Safe Zone.

“I don’t know why I do this.” He whispered to me through his tears.

My heart ached for him.

He had just spoken to me like I was the worst of the worst. He swore, he dis honed me, he called me mean, a monster, “stupid fucking mama!”. He said he hated me.

My heart sunk, but I held on to him, loving him harder.

My heart sunk, but I looked at him with soft eyes and understanding.

My heart sunk, and I sat there wondering if this was really making him hate me.

I walked away for a minute, respecting his wish for me to not touch him, not look at him. As he sat at the table writhing in anger I waited. Waited for him to take a breath. And when I saw it from the corner of my eye I asked him gently if he wanted a hug. “Yes” he sobbed, then he collapsed into my arms and whispered “I don’t know why I do this”. I held him tighter and said that it was ok. That I *did* know why he did this, and it was ok. He was allowed to be angry, to be furious. I told him that I understood he didn’t really hate me.

“I hate diabetes” he said.

“Me too” I responded.

I have since started saying “you don’t hate me, you are angry with me.” And, “you hate diabetes and getting needles, not me”. He will often immediately agree, he’s a reasonable guy that way. In fact the other day he replied with: “I do hate it. I wish it was gone from me. Not given to you, or to Pups, or to dad, or Tig or Bean…just gone from me.”

I get it baby.

This whole experience has been surreal. Every time I change a lancet in his “finger poker” or start prepping the insulin pens I think: “No, this can’t be real. How can Bear have Diabetes? This wasn’t supposed to be his story.” When he started having nightmares right after being diagnosed about dying when he was six years old I couldn’t help but fear the future. Sure, it was just a dream, I knew that deep down and that is exactly what I told him – but my lungs were tight and my hands clenched tight for many weeks until I could convince myself of the same thing. I’m still scared, to be honest.

He caught strep and the diabetes reacted. His blood sugars jumped up to extremely high levels. We had to “correct” his doses of insulin by giving him extra shots during the day and night. We had to check his blood sugar levels every two hours. Five days of this till his levels finally dropped. Our first illness + diabetes. We made it through.

Last night, when he dropped to a dangerously low blood sugar level (twice) and would not wake up at first and then, once awake, refused to drink the cup of juice we had for him – we were struck with the realization that we might be forced to give him a shot of Glucagon (a fast acting sugar kind of like an epipen’s fast acting adrenalin dose). We were scared. Thoughts of coma and death rushed by my mind through my instinct as a parent to get this kid to drink some damn juice. This disease was becoming ever more evident, more prominent, more real. Now it was taking over our nights, not just our days. I couldn’t sleep anymore, not when I knew I was getting up at 3am or 4am to check on him.

He finally took the juice, and as vehemently as he had refused it – he now drank it. He turned his back to me saying that he hated me and would never look at me again and then he drank. And with gusto as if he had been without water for days while trudging through the Sahara, he drank. He drank like a hungry newborn nursing after hours without its mother, ingesting the liquid like he might never drink again. I took a breath, satisfied that he was giving himself what he needed, finally.

Through the massive gulps and swallows he sobbed.

My heart broke for him.

As his body shook with weeping I quietly reminded him it was ok, that I loved him, that he would feel better now. He ran into my arms and wept some more.

My skin, like a Rhinoceros, is thickening, toughening. I am getting through more and more of these moments. And as the doctor so eloquently put when we first met him a couple of months ago “you will get used it. It will all become a new normal.” Fuck him, he was right.

I hate this normal.

Now it looks like Bear might have conjunctivitis accompanied by stuffed up sinuses and a cough. With Diabetes, it is dangerous when he gets sick. His body’s immune system has been compromised by the diabetes, he doesn’t just ‘have a cold’ anymore, his blood sugar levels rise unexpectedly to dangerous and potentially life threatening highs. We are on high alert, we watch, we listen. We are getting wise to this disease. Noticing when his little body is shaky, even when he doesn’t, even when he can’t – even in his sleep. We are noticing the extra giddiness when he is high and the moodiness when he is low. Illness, blood sugar levels…we cannot dismiss these things anymore. There is no safe zone but the safe zone.

We work our hardest to stay at a blood sugar level of between 6 and 12. We push for 8. It isn’t easy to figure this all out. We have no choice, we must try. If we can, we must succeed.

I am sleeping with him tonight. He is snoring horribly through his stuffed sinuses. He kicks, he grinds his teeth, he steals the blankets. I won’t sleep well. But if he starts to shake, I’ll notice. If he goes pee more than once, I’ll notice. There is no safe zone but the safe zone.

We must stay in the safe zone.

And if he wakes up from a nightmare, I’ll be there. Right there. No matter what he says to me, because for him – I am the safe zone. And I will stay the safe zone no matter what, that much I can ensure.

That much I will succeed in as long as I can, as long as he’ll let me.

Asperger’s, but not Asperger’s

I’m not sure why I’ve been avoiding writing this post. Maybe “avoiding” isn’t the right word, maybe I’ve just been swishing it around my mind, seeing if I understand what I am about to tell you. Thinking about how to tell you so that you understand. I suppose the other thing would be that I’m not sure you will believe me, or that you will think that I’ve concocted it from bits and pieces that otherwise could be left well enough alone.

It’s hard to convince others when they see a completely different reality from the reality that you live behind closed doors. It’s hard to have to convince others when it is the only way to gain resources or understanding by having others know it.

I guess the only thing left now is to tell you about “it”. After all, a blog – this blog – is supposed to be a safe place for me to tell these sorts of things, these truths about myself and my family. Not only to help educate others or learn with them, but for those that can simply relate and for those that do not doubt. > And even, I should add, for those that don’t agree and would want to prove me wrong. After all, this is a public forum. We can’t all agree, but we *can* all learn from each other, one way or another.

So. Here goes….

I wasn’t wrong. And what’s more, I was right.

I was right that Bear has ASD. And no, I’m not going to say “I told you so!” (Except that I just did).

Yup, Bear was recently diagnosed with Atypical Autism, specifically “PDD-NOS“. Pervasive Developmental Disorder, Not Otherwise Specified to be precise. Often referred to as “High Functioning Autism”.

Which means, obviously, that I was correct when I was sure that he too was on the spectrum. Not unheard of or unusual as 75% of siblings to a child with ASD often have ASD themselves. What is quite strange to me about all this, however, is that I have yet to figure out how I really feel about it. It was described to me in an email by the one of the Dr’s that diagnosed him (after I questioned the diagnosis and asked if it was perhaps something else, something by the name of PDA, Pathological Demand Avoidance Syndrome) that he essentially has Asperger’s.

