Category Archives: autism

Jack and Jill. A Story Of Another Mother.

My mum, Jill, was the best mom a kid would never ever ask for.

My aunt, let’s call her “Jack”, was the best mom a kid could never ever ask for. Because Jack, you see, was already somebody else’s mom. Two somebody’s actually.

Jack and Jill were best friends. Once upon a time.

“Jack” is my aunt on my father’s side. It was through her that my parents met. There was a gang of them, all writer’s and artist and eccentrics. People with cool names like Norbert, Jan, Lorne, Lloyd and Ursula. People who threw big parties and wore cool clothes. The gang.

Jill was spunky and feisty and way too smart. Actually my impression is that they were all too smart. Both Jack & Jill had short dark hair and wore their sexiness and their wit like a casual shall. Never too obvious, always obvious enough.

Jill went nuts. Jack didn’t.

When Jill started spiralling deeply into the world of paranoid schizophrenia she not only began to disengage from reality, but also her loved ones. Jack was not immune. It was Jack who finally pulled the plug on the toxic friendship when Jill’s illness simply took Jill over and it seemed Jill, the real Jill – was lost forever. Jill took this personally, though it was directed at the monster within, not her. She never forgave Jack. And she never forgot.

Jack, who had been named my Godmother at my birth (though none of us are religious), had a connection to me that was deep and true. I longed for her motherhood to impress upon me. I wished I could slip through the cracks and become one of her kids seamlessly. Course I still, also, wanted to be my father’s daughter and my sister’s sister…so it was all a bit complicated in my 9 year old mind.

In the years that passed I continued to become more and more disconnected from my mother. She stopped letting me visit her when I was 9 years old (for my own good she claimed, maybe she was right). When I was 12 I went to live with Aunt Jack for a year and during that time we went to my mother’s apartment in Montreal so that I could invite her to my 13th birthday. It did not go well. Jack waited outside in her car, but the mere mention that she had driven me caused Jill to become enraged. She yelled at me for even suggesting she come to Toronto. She kicked me out.

I can’t remember if I cried while sitting in Jack’s car just outside Jill’s door, but I do remember that I learned a hard lesson that day.

I gave up any hope that my mother might want to see me again.

That was likely a pivotal moment for me. As an adult and a person who has studied psycology at various times in my life I can look back and see clearly that it wasn’t just my mum I gave up on…but perhaps I gave up a bit on me too.

Hindsight is 20/20.

For the next few years I went through phases of self-harm in the forms of cutting, various forms of drug use, running away from home in the middle of the night and some rather loose sexual exploration which included one abortion at the age of 15 and one pregnancy and baby at 17 (pups). In all fairness I was at *that age* (teenager) so my mother can’t be blamed entirely, but I’m not sure self-harm by way of cutting is a normal past time for teens, nor two pregnancies in two years before the age of 18. 

At the age of 16, when I had almost completely accepted that my mother was lost to me, Jill contacted me. Not only was this event in itself a challenge for me, but it came shortly after I had just had an abortion and was still reeling from it. I became severely depressed for a long time after the procedure as I had taken a long time to decide on it and was 3 months pregnant by the time I went in for the abortion. And, as if on queue it was during that depression that Jill contacted me. She requested we reconnect. I remember standing at the sink in my grandmother’s house (where I was living at the time) doing the dishes and thinking “she’s just going to come into my life and make me love her again and then vanish”.

And in a way she did just that.

The reunion was awkward at first, but soon I had mostly convinced myself that she was serious about being my mother again. We started talking regularly and visiting. I was over the moon but still suspicious. Always a bit on edge. At 17 I became pregnant with pups and my mother seemed excited albeit a 17 year old, her daughter, was having a baby. As I neared the end of my pregnancy I finally trusted that Jill was sincere about our new relationship. I felt good. My mother was back. Better than back, she was new. My uncles had done an intervention on her where they had her institutionalized for a bit and she was assessed and put on medication. I liked the medicated Jill. She was very kind to me.

Before I had this newfound trust for Jill it was Jack who I had invited to be at the birth of pups. It was Jack who I wanted at the birth to support me. But when Jill reappeared I started to reject Jack. I didn’t realized it was rejection at the time, or why I was doing it – but it’s crystal clear now.

