Well Hello There

Hey Peoples,

I started this little blog to share my experiences and sound off about what's going on in Tigerland and apparently there's a lot more people who can relate than I thought.
There is actually people on the other side of the world reading my blog?!?

Why is this surprising to me?

Well my Tigerlily is a GIRL, yeah I know pretty obvious, but the number of girls with ASD is much lower than boys and the severity of the symptoms is also generally on the lighter side of the spectrum.
A lot of the time that makes me feel invisible. Well until today, when I saw how many views I've had.

So I just wanted to say Hello there, and Thank-you for hearing me. I needed the boost today as it's a bad day in Tigerland. There has been much rage and crying and you guessed it screaming in my house today. Thankfully Daddybear is home, and I've tagged him in. He's found a movie to distract the wee beastie from her frustration and it's kinda working. I'm still hearing a lot of noise but its less rage filled and more squealy spazzy in nature... must be a good movie.

So I'm just going to sit here and marvel at the numbers a little bit and you guessed it, drink a coffee.


The High Functioning Life, there's more of us living it everyday.


HFL Mama

I Scream & You Scream , & Tiger Screams Because Of Ice Cream.

This is a food post people.
Food the never ending story, battle, struggle, problem.
It's July and it is HOT. Time for some ice cream

HOLD UP!!

We can't just go get an ice cream.
Why??  Because a lot of ice cream is not actually ice cream :(
It's a frozen dessert,
It's modified milk ingredients
It's every kind of fake sugar and preservative and chemical shite you can name.

Poor Tigerlily can't eat DQ, MC D's soft serve, a frosty or most ice creams, frozen desserts and treats.
I don't know what chemical they are using, or if it is just the modified milk ingredients or what, but something in the frozen desserts out there is not good for my baby girl. She suffers manic fits after the bad stuff, and I say suffers because she the wild movements and flailing always result in injury. The stuff interferes with her sleep which makes the next day a bad day and usually involves more injuries.

The doc chalks it up to chemical sensitivities and the solution of course is to not let her eat the stuff.
So we search out the good stuff, Canadian stuff, Chapmans, Kawartha Dairy etc. The stuff where you read Cream as the first ingredient in ice cream.

But it sucks. I feel terrible denying the little one the bright coloured rocket popsicle she so desperately wants, the bright pink ice cream with sprinkles, the funny yogourt pop shaped like a ghost.

& sometimes I just give in. I don't want her to feel deprived.
I don't want her to remember her childhood as a series of Sorry Tiger you can't have that.


Yesterday I let her have some of Gramma's ice cream. & it was ice cream Gramma knows the deal but it also had modified milk ingredients, & some modified sugars.
Which seriously modified Tigers' behavior and sleep.

It's 9 am and she's still in bed, because she was up most of the night.

Maybe Tiger n I will make ice cream in a bag today so I'll know exactly what's in it.


The High Functioning Life, where we read the labels or suffer the consequences.


HFL Mama

 

Public-Private-Home & Mama Needs Schooling

 

Tigerlily is very smart.

 

We were in her specialists office, the doc and I were discussing weight gain issues when out of nowhere Tiger said "it's on the left"

The doc asked her what's on the left, but got no response, but before I could intervene she gave me the hand and walked over to Tiger and asked to see the book Tiger was holding.

Sure enough there was a single question on the page.

 

Where is the balloon?

 

It was on the left people.

 

She was 2 at the time.

 

An I.Q. test was scheduled. She did well, actually as the questions got harder, her percentages improved. She's no savant, but Tiger is smarter than me. Of course being her father's daughter I always assumed she would be, & I was right (win for me). Along with therapy, I was also teaching my little Tiger and she learned very quickly and once she started speaking again the extent of her learning was hard to miss.  So I have proof that homeschooling worked or works? for Tiger.

 

 

Flash forward and Tiger starts public school.

Complete Disaster, culminating in Tiger suffering a regression. Losing 30% of her bodyweight and self injuring. Her entire personality changed, to the point that I wonder if she doesn't have ODD.

 If you want a good cry see post Pain and Suffering A Lesson Plan.

 

So I know a standard classroom, even with supports, doesn't work for Tiger. Her sensitivities are too great.  She couldn't cope with all the movement, light and noise and that was just in the classroom. At recess, well if you saw what I saw, you would do my goose impression too.

