My Patronus Is A Beaver

Guess what I've been watching!
If you can't just go now cuz I'm not explaining my HP references today.

Anyways for my fellow HP fans I was up very late last night and somewhere around  4 am I decided that I absolutely love the idea of having a spirit animal, Patronus.

I then started assigning different animals to different people and they weren't as obvious as you might suppose.

For example I think Daddybear would actually have an Orca as his spirit animal.
I think Tigerlily would have a skunk and I think a beaver would be fitting for me.

OK obviously I've had no sleep and this is a weird post but I just thought I'd put it out there.

I think I have the spirit of a beaver. I'm very industrious, I like to be productive in a tangible way. I tend to alter the environment around me to suit my families needs etc. Anyways a quick google found this and I want one.

https://www.google.ca/url?sa=i&rct=j&q=&esrc=s&source=images&cd=&cad=rja&uact=8&ved=0ahUKEwi21d6fvoDRAhUG2oMKHZZnAxEQjhwIBQ&url=https%3A%2F%2Fwww.redbubble.com%2Fpeople%2Fjerosmith0819%2Fworks%2F12633447-my-patronus-is-a-beaver%3Fp%3Dthrow-pillow&psig=AFQjCNFe47tIHoZ0DOm7HlcZGoh9SxwP4g&ust=1482244752932659

Maybe I should sleep while Tiger is in school, I'm devoting too much thought to this idea.
& I'm not sure I should really use a rodent as a reflection of myself , but it is very Canadian of me eh!



The High Functioning Life, where 4am's bright ideas sound a little silly after I've had a coffee.

HFL Mama

Weighing Success

I love it when a plan comes together.

Now we've switched to a new school, we have an IEP, we have an EA and now we are getting OT and possibly PT at school as well. We are still doing ABA both funded and private and we are making progress again. It amazes me how strong my little girl is. Switching schools can be traumatic for any kid, but Tiger has coped far better than I dared to dream.

I'll be honest I didn't expect this to go so well. Sure her sleep was messed up for a few weeks before and after the switch, but she did sleep. Sure we had some meltdowns, but not as many or as severe as I had feared. Now who do I credit with this smooth transition?

Why me of course.  Just kidding... no not really kidding. I'm an awesome mama eh. I'm a badass when it comes to my kid .  I put a lot of hard work into this transition. There were dozen of  calls and meetings going on, actually they are still happening but you want to know how I know I've done a good job?

Tiger is gaining weight.

She is on track to break 40 lbs this year, & that is just huge folks.

Any of you out there with feeding issues will understand why writing that sentence, brings on the goose impression.

Honk sniff*

Ok so it's not all me, I have to say this new board, principal, teacher, EA , bus driver and aide have all done there absolute best to make this transition as easy for Tiger as possible.  They've also spent hours on calls and meetings and visits, assessments etc. I was very hesitant to trust the public system again after how badly our first foray went, but this is going OK. and I'm even considering starting a new adventure of my own, just weighing my options right now.

So I'm in happy mode today and wanted to share, have a great day, I'm going to go bake a non stress cake.


The High Functioning Life, where we can physically weigh our success! 39.6 pounds worth to be exact.

HFL Mama


Update: at the end of January 2017 we are now officially 40.6 lbs!
Do a little dance, bake another batch, get on the scale woo!

It's Not You, It's Me.

It's not you..... it's me. I've changed.

After years on the ASD train, I am completely immersed in a different type of life, and it has changed me.

I think I'm a better person.
I'm more patient... because I have to be.
I'm more open and honest about difficulties and challenges ..... because I have to be.
I've shed the majority of my materialism, envy and false pride because, priorities, people.

For the most part I don't care about what other people think of me anymore. Don't like my bagged out, no makeup, yoga pants wearing style ... bite me, cuz I spend my cash on my kids ABA eh. My hair is  always in a messy bun. That ombre style, yeah I'm rocking it, cuz I can't keep the colour up.  I'm not so vain anymore.

I'm wiser,
I've learned a ton of stuff about special education, autism, early child development, therapies etc.
I'm more forgiving. I can let sh*t go, because really who cares, who said what,
 when I'm negotiating a new IEP, following up with CCAC, CRA and PEER Evaluations.

 I work with a whole team of people and keep up communications between different agencies to ensure that everyone is working on the same page.

I am organized, I have contact lists, records and files ready at my fingertips should they be needed.
The bag I take to meetings weighs a ton, but I never have to get back to you with information.
Just a minute I have it right here!