“In regards to your email with the questions about PDA. To be honest, I’ve never actually heard of this syndrome before, but it was interesting to read about. It sounds like they are describing a subset of children on the autism spectrum who share similar characteristics. Whether or not it warrants its own category I’m not sure. As you know, autism is a syndrome, which means that different people can have very different presentations although they share similar core difficulties. It likely has numerous different causes that, along with personality factors and other conditions (e.g. ADHD, anxiety disorders, other neurological issues), make the symptoms look different in different people, including in the way described in these articles. I think that for Bear, it would be most helpful to think of him as having Asperger’s Syndrome, because that would be closest to how his symptoms present. He would also be managed in a way that’s similar to children with Asperger’s. Until the time when we have a test (genetic, brain imaging, etc) to define exactly what is going on in the brains of people with autism, we have to treat based on symptoms since clinical diagnoses are never exact.”

It was explained to me that due to his apparent social skills he can’t rightfully be given that specific ‘Asperger’s’ diagnosis. Even though they felt he fit the label.

In other words he doesn’t fit the DSM’s criteria of Autism, therefore he has been put under a catch-all umbrella term that they use for children whom they know have Autism but who do not have the famous Psychology Bible’s version of Autism. What a strange position it must be to be in as a psychiatrist/psychologist today to have to rely so heavily on a book definition of a child it has never met nor seen. After all, it’s a book. Of course there has to be a basis for diagnosing syndromes and mental illness, but why can’t that just be a foundation – a template to look back on if in doubt? Not the be all and end all of what is and what isn’t.

It must be trying for these professionals of the human mind to see things they know to be true, to have been trained to see these things outside the box, to look beyond the physical and into our thoughts and our fears and to make a decision about what it all means in relation to normal vs abnormal behaviours. To study and attempt understanding and analysis over the ever changing, growing, and complicated human mind. So as to, in the end (or is it the beginning?) diagnose the patient correctly, appropriately. Diagnose them as accurately as possible in order to offer an explanation, an understanding, a relief. Even though uncovering the truth, the real truth, might not add up to a book’s definition of what they are seeing in their patient. To be constantly limited in their professional opinions, even with interpersonal connections – face to face interactions – with their patients, by the printed words of what can essentially be called a psychology dictionary.

The book isn’t all wrong though, even if it is currently undergoing some drama in that the NIM was apparently going to drop out of supporting it. The DSM has given us at the very least a criteria on which to fall back on when determining whether someone is actually autistic. What we know for sure about the commonalities between all of the Autism spectrum disorders (conditions) is this, every one has – in one way or another:

Social and communication difficulties/deficits (impairments).

Sensory issues – hypo or hyper sensitive (or both).

Autism is related to specific brain activity. People with Autism use their brains differently.

Family members are also, more often than not, on the spectrum. It’s Genetic.

Emotion/behavioural control issues – again, hypo or hyper, or both

Often the individual will have an odd gait and/or fine and/or gross motor skills (Dispraxia)

The list of commonalities is vague at best. Especially in the category of social and communication impairments.

When I picture a person on the spectrum with social skill problems/challenges, I think of someone unable to speak to others, or who segregates themselves away from others. I do not think of a little kid who stares at others, or smiles when you tell them your grandmother just died. I don’t even think of a child who interrupts you comforting another child to talk about Superheroes. It’s important to note that the term ‘Social & Communication Disorder’ is as broad as the ASD spectrum, realizing that, I can see that Bear actually does have social skill issues, though not obvious to the individual who doesn’t know him well, or isn’t watching him closely enough.

The DSM does a pretty loose job of describing exactly what they mean by the criteria they use. And if you are like me, “odd gait” or “odd posture” won’t mean much to you since you won’t really understand what they mean – therefore you will not count those symptoms towards the list of symptoms needed. Nor will you tell them to the Dr. (Luckily I do now understand their meanings).

I’m not saying it’s wrong or bad to have the DSM, or that having a criteria to follow isn’t useful or even necessary. What I’m saying is that Autism, as they all know by now (but aren’t allowing themselves to admit) is a much more sophisticated condition then was ever thought before. It’s coming in many various different forms and therefore is much more complex then was originally thought and in serious need of a look over or at least of a less vague and certainly more thorough analysis for diagnosis.

This is especially true when the ASD in question is combined with co morbid diagnoses such as ADHD (which they suspect he has but can’t diagnose as yet since his T1D still screws with his energy levels) and being gifted, which they also highly suspect of him (but can’t officially test until he’s 6 years old). In fact, his being gifted may be playing a huge role in his ability (whether consciously or subconsciously) to camouflage his ASD. His incredible ability to memorize anything (that he wants to memorize) and to carefully observe the behaviours and interactions of people around him or on t.v. (and movies) coupled with his amazing mimicking ability have allowed him the ‘invisibility cloak’ of going unnoticed for so long. At times he seems almost too “normal” at times, too “on”. Playing everything just right. Answering questions the exact right way. Smiling at the exact right time. Laughing on cue at a joke or sarcasm (of which, incidentally, he admitted that he didn’t actually “get it” but that he knew enough to laugh).

Mr. Cool. Mr. Charming.

But his nickname wasn’t always that. It used to be Mr. Serious. And Mr. Serious never smiled at strangers or even close friends unless he had known them a long while (sometimes not even then). Mr. Serious didn’t speak legibly, nor did he speak much at all till he was well into his 2nd year. Mr. Serious didn’t wave or point. He did things mostly on his own when he wasn’t attached to me (nursing) or putting anything and everything in his mouth. He hated loud noises, even drumming in close proximity – and this was a kid that was musical, above all else he was musical. He could recall tunes exactly and sing to the beat of a song before he could speak. How wild, we thought! How cute! And he loved drumming, drumming in particular, yet he could not stand certain octaves of any sort of sound. Even those he loved best. He was introverted, or at least that’s what we called it. You know, he “was just shy”. He would go to the park and ignore most of the children, preferring instead to run around and around the park with the same Tonka truck, over and over again till it was time to go home. Yes, he was a strange and neat little guy. We were bemused by him and his funny ways. Now, when I think back to all of it. The this and the that of his eccentricities, perhaps most intense his aversion to any sort of transition, I realize that if we had thought to be at all concerned or curious as to whether these traits were more then just “quirky” he would very likely have been diagnosed with ASD as early as 2 years old, maybe even earlier.

But Hell, we just rode through it. He was loving, affectionate, sweet. Not our impression of a child with autism. And then he turned three, and everything changed. He began to impersonate Superheroes and spend the day in costume responding solely to being called by his Superhero name. He would sing the theme song from whatever Superhero he was being as he descended the stairs, so as to emerge from the stair case as if from a grand entrance (or perhaps just as the characters on TV might appear in action after their theme song had played through the opening credits). Actually he always sang, even after he began speaking, he could always be heard singing as he walked in line at daycare or rode in the back of the car. Well, either singing or repeating every word the radio announcer said. But, he had started speaking! In fact he was talking all the time about all the things he loved and we could understand him! I mean all the time. It was hard to get a word in edge wise and it often felt as if I didn’t really need to be there except to nod and say “uh huh” every once and a while. And we were playing together which was really awesome since he mostly played alone as a baby and toddler. Sure we were mostly going over scenes from shows or parts of books, but not always. Not only that but, although he still wasn’t initiating conversations with children he didn’t know (like at a park or party) he was responding to them if they initiated conversations with him (most of the time anyway). More than that – he was a charmer with *my* friends, my grown-up friends (does that imply I had kid friends too?). He seemed to speak to adults he liked with ease and charm. In fact, he was often a fan favourite for my friends for this very reason.