18 days before my due date Jill jumped in front of a subway train.

I wasn’t told for two weeks.

There is about a year of my life, after pups was born, that I cannot remember. Total black out. 

My ex told me I woke up screaming in the middle of the night almost every night. I don’t even remember dreaming during that time.

Luckily there are pictures. 

As the years passed I glued myself back together. Jill’s memory stayed with me, but the pain she had left me with from her dramatic departure faded. Through it all Jack never faltered in her love and commitment to me as a caring family member. As I grew I started to notice this finally, and appreciate it. I spent weeks at her home in the laurentians, almost yearly for a while there. And when it came a time where I could no longer afford it – Jack surprised me once again with her endless caring and treated me and my kids to a week at the cottage. For many years, even as an adult, I never quite shook that wanting and yearning that Jack was my mother too. I understood this was a fools wish, not only because it is impossible – but also because having her as an awesome aunt and motherly figure in my life should have been enough. I struggled internally with the guilt that I didn’t think my father was enough or that I would want something that belonged to my cousins, of whom I cared so much for.

Here I stand, a 36 year old woman. And for the first time ever I actually see my mother in me. I suppose this is because I only knew her from her 34th year on (till her untimely death at 50). And though I have always had a closer bond with jack, and a hope for us to be closer still, I like seeing my mother in me. I feel connected to her in a way that only mother/daughter DNA can offer. I see her in the way my body has filled out. The way I walk, the way I stand and the way I bend. I see her spirit within me. The good, the bad and yes – even at times the ugly. Her feist and wild side live in my heart and in my mind. Some of it brings out the best in me, some brings out the worst. And yet, however much I see in me the sides of my mother that in my past broke me over and over again as a child, I know that I can control them. I’m ahead of the game that my mother lost so tragically. My father, my aunt, and once upon a time my grandmother, have all had a hand in guiding me on my path to wellness when the edge was near. Jack most of all helped me when I had my nervous break down. She spoke with me daily and supported me. I used her and she allowed it. I needed a mother at that time and she stepped in as the best substition she could offer to be. In a turn of events, ever since I have started to see Jill in me, feel her under my skin and in my way of being, I have finally shed the need to have Jack as my mother. I am finally satisfied as a woman, as a daughter, as a neice, as a person – just to be me and to let Jack be Jack, who is not my mother. And to let Jill be Jill. Who is my mother.

After all this time my reality is finally is enough.

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Bear Turns 6 and the curse of Hypoglycaemia Unawareness

Today Bear turned 6.

And I marvel at the little boy who has come so far.

When he was first diagnosed with type 1 diabetes he was understandably terrified of the needles. In fact, he still is.

Every single shot is a traumatic event that leaves us all a little bit breathless and the hub and I a lot older and more exhausted. We breath, slowly IN and then slowly, OUT.

IIIIIIINNNNNN

and

OOOUUUTTT

We sing “Let It Go”. And when the chorus comes we breath again and then we inject.

His body is speckled in bruises from the shots. His arms are hard to the touch because the insulin has created scar tissue there and now we must wait three months before we inject there again.

Nothing is easy and simple and taken for granted anymore. Especially not him. He isn’t just a little boy anymore. He is a boy who understands chronic disease, sick children, the real possibility of death.

He is also a little boy who has gained courage and strength I didn’t know he had, and who has helped me to gain it too.

I watch him give himself his shots and I look on with wonder at this little man so strong and so brave. I see the cupcakes he comes home from school with from some school mates birthday celebration, that he has had to pack away and has to wait till he gets home to indulge in, his face always a little bit sadder on days like that. Because it isn’t about the cupcake, we all know that. It’s about the reality.

The reality of this disease is that it controls his every move. This unpredictable disease that so many, too many, take for granted.

And the reality is that though he doesn’t have a choice he is taking it on like a champ. Making decisions, that are wise and beyond his years. Gaining empathy for others in tremendous ways and supporting others with a maturity only a child who has needed such intense support can know.

He has always been a lovely and wonderful boy.

