.....

So I kept warm in the entrance while calling to tell Mark what happened. By luck, he had taken the truck keys out of his pocket and put them on the hook at home! Now I just had to get home. One parent stayed and made sure I was okay, offering even after she left to help if I needed it and called. One friend had just left to go help out an aunt, one friend had gone into the office instead of working from home, and one friend said her husband was on his way to town anyway and had time to help. I figured I'd take today off instead and go into the office on Friday. More good luck, our door has a keypad, it held in for one more move before the batteries gave out. AND I got to see the most wonderful sunrise. Ahhh, life is good.

A snowy day!

While trying hard to keep me out of the cold this year, I've been crafty. After stringing mini lights in Ali's fairy garden, we agreed they needed a shelter for winter. I had an idea to use modelling clay and stones to make them stone huts. Off to the dollar store we go, then home we come.

Unfortunately, they didn't dry right and cracked. As they dried that night the stones kept falling off one by one. clank, clank, clank....as we slept.

Finally ready to go outside. Alexiss picked this off of her hat and handed it to me with the instruction, "Mom, don't throw this out, it's treasure, okay?"

Only one snowy blustery day so far this year. Alexiss helped shovel. Most of the snow has melted. What a difference from two years ago, our back yard was full by December.

We decided to try the Santa Claus parade this year in Strathmore. It was so much fun! Alexiss's favorite float was the Grinch. Instead of tossing candy like some of the floats, he tossed pieces of broccoli! These are our friends, the Wilsons.

Cinderella in Training

She does chores and sings to birds. Now if she could get the birds to do the chores, I'd be one happy Momma.

A good friend and neighbor told us about her treks down at the campground and how friendly the birds are. We just had to join her on a Saturday a weeks ago while Mark worked overtime. Then, of course, we had to return on Sunday to show Daddy.

Don't make me eat iiiiiittttt

It has finally happened, the day I knew was going to come but was hoping to put it off. At dinner;

Alexiss: "Mom, is this a dead animal?"
Me: "Yes Alexiss it is. Should we give thanks to the animal for giving it's life so we could eat?"
Alexiss: "What kind of animal is it?"
Me: "It's pork......pig"
Alexiss: "I don't like pig anymore"
Me: "Okay, what about steak?"
Alexiss: "Is that a dead animal?"
Me: "Yes, it's cow"
Alexiss: "No, I don't like cow"
Me: "Okay, what about chicken?"
Alexiss: "Yes, I still like chicken."


And so narrow our food choices. I remember a time when she'd try anything. Now the foods that she will no longer eat:

• bananas (unless in banana bread)
• brownies (until she found out they were like chocolate cake)
• cucumbers
• pickles
• apple sauce

She did love the lasagna she helped make though. I think that's the trick. If she helps make it, she'll try it. That leaves apples and PB, PB and honey sandwiches, liverwurst on crackers, cheese buns, cheese, yogurt drinks, milk, cereal, toast and jam.......maybe I can still sneak ham in there.