Living a Lie.

Sometimes I feel like a fraud.

My daughter is very high functioning.

Tigerlily was diagnosed very young. She started therapy very young and did a lot of therapy, for a long time. She is the poster child for early intervention.
Most of the time my child passes as "normal".
Most people don't see her stims, and she's pretty good about keeping it together in public and we are very good at reading the signs of an impending melt down (exit stage left).
She attends a very small private school with only 40 students from JK to Grade 12.
In the right environment Tiger is totally functional.
If we are following the routine, and she's getting enough sleep and its a really good day, my little girl acts more like she's 10 than 6 years old.
One on one with adults she is amazing and again most typicals would never think she was autistic.

On the good days, its easy to lie to the world, we can hide our autism in plain sight, confident that the public won't pick up on it.

On a bad day, Tiger is difficult, things must be done as per the routine and even then she will be noticeably off. She will be clumsy and get hurt. There will be outbursts and overt stimming but even then most people will think she is just spoiled , or over tired etc.

On the roughest days, no one sees us.
Maybe because she is completely manic, stimming non stop, very loud and throwing her body around.Or maybe because she won't get up, because she can't walk and she's pulling herself around on the floor. Either way we are housebound on the rough days, hiding our autism at home.

Most days start off good and end leaning towards the bad. I know what days I can go to the store with her and which days I can't. We are really quite good at living the lie in public. Yet, I know its a lie and I'm keeping one eye open for the signs, at all times. I am very grateful for all the gains Tigerlily has made, and I'm so glad that we can play the part of average family in public.


The High Functioning Life where we put on our normal face to go out.

Saving Face

I'm not ashamed of my child's autism.

Instead I'm proud of my Tiger and I often brag about all the things she has overcome.
Every new skill mastered, is cause for celebration.  I'm not throwing parties over here, but I am having a fancy coffee, or a glass of wine with dinner, or making some treats for my little family. After all, Tigerlily has to work just that little bit harder to master skills, and lets face it, I need to be just that little bit more patient, persistent or pushy, to get the job done.

Some of the things I've celebrated, most parents never even think about,
for instance, automatic reactions.

When you stumble or fall you automatically put your hands out. This can help you catch yourself and stop the fall, it can also save your face..... literally.




Tiger needed to be taught how to put her hands out when falling. Due to her motor planning challenges, she suffered many a split lip and bruised face. 

The OT and PT showed me some really cool activities to do with her. My favourite was superman. Tiger would lie tummy down on her small exercise ball and we would tip it forward until she was flying,( leg and arms off the ball, balancing on her tummy) and then tip the ball forward slowly till she was almost falling, so she could practice getting her hands up.

I remember the first time she got her hands up in time to save herself. What a great day that was.


The High Functioning Life, where there's no shame in the need to train.

7 O'clock Crazies

Flailing is the most apt description for how a tired Tiger moves around.

As the day goes on, my skinny, low muscle tone Tiger, loses control of her movements.

The result of this loss can be violent. The Tiger running and crashing into walls, floors and us. The flailing arms and legs cause her to knock things over. She falls a lot more than other kids.
The lack of control also affects her emotional regulation, volume control etc. The evenings are when the differences between neuro typical and autistic are the most evident. Most kids get clumsy when they are tired, Tigerlily takes it to the next level.

We call this the 7 O'clock crazies.

Lately the crazies include mule kicking and cartwheel attempts in bed, but I've noticed something new. The 7 O'clock crazies have moved to 8 !?!

I've also noticed that we are having less instances of biting our tongue and cheeks at dinnertime.
& this gives me hope.

Hope that my child is getting stronger.

I want to keep her bed time to 8pm, but with the crazies starting later, the push back I'm getting is shall we say a wee bit tiring.

I'm real tired folks.

For my 6 year old still doesn't sleep through the night, and with her pushing her bedtime back AND getting up in the night AND having to battle to get her up for school.

I am slowly going crazy 1 2 3 4 5 6 switch!


The High Functioning Life, where sometimes the mama just has to tag daddy in and go to bed early.

Humble Pie

One of the hardest things about being a special needs parent is feeling inadequate.

I've said it before and I'll say it again. Having a special needs kiddo, did not somehow magically grant me more patience, coping skills or inherent knowledge. I had to work hard to catch up and understand what the doctors were telling me.
I made mistakes, but I learned and am still learning.

One of the mistakes I made was trying to go it alone. I tried to do everything myself.  I shouldn't have.

I feel like I'm making that mistake again.

They are currently overhauling Autism Services in Ontario in a major way.
Everyone is talking about it on my FB support groups.

I was sent a link for a 130 page government program brief, but I won't pretend I've read it all or understand it.

What I need is for someone smarter than me to look at this program and tell me how it affects Tiger specifically. Reading through bits and pieces and examples of fictitious children is not helping me.

One group is shouting YAY reduced wait times
Another group is shouting NO you are writing our children off at 5 yrs old.

An eight thousand dollar payout to those over the age limit, who are still waiting for IBI seems like a slap in the face to me. I don't want to freak anyone out here but I spent 10 grand in the first couple months of Tigers treatment.  My hubby says we are over 100k spent on plan Tiger at this point and, she's only just turned six,  We estimate we will spend another 160k by the time she is 18 yrs old provided she doesn't experience another regression.  I mean we sold our house and someone thinks 8 thousand is adequate for a child who needs Intensive Behavioural Intervention. I must be misinterpreting this. Tiger is only moderately severe, she doesn't even qualify for IBI anymore. What does that mean, will there be no services available if she does regress?

