Helicopter Helicopter Please Calm Down

In my post, A Tower Please, I talked about how serious flight risk is. I may have come off a bit heavy handed, but that is only because I was still upset about the Costco run. She is so quick and quiet, and she just goes. Admittedly we should know better, malls, big box stores, grocery shopping ... these can all set her off. It's more that I never learn.

Physical injuries also terrify me.  She has such tiny little bones, she's my baby and I am all too aware of how fragile life can be. Every time she throws herself backwards, runs into the wall, falls etc. I wonder if this will be it, the one hit too many? Will she fall or land the wrong way? How bad is this going to be?

In Tigers particular case her autism has major impacts on her sensory processing, including her balance and self awareness. I forget what its called but basically Tiger can't feel where she is in space. Where her body ends are etc. She also has motor planning issues and low muscle tone. The term clumsy doesn't even come close to describing Tiger. It also creates sensory seeking behaviours like climbing really high to get that little rush.

I really think that inner voice that says "Nope not a good idea, that might hurt",  is extremely quiet in my girls head. That fear or sense of self preservation, is seriously lacking, when it comes to things like cars, roads, climbing, waterways, stangers, dogs and just things you shouldn't do. She has an uncanny ability to find new ways to get hurt. I know the screams are coming from my kid, at the park ,playgroup, schoolyard, (insert sigh here) It's always my kid.


With all the bumps, bruises and scrapes comes other problems. We had a 3 hour meltdown over removing a few bandages yesterday, which affected her the rest of the day.  If she gets hurt, going to the hospital is to be avoided if possible. Tiger is a virus magnet, we try to stay away from disease centres, for we may go with a dislocated elbow and come out with bronchitis. Plus the waiting room thing, I'm sure I don't need to explain that one.

So all of this.... has made me a wee bit of  a hoverer. I couldn't and or wouldn't be out of arms reach of my girl.  I hovered constantly and I saved her from many a fall and injury because of it. Now though, she's a little bigger, she rarely throws herself backwards anymore and she has learned some safety rules. Daddybear says I need to let her be a kid and give her more freedom. So I'm consciously trying not to hover quite so close. I let her play in the yard by herself, I just watch from the kitchen.
I let her play in her room by herself, with the door open,  and right now I'm downstairs and she's upstairs and I am resisting the urge to go check on her. The dog is on duty and the doors are bolted.

Helicopter Helicopter Please Calm Down.


The High Functioning Life, where it's not being overprotective if the risk is real, right?

Budgets & Priorities

It's official, I'm unemployed.

Tigerlily has been referred back into OT, PT and Psych and her name has come up on the waitlist, for ABA. So I left my job to do a summer of therapy, (a leave wasn't possible, hopefully they'll take me back in the fall, but... that hope might be a tad naïve.)

Working when you have a special needs kid is extremely difficult, or at least I've found it to be so. Even though my employer was awesome, my coworkers super supportive and the hours I spent there the easiest part of my day. I still found it hard. I would be sitting at my desk  thinking about all the things I needed or should be doing for Tigerlily. I did my best to be a good employee, bring a positive attitude to work, keep my stats up etc. But.... Tiger gets sick a lot, she missed something like 30 days of school this year. 3 weeks with the lymph node infection 2 weeks went to pneumonia, and the rest were her various virus finds that made school a no go. I'm afraid that I am a problem employee, I want to work, I like money, but I can't be in two places at once.

Trying to work around her therapy was going to be extremely problematic. Add to that, the cost of part time care suitable for Tiger exceeding what I make and I was in a no win situation. there was no way we were going to be able to maintain a routine for Tigerlily while trying to do everything.
 The silver lining about losing the income is that I have TIME. I can keep Tiger on routine and the stress of scheduling is now totally manageable. I can take calls between 9am and 3 and I might actually get ahead of the laundry.

Ok I'm tilting at windmills on that one.


There's also a bunch of other stuff going on outside of  Tigerland but within HFL mama's world.

This week we have a construction crew coming to change us over from oil heat to natural gas.This was not part of my planned budget, nor a priority for us, but insurance companies happen. I've sold myself on this budget killer, by reminding myself how much better Tiger sleeps in a cool room and so, central air conditioning became part of the package too.