 

Sniff*

 

After public came private school. The private school was and is awesome. They adjusted her curriculum day by day to match her abilities. The ratio was 1 teacher to 8 students!!, & she has never attempted to leave her little school ever, not even once. However, she still fights about going to school each day, we still have meltdowns after school, from exhaustion mostly. The effects of the public school debacle are still very evident. Tiger is now tough to engage, if she is not interested, she is not doing it. She hasn't recovered her fine motor skills and she isn't an easy going cooperative kid.

She negotiates and debates about her workload and flat out refuses to be tested. She spent most mornings in grade one and most afternoons in SK. She is ready for grade 2 math but she is not performing to her capabilities in any other subject. Tigerlily is only 6 so repeating grade 1 full day was the plan for this fall but...... I'm questioning if that is the best course for her.  She is still dramatically underweight, still gets sick really easily and recovers slowly. she missed 30 days of school that's more than a months tuition gone, and well special schools come with special price tags.

So research has begun and oh boy there are lots of options.

 

We've eliminated public school for obvious reasons.

Private is still an option, we love her school but how long can we afford it.

Homeschooling has worked in the past but with her current attitude toward learning I'm not sure if I'm strong enough or patient enough, even if she's asking to be homeschooled.

A combination

Private Tutor

Unschooling

 

It's all a little daunting, and straying from the mainstream is scary in and of itself.

 

Daddybear thinks that we need to back off while she is still little perhaps De-school her before making any decisions about her future educational path. He thinks that with all the therapy and school that she has been subjected to too much pressure to perform. It's true that Tiger has had to work a lot harder than most kids. I'm so proud of her progress, but have I pushed her too hard?  There is a lot of therapy scheduled this summer, most kids get to play all summer.....

 

So I dunno what I'm doing here. Maybe we'll let the psychologist weigh in before we decide.

 

 

The High Functioning Life, there's lots of choices to be made but don't worry, they only affect the ones you love most in the world.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Pain & Suffering, A Lesson Plan.

I have to tell this in story format or I'll start doing my goose impression and be unable to complete this post. I really failed my Tiger here. I made mistake, after mistake, after mistake and ultimately Tiger paid a heavy price for my inability to surrender or give up on my dreams for her.
Warning this post is very long, you might want a cup of tea and some Kleenex.

I'm scarfing a chocolate bar and drinking a BIG cup of coffee.

Once upon a time there was a little girl diagnosed with high functioning autism.
Luckily she was diagnosed very young and responded wonderfully to therapy.
The little girl made remarkable progress and was deemed ready for school early.
She was doing so well, it was suspected she was gifted.

The little girl had to wait until the following year to start school, but still things were going very well, so well in fact, that the little girl was discharged from most of her therapies and her mama was able to go back to work.

The little girl continued doing wonderfully in her daycare.
She knew her letters, numbers,shapes,colours, could print her name. The little girl was counting, skip counting and even doing a little bit of addition. Her care provider ran a lovely and quiet daycare with only a few children and a great routine. She worked with the little girl on her fine motor skills while the other kids napped, and the little girl continued to improve.

There were obviously still issues, the little one was still a major flight risk. She still had meltdowns and bad days where she wasn't mobile. The little girl struggled with her sensitivities to lights and sounds. Her abilities still varied by day, hour, minute! The little one was still up every single night, but her mama had adjusted (given up on ever sleeping 8 hours ever again). Most importantly, the little girl was happy and healthy and eager to learn new things. She loved doing experiments and exploring new concepts, especially math related.

The parents consulted her specialist and therapists and  researched schools and finally decided on a French immersion program, very close to mama's work. The mama had always wanted that for her child and since the girl was so smart and had already completed the kindergarten program in English it was hoped that the immersion program would keep her from getting bored and stagnating.

It was also secretly hoped that she would be the only ASD in her class and or program and thus have less competition for EA hours and supports and also be surrounded by bright "normal" children to emulate.

Even though her parents had done everything they could to prepare both her and the school for her arrival, found after school care within walking distance of the school.
Attending meetings
Sharing treatment and therapy information
Providing documentation
Requesting an EA
Alerting the school to her flight risk, sensitivities and challenges.
Making visits prior to school starting
Providing materials and a proximity alarm system for her and her EA to use etc.

It didn't go well.

Well that's not strictly true, on her orientation days where only half the class was present and the day was short, the little girl did just fine. The first 2 weeks she had an EA check in with her periodically. The school withdrew EA hours since the little girl seemed to fit into the new routine just fine.