Like I said, here was an affectionate, social little boy who looked you in the eye, if he looked and had friends and an obvious imagination – I mean, he was pretending to be Superheroes after all. If that’s not an imagination, I don’t know what is.

Except…

He was VERY affectionate, more then affectionate he was tactile. He needed to touch things, people. He needed to eat with his hands and stuff his mouth with food. He needed to put everything in his mouth! And he was social, but mostly only if prompted. And certainly not with any adults he didn’t know, or know well. With them he was often mute when asked a question. And he stared…even at children. Observing I suppose, but it did leave people feeling a bit uncomfortable at times. He played, but he played out scenes from a movie. Characters were never original, never invented by him (not like Bean could easily do). No, his characters were always from shows or stories or movies he liked, and when we played we recited specific scenes. Which, to be completely honest, I found more impressive then curious. I mean, he had these scenes down.

But then, if you weren’t looking for it, all you saw was a handsome, mostly quiet, charming little boy. I’ll say it again, a boy who gave great eye contact. A boy who loved to talk about Superheroes and animals. And all of that did not look like autism, not to us and not to anyone else either for that matter. Certainly not to the first Neurologist who met with him, Dr. Greek. She did admit that he did have some features, but not enough. Not enough for a diagnosis from Dr. Greek but she wasn’t a psychiatrist, and luckily Bean’s Dr. (Dr. Awesome) who recently met with him, saw that his social skills were much more a survival technique for the real world then a extroverted little boy who just liked people. They saw his autism, his PDD-NOS/Atypical Autism/High Functioning Autism (whatever you wanna call it). Unfortunately that specific label doesn’t lend as well to getting resources as any of the more “official” diagnoses do (as in AS).

When I took Bear in it was just to clarify and confirm the ‘Dispraxia’ diagnosis and perhaps even confirm it without us having to search out an OT (Occupational Therapist). Turns out we can’t, we do need to see an OT for a proper diagnosis in that specific area as it is diagnosed based on severity, not just criteria. They, of course, did recognize the motor praxis and sensory dysfunction disorder, and this led them to search further.

When they told me Bear has PDD-NOS my jaw hit the ground.

I really thought they were just going to confirm what Dr’s before them had said about Bear – no autism in that boy. But PDD-NOS recognizes that Bear is on the spectrum, even if the diagnosis itself isn’t one that demands as much recognition within general society as ‘Classic Autism’ or even ‘Asperger’s’.

For the moment now we can at least breath a little easier knowing that we weren’t totally off our rockers and that we can start looking into groups and workshops to help us gain the right tools to help Bear succeed – and maybe stop yelling the same thing, repetitively, over and over again (yes, I’m aware I am redundant).

His autism has been officially recognized. Yes, he is in fact a high functioning autistic individual.

Not unlike his mum.

Best Kid Apps Yet! (or, you know, the ones that we love).

As per my last post Bean has been having great success with improving her educational skills via the use of our iPad. And as per my last post (in the comments) I promised to give you a list of our favourites.

I’ll throw in here that not all the apps we love are related to education like writing and math, some of our faves are actually not apps at all, they are ebooks – book apps.

So, here by popular demand (or at least by a handful of three people) are the apps we like most:

In the effort to save time and a lot of boring writing, I bring you this Diptic.

“Kind AND creative!” you say. Why yes, yes I am.

I will however name a few of our faves.

‘Spelling Star’ because we can create our own spelling lists (that we receive from school) for Bean to practice on.

‘Vocabulary Spelling City’ because it has spelling test for many different grades, which is great for Bean and Bear.

‘Word Thief’ is a fun game that incorporates word searches and word decoding on a time limit but gives the excitement of completing the task to keep the burglar from escaping and the reward of winning.

‘Word Domino’ is a fun way to test your brain by figuring out what words are made up from the letter box choices. It can also be switched to a few different languages (bonus for me as I try to teach my kids French whenever possible).

‘Emotionary’ is a really cool app – especially for someone with ASD as you are prompted to choose an emotion you had that day and then describe why you felt it.

‘The McGraw Hill’ apps are just plain cool. Educational games that keep learning fun and can also be used for players of different ages and/or grade levels.

‘Kidblog’ is neat because it can be connected online to your child’s class/teacher and the student and teacher can access the same information. A plus when you are working on proving that apps can be used between home and school.

In the music department I would have to say that I myself (yes, I admit it) am addicted to:

‘Rhythm Cat Pro’ – a game that tests your ability to follow along correctly to the beat of a song

And

‘Sound Brush’ a fantastic meld of art and melody that can be recorded and saved to show off to your friends and relatives.

On the up and up is a little app called:

‘Play Piano Free’ that teaches notes and simple songs for beginners.

When it comes to learning + fun = a win/win, my vote is for the following apps:

‘BrainPOP’ and ‘BrainPOP Jr.’ – seriously folks, these are *free* and AWESOME! Just try it out and tell me you aren’t hooked. I dare ya.

I’m also partial to:

‘Brain Quest’ yet another apps that can be used by people of different ages/grades, not to mention it’s a super fun game!

‘DIY nano’ is an app that incorporates (or that’s the idea) the ipad + real life. It offers up a whole bunch of cool experiences to try and shows cool videos about science to boot.

‘FSO’ (also known as ‘Finding Stuff Out’) is limited in its games, but while it’s still new to you it’s games offer a fun way to learn about things like recycling, teeth, plants…and more.

If you don’t know yet about ‘Sound Uncovered’ & ‘Color Uncovered‘ – check them out. These apps are truly a new and unexpected way to learn about colour and sound while keeping it interesting with interactive activities along the way.

When facing the dreaded Math Monster (you know what I’m talking about here), I am always thankful for these particular apps:

‘Math Kid’ – not fancy, or even “fun” per say, but a fast moving and easy to use app that helps improve math skills as well as offer rewards once a task has been completed.

‘Montessori Numbers’ is pretty new to us still, it’s more for the younger age group. It seems to be a good app for learning numbers and basic math skills, and because it advances with your child you are able to see how far they’ve progressed.

‘Native Numbers’ is an absolute favourite for Bear. It works on a memory based game while also teaching size concepts in relation to the amount of numbers and has a reward system that, once completed, unlocks the next level.

‘Adam Dream’ is for when you want your kid to do math, and they want to play a side scrolling video game. Win – win.

Finally, when it comes to reading comprehension/ book reviews, I have a trillion useful apps. But the one that is THE best in my personal opinion is by far (notice I didn’t use “IMPO” right there – why? Because I kind of hate that crap, just sayin’): ‘Write About This‘

Another awesome app that helps Bean to spell and get creative with thinking of words is the ever popular kids version of scrabble is ‘Word Chums‘ – Bean honestly enjoys this game so much I don’t think she has any idea she’s actually learning at the same time!

