For The Love Of Princesses

Well tomorrow is Halloween, and the Tigerlily is pulling tricks.

I am forever trying to be organized and prepared, so I asked Tiger to choose a costume at the beginning of the month. She couldn't decide between a Queen or a Princess so I brought her with me to the store and let her choose a costume. The one she chose would work either way so I was feeling pretty proud of myself.

Of course whenever I think I've got my sh*t together .... sh*t happens.

During my our annual pumpkin carving party with our best buddies, my awesome little goddaughter ended up dressing up for a different Halloween party, she was going to, in front of Tiger.
She went as a devil and she looked scary all  redskin and black wings etc..... it was very well done.

Now Tiger is sitting on the couch in a punk vampire costume because she wants to be scary too!

Tomorrow morning is going to be hellish. It's already 8:30 and she hasn't had a bath yet and she  really needs one. She is royally wound up about wearing a costume to school. I am half way tempted to just keep her home and save myself the horror show when she has a meltdown over choosing which costume, whether or not she can handle the makeup, necklace, her hair etc.

I'm going to get up at 5:30am and get myself and her bag totally ready before I attempt to wake her up. If she would just stick to the princess plan life would be much easier. Princess doesn't require makeup and the tiara is optional and its a really pretty costume etc. Hopefully she will change her mind back in the morning as I really prefer the royal costumes.

Here is one from a couple years ago. People actually thought this was a creepy doll I bought but I assure you its just Tiger looking away from the camera.
 The wigs only stay on for photos eh.

And another year...


The High Functioning Life, why for the love of princesses, do I bother trying to plan ahead?


HFL Mama

The Waiting Game

In this world of instant gratification, patience is a virtue, I do not possess in quantity.
I have no patience for red tape and procedure. I want things to get done,  now or as Daddybear says, "I want what I want, when I want it."

Right now I am waiting on a number of things.
The doc to do the T2201.
The results of my tax audit.
The results from our latest evaluation
For parent teacher interviews and the list goes on.

The buzzer on the dryer can go anytime now, I want my fuzzy sweater.

While I'm waiting on  my sweater, a thought dawned on me, that waiting for Tigerlily to be diagnosed was awful. Waiting for this latest assessment result is awful. Maybe its just me but I can't stand all these wait times.

Wait to come up for services, wait for reimbursement, wait for the damn light to turn green, wait for the paint to dry so I can put on a fresh coat, wait for Tigers bus and it goes on and on.

I'm thinking I need to turn this into some sort of game, so I can replace my frustration with amusement.

Maybe make bets with Ian as to how long each thing will take.
Loser makes the winner dinner of their choice or something.

Ok the buzzer went, talk to you later.


The High Functioning Life, "that's alright you take your time, I'll just have a coffee while I wait."

Growing Pains Part 2

I haven't written, since Tigers last assessment. The why being that I sometimes I just can't deal with it all. So I bury my head in the oven and bake until I've wrapped my head around it.

You know Tiger had an assessment recently, and you know if you read part one that it sucked. I am so glad my hubs was there to drive us after the circus act. I was doing a really good hamster wheel impression. I still am. My mind just keeps replaying the clip of my Tigerlily rocking her head and jumping and flapping and all the other behaviours that really autistic kids make.

Yeah I said that.

Tiger is a brilliant kid. I love her and maybe that love makes me a  bit blind to the truth of her disability.  I know that she is hiding her difficulties. I taught her how.  She has learned how to observe and copy other kids when doing a new task. She has learned to self advocate and tell the person in charge when she is having a problem, or when she doesn't want to do something and why, before she melts down.   She has learned to keep it together when we are in public, and her public  meltdowns have become less frequent as she has gotten older. The underlying difficulties are still there,  she is just better at hiding her difficulties from others and I've gotten better at reading her stim levels.  At home she still gives it to me, I  take the meltdowns, screaming, flailing and 7 o'clock crazies as the price of her public pretense.

Tigerlily is wearing social camo. It is a really handy outfit to have, goes with everything. Its my favorite outfit on her.  Her therapists, Tiger and myself are all working really hard at keeping it current and on trend but like any piece of clothing it can be outgrown, or get damaged or sometimes she just doesn't want to wear it.

Whenever she takes it off and shows us her autistic style, it comes as a bit of a shock to me.

It's kind of like watching a ballerina suddenly switch from doing bar work to freestyle hip hop or crazy Cirque moves of a clown.

I don't like clowns.

I want the precious ballerina to be the truth and not an act.

Crap here comes the goose impression, OK more coffee is required.

...... slurp.

The fact is I like to think Tiger is only mildly autistic, but all her assessments say otherwise, and now there are additional diagnoses in the process of being added. As if autism isn't enough. I'm not sure what good the additional diagnoses will do, but the specialist thinks the more we know, the more we'll grow, so I'm going with it.  So this assessment is still in progress, and we are still experiencing some autistic growing pains.


The High Functioning Life, it's my circus, she's my monkey.


HFL Mama

Growing Pains

If I had a nickel for every time someone said "she'll grow out of it" or "it will get easier as she gets older", I would need a much, much bigger coin jar.

Tiger had another assessment yesterday and it could have gone better. She spent the majority of the assessment stimming. She was pretty uncooperative, everything was too hard, and her anxiety was, well, visible. She was throwing her head back throughout, bouncing around the room, using baby talk and making weird noises. It was hard to watch. The specialist had to skip sections as Tiger was clearly in distress.  The mere mention of a time limit caused her so much anxiety that she went into fight or flight.
I really wanted to call it off and pull my baby into my arms, tell her it was ok, schedule it for another day, try again next year? I was so glad Daddybear was there. He is so stoic, my rock in this sea of testing and diagnoses. He holds us together during those painful moments of realization.

Tiger is not getting better.


Tiger can learn all the coping mechanisms she wants, she can acquire new skills, we can learn new ways to work around difficulties, buy 3 sided toothbrushes and clothes without buttons or tags, seamless socks and we can try new therapies, supplements etc., but she won't outgrow her autism.

The High Functioning Life, if we can teach her to be stoic, that's as good as cured right?



HFL Mama

 
 
 
 
 

My Needle, My Haystack.

For those of you who've been in on our story from the get go, you can skim past this next bit.

In June we were notified that Tiger had come up on the waitlist for ABA. She was also reffered back into OT, PT and a child psychologist was recommended. My Mum and Gramama both landed in the hospital, my house was scheduled for some small construction and Life was getting to be just a bit more than I could handle. I ended up leaving my job in order to accommodate my life.

In August I started looking for work again, I contacted my old company and sent out resumes and networked etc. I did a few interviews that really highlighted my spazziness. I was offered a couple positions full time, but...... I can't work full time.

Truth Time,

I would never hire me.

From an employers point of view I'm a nightmare.

I need modified hours.
I'm not super punctual (see I need a late slip)
& my absenteeism is extreme.
The majority of my life, time and heart is devoted to my daughter.
My work will always come in third place. Yes third place, first Tigerlily, then Daddybear and then work. My own needs are farther down the list, but they are easily met.

& so even though I'm a hard worker, I'm not a dedicated, call me in anytime worker. I used to be that employee, I worked 6 days a week for nearly a year for one company.

I put up with "mandatory" overtime crap from others.

But now,

There is nothing more important to me than my little family, and split shifts, rotating shifts, evenings and  weekends are all going to mess with my Tigers schedule.

If you are on this blog then you know why we don't want to mess with the schedule.

I may have found my needle in a haystack though, if it works out I'll post about it mid Nov.

Just to keep ya guessing.

The High Functioning Life, it's a 24 hr a day gig.

HFL Mama