I'm a machete to red tape.
I can negotiate.
I'm pushy and persistent, yes I will follow up with you, don't doubt it.
No I won't reschedule, I'm sorry (cuz I'm Canadian) but you'll need to push something else on your calendar, I've already made arrangements to be there.

I am an autism mom and I'm a badass.The board sent a rep to cover their asses at every meeting for the new school, I like the new school, they don't dick around.

So if you find me aggressive, if my candor makes you uncomfortable don't worry..

It's not you, it's me and I like me.

Who do you like?


The High Functioning Life, where we don't get to be typical, we get to be warriors!

HFL Mama.

Hurdles

And here we go again.
It seems that no matter how hard we try, what sacrifices we make etc., that something else always happens to us. I swear if it wasn't for bad luck, or maybe hubby and I just used up all our good luck finding each other.  For whatever reason,  our life mantra is turning into: If it can go wrong, it will.

Thankfully I'm a Canadian so this is all really first world complaints.

It's actually pretty funny, I mean, I may be tempting fate here, but really its kind of ridiculous the way every single time hubby and I start to get ahead another bomb drops, I mean what else can happen.

Our Mortgage was processed incorrectly and so our payment is going up by 25%
Tuition went up this year.
Remember the job that told me they would hire me back in the fall... guess what, they meant only if I no longer required an accommodation . Sure yeah Tigers ASD was cured over the summer all she needed was vitamin D hahahaha.
That great job offer I had that was supposed to start this week, yeah they ran into roadblocks and I'm out of luck.

We had to take Tiger out of her private school, and my heart is broken. I loved our little school.
Tiger loved her little school and she was doing so well there.
At first I hoped this was only going to be a temporary thing, but it doesn't look like it will be.

Now for the good news.

We found a new school.

Actually I didn't have to jump too many hurdles for this to happen.

I visited our local school, met the principal and special education lead and it quickly became apparent that Tiger would not be going there. The yard is unfenced, ummmmm no.
The principal started in immediately with budget constraints and staffing issues.
& its this really cool open concept layout with pods and big open spaces. Totally neat but super loud and there is like 70 kids in a pod with 3 teachers and a couple EA's, not exactly a sensory friendly environment and they don't have a sensory friendly class nor were they interested in creating one.

Anyways the principal made it plain I would have to go through the board if we needed anything extra. Like EA hours , supervision at recess etc. I am so demanding ya know, I expect a known flight risk to have supervision, like what, its there job to watch over my child while she's in school.

So I called the new board. (remember we sold our house and moved to fund private school and therapy.... so a new board that doesn't know me heehee) and I reminded them that Tiger had the right to receive an education without being put at risk or harmed in the process. I also told them that I was totally uninterested in anything they had to say about budgets, given how many sacrifices we've  made. I told them about Tigers first foray into school and just how badly that went. I explained her diagnosis and her needs and asked them to find me a school that was able to meet my girls needs without making her suffer before providing supports.

& They delivered!

Tiger is going to a small school a couple villages over. She is being picked up and dropped off at our house. She is met by an EA who helps her transition into class. There is support all day in her class and she has access to a beautiful developmental learning suite and a quiet room called the lounge. There is fencing, it's all on one floor. They followed my lead regarding which grade to put her in and they are working with me on an IEP getting her Physio ad OT at school and they have another HFA girl in Tigers class!! She's not alone, she's got a therapy partner!

The fly in the ointment..... the school is on the chopping block for next year.

But that's a hurdle for a later date.

Interesting fact about me, I ran hurdles in highschool.

I'm five foot one in my shoes, but I did it!



The High Functioning Life, what's one more hurdle...

HFL Mama

The Trick To Halloween

I'm just kidding, there is no trick, just grin and bear it.

We had some issues with trick or treating, nothing major. The first few houses were our neighbours whom she somewhat knows so those went well, but as we continued up the street. My baby zombie lost her words.
(yes she changed out of the princess costume and decided to be a zombie like me)
She started gesturing instead of speaking, which some people found a little offensive, myself included, I'm sorry, but she can talk, and should, there will be no rewards for backsliding in behaviour.
 We took a break to discuss the Halloween protocol, but she was clearly not taking it in. I had to remind her to use her words at every single house, both to say, "Trick or Treat" & to say, "Thank-you" and or "Happy Halloween".  She said them out of order, she said it backwards but she tried and that is what matters.
 She only went out for half an hour before she wanted to quit. She fell twice, losing her balance because she was swivelling her head all around looking at everything.  She complimented the other kids on their cool costumes and loved the dogs that were dressed up. She was having a great, but difficult time.
 There were lots of  people out, its the first year that we've tricked or treated with no snow, sleet or freezing rain!  I was all set for a long haul but she was exhausted after the second street. I ended up piggy backing her home, which she thought was fabulous until I told her I needed to put her down to readjust my hold on her and the bag. Before I could get down she just went limp and let go crashing to the sidewalk below. She screamed, she cried, she screamed some more, we could see our house so I picked her up, dusted her off and was grateful for being so short. We made it home and she sat with me to hand out candy on the porch for a bit, but it was bedtime so I sent her in to Daddybear.