When it comes specifically to the Bear apps I’m fond of we’ve got:

‘Sentence Magic’

‘Sequences’

‘Left or Right’ (great way to learn your L from your R, and totally fast paced and fun).

Pretty much anything free and within Bear’s learning curve from ‘Abitalk’ and ‘Grasshopper‘ apps

Another fantastic app, this one for learning your letters and how to write them in upper and lower case is:

‘ABC’ by Sniff

And

‘Hideout’ – which might be the most fun app ever next to these crazy awesome apps:

‘Endless ABC’ and ‘Singing ABC’ (try not to love them, I triple dog dare you).

Even Tig unknowingly gets in on the learning action.

Most of the apps I’ve mentioned are or were free when I got them. I try very hard to avoid paying for apps. I’m cheap, what can I say? My source for free and educational apps is (and the giant shout out goes to…) smartappsforkids.

Get on their emailing list for daily updates on free apps – you won’t regret it if you are an app junkie like me.

Some ebooks we’ve come to love include:

And finally there is the interactive book/app/nice story:

‘My Healthy Tale’ about a little boy Bear (really, I’m not kidding) who has Type 1 Diabetes and who deals with two different scenarios. A birthday party/sleepover and going to school.

Now. With all this said. I want to point out that I only allow 20 minutes of free ipad/PC time a day. It comes with a price for Bean and Bear as they must first do 20 to 30 minutes of work (whether on the ipad, or in a journal, or, wait for it… with a text book and a piece of paper and a pencil – I know, shocking!). Other then that they are doing chores or playing in theirs rooms, or destroying the living room, or running wildly beneath my feet or playing outside or screeching like banshees or…wait…nope, that’s pretty much it.

I’ll be honest in saying we love the ipad in our house. It calms the savage little beasties (yes I called them that) when I need a time out myself. It teaches them in ways that they like and even love. And it’s neat – really, really, neat. Even for me. But the ipad should never take away from us exploring a trail in High Park or observing a fantastic looking bug. Or reading a book…with pages, paper pages, outside in the shade of a big old tree. So as much as we love it, it is moderated in our household to avoid us becoming screenheads. If you are wondering, I totally just made up the term ‘screenheads’, I am copywriting as I type…

So anyway, as someone wise once said, and I’m not totally sure who but I’m going to guess Oscar Wilde (mostly because I like his name):

“Everything in moderation, including moderation”.
Which is a smart rule to follow in life and one I work hard at teaching to my children.

Except about laughter and fun, you can never get enough of that. Like penis jokes at the breakfast table. Well actually I could do with less of that.

Or original art made in a coffee shop.

And hey, getting a ride on your sister’s most beloved scooter, you can’t be moderating that action. Grab that whenever you can!

Or seeing the face your kid makes while waiting for blood to be drawn. That never gets old! Seriously, look at her face! Hah!

Or hugs from little guys on a tough day, that never gets old either…or a dandelion bouquet. Come on! Who could ever get enough of that!? (Ok…maybe someone with severe pollen allergies, but let’s not count them).

So…the point is, apps are good – but life is better. For suggestions on what apps we love, you got it. For suggestions on what to do instead of apps, look outside and look within.

Happy Apping. Yup, made that term up to. I’m a frigging genius!

Probably.

High Functioning Autism: The Curse Of The Double Edged Sword

In my absence from blogging I’ve been dealing. Dealing with Diabetes. Dealing with Autism. Dealing…or perhaps not dealing so well. But at the very least – trying.

Bean’s meltdowns the last while have been unpredictable and intense, her defiance even worse. She’s stressed as we are all stressed. She is aggressive, impatient, and angry. She’s scared and confused and hurt. If it isn’t enough that our lives have been turned upside down by the diabetes, and the “gluten challenge”, we then recently found out she has (all school year) been neglected and treated without any consideration for her autism or ADHD by her teacher. That two of her friends, her two “only” friends at school, pick on her. That she feels different and the explanation of Asperger’s isn’t quite cutting it. She needs more than just a name, she needs an understanding and her own way to deal.

To add to her feelings of exclusion over the course of the school year Bean has, several times, been left out without any care or consideration for her feelings, because her teacher (I’ll refer to her as ‘Mrs. Twit’) has given everybody candy in the classroom, or hot chocolate, but nothing to her because of her food intolerances. This would be great if it were a matter of Bean not being able to eat anything good ever. But Bean can eat substitutes for the treats her class mates are having and I have stated and stressed on numerous occasions that if I’m informed of the class treat I will bring in a suitable replacement for Bean so she can partake.

I spoke with Bean’s principle about this, and apparently it was dealt with. Awesome, it only took 6 months or so. But not totally surprising in this particular school system as it took an outsider who was assessing Bear to see that Bean herself has Dispraxia – this after a year with an OT given to us through the school.

Didn’t catch the Dispraxia there, eh OT? Even after you were told about the AS!

Sigh.

Then I had the challenge of trying to get Mrs. Twit to communicate with me via agenda about Bean’s studies (or lack there of). Nothing. No matter how many times I requested communication between Mrs. Twit and I, I received nothing in return. What was she learning? Was she learning anything at all? I realized the most education she was getting was through the educational apps that I had on our ipad. More then that, I saw that she liked learning on the ipad. A huge feat since getting her to do any homework was like pulling teeth. So we spoke with the VP about us (the hub and I) investing in an iPad mini for her to bring to school in order to improve her marks. I explained that she works amazingly on ipads and computers (as most kids with Asperger’s do) and that I was sure that if she could work on an ipad in class we would see a huge change in regards to her love of school and most definitely in her grades.

I was met with “well I don’t know how that will work – after all, we have to follow the curriculum and iPad’s only have games on them, not work sheets…”. Yes. That’s exactly why it will work for Bean, I thought, because they are math and spelling “games”. I asked if they don’t agree then with using iPads in this school – “Oh no!” she said “we love the use of ipads for our students” and then, and you’ll love this part, she added: “but Bean…well you know, she isn’t really what I would call “autistic”, I know you say she is, I mean, I know she is, but ipads are for children with severe autism. I mean like non-verbal autism.” “You mean ‘classic autism’?” I asked. “YES!” she responded, as if I had just saved her from digging herself further in. “For those who ‘really’ need it.”

Uh huh, right… Let’s go over the list of reasons my kid needs it, shall we?