Then full class and full day started.

The little girl started having meltdowns about going to school every morning.
When her mommy would pick her up from after school care the little girl would fall apart, screaming and flailing in her carseat until she passed out from exhaustion.

The after school care provider quit, she couldn't handle the little girl.

The little girl walked out of the kinderyard one morning, passed by countless adults and headed down the street. Only the fact that her mama looked back and saw her on the street saved her from being a statistic.

It got worse with meltdowns moving into the classroom. The little girl escaping from her classroom and being found in the gym, the library the school hall and trying to get out the front doors.
Mama went to countless meetings, trying to get more help for her little girl.
She gave her long awaited ABA sessions to the school.
She sent Erin Oaks and Kerry's place to do school assessments.
The school wanted to backtrack to using pecs,
The little girl attacked another child when they took completed items off her pecs board.
She was sent home.

The little girl was changing, the happy, eager little bunny was becoming a miserable and angry kid.

The little girl managed to get into another childs lunch and ate a fruit roll up.
The school called as the resulting manic fit required physical restraints, and the little girl ended up at the hospital due to an extended racing heart beat. (The little girls system couldn't handle the Tartrazine and chemicals in the candy).

The little girl kept catching viruses she was sick every month.

The mama had to go part time so she could take the little girl directly to her class and pick her up from there because the little girl was trying to leave the schoolyard everyday. This seemed to help.

& then it didn't.

The little girl started self injuring.

More meetings, with the school, with the school board, with Kerry's place, with Erin Oaks with her specialist, with a psychologist.

Then one day the mama's boss said something that made the mama stop fighting.

She said " You can't make a square peg fit in a round hole".


The mama pulled the little girl out of school.

In less than 5 months the little girl had gone from happy, healthy and engaged to angry, sick, miserable and uninterested in learning. She was down to 24 lbs. She had lost her tri-grip, her sight words and reading, her stims had become more pronounced and she was self injuring. the specialist said it was a mild regression, but 18 months later we still haven't recovered.

I'll never forgive myself for not seeing the truth of the matter and changing course sooner.

I wanted so badly for Tiger to have and do all the things she would do if she were "normal" that I fought for that dream much harder and longer than if I had just stepped back and accepted that Tigerlily is a diamond and as such she deserves better than to be forced into some cookie cutter mold.

So we sold our house and Tiger moved over to a private school that is just perfect for her.

She's never attempted to leave.


The High Functioning Life, there's no going back, and we can't fix the past but we can always do better.

Lesson Learned


HFL Mama

So Much To Say, Eh!

Whew, there has been a lot happening in Tigerland lately.

First off, the switchover to natural gas is complete. They completed the project in just two days.
It was great, and Tiger was great. Mostly she hid in her room, she wore her headphones and when that didn't work, we went outside. When the workmen came outside to drill, we went inside and when the smell was yucky, we went to the backyard, it was a lot of in and outs, but there were no meltdowns and that's just awesome.

Oh and Tiger is really digging the air conditioning, getting some more sleep around here.
Happy Happy, Joy Joy Dancing all around the place.

Amazingly the government of Ontario has reversed its decision to end IBI at age 5 !!
My sister in-law and I both cried when we heard the news. The relief I feel knowing that therapy will be available should Tiger suffer another regression is just so immense, I have no words and I might start honking like a goose if I keep thinking about it, so lets move on. More great news...
Tiger is being allowed to access ABA out of area, which is simply awesome, saving us a ton of money in gas and hours of screaming in the car.

To all of you who campaigned, signed petitions, emailed, called, hash tagged and protested along with us, let me say Thank-you. No matter how small your act of support was, it made a difference and the officials we elected heard your voice as well as mine. To our elected officials I say Thank-you for listening and reevaluating your position. I'm so proud to be a Canadian right now.

Speaking of being a Canadian. We ended up having a much larger than expected celebration.
We have more friends than I thought, and even though it rained on Friday  we still had a great time. We just extended the party, straight through till late Saturday night.

Tiger only had  a few meltdowns on Friday and Saturday.  Admittedly I had a lot of help pulling this off. My BFF basically runs the show when she's here, for which I am eternally grateful, and my in-laws took on most of Tiger watch, which makes it possible for me to relax and have some fun. & boy did I have fun, I had 2 mixed drinks people... 2!!!!


The High Functioning Life, where we don't get out much, but we still know how to party.

HFL Mama

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