Oh Boy!! Bad Candy!! Bad, Bad, Candy!! Tigerlily has an issue with this evil chemical called Tartrazine, and that crap is in almost all the coloured candy stuff. There's a reason they have to label that sh*te for you people, its a warning. Anyways occasionally we look the other way and let her have the bad candy, Halloween being one of those times. Poor kiddo convinced her Daddybear to let her have some candy before bed. ( I would have let her have chips not candy, but I was still handing out candy outside when this went down).  Poor kiddo, heart racing, sweating and pale, she can't sleep, she's too hot, she can't be still etc. Bad Candy.

So Halloween is over, and I've eaten my share of sugary junk and Tiger is hounding me endlessly for another piece of candy.  I figure if I eat two for her every one, we will get though this faster.
I may also blame the dog for the sudden disappearance of the rest of her candy. There is only so much manic munchkin I can handle.

The High Functioning Life, where every piece of candy is tricky.



Side Note: Tiger had an absolute blast playing in the Halloween makeup. She did her own and added more to mine we looked quite gruesome.

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

Armadillo Style

Tiger is 6 years old and sometimes she's a little monster. In public my Tiger works hard to keep it together, so if she starts going off, I take a step back and evaluate. Is this a temper tantrum or a meltdown. Tiger knows from experience that I have no problem correcting her behaviour, (Mama does not appreciate sass).   However, we strive to ensure she is not punished, for things out of her control.

Its not always easy to tell, especially during an "event" what we are dealing with. I'm the first to admit that when my Tigerlily starts going off, I start stressing, which impacts my ability to tell the difference, & if HFL Mama needs a minute, to determine what is actually happening, then the complete stranger who knows nothing of my child's challenges has no idea, and should stay out of it, keeping their unkind words and dirty looks to themselves. I know that I need a thick skin, that I need to ignore the ignorant and keep my cool as a good example for Tigerlily, but under the thick skin, I can get a little heated.

One thing to remember, with a high functioning child, is that they can be acting perfectly normal, and then BAM!. There are usually signs before a full meltdown, but..... If she gets hurt, or suffers an adrenal response, she may meltdown without warning. One time we walked into a sub shop, there was a big mural on the wall, Tiger saw it, threw herself backwards, smacked her head and a full meltdown ensued.

The giant mural brought on a rush of adrenaline, that put her into fight or flight, causing an involuntary physical reaction, causing injury, causing a meltdown.
& at the time I had no idea, it happens so fast sometimes. It was only after the event that I was able to figure out exactly what had happened. Sometimes I miss the warning signs and sometimes its a temper tantrum that I've mistaken for a meltdown. I get it wrong sometimes, but I would rather let a tantrum pass without consequence than give her negative consequences she doesn't deserve. Its not a perfect science my friends, I'm just a mom doing her best to be fair.

Do you think the other patrons were fair? I doubt they had any idea why she was screaming,  but they gave us hairy eyeballs anyways. The whole incident was only minutes long, but more than a year later, I remember the looks and the muttering and it makes me hot under the collar.

Another time, we went into a restaurant and sat down, within a minute Tiger had started stimming, I asked her what was wrong and she grabbed her nose. The smell from the kitchen was too strong and causing her discomfort. She loudly stated that it was stinky, and we got up and left, the waitress gave me a look, which annoyed me, but I'm Canadian eh, so I apologized, but when Tiger apologized to me, I told her that she had nothing to be sorry for, and that she had done the right thing by letting me know she was having difficulty before she lost control. Then I felt bad for apologizing to the server in front of her and the descent into feelings of inadequacy and guilt began.

With years of these small incidents, looks, unkind words behind me I should be able to shrug it off by now, but sometimes it gets me anyways and I want to just curl up in a ball armour out, armadillo style.


The High Functioning Life, thick skin is in this season.
HFL Mama

I Need A Late Slip

I hate being late. Being late to work, school or an event always makes me feel bad. Why can't I get it together, why didn't I give myself more time, how do I program alerts and or use the calendar on this crazy super iPhone? Why does Tiger always have issues on our way out the door?