1. My child is not able to learn any of the material without accommodation. Which means that she sits up in the front of the class with the teacher like a blaring bright lightbulb to the other kids while her peers learn independently at their own desks. It also means that the teacher is preoccupied with Bean, which only adds to the spotlight on Bean.
2. She hardly speaks up in class at all, if only to tell others not to touch her carefully organized stuff on her desk.
3. They have to give her warnings and extra time before each transition, often she is needs to sit out if she needs to take a moment.
4. She writes at a grade one level, missing words and misspelling even the simplest words (though she reads at a grade 5 level). Which is a tad suspicious since she is apparently getting a whole lot of one on one time with the teacher. What could they be working on?
5. She cannot put thought to paper when asked to complete an assignment. Her reading comprehension is never apparent because she lacks the capability to translate thoughts to writing.
6. She has literally not done any homework for over 8 weeks.
7. I have no idea what she’s learning in class because no matter how many times I request an agenda to be sent between home and school to keep me up to date, the teacher does not follow through. And every time I get there to schedule a meeting with her she is busy. (She’s also kind of an idiot).

So, here is my daughter, D-streaming grade three. It is obvious she is very much at a grade one level in writing, reading comprehension and math and in desperate need of new or better resources to correct this. Yet they are pushing her through. Sweeping her issues under the rug so that these LD’s will eventually be somebody else’s problem. I can only assume it is because they can. As long as she can “get by” they will continue to impose on her an immense amount of “accommodations” and one on one time without actually helping her to learn how to learn and how to take that knowledge to improve and succeed in her future endeavours. All this, but that doesn’t qualify a need for her to perhaps be considered a better method to help her learn? An ipad that would most certainly advance her learning and her grade level.

Is it because it would seem unfair to the other students? Do I give a shit?

I couldn’t be bothered to go over proving how Bean is autistic, partly because I am so sick and tired of the ignorance I am spewed every day by people like this VP who put Bean into a slot of: not problematic towards the school and classroom, therefore not in real need of help or care. But also because there is no one part of Bean that *is* autistic. I can’t divvy her up into “normal parts” and “autistic parts”.

She *is* autistic.

No, she doesn’t have “Classic Autism”, that’s true. Ya got me there VP.

She has Aspergers. Or, by the new DSM V standards she has ASD level 1. And no matter how many people want to fool themselves into thinking that Asperger’s is actually not a form of autism, or that it is so mild it really doesn’t count, they will never be right. Just as Classic Autism is a “form” of autism, so is Asperger’s, so is PDD-NOS (atypical autism). Call it what you want, believe what you want – it is what it is, and that is autism. I invite anyone to come to our home during a meltdown of epic proportions and explain to me how “typical” it is for every child to act that way. To explain to me why offering her a piece of gum is the only thing that could calm her down this morning when she was shutting us all out and repeating a sentence over and over again – because the act of chewing on something is comforting to her. I invite people, the VP, to assure me that needing to do a series of specific stretches in the morning before leaving her bed or using a specific spoon, or not being able to eat if someone touched her fork first or served her food directly onto her plate is “totally normal, average, eight year old behaviours”.

But I shouldn’t have to prove her ASD to anyone, certainly not the school. They have her diagnosis in hand and that should most definitely be enough for her to access the right resources.

So I complained. Not just about how Bean wasn’t even being considered for the use of an iPad, but for how many times I have requested the teacher simply communicate with me what Bean is doing in the classroom so that I could try to help her improve those skills at home. About the pile of homework sheets that have built up over the past few months on my desk that the teacher hasn’t even bothered to inquired about.

A pile!!

Is this teacher just going through the motions over there? Not actually checking to see if the kids are completing their work? Or is Bean just the lucky one whose homework doesn’t really count for anything? I wouldn’t be surprised. Without trying to sound too harsh about Bean’s teacher I’ll just say she’s a woman lacking in the capacity to think logically, to consider others, to listen to parents, and to be sensitive to special needs or to educate her students effectively. My complaints (after a really baaaaad meeting with Mrs. Twit and the VP where I left yelling “screw you” to the VP, but not before slamming my hand down on the table hard and yelling at Mrs. Twit that she is to NEVER bully my child again – oh yeah, that happened) I was invited to meet with the VP and the Superintendent to figure this all out.

I admit, the meeting with the Super and the VP was a positive one where we all agreed that this past year with Mrs. Twit has been a bust. And that Bean’s education will never be sacrificed for the idiocy of a teacher, this teacher, again. Not under my watch. Bean is now allowed the use of an iPad, and I will be sitting in on a class to make sure she is able to use it and follow the curriculum.

I read a tweet the other day that so aptly put the trials and tribulations of people on the spectrum:

“If you are high functioning they don’t see your deficits, if you are low functioning they don’t see your strengths.”

This is more than just parenting, this is a fight for her deserved rights and education. I will never walk blindly again hoping that it will all somehow work out – because it must, right? Apparently life doesn’t actually work out that way. Who knew?

I see now that I must keep my eyes open, that I am her first advocate and her strongest advocate. I will walk in front of her to show her the path and the ways. And hopefully she will become her own self-advocate. I know she will. She is strong and smart and unique. It might be tough right now, it might always be tough, but even when I pass her the torch for good and she is in complete charge of her life – I’ll be there to hold her hand when she needs it, or pass her that piece of gum when things get a bit too tough to handle.

Doing some work on the ipad – in a trunk – of course.

So Now I Make Petitions, Apparently.

Just when I thought everything was kinda, sorta, going ok…

I heard through the grapevine, (though it certainly isn’t a very secretive grapevine), that the school I switched Bear over to last month (when he was first diagnosed with T1D) will be losing the ECE that he has come to care so much about.

Not ok.

I switched my son so he could be closer to home, but I never thought we would gain what we gained when he started at his school.

The ECE in his classroom is the epitome of a professional, reliable, caring and loyal person. She is well loved by all the students and parents alike. She is one of those people that exudes support and protectiveness over all children. Yes, she is all these things, and we were lucky enough to have our son placed in her class. In fact, they told us when we first transferred him that she was the reason they were placing him in that class. Even they – the VP and teacher – advocated for this ECE as someone who takes incredible care of her students.

To Bear she is more than just a good caretaker, she is also his comfort and security when he is at school from 9am to 3:15pm. He relies on her and he adores her. And so he should.

She’s great.

In as little as a month she has become his “most favouritest” teacher. But more then that she has become *our* comfort and our security when we send him off to full day kindergarden. In a time when we struggle with almost every moment in our life, knowing he is safe and cared for as much as is possible when he is at school is more than just a blessing – it’s a Godsend.

And remember, I’m an Atheist, so that’s saying a lot.

So, knowing how valuable – no, in-valuable, she is. Knowing that if we take a stand in our community we might save a needed and incredible asset to our school and our children, I wrote a petition.

Yup. I shit you not.

I wonder if I would have fought so hard to keep her, to keep ECE’s in both classrooms if my son wasn’t a special needs kid. I hope the answer is “yes, of course”. I’de like to think that a worthwhile cause is a worthwhile cause and that I am not so trapped in my own little bubble that I would not see it. But the ugly truth is that sometimes parents, even parents like me – parents whose kids do not have specific needs for these services (ECE services) well, they don’t realize how much an ECE is doing for their kids – special needs or not. Before Bear was diagnosed I’m not sure I would have seen the worth in an ECE in the classroom. After all, my son could get along fine without one – right? Now that I have needed the care and help of an ECE, now that I have witnessed her in action, watched the children interact with her – all the children of the classroom – I know that she is an asset to all of us. Every single child in that room benefits greatly from her presence and care. If not only in the way she gives them all specialized and individual attention but in the way she supports the teacher so that the teacher can create an awesome curriculum for her students.