Helping Tiger sleep is a priority.

Next week my in-laws are coming and it's our annual Canada Day Party!!
It's a big budget killer, I always spend too much but.... I love this tradition, & those who know us, accept that we are very big on this Canadian thing and that their attendance is mandatory.

Maintaining some sense of self and upholding traditions is a priority.


Now how do I pay for all this?

I think I can use SSAH for swimming and singing  this summer, under personal development, have to check on that.  Daddybear has taken on a new position,  which means more money coming from his end and we have new benefits we can utilize ,which will offset the PT, OT , and Psych... somewhat. Therapy is so expensive. I have no idea really how much therapy is going to cost this summer. It all depends on her evaluations and how she does and how fast we run out of money.

ABA is funded this round, only had to wait 18 months for it :( The scheduling for it is still up in the air, requested out of area services as we live on the border of 3 areas but our postal sends us to the farthest places for assessment and treatment.

I'm going to try for EI benefits but ... I seriously doubt they'll be available to me, but if they are, that will help a lot.

Long story short, Tiger is our priority and the budget is broken.



The High Functioning Life where the needs and wants always, Always exceed the means.


HFL Mama

update: Have an EI code think I'm approved woohoo
Oh n hubby has great coverage, but no OT or ABA

Daddybear

It's Fathers Day!

So I'm going to tell you about Daddybear.

I am a very fortunate woman, the father of my child is a great guy and a truly wonderful father.
He gets his little girl. I mean he really gets her, he understands her and he loves her more than he loves himself.

Daddybear is a good man.

Smart, Capable, Funny, Loving and Decent to everyone.

He's the kind of guy who stops and picks up the box of abandoned puppies off the side of the road.
Fixes his friends stuff, just because he can.
Wakes up early and brings his wife a coffee in bed.
Steps up and volunteers for his community.
Uses his vacation time to cover school holidays and have Daddy Daughter Days.
The man is a giant in my estimation, and not just because he's six foot three.

He works hard, plays hard and loves with his whole heart, but he's not loud about it.

He is a hard man to get to know, much like our daughter he isn't into loud places or crowded spaces.
He doesn't require outside validation and he's quite happy to be a hermit all winter. He's totally satisfied with his small group of friends and the millions he can debate with online. He prefers to host at home where he is comfortable rather than go out. Which suits Tiger just fine.



Daddybear & Tigerlily fishing off the rocks.


In fact Daddybear believes with his whole heart that Tigerlily is just like him, and that she will be absolutely fine.  He thinks that he might also be HFA and I admit that there are a lot of similarities between them, the rituals and routines, sensitivities etc.,  but he says regardless of how he feels or what else is happening, if there's work to be done, he'll Git R Dun! ( He loves Blue Collar Radio).

All I know is, if Tiger grows up to be anything like her Daddybear the world will be better for it.


Happy Father's Day to all the Daddybears out there.

Especially Ours

HFL Mama

A Tower Please.

Tigerlily is registered with OPP, the local police station has her pic and info on file. They have a list of instructions about how to search for and approach my daughter.
You might think that's going overboard, I think of it as a necessary precaution.

My girl is a flight risk.

I live in a constant state of fear.

I've lost my daughter before. She was asleep on the couch, I went upstairs to talk with my hubs and then the dog came upstairs all hyper and barky.
Tiger was 3 she woke up and walked out, keeping the dog inside and closing the doors behind her.
We are so lucky, I love my dog so much. She was found within 20 min.

A caregiver took her to the park with a couple other kids.
One of the kids fell down.
Tiger was found the next street over.

A friend watched Tiger. She went to the washroom Tiger walked out the backdoor.

We were in the backyard, a neighbour came up to talk to me, I turned away from Tiger.
She almost made it to the road.

The grocery store, the parking lot, the park, the hospital, the school.

My God the  public school, I found her down the street, they found her in the gym, at the other end of the building, walking out the front doors, in the library.
She learned how to disarm her proximity alarm, she gave it to another student, she walked past an entire school yard and down the street and no one stopped her.

Her new school has an alarmed front door and completely fenced school yard with a single gated access point.

But it gets worse folks.