I like to think that I've got things under control, but if punctuality is any indicator,....
 I don't. Tiger has been back in school for 9 days now and we've been late 5 of them, once dramatically (40 minutes is a bit much). Sometimes, I swear the universe is against me. It doesn't seem to matter what I do, I can pack lunches the night before, have everything by the door and get up 3 hrs before we need to leave  making sure that I am completely ready to go before waking my wee beastie up and that will be the day the dog starts puking all over the place or Tiger has an hour long melt down over socks, or there will be a truck parked in front of my driveway, with no driver to be found!, yes that actually happened, I drove over the lawn to get out (I love my truck).

 So as much as I hate to be late, I recognize that not everything is within my power to control. However, if that sneaky black cat gets out the back door, one more time, he'll just have to stay out.



The High Functioning Life, please don't be offended when we are late.

HFL Mama.

This Is Not A Eulogy

I'm sorry, I haven't posted in a few weeks and having read the title of this post I'm sure you can guess why.

This post is not about dealing with the death of a loved one or how to tell an HFA child about the death of their Great Grandmama. That decision has been put on hold until the subject becomes unavoidable. Childhood is the kingdom where no one dies, and all that. This post is also not a eulogy for my Grandmother. Instead, I'd like to write about why I named my daughter after my aunt and grandmother.

First my Aunty Lily, who took me in as a very damaged girl and showed me what it was to love oneself. I found her fascinating, she was bold and energetic and lovely. To list all of her accomplishments would make this post far too long so instead I will tell you that my daughter is named after her because she was unafraid to live in a way that I had never seen before. She enjoyed life in a way that I will always envy. She was everything I wanted to be and am trying to become. If my Tigerlily turns out to be half the woman she was, that will mean she is truly living.

Secondly, my daughter bears my grandmothers name as a testament to her. My Grandmama was the matriarch. She was beautiful and had her own sense of style. Madame Bijou (jewellery lady) she enjoyed the finer things in life unashamedly. She loved a party and made undrinkable margaritas. She also loved her family with such fierce devotion that my father referred to her as the Dragon Lady forever,after he divorced my mother. She was unique,  and confident of her place in the world. I wish my daughter to be just as sure of herself and her place in the world that she too will feel free to be known to all as the person she really is and to love others for who they really are faults and all.

The High Functioning Life, this is not a eulogy, it's a hope and a prayer.

HFL Mama

If It Ain't Broke

We all know the saying, "if it ain't broke, don't fix it". Well that's how I made up my mind about continuing with private school as long as I can for Tigerlily.

June was a rough month for me in regards to getting Tiger to and from school. Getting her ready to go was taking over an hour and she was screaming on the way home. She also started saying she was fat and that she didn't want to eat because she would be fat and ugly. She said it on the way home from school. Tigerlily is very literal I don't know who, when or what was said but it breaks my heart that at the age of 6 my daughter is already subject to societal pressures to be pretty and thin. I started worrying about her being teased at school.

Then I ran into an acquaintance who homeschools, believes in it whole heartedly and talked about all the wonderful things they were doing etc. & then I started second guessing myself again. Tiger seriously suffered during the 5 months she was in a public school. I can't seem to let go of my guilt over sending her or how long it took me to take her out. We put her into a private school and things got much better. Still I wondered if I was doing the right thing and so I started researching homeschooling and checking out books at the library and reading blogs etc. I even set up a school room and tried.

But I can't do it. I am just not patient  or strong enough. The whining, screaming, crying, meltdowns and debates just suck the life right out of me. I have a tendency to drive myself crazy trying to be a superwoman and do it all. If you can do it, more power to ya but its not working for me folks.



Today I dropped her off at her schools last week of summer camp & guess what, after being there for less than 5 minutes she asked her teacher for some math to do.

Decision made. I'll go back to work and she'll go back to school.


The High Functioning Life, where it's ok to let the professionals handle it.

HFL Mama

Cinema One

I'm sure it will come as no surprise that Tigerlily loves T.V., YouTube, Netflix, etc. Daddybear is a gamer and binge watcher of series. I prefer to read, blog,  FB and Pinterest but I do follow a couple shows and we all love movies. But we don't go to the movies. Frankly we are just not up for the public meltdown, paying the exorbitant admissions only to have to leave early and the theatre is 45 min. away.

I've attempted movies before, those mommy and me showings but  very loud public meltdowns had me carrying her out to the car, before the movies even began. It's been years since I've tried.

Until last Friday.