If those parents don’t think the loss if the ECE for each classroom affects them then they might not care enough to click the link to the petition about the loss of having one ECE per JK/SK classroom.

They might be easily convinced by the school board (or school trustee or superintendent or principle or VP of the school…) that lowering the amount of children in one class IS removing the need for an ECE in that class. Which it isn’t.

It just isn’t.

They might believe that adding more students to the other class will not hold a negative outcome because that class WILL have an ECE.

They will be wrong.

And if I thought this way, which I am willing to admit was possible just last January, I would be wrong.

What I hope to accomplish with this petition is to reach those parents and to explain to them that their children, even without special needs, are deserving of a proper education. They are deserving of equal and adequate classroom attention that can only be gained by reasonably sized classrooms and the proper amount of teaching and support staff per classroom.

If a teacher (let’s say the one with less students) has to create a curriculum and be aware of special needs kids as well and their specific needs within those individual special needs (this includes sitting with my son while he eats to insure he eats his entire meal if possible) and to give the other students who are not SN (special needs) but still require adequate attention, attention – you will absolutely have at least one of those areas lacking in proper execution and care. I guarantee it.

So I sat at my computer today and I wrote this (below). I wrote it for my son and for myself. I wrote it for your children and for the future of the community, of this school. I wrote it because standing up for things like this needs to be done so that, as a community, we are taken seriously and not ripped of our deserved and required needs for our children.

Here, for your eyes only…well no, not for your eyes only – come on! It’s a petition!

 

Hello, my name is Caitlin,

My son has just started at Essex from a school further away from our home. I switched him to Essex Public school because he was diagnosed with Type 1 Diabetes in late February 2013. My daughter goes to Essex as well so I am not new to this school and I know and love this community very much. I trust in this community to teach, guide and keep my children safe while they grow and learn.

My son is in JK and he has the added benefit of an Early Childhood Educator (ECE) as a valuable asset to the classroom and the school. Without her I’m not so sure I would feel comfortable sending him to school this early in his diabetes diagnosis. She helps him to remember to eat his designated meals at the right times and reminds him when he needs to check his blood sugar, she supervises him when he checks his blood and logs the information in his blood sugar level log book so we can stay up to date with his levels (a very important part of managing Type 1 Diabetes).

I know my son is in safe hands when he goes to school. It is that extra set of hands that cares for and knows all of our children so well (and who works so hard to make sure they are safe and well taken care of) that allows his classroom teacher the time and energy to set up a fantastic curriculum program in which my son, in JK, is already learning how to read!

That’s pretty awesome if you ask me!

They make a great team, but more then that, as a team they have ensured the best possible learning environment for our kids.

I have recently learned that next year some changes will be implemented concerning the ECE’s in the kindergarden classes at Essex. The changes include taking one of the kindergarden classes and decreasing the number of students in it to 15 students, and therefore increasing the other class’s student numbers to 25/30 students. The idea is to lower the school’s cost by removing the need for an ECE in one of the classrooms.

I find this hard to believe and quite shocking to be honest. In my son’s class alone there is a child with Down Syndrome, a child with Autism and my son who has Type 1 Diabetes. Those are only the children I know of – it would be naive to think that the other JK/SK class has no special needs students, or that my son’s class doesn’t have more children who may also require some additional care.

Here is the problem with calling ECE’s in both JK/SK classes a “surplus” and attempting to cut costs by shifting the balance of classroom sizes and ECE workers per classroom:

Firstly it should be noted that on the Ontario Ministry of Education website it states that the JK/SK classrooms are equipped with ECE’s to help educate and care for our children:

“Who is working in the classroom?

Teacher and Early Childhood Educator team throughout the day
Teachers and early childhood educators (ECEs) are working together to help young students learn during the regular school day. These educators have complementary skills that create a learning environment to support the unique needs of each child. With two qualified professionals in the classroom for the full school day, there is more time for individual and small group instruction.

At schools that offer the integrated before- and after-school program, two ECEs work in the full-day kindergarten classroom. For example, one may run the before-school program and work in the classroom with the teacher during the morning and the second may arrive around lunchtime and work with the teacher in the afternoon and run the after-school program.

At schools that don’t offer the before- and after-school program, a single ECE works alongside the teacher during the regular school day (for example, from 9 a.m. to 3:30 p.m.).”

> Furthermore it goes on to provide reasons why ECE workers are so important:

“Complementary skills

Teachers and ECEs work together to implement the program and maintain a safe and healthy learning environment.

Early childhood educators have knowledge of early childhood development, observation and assessment. They bring a focus on age-appropriate program planning that promotes each child’s physical, cognitive, language, emotional, social and creative development and well-being.

Teachers have a knowledge of the broader elementary curriculum, assessment, evaluation and reporting, and child development. They are responsible for student learning, effective instruction and evaluation and formal reporting to parents, based on the teacher-ECE team’s assessments of children’s progress.”

That alone ^ should be enough for Essex to keep our ECE’s. Not only because the Ontario Ministry of Education tells new parents that this is what they and their children deserve and are entitled to, but because the Ontario Ministry of Education tells new parents that is what they are getting when they place their children in a TDSB school.

If that’s not enough, think of it this way:

1. Young children should not be in a class of 25 to 30 students if it can be avoided as it is unrealistic to presume that they will all get the attention they need in these early years where we are putting down the foundation for their education career.

2. A class of 15 students STILL needs an ECE as we are all aware that many students fall under the special needs category and an ECE can help to make sure both the students with special needs and those without are given the right amount of attention.

3. Losing an ECE, even in a small classroom, takes away from all the students – not just those with special needs – and all the students are worth the cost of having an ECE worker in their JK/SF classrooms.

4. An ECE helps the teacher be the best teacher he/she can be. As cheesy as that may sound, it’s true. Removing added pressure from the teacher makes it possible for the teacher to create a better learning environment and programs for our children.

5. And finally, you never know when you will be put into the situation of having a special needs child yourself.

My son was diagnosed *just like that*. We never saw it coming. He now needs his blood sugar level tested at least 3 times a day while in school. My son needs an ECE who is schooled in CPR and who specializes in caring for special needs students. ECE’s can devote time the students in a way that teacher’s cannot. They are also as much of an asset to teachers as they are to parents and children. I want to know that when my child goes to school he will be cared for properly and he will be completely taken care of.

>Signs of low or high blood sugar can be easy to miss, especially in young children who are new to the disease and easily distractible. High or Low blood sugar levels can be very dangerous, an ECE can assure me that there is an extra set of eyes on my son, and particularly a set of eyes that are there specifically to look out for our children in ways the teachers can’t.