But he is a better brother because of his T1D

He is a better friend because of it.

He cares more about others, because of it. Because he knows.

He is 6 today.

But he is 6 going on 30.

Last year, shortly after his diagnoses Bear came to me in a cold sweat one night with tears in his eyes. What happened? I begged to know.

Through sobs he told me that he dreamt that he died when he was 6 years old. I swallowed. Like a good mother I said all the right things:

It was just a dream.

You won’t die when you are six.

Sometimes dreams can feel real, and when scary things are happening we can dream scary things, but really truly, it was just a really scary dream.


You are ok. Mama is here.

I said these things, and I believed them.

I do believe them.

But it shook me. And for a year and a bit I have both anticipated and dreaded today. My sweet little boy. Faced with a life, a disease that he feels so alone with. Forced to find a courage little children are not supposed to know about. And it shakes me even more that all I can do is chase the rabbit down the hole, always trying to catch it – always trying to keep his blood sugar levels in balance.

Bear has what is called “**hypoglycaemia unawareness” a condition that can be common in children with T1D that prevents him from recognizing the signs of low blood sugar, especially in the middle of the night.

He’ll wake up – they said


He’ll have a nightmare and he’ll wake up – they assured us

But no, he doesn’t. He sleeps soundly through this incredibly dangerous blood sugar reaction.

This last week the nights have been heart wrenching and anxiety driven. JBear just can’t get his blood sugar up. And yes, as is typical of the diabetic with hypoglycaemia unawareness, he isn’t noticing.

No bad dreams or thrashing around waking himself up. In fact, even when we do jar him enough to get him to sit up half awake and recognize that we are there to save his life, he stays disoriented and becomes verbally abusive (like a bad drunk) and because of this he refuses to take what we are offering. He refuses the only thing that can save his life at that moment – juice. We must beg and threaten. We must force him.

And it’s awful. Just awful.

Yesterday he had trace ketones telling us that his body was not able to get any glucose (energy) from his cells so it was now attacking his fat cells. This can lead to DKA. It was scary – we tested and re-tested him all day trying to bring him to safe level.

Then last night his BSL dropped.

It was 4am.

I had a sinking feeling that I should check him. He was 4.0mmol (he should be between 6mmol and 12mmol). Luckily not too low yet, just low enough for me to squirt some maple syrup into his mouth via syringe and be relatively confident his BSL was going to rise to a good number. And luckily it did.

The thing was though, that his numbers were normal at bedtime and at midnight. Better than normal – he was 8.1mmol. His perfect number. The number we strive for. The number, that in the middle of the night I no longer trust because I have no idea if his BSL is going up or down from that point and why. Luckily the maple syrup did the trick. And I guess if we can put anything positive to this disease, especially from the perspective of a child, having to save your life by ingesting pure sugar as quickly as possible ain’t the worst.

In a situation where a child’s parents says “are you going to die if you don’t get candy? Eh?” he can actually say “yes, smarties can save my life”. Seriously.

So my beautiful boy is 6 today. And he is full of hope and love and courage. He no longer remembers that nightmare from a year and a bit ago that has burned itself in my mind. He is happy and glowing and full of dreams and wishes.

He is a marvel, this one.

   
 I am so glad to have him as part of my life. I am blessed.

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Filed under ADHD, ASD is more than what you see, Asperger's, autism, death, diabetes, diabetes and illness, diagnosed, Sensory Processing Disorder, strength, Uncategorized

World Autism Day

A day not unlike yesterday really.

But with the growing number of cases of ASD (even if just in my own friend circle alone) and the equally large number of “cures” and theories about diet, vaccinations and environment – and of course the accusations by others of BS diagnoses (and very likely the large number of BS diagnoses) – well I think this day is well worth mentioning.

Bean is a girl Aspie. In her case (from the view of general society) she has the upper hand of seeming “not autistic”. To the world – those who do not understand ASD – she very often and most probably appears quirky or disengaged, at the most, but not much more than that. 