Last Friday was one of those days where Tiger seems like a 12 year old instead of 6 year old. Happy, calm, completely self sufficient and a joy to parent. She amazed during her swimming lesson, had no problems with driving around running errands, she didn't need any reminders or social prompting. There was no stimming AT ALL. She had an ASD vacation day,  a golden day. The only downside to the day was knowing it had to come to an end. Daddybear wouldn't be home for our bedtime routine. ( did alarm bells just go off in your head cuz I'm hearing them just typing that sentence). Yes I knew our vacation was going to be a short one, and I really just wanted to make it last. So I took her to the movies.

We went to see The Secret Life Of Pets. We sat in the back row, I spoke briefly with the people surrounding us, alerting them that this was our first movie, we might be loud and that we would be out of our seats, up and down throughout the movie. I did not offer an explanation, nor any form of apology, but I did give them a heads up so that they could move away from us prior to the movie starting. The people in front of us chose to move, those beside stayed. I figure tickets are expensive and that alerting them ahead of time was a good way to prevent a problem later, if Tiger had any issues.

Why did I say if? Of course she had issues, the wait for the movie to start was a bit long, the commercials made her mad for some reason but the previews were ok. She was good for the first 30 minutes and then the stimming started, and then the up and down out of her chair, she wanted to watch the show, she didn't want to leave but she was getting overwhelmed and of course tired this was 7 o'clock showing and Tiger is a serious sundowner. Eventually I just pulled her onto my lap into and held her in the cannonball position so she could get pressure sensory input, which would allow her to focus on the movie. We made it to the end of the movie this way.

After the movie we got popcorn and headed home. As soon as we got in the door Tiger announced that she was going to bed and that she wasn't going to brush her teeth or change.

"I just want to go to sleep right now, good night Mama".

She didn't even notice Daddybear wasn't home.


The High Functioning Life, I'll take two tickets please.


HFL Mama

To Do

Hey I wrote this a few days ago but forgot to post it, guess it should have been on my to do list.


I tie myself up in knots, trying to get my to do list done. I feel like I'm always 10 steps behind. This summer is flying past, I had such big plans, all the things I wanted to do with Tiger, places I wanted to take her, things I wanted to teach her, therapy and homeschooling and I'm an idiot.

Somewhere amongst making all my grand plans and booking stuff I forgot to take into account Tiger.

 Tiger behaves differently depending on the day, how much sleep she's had, which stars are aligned etc. For example, yesterday it took three hours to get Tiger up and ready for the day. That's fed, dressed, teeth brushed, face washed and hair brushed. That's 2 and a half hours of her arguing, yelling, crying, laying on the floor, whining and complaining to accomplish a few basic tasks and half an hour for her to do them. I had to cancel our appointment for the morning, (a little late, since we'd already missed it by the time I called). Yesterday was a bad day.

Today we were up and out within an hour, had time for Timmies and were early for our swimming lesson. No extra effort required, today is a good day. We were able to stop in at the grocer and Tiger is happily playing independently with her dollies, and she is playing not just sorting and lining them up and changing doll outfits, she is full on pretend playing and it's a beautiful thing. Today my kid is eating a lot of food and using her utensils. Today I was able to finish cleaning out the storage room, sort and clean the linen closets and finish unpacking my sewing and craft boxes and hey I'm even writing a post. She is having such a good day, I'm thinking about attempting taking her to a movie, but I'll probably chicken out. I'm sorry that I didn't have more stuff booked for today.

I'm not saying we haven't managed to tick some boxes off our summer to do list, but I am admitting, I was far too ambitious, given that Tiger prefers to stay home in her pajamas. So for the most part other than swimming and appointments Tiger has been having a lazy summer. Whenever I plan to take her places she declines or has a fit about going in the truck.  She seems perfectly content to hang around our house and park.

A friend posted on line about how there is only 23 days left of summer and I had a little panic attack. I don't know how you feel, but I never, ever, feel like I'm doing enough. Daddybear says I need to relax and accept that Tiger is happy to stay in her PJ's and lounge. That she doesn't have to have a playdate every week, a special outing every weekend etc. Meanwhile I'm looking at my pinterest inspired summer bucket/ to do list feeling like a failure because so much is just not going to happen.

So I'm going to scrap the impossible list and write myself a new one  each week that is much more reasonable.


The High Functioning Life, where the to do list has no end, but we can still derive satisfaction from crossing items off the list.

HFL Mama

Big Doses.

I like my stress in big doses. Ok not really, but, since that's the way the cookie seems to crumble,  that's what I tell myself. .