Hawthorne Alternative (the school that shares the building with Essex Public school, and that shares the Principle and the VP) has fought hard to keep their ECE staff. They fought and they won. They did it because they refuse to let their children’s education and care while at school be limited in any way. If we don’t do anything our families will suffer for it.

The squeaky wheel gets the oil.

The TDSB has decided to cut cost in secondary schools (which I am also not in favour of…) but to increase the budget in the elementary schools – why then are we losing ECE teachers?

See link:

http://toronto.ctvnews.ca/tdsb-votes-secondary-school-cuts-elementary-school-increases-1.1185561

I urge you to help me keep our ECE staff, for our teachers, but most of all for our children. They are worth it.

The ECE teacher description on the TDSB website reads:

“Many children, families and communities benefit from the work of child care workers. Early Childhood Educators support the students of the Toronto District School Board in our Full Day Kindergarten program:

Assess children’s developmental needs and stages in all developmental domains;

Design curriculum to address children’s identified needs, stages of development and interests;

Plan programs and environments for play and activities that help children make developmental progress;

Maintain healthy emotional and social learning contexts for children; and
Report to parents and supervisors on children’s developmental progress within healthy, safe, nurturing and challenging play environments.

Early childhood educators work in a variety of settings including, but not limited to:

infant, toddler and preschool (including child care and nursery school) programs; before- and after- school programs, kindergartens and primary grade classrooms;

special education and intervention programs;

Ontario Early Years Centres;

Head Start programs, family supports; home child care programs; parent/child/caregiver drop-in programs, pediatric playrooms and health care settings.”

Please, Let’s work together as a community to make sure that our children are not swept under the rug to save costs, unnecessary cuts that are more detrimental then perhaps realized. (As seen by the above link)

Paying for trained ECE’s in the classrooms is where I want my money to go to.

I have created a petition for this cause, you may check it out at:

https://www.change.org/petitions/tdsb-and-essex-public-school-do-not-get-rid-of-your-ece-workers-they-are-not-surplus

Please check out the petition link.

Thank you for your time.

Celiac, you’re breaking my heart.

I’m not sure what I’m running on these days. Is it possible to run on pure stress and get by ok?

If so, that’s me.

Add to our plate of Asperger’s, T1D we are now seriously looking into the possibility of Celiac Disease as the reason behind Bean’s GI issues.

Seriously.

It has been mentioned in a previous post that Bean is gluten and casein free. Or at least, she was until a few weeks ago. She is scheduled for a biopsy to determine if she has Celiac, so > in order to have accurate results > we must put her on a “gluten challenge“. Essentially making sure that there is damage done, “enough damage” to be able to find atrophied villi in her small intestine. It is as if, or maybe ‘exactly’, like we are starving her from nutrition in order to have a clear answer of the problem so that we no longer starve her from nutrition anymore. Say that 5 times fast.

It takes an average of 9 to 11 years to be diagnosed as someone with Celiac.

I am not kidding. That’s a real statistic.

9 to 11 years to get diagnosed.

People with Celiac are said to be diagnosed with everything under the sun but Celiac – until – after about a decade when it seems like that is the only thing left to try out. And, after about that long people with Celiac have sometimes caused so much damage to their small intestines that they are prone to a number of other diseases and ailments, including – but not limited to – osteoporosis, infertility and cancer. And, in the worst cases (cases that go undiagnosed or untreated for too long), it is possible that people can die from the other ailments/diseases that have come about from having Celiac disease. Yes, Celiac can lead to death if left untreated. Morbid, but true.

Bean has been showing symptoms, now that I know what the symptoms are, for as long as I can remember. From colic, projectile vomiting and short stature (in the lower 5th percentile) as a baby to severe constipation, dark blueish circles under her eyes, poor weight gain, enamel damage to her adult teeth and weak bones (elbow dislocated twice, and shattered once) as a child.

I’ll admit that in this time I have allowed her to have dairy again. Firstly because I’m not positive that she is actually casein intolerant, secondly – because if you are already going to suffer, you might as well be eating yummy food while you do it.

Part of the reason I am suspicious of her casein intolerance is because of the Hemocode test that she underwent. In the foods that she was tolerant of, there was the word: casein. Now I knew that since Bean had not been consuming dairy for quite a while it might have given us a false negative result since the protein was not in her system for the test to find it either tolerant or intolerant, but in the ‘Severely Intolerant’ list, there were things like ‘kamut’ and ‘rye’, of which I was pretty sure she had never consumed. There is also the controversy over whether these IgG tests are actually accurate or simply a sham. At that point in our life, with everything we had been through with Bean,, in as far as GI issues were concerned, we felt we had to take the $420.00 chance that it wasn’t a sham and that it might unveil some answers..

If Bean does prove to be Celiac, and dairy doesn’t affect her negatively, I will no longer wonder if i wasted $420 that day. But I will wish I had known more about celiac then so that I might have taken those results to mean more then just ‘intolerance’ (which, to be honest, at the time I felt wasn’t *that* serious an issue, whether true or not).

With all that said, it wasn’t till we were sitting in the emergency department with Bear the night he was diagnosed with T1D and they asked me almost immediately if any of our other children had celiac that I had given it much other thought. And in fact, to be completely honest, it wasn’t till their next question “…or any other autoimmune disease?” that I started to connect the dots. Yes, Pups has Guttate Psoriasis I said. And then, as if a light bulb went on above my head like some cartoon character: “and actually Bean is highly suspected of Celiac, but she’s had blood taken and the results were negative, even with all the other symptoms present”. Oh, said the doctor as she jotted it down on her piece of paper. And then: “we will have Bear tested for celiac since her has T1D. The two are highly correlated. It doesn’t mean he has it, but we will check as a precaution.” And now it was my turn: “oh.” I responded, feeling a brief moment of both “ah hah!’ and “oh fuck” when re-thinking celiac and what it might mean to our family.

So I began to research, as I do. I found that yes, T1D and Celiac are very similar autoimmune disorders. They both carry the genetic markers HLA DQ2 and DQ8. If you have celiac, you should be tested for T1D, and the same is true if you have T1D > you should be tested for celiac. There was even some evidence to suggest that if you found out you had celiac early enough and treated it properly and immediately – you might even be able to avoid developing T1D in the future.

So here we were, knowing (by internet research ‘chance’, and not by doctor related information given) that the autoimmune disorder that Pups has (Guttate Psoriasis) can be linked to Celiac, and that Bean’s suspected Celiac Disease, or ‘CD’, (which, we were now aware of because of the Dr in emerg) is actually an autoimmune disorder, and of course that Bear’s T1D is also an autoimmune disorder and can also be linked to Celiac in many cases. There was also a suspected, but unproven, link between people with an ASD and/or ADHD and Celiac. The symptoms related with Celiac were all too evident in Bean. From her serious GI issues and positive reaction to a mostly gluten free diet right down to her AS and ADHD diagnoses. Immediately I decided that something more had to be done to see if she had Celiac Disease. Another blood test (already in the works from before Bear’s diagnosis) revealed yet another negative result. But as Bear now had T1D, and blood tests with Celiac have proven to be unreliable in the past in correlation with false negatives, Bean’s paediatrician and I decided it had to be time for a proper test, a biopsy. As mentioned, even this test would appear as a false negative if not enough gluten was present in her system to do actual damage to her villi. So on to the gluten challenge we went. And that is when we started to see things like obvious defects in her teeth enamel and dark blueish circles under her eyes. She became lethargic and moody (more than usual). She was absolutely and obviously very ill.