Every day I see that she learns through her echolalia and mimicry how to be more like a “typical kid”, a “typical girl”. Her fashion choices have changed, not to the standards of her peers necessarily, but certainly it has evolved from only fuzzy pants and leggings to mostly fuzzy pants and leggings and even sometimes – jeans! – seriously. And, it’s true, she has adapted, and continues to do so. She is playing around with sarcasm and fibs. She is working on the right time to roll her eyes in annoyance at her brothers. Partially it’s really cool to watch her observe, take in and learn about her surroundings. Partially I miss the little girl who didn’t have any interest in doing any of that.

Of course I understand why, as a human, she must adapt to her best capability. We all must at some point, in some way or another. And I understand that she may not even be consciously choosing to adapt, it may truly be an organic change. One brought on simply by her subconscious understanding that in order to get further in life, one must fit in. My hope is that she doesn’t change too much. That she stays as quirky and as awesomely neat as she is for as long as possible while still finding a way to be happy within this world lead by “general society”.

In a world where World Autism Day is still something people look at as a day to acknowledge and be aware of the pain and work that comes with autism (Autism Speaks…ahem) instead of just a day to remember that differences are important and that autism is a way of being that the world should work better to understand not to condem. A day to think of the famous people with Autism that changed the World in their own ways and a day to think to the people on the spectrum who have never and may never do anything that would be considered spectacular – but that are no less important or awesome. And certainly a day to learn from our children, partners, parents, friends and neighbours with ASD that Autism is interesting and gives light to new ways of thinking and seeing the world. That taking the stigma out of ASD is creating a place where autism is just another way to open a door to acceptance.

So, this World Autism Day I remind myself that we should not be normalizing ASD for society, we should be normalizing ASD within society.

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This Is Autism. An interview with Bean.

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I decided to ask Bean what Autism is in the spirit of the AutismFlashBlog going on (check it out).

This is how it went down:

>Bean, do you know what Autism is?

I don’t know
And I don’t really care.

I don’t know about Autism and Asperger’s.

>Do you think Autism is good, or bad, or just a thing that is.

I don’t know if it is good or bad. I really don’t know actually. It is just me.

>Asperger’s is a type of Autism and Asperger’s basically means that you think differently than others. That you may see things differently and feel things differently. Perhaps when someone looks at a car they just see a car. But when you look at a car you see the patterns on the license plate, or the colours in it and a scratch that nobody else notices. Sometimes you might be overwhelmed because you notice too much, too many sounds, too much light. But it is your ability to really see things that helps you to see things others sometimes miss. And because you like to really know things about things you like, and you learn all about them and never get tired of learning about it or practicing, you become a specialist in things. And that is really cool!

I see your eyes and your nose and your blond hair and your shirt, with the lines in it. Scritchy. And the wall with its lightish colour and the spots on it.

>Sometimes it can be challenging to be autistic. To think differently and have people not understand the things you do.

I don’t like it when people ask me to repeat something they said, like “say sorry”. I just can’t. I can’t say their words.

>That’s true. You can’t do that. Maybe someone without Asperger’s might be able to do it more easily, even if they didn’t want to, but you really can’t. And that’s kind of cool, because you stay true to yourself. You will say sorry if you feel badly, but you will say it your own way.

Yeah, I can’t really say other peoples words. I can’t.

>So, now that we’ve talked about it, and you understand a bit better…what do you think Autism is?

Autism is actually being different. Some people have an autism that is less than others and those people can be in groups more easily because not everybody knows they have autism. But the others, he has more autism and he is bullied. And that is wrong because he shouldn’t be.

Because some people that have different autisms kinda can’t really speak English, and they have trouble with things and fitting in and they are more easily bullied. People don’t understand them and they can’t say what they are needing or feeling.

Bullies look for people who are the easiest. And that’s wrong because if you have a more autism and you can’t protect yourself and people should be kind to everybody because everybody needs a friend.

Everybody has to have a friend.
Bullies don’t like people with friends. Nobody should be bullied.

>Do you know which type of autism you have?

I don’t know.
Less autism.
I know because if I had the more then I would know because you can’t really talk. Maybe they can’t hear or something.

(I interject with an explanation about what deaf means and how anybody – autistic or not – can be deaf)

>Do you think that people who have “more autism” are able to communicate with others?

Yes. But I don’t know how.