Tiger can't swim, she has no body fat, low muscle tone and sinks like a stone.
But she loves the water.
Tiger likes small spaces.
Tiger likes high places.
Tiger can be oblivious to her surroundings and thus dangers like cars.


Now add to that my girl is beautiful.

I think about assault stats, Tigers risk isn't 1 in 10, her risk is 1 in 4.

We went to Costco this weekend, it only takes a moment  and she was down the aisle standing in front of a cart blocking the man's way. We can never , ever , relax.

It's hard to explain to non HFA parents just how serious the term flight risk is.
She might try n bail a few days in a row, or it might be months since the last incident of note.
But we can never, ever, relax.

Every noise wakes me up, I stay up till I know she is down for the count.
I don't shower or go to the bathroom if I can help it unless there is supervision for tiger.

Don't tell me all kids are a flight risk, because I'll tell you where to go.


The High Functioning Life, do you think I can get a building permit for a tower in my yard?

HFL Mama

Shuffling Along.

I hate paperwork,
Here it is after midnight and I just finished filling in my work accommodation requests.
I have to do these same forms over and over.
Every new manager or HR rep needs an explanation, wants documentation etc.

I've been at this job almost 3 yrs. My kid is autistic, that's not going to change.

I need new referral letters for PT, OT and speech.

I need a personal assistant.
I need to learn how to use the calendar button on my cell so I can program reminders of all the things that need to be done again and again and when.

It seems to me that there is always red tape.
Nothing is ever simple, I always have to submit or resubmit or provide additional information.
I need a referral for this, a letter for that,

Sorry we need a more recent letter.

I can't get that, she isn't scheduled for another ADOS until she's 8.


Ok I'm just whining now.

The High Functioning Life, sharpen your scissors because there is a ton of red tape.

Update,

So we moved and thus when we came up on the ABA waitlist we had to be transferred ... more paperwork.

Hubs new benefits claim I have my own ins. Nope, another call to make and probably more paperwork.

8 weeks in they are changing his payroll schedule, so all those bills I just changed to match his new biweekly pay schedule yup have to change em again.

It never ever ends.

I'm going to have another coffee and get started.

Run Mama... Zombies

So this post is more about me than the Tiger. One of things I find hard to do, is find time.
This gig is a 24 hour deal and the Tiger is usually up for 16 - 19 of those hours. I do have help
( Thankyou Daddybear). Also I'm a bit of a spazz myself, so that makes it a little easier to keep up with my relentless Tiger.
I swear that going to work is the easiest part of my day, especially since the peeps I work with are so awesome & how very accommodating my employer is. The only downside of my job is that I'm a desk jockey. For the last few years I've spent my working hours on my butt and it shows.
Also I've turned into a bit of a potato sprouting weird growths and abnormal cells since I've put on more weight than is healthy, especially in the last year.

I may have mentioned in an earlier post about how I talk and bake and eat as coping mechanisms.
Since I've been screened and all the new and fun parts of me are non cancerous I've drawn the conclusion that my body just has too much material to work with and that I need to eliminate some of that extra.

Sooo..... I need to watch my diet (gah I hate that word)
Cut back on coffee ( I'm not sure I can do this)
Find time to workout, but I need sleep.
Find a workout I can do with Tiger? hahahahahahhaahaaha
Find a workout I'm willing to get out of bed even earlier for.

Ding Ding Ding we have a winner

Zombie Run
This is what happens when you ask Daddybear to watch Tigerlily paint outside. I refused to let her in the house, pretended I was scared of the little zombie.

Anyways my bestie who is one of those super women who can do it all and look good while she's at it. Well she knows me well and took me out for a zombie run, its an app for the IPhone and its great.

I love it,
I've run through the free stuff already and I bought the subscription and new shoes FOR ME!
& I'm doing it folks.

Today I did a mission before hubs left for work and on my lunch break I put another thousand steps in doing a supply run for my little survivor base.

Tiger has even come on a supply run with me. ( we went to the park and I did laps while she played)

When the zombie chase came on she was so cute

Run Mama Zombies!


The High Functioning Life, just keep moving  runner # 5!


HFL Mama

Food... The Never Ending Story.

This is a long drawn out post. I've edited and edited and scrapped and written again. This is such a big deal and yet so simple, I just want my Tigerlily to eat good food.