So…more research later, I came upon a celiac home test kit. What the!?

That seems way too easy.

Since it was proven to be as accurate as the blood tests taken in hospital (and approved by Health Canada), and seeing as Bean had now been on her gluten challenge for 4 weeks, I decided to try it out. Maybe, I hoped, it would show a positive result and I could use that result to push Bean’s biopsy date up – especially as she was already so sick because of the gluten.

I did the test.

Results used in a study to see if nurses could judge the positive tests correctly. All these test were positive, the nurses only thought the darkest result line showed a positive result.

Here was our celiac home test result (which, incidentally, was much clearer at the pharmacy when we brought it in to have it checked by a pharmacist):

Do you see what I see? (<-Why do I always add a tune to that?)

The line is SO faint, it is practically not there.

Except that it is.

The hub and I thought that what we were seeing was just the test strip’s positive line reacting to any liquid wetting it. But still, the pamphlet specifically said “no matter how faint”. Could it actually mean *this* faint!? I had to know. The pharmacist assured us that this was a positive test. Saying that absolutely NO LINE, nothing, would appear if it wasn’t detecting the celiac disease.

I am of two minds about this. Wishing that Bean won’t have Celiac (of course), while wishing that her test is positive because of knowing that she very likely does > and hoping for a final and absolute confirmation.

Celiac is another challenge to add to our plate, to be sure. An expensive, vague, and chronic disease type of challenge that will undoubtedly lead to yet more grey hairs on this overwhelmed mumma’s head. But as only a biopsy will really absolutely truly give us confirmation about whether Bean in fact does have Celiac (and only if that biopsy is positive, because a negative biopsy actually doesn’t rule out celiac! I shit you not) then we must trudge forward through this gluten challenge diet and hope that it is not all for naught. At least if positive we will have a solution, however challenging, (and possibly difficult) to Bean’s painful GI issues so that we can finally start to work towards healing her body.

Sixteen Candles.

My daughter just got the party of her life. It was grand, it was big, I’m redundant, it was awesome.

I didn’t throw it for her.

I’m not upset about this. Seriously, I’m not. She’s lucky she got anything at all! Hell, I’m not a “throw a sweet sixteen” type of mom. I’m a “get you your first tattoo” type of mom. So sue me.

First of all, let it be noted that I never got a sweet 16 party.

I’m not sour about it, I just don’t know anything about throwing this type of shindig. Well, other than what MTV has taught me…

But I never expected a sweet 16. That wasn’t our style anyway (my family) – and in any case my NanaNat had thrown me an extravagant and expensive Bat Mitzvah when I turned 13 (as only a waspy blond shiksa might), complete with me getting “secretly” drunk with all my closest and not so close friends, really long and boring speeches made by myself and my family, and many – MANY – family members and family friends of whom I had no recollection of but who all said “Oh look how much you’ve grown! A young lady now!”. This party was the start of a new tradition within our very waspy family (though my sister and I are technically – yes actually – Jewish, by birth right) where every child who turned 13 was given a special ‘coming of age’ party. It began with me, went on to my cousins and eventually it came to Pups. I did not throw her an extravagant party though. Instead I invited all the most important and influential women in her life at that time and we all shared stories of coming of age and how we were connected to Pups in one way or another. We spoke of womanly things and memories and lessons we learned along the way through our various stages and ages. And Pups, as is her style, took it all in grace. I am positive that this was not the most thrilling ‘party’ she had ever had, in fact I am willing to bet that her Easter egg hunt parties when she was little far surpassed this get together of women. Still she exuded the elegance and stature of a true hostess and grateful daughter. I was not only proud of her, I was in awe of the future her, the woman that I got to see in her that day.

And what an experience it is to see someone grow and change and learn and blossom. Yup, I said “blossom”.

She was born on a beautiful Wednesday filled with sunshine and warm breezes. It was 2:38pm when she arrived and the weather channel reported it was a high of 13 degrees outside. I remember that. I watched the day pass from the hospital window, the sun shone in and filled the room with vitamin D. She was born big – 8lbs 6oz – and round and red! She looked like a little Buddha.

She was perfect.

16 years have passed and I have been witness to a baby turn into a girl and that girl turn into a young woman. A young woman with dreams and aspirations of dancing and becoming a chemist. I have watched her childlike curiosity turn to real life experiences that teach you and even, sometimes, age you. From an innocent child to a woman with a sense of her own sexuality and a strength in her beliefs and morals based on fairness and equality. A yearning to never stop learning, so much like my sister and mother. An openness to new things and the courage not only to recognize right from wrong, but the courage to do something about it.

Seriously…I got to watch that all happen right before my eyes guys!

It’s weird to know that my baby, my first, is 16. That I have been a parent, a mother, for 16 years. For half my life I was a teenager, and before I even grew up I was a parent to someone.

Half my life a child, half my life a mother. We grew up together she and I. In many ways she kept me young and I matured her before her time. For a long while we were more like sisters than mother and daughter. So much so that her respect towards me does not come from a natural and expected respect of your mother, but a mutual and earned respect that enabled her – from a young age – to call me on my faults. She has no idea how much she changed my life, or how much she changed me. She was the best mistake I ever made. Because having a baby at 17 is a mistake, do not doubt that. I stunted my education, my career, my young adult experiences that are so vital to grow into someone wise. But having her, well let’s just say that as hard as it was, I have never, not for one millisecond, regretted her. She truly is the best mistake I ever made. She grew me up and taught me how to live.

Her story is so different from my own story, and because of this she is so different – better – than I was then. I can say that, not only because it’s true, but because it really is true. She is SO smart, too smart. She is SO beautiful. Too beautiful. And she is witty and funny and elegant. She is nerdy and goofy and opinionated. She not perfect at all which adds to her awesome. She always has been, and I’m pretty sure she always will be: awesome.

Unless of course she becomes some crazy psycho killer or something… but I think that is highly unlikely, she hasn’t drowned any kittens yet.

So, with all that said, I have to admit – that although I am not a “throw your kid a sweet sixteen” type of mom, I am so appreciative that her step-mom is. In true Filipino style and tradition her step-mom and her dad threw her a giant, extravagant, expensive, super fun, “sweet 16!”. And they are awesome for it.

Because if anyone deserves a really big and super-fun party, Pups does.

Happy birthday Puppy.

In a couple of years I’ll take you for that first tattoo. That’s how this mommy rolls.