Right now I feel like I'm riding an emotional cheese grater. My mums health is not good, in fact its bad and it was shocking to see just how little of her is left. My grandmother is in the hospital, she might not go home, she had a bad fall and she's in a lot of pain. Heck I was in pain just looking at her. I don't know if she has enough fight left to get through the physical therapy in order to walk again and go home.

 I had to leave Tiger at home with Daddybear in order to travel down to see mum and grandma, and it's always hard to leave her  with someone else, even her Daddybear & then, I came home sick. I picked something up while visiting at the hospital and I was useless on Monday and Tuesday, I don't feel good today but, I feel better and so we are going to try and get some errands done. Nothing got done while I was away or sick, so you can just imagine my to do list for the next few days.

So I'm feeling a little exhausted, a little sick, a little stressed and a lot sad today.  I'm torn, I want to be here with my girl and there helping my family.  I want everything to be OK, and yet I know its not going to be.

 I'm feeling a little bogged down by it all. So I won't be writing another post till next week when hopefully I'll have something good to share.

Maybe I just need a big dose of caffeine to get me going again.

The High Functioning Life, I'll take that latte now please.

HFL Mama





HFL Mama

Acceptance & Denial

It seems to me, that within the autism community there are two camps.

Camp Acceptance promotes awareness, understanding and of course acceptance. My child is different not less. This is the way she is and we are not going to change her. This camp has great empathy for people with autism, doesn't seek to change them and is not looking for a cure so much as looking for ways to support and accommodate those on the spectrum

Camp Denial are the fighters, seeking ever more therapies, supplements, tools and strategies to treat their loved ones autism. They google the same topics repeatedly looking for new answers. If you've met one person with autism, you've met one person with autism. They continually question and fight to deny autism's grip on their loved one.

My Tigerlily is still very young, only 6 years old and I am usually to be found in camp denial. There was a big response to a line I wrote in one of my early posts.

"  Now I'm waging war against the invisible enemy who steals my child's smiles and interrupts her dreams at night."

I would cure my little girls autism. I want a cure. I want her to be free from all the sensitivities, stims and difficulties that arise because of her autism. I want her to be able to drink a warm drink when she's cold. I want her to be able to move all the parts of her body at once and do a great doggy paddle across the pool. I want her to be able to sleep at a sleepover and fix all the things that autism wrecks. I've been fighting this battle for a few years and I've won and lost battles along the way but I am not ready to give up the fight.

Now some will argue that autism alone does not cause all the symptoms I'm describing. That its the comorbid diagnoses that go with autism. That an autistic mind is a beautiful mind and seeing the world differently is a gift etc. That if she wasn't autistic she wouldn't be my Tigerlily.

But the fact of the matter is that autism rarely comes to the party alone. She's that annoying friend who shows up at your birthday with her own little posse.
She brings along sleep disorders and gastrointestinal issues, eating disorders, OCD, ODD, ADHD, SPD, epilepsy, fragile X syndrome, Rett etc.

Tigerlily's HFA isn't travelling alone. Although I have not sought formal diagnosis its' a pretty reasonable hypothesis that she has SPD. I always expected the ADHD that runs in my family and I'm thinking she's leaning towards ODD. I don't know what benefit would be derived from having the additional diagnoses as I am already treating everything I can, anyway I can. I'm a fighter because
 without her autism she would just be Lily.


And if she was just Lily, I would still have the same hopes and dreams I had for her before she was diagnosed with autism.

The High functioning Life, some of us are better at accepting our fate than others.

HFL Mama

Coffee Now & Always

I love Coffee.

I drink a lot of coffee. I rarely drink less than 2 cups a day, by which I mean two big Tigger mugs full, and frequently I drink closer to 4 or 5. I have a coffee station in my kitchen. I always need a coffee.

I'm drinking one right now.

Coffee is a part of my identity,  the world rarely sees me, without one in hand. I post coffee memes on my FB and friends and family post them to my wall daily, coffee makes people think of me eh. In fact, one of my life goals involves coffee. I was 16 living in rural Quebec with family when my aunt asked me to think about what I wanted out of life, what my goals were etc. Of course I wanted to be a famous actress, but there were some very practical goals  too.

I wanted Timmies* every day.

Some of you might be laughing at that, but if you've ever been homeless or experienced real hunger, you'll understand that my coffee goal represented a lot more, than a need for caffeine. I managed to reach that goal (off and on) and all of my other goals as well. (except the famous actress bit). In fact I've been struggling to set new goals for myself as I have so many that I am working towards that are for Tiger,..... But back to coffee.

Coffee plays a big part in my life.