So I'm going to have to eat some humble pie, admit I don't understand the plan as it pertains to my girl and go ask someone to break it down for me. It's too important to ignore.


The High Functioning Life, where sometimes, you just have to smile and swallow.

HFL Mama



Update!

So I've read some more, and asked some more questions and it's really sad news.
Our government, has in fact decided to try to write off all the kids waiting for IBI, who are over five with a payment of 8 thousand.  I had really hoped, that I was misinterpreting what I was reading.

 So instead of receiving as much therapy as they need, these kids will only get as much therapy as their parents can pay for, and what do you think will happen to the price of  therapy when the demand suddenly increases?  Talk about a creating a class system in health care.  The argument is that the most benefit is reaped by younger children, and that the effectiveness of therapy decreases with age. Even if that's true, so what ? If a 10 yr old could derive any benefit form IBI should they be denied? A 12 year old whose suffered a regression should be denied therapy?

Let me put it another way,

If a child was waiting for sign language training, would a cut off age be acceptable?

What if they were waiting for specialty equipment like prosthetics or implants, would an age cut off  be ok then?


The lack of funding and resources for therapy that resulted in these huge wait times is not our kids fault. How can any decent human being vote for denying therapy to disabled children?

Sign the petitions, write the letters, call or email your MP's office.

Autism doesn't end at 5.

Battle Story #4 Potty Wars

Let me tell you, right now, this battle was not won alone.
This particular challenge was accepted by me, her daddy, the daycare provider, the ABA team and finally her specialist. This took years, a lot of sweat and tears,( on my part, mostly due to frustration).

The kicker was Tiger could use the potty early on.  She would demonstrate all the steps with her dolly or act them out herself, but when it came time to actually go, Tigerlily would withhold.
Tiger has an inhuman ability to hold it in.  From the time she was just weeks old, she could and did hold her bladder. Whenever I went to pick her up from her rest, she was dry, she would pee on the way to the change table. Totally awesome right!
Do a number two, GROSS ALERT, Tiger would wait until she went BOOM! Every four or five days as an infant, she would explode. I started just cutting off the onesies.

Wet the bed at night, Not my girl, to this day Tiger has only wet the bed once and only because she was so completely exhausted, she slept 12 hours IN A ROW!!! Coincidently this was during the specialist training session.

First off potty training was initiated by Tiger, not us. Once she indicated wanting to use a potty, we went for it. At first it looked like everything was going to be super easy and then she did a 180 and refused. She was young, so we let it go. A few months later she started again, this time I jumped on the chart wagon, again she pulled away and refused.
Next time around it was the song and dance, she was having none of it.
Then rewards, what a mistake that was. She upped the ante right away. Not going to go for less than a full sheet of stickers, a new toy, 10 marshmallows not one etc. The kid likes to negotiate.

With ABA we took the diapers away and went to pull ups with sensation technology and a schedule. She really liked the pull ups that looked like underwear, but she would not go on the potty and started hiding, when she needed to go. This was a conscious decision on her part. She did not like the toilet. We tried scheduling the potty, taking her there as soon as she woke up, before every meal and after, before we went outside etc.  She would go at daycare with the other kids but not at home.
At home she would hold it, until she had an accident.

At this point we were frustrated. It was confirmed by the pros that Tiger fully understood, knew when and how to use the toilet, but was refusing. The next time we saw the specialist we lamented our inability to potty train, the failure with various techniques etc.

She said, if rewards and positive reinforcement were not doing the trick we needed to motivate her another way, take things away she said.

So we punishment potty trained.  Yup you read that right, but before you get your knickers in a twist, please revisit the facts.
Tiger was aware of when she needed to use the washroom.
She could use the toilet unassisted
She would use the washroom on her terms sporadically &
This was 2 years in and every effort had been made by us and others to gain cooperation without using negative consequences.

We kept up the ABA potty schedule, giving Tiger lots of opportunities and reminding her to go etc. We talked about what was happening, and what was expected, for a few days ahead of time. I let her pick out some cute big girl underwear. Then we took away the pull ups and waited. The first time she wet herself, we were outside. I informed her that we now had to go inside, I threw out her underwear and pants she was wearing and gave her a wash down, and told her that because she had chosen to wet herself instead of using the potty we were staying indoors for the rest of the day. To say she was displeased is an understatement. When she hid and messed in the playroom, I shut the doors for the day telling her she couldn't go back in, until it was cleaned, again I threw away the dirty clothes in front of her. When she peed in the kitchen, same deal. I dressed her in her preferred outfits and when she messed them, I tossed them. After a few days she started to use the potty. She would still hold it as long as possible, but we were getting somewhere. In 10 days she was good to go, because it wasn't worth losing her playtime, outfits etc.  It wasn't fun, there was lots of screaming and tantrums over not being allowed out, losing her clothes & the things she got mess on etc. We had to stay home the 10 days.
But it worked.... mostly. You see she still doesn't like to use the toilet and will hold her bladder and bowels much longer than I can. She still always insists, she doesn't need to go, but she is potty trained.

I will always be conflicted about this win, for it was a pretty tough stance we took. I wouldn't have gone this way, if it wasn't suggested and I don't recommend it. I feel like this cost us too much and maybe I should have just waited it out, maybe she would have done it on her own eventually.... or maybe we'd still be in pull ups now.


The High Functioning Life, where sometimes, winning feels like losing.


HFL Mama