(I explain some different methods of communication)

Oh. Ok.

(I ask if she would be friends with someone who had more autism than herself)

I would.
Because just because you are different doesn’t mean you do not deserve a friend. Maybe he can’t speak but maybe he is still wanting friends. Bullies do not like him having friends because with friends they cannot pick on you because your friends stick up with you.


Now that’s enough autism talk.
Let’s go to bed now.

>Ok buddy.

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ASD and Type 1 Diabetes. The case of the really shitty school.

Once, while rushing off to work from dropping my kids off at school I was called a “bad mom” by one of the staff because I wasn’t standing still for the National Anthem. I was shocked. I reported the incident to the principle because a teacher should never be allowed to treat a parent that way. Instead of apologizing to me for his staff’s immature and inappropriate behaviour, the principle defended her saying that we must all stand still for the National Anthem.

That should have been my first clue as to how awful a school this was. Treating adults, nay parents, like children they can lecture and insult should have been enough of an insight as to how they must treat the actual children at that school.

But I let it go. Never thinking that this Principle’s attitude towards the parents of the school (or at least to me) might reflect how he and his staff cared for the students of the school, namely mine.

That was back when Pups was still going there. And luckily for her she was not a child with special needs. She was of above average intelligence, kind, good natured, calm and easy going. And…it appears, that is the only type of students that this school can deal well with. Or, I guess, does not really have to deal with at all.

When Bean started attending the school I thought (wrongly) that it would be as good an experience as Pups had had. Alas I was mistaken. Adding to the pot some ADHD and Autism created a school environment that I was not expecting, nor was prepared to contend with. I didn’t make very many right moves. I allowed myself to be convinced by the administration of the school that they were doing all that they could to work and care for my child in order to help her succeed.

They lied. Or at least, they did not follow through.

What little they did do I thought was a lot. That was until I started to do my own research on the school board and its responsibilities in so far as special needs are concerned. I was shocked and even ashamed to discover that the school was doing the most minimal amount required to help and nurture my child, if even that. I started to become “that parent”. The parent that always had another complaint and request. The parent that was always in the office looking to speak with the principle or VP. I was the parent they tried to avoid. The parent that never left anything alone.

I was the parent without blinders on anymore. I was my child’s advocate.

One would assume that I was enough of a pain in the ass that the school staff would learn not to screw with me. That at the very least, THE VERY LEAST, they would make sure that I was appeased, my children properly cared for, in order to keep me quiet. They are either not that smart or truly don’t care about the well being of their students. I’m thinking they are a bit from column A and the rest from column B.

And this was when they were dealing with Autism.

Sorry, “Asperger’s”.

If the child isn’t non-verbal apparently the school doesn’t seem to recognize it as actually being part of the autism spectrum, at least not “really autistic”. This was told to me by one of the head admin for the school.

This school originally denied Bean’s ADHD, they denied her AS. Even after formal diagnoses were brought in as proof they consistently told me what was AS and what wasn’t. They rejected my request for her teachers to be more sensitive to her conditions, especially her anxiety disorder. They were inconsiderate when it came to her suspected Celiac and diet restrictions – and that’s putting it mildly. They manipulated me in order to avoid giving her psycho-educational and cognitive assessments done. The numerous psychiatrists we saw for Bean had forewarned me that the school would attempt everything in their power to not assess Bean for any LD’s (learning dissibilities) she may have in order to save costs.

And then, as if all that wasn’t enough, I sent Bear (newly diagnosed with T1D) to that school.

I guess I thought that Autism was one thing, but a disease in which one depended on life sustaining meds was another. Perhaps all had gone badly with Bean because the school, the staff, truly saw a different kid then the one we knew. Perhaps their experience with AS in girls was limited or non existent. I convinced myself that although the issues with Bean were many, were constant, were not acceptable…that those issues would not fall on to Bear. Because Bear had diabetes, Type 1 Diabetes. A chronic disease. An autoimmune disorder. A condition that required, as mentioned, LIFE SUSTAINING MEDICATION. 

Nope. All of that didn’t make a difference. The administration wasn’t taking his condition seriously, or they weren’t thinking of the implications