First off, Tiger doesn't like to eat, she likes lots of different foods but chewing and swallowing are an issue. My little one has always struggled with chewing and swallowing.  The motor planning involved in eating is significant and if you have to plan your movements ...
lets just say Tiger will never, ever, be overweight.

& Yeah umm utensils are not our friend, enough said.

Tiger does not eat hot food.  Room temperature is the most she will tolerate. This made me crazy and it was an issue I kept trying to "fix" until an OT told me to shove it where the sun don't shine. OK she was more professional than that, but it basically boiled down to the problem being mine and not Tigers.  The OT explained that Tigers mouth was a hyper sensitive spot and that she could in fact feel like the warm food was burning her mouth, that kids do in fact gag from the texture of foods and that I needed to just accept it and move on to a battle I could actually win.

Tiger likes cold finger foods best, bite sized if possible and food made into pictures is great.






Tiger actually eats a wide variety of foods. I know some moms with kids on feeding tubes, so really the fact my kid likes her food cold is nothing to gripe about. My big problem with Tigerlily is quantity, she simply does not eat enough, because biting her cheeks and tongue hurts.
Yay summer is here and we can do the cold smoothie thing a lot more often.

Ok I can't resist I have to say it. I hate GFCF, I hate seeing it promoted, I hate any marketing that targets ASD parents, because I always think what if??? and the guilt people, the guilt of not being able to afford everything and anything that might help my kid.  The best organic gfcf sugar free all natural farmed by hippy saint foods makes me crazy. Watching people new to the lifestyle try to do these crazy diets just makes me angry.

Basically it boils down to this,

Tiger is not sensitive or allergic to any natural foods, her specialist, the doctor with a dozen abbreviations behind her name, broke it down for me. The problem is not the food, its the processing and chemicals added to the food. Our wonderful doc went further and gave me a list of no way foods and a please  try these supplements and food therapies.

First the supplements.
Vit. D, especially in the winter, this goes for every Canadian apparently
Omegas in large doses, apparently reduces swelling in the brain.
(coincidentally we started this at the same time Tiger started speaking, or is it a coincidence?)
Live probiotics until bowel movements are regular, after any antibiotics or any time there are tummy troubles. We use BioGaia it's horrendously expensive but totally worth it as it takes all the bloat from the tigers belly makes her regular and so much more comfortable.
Multivitamin to help when diet is limited.

Pretty simple right?

Well...... the no go list is quite long and so is this post, if you are still reading you are committed aren't you? Warning I read a lot of labels at the grocery store, I hate grocery shopping now and if I forget my glasses I just go home.

IF you can read the tiny print of the ingredient lists then the following list of ingredients mean you have to put it back on the shelf.

Tartrazine this stuff is evil! colour preservative has to be labelled, they are trying to ban it in the UK.
Aspartame, Sucralose, Splenda, Sweet n Low or any other artificial diet sweetener. No Deli meats.
Glucose, Fructose basically any ose is a condensed sugar and if its the first ingredient just put that crap back. Oh well this is taking too long how about this if you don't know what it is, and you can't pronounce it DON'T FEED IT TO TIGER.

Tiger ate a diet yogourt cup once, she went completely manic and couldn't sleep for more than 20 minutes at a time for something like 40 hours, some of the worst hours of my life, never mind the kid.
One time she got her hands on a fruit rollup, The school called me to come get her and I had to take her the doctor as the kid was doing contortions, her face was totally white with high red spots of colour on her cheeks and her heart was just racing ....  Fruit Rollups are loaded with Tartrazine.

It's not so bad, basically I go to the butcher for meat, and we reduced our meat consumption to match our budget. I do buy food at the grocery store but I always look at the ingredient list and choose the least evil option or make my own. We use butter and whole milk and unbleached flour etc.
I make most of our treats, since I love baking that's no hardship and we eat a lot of Snacky trays and salads. We almost never eat out or buy premade foods and after not eating them for so long frankly they make me ill, as I am no longer used to the chemicals either.

Alright if you are still reading this, my best advice to you is to watch this:
http://www.cbc.ca/natureofthings/episodes/autism-enigma

It explains a lot about ASD and the gut thing

The High Functioning Life where we never ever forget the tiger snacks.

HFL Mama