Tim Horton's donated to my baby shower, providing cups and boxes and giving my friends permission to use the logo. My buddy created this for me I kept it up in my house until we moved.


Thanks Alex.

My husband makes me a coffee each morning to get me out of bed, and I make him a coffee to go, for his long commute into work. Coffee says I love you.
If I know how you take your coffee, chances are I think you're swell.
When I haven't slept through the night in weeks but still need to get up and go, coffee.
When I've got the job done, coffee. If I need the motivation to start the job coffee. If I have a problem I want to mull over with you, let's go for coffee.

& When Tiger wants to be sweet to me she knows ....


The High Functioning Life, where the answer is always coffee.

HFL Mama.





*For my international readers Tim Horton's or Timmies is a chain of Coffe/Donut shops.

Sink or Swim

Today we had our first private swimming lesson.
Man I feel bad for her instructor.
Tiger was excited, and nervous and more than a little stimmy. Jump, jump, jump, jump, jump, jump.

I have to be honest I was laughing so hard from the bench.
Tiger never stopped the whole lesson.
Chatter chatter chatter, jump jump jump
Can I do this, watch me do this, I wanna do this.

In true Tiger fashion she ran the whole show.
The lifeguard assigned to teach her looked a little stunned. I'll be honest here I
LMAO, it was so fun to watch Tiger run them ragged, instead of me. There were literally tears running down my face I was laughing so hard, it was so funny. About halfway through the lesson another instructor came to help.

I never said I was a nice person.

It was amazing though. Tiger could do way more than I thought.
This is our third attempt at level one swimming.
Tiger can retrieve stuff from the bottom of the pool (shallow end)
She can hold her breath, and open her eyes under water.
She can push off from the wall
Front float.
She can swim after a fashion its obvious there is some motor planning issues going on there.
she has difficulty with being on her back. My child has almost no body fat so she don't float folks.

Maybe because she had the whole pool to herself and 2 instructors by the end of her lesson, but she really gave 110% to her swimming today. we had to end early as she was frozen and exhausted. She was so determined to impress them and be able to go down the slide.

I bought her the bad candy, I was so proud of her and frankly she could use the extra calories.

She won't nap but she might lay around for a bit.
 The High Functioning Life, it's sinking while swimming folks.

HFL Mama

HFA Captured On Film

Autism, A Photo.

 

This is the best picture of HFA I have.

Can you see all the signs of autism here?

 

There's 6 on display.

 

1. lack of eye contact

2. sensory seeking behaviour (climbing on table to be up high)

3. Stimming just look at those twisty fingers.

4. Unusual fixation on objects, dice are cool.

5. Repetitive Behaviours sorting, stacking and lining dice up for hours

6. Toe walking, Ok. this one is you can't really tell in a picture. But she was, I swear.

 

It is just a perfect picture of HFA.

 

In this photo Tiger has just finished "playing" with a box of dice. It's probably not clear enough to tell in the photo, but the dice are all sorted out according to size and number of sides. She liked the mini square dice the best, so they got a line to themselves. She "played" with them for hours, stacking and sorting them different ways, she had so much "fun" that Daddybear gave her his collection of dice. She still pulls them out and sorts them on bad days now. This photo was taken a couple years ago, but it's one of the ones that sticks with me. I have other photos of Tiger sorting, stacking and lining stuff up. The Christmas I received a Keurig ( All Hail Fast Coffee) she ignored her new toys to sort the K-cups.

 

Tiger is awesome at sorting stuff. but somehow that skill hasn't made it to clean vs dirty clothes?

 

The High Functioning Life, where we don't build with Lego, so much as we sort it out by colour and number of bumps.

 

HFL Mama

 

 

Following The Script, What's my Line?

Maybe one day Tigerlily will be a famous director.
The kid loves to stage and script her play, her imaginative play is awesome.
She loves to set the scene and walk you through the storyline. Tiger will tell you exactly what she wants you to do in her little dramas, which is fine when she's playing with me or another adult.
It doesn't work so well with other kids. Well that's not strictly true, some kids are just awesome little people who instinctively alter their play to include Tiger.

Anyways, we have a playdate today and I'm a little worried about how it will go. You see, yesterday Tiger got a new hairbrush, and she has been scripting her dialogue about how she is going to tell her little friend about it.

Example: Name, like my new hairbrush? It's almost the exact same as yours except it is round and yours is square and you've picked some of the crystals off the back and mine are all there and I could have got the exact same but then I would have duplicated yours.

For hours last night Tiger rehearsed versions of this little speech. She was creating dialogues, about her trip to the dollar store, her hairbrush, her toys, pets etc.. She practices with her little dollies and will have the dolls supply the appropriate answers to her questions.

  She tends to plan encounters and when they don't go as planned, she doesn't know what to do. Again this is probably my fault, a behaviour we taught, inadvertently.

We/I taught Tiger how to introduce herself. We practiced the scenarios.She's been taught how to make requests, politely with eye contact. This was an ABA goal, there was a lot of practicing.
We've practiced meeting kids in the park, how to initiate play, how to take turns (still working on that one). In other words,
 in an effort to make socializing easier for Tigerlily, we have  created a new issue to work on. Or maybe this is just a normal part of her autism, the need for structure and routine in all aspects of her life, what do I know, not enough, obviously. Hopefully one day she will be self aware enough, that she can explain it all to me.

Then, there is the issue of other kids.... who have not been taught, or don't care to follow social rules. I can't even begin to describe the heartache that comes from watching my little Tiger bravely approach new kids, introduce herself, or ask to play only to be met with silence and blank stares, or ignored altogether. It's happened so many times *sigh*. Thankfully Tigerlily doesn't usually take these rejections to heart. Sometimes she will just repeat herself and that will get her a response and sometimes she will just walk away when they don't respond, but sometimes, she comes tearfully to me.

Leaving me to explain, that not everyone is friendly, that we cannot make people play or talk to us, and that we can only control ourselves and not other people. That she is not at fault for their behaviour, and that sometimes even when we are friendly and kind, other people won't be.

A hard lesson to have to teach my six year old. Sometimes I just don't have the words and so I just hold her and then ask her to play with me.

Thankfully todays playmates know my Tiger well, and they will play nice, even if they don't follow the script.

The High Functioning Life, excuse me director, but can I have a copy of the script...Please.


HFL Mama

Facing The Day

Ok this is anther post about me, not Tigerlily.

I don't want to face today.
This mornings news is heartbreaking.
There were 10 kids killed at a fireworks show in Nice, France by a madman driving a truck, in total he killed something like 120 people and injured a lot more.
The 5 yr old girl in Calgary... well the amber alert has been cancelled, they found her body.
Another article about a couple who killed a 5 yr old boy going to trial.
Pro Life Protesters using very large, and very graphic images spark outrage amongst parents of small children who see the images.
I found out yesterday that there are almost 50 Thousand kids in foster care in Canada.
On another front I saw a brilliant attack ad against Trump that showed small children watching all his hate speech, that followed with our children are listening, then switched to Hillary who in contrast looks and sounds like a complete saint, with her talk of working together.

Maybe it's the lack of sleep, maybe it was the immediate onslaught of craptacular news, but I'm not really feeling up to facing the world today, and yet I have to, and not only do I have to, but Tiger has to come along.

It's going to be a very long day.

I need to go to the bank, post office, grocery, pet, dollar store, and all with an unwilling Tiger in tow. We need to drive into a larger town too, so there is 90 minutes of truck involved.  So I already know there will be screaming, there will be whining, possibly a melt down.  I have to brave several parking lots with her, will she bolt? While we are shopping I will need to let go of her hand to pick something up or push the cart and when I do, what will happen?

I've already put this trip off twice this week because Tiger is so resistant to going anywhere lately.
I don't blame her,  I know its not her fault, I know she's only 6. I know her discomfort is real.

Can you feel my anxiety building?

I think I'll have another coffee before facing the day.


The High Functioning Life, it's just another day, we'll get through it.

HFL Mama


Sidenote: We didn't make it to the grocery store as Tiger made it quite clear that she was done for the day in between the bank and post office.

For The Love Of Food Colouring

Tiger loves food colouring.

I don't get it, but there it is. Any craft or activity that involves the food colouring is a winner.
The stuff can stain anything, and my dining room chairs are ruined but what's furniture compared to a child's joy.

We do colour experiments and we've done lots of different art experiences with the stuff and I just tell myself that it's the experiences she will remember, not how many times mommy flinched when she had the bottles in her hot little paws.

Today I messed the experience up. I should actually read the little articles attached to the pins I save eh, if I had I would know we were supposed to be making a sun catcher. I should have been using a plastic lid so we could peel it off when it dried.

 Instead we just painted on white glue. We will for sure do the experience again to make the sun catcher, but I thought this was just cool looking. Not as cool as the milk painting... but still pretty cool.

I'm straying from my original thoughts though. I just can't get over how expensive all her arts and crafts stuff is getting. Today I paid 6 bucks for food colouring.

Did I mention I'm not working right now?


The High Functioning Life, they'll remember the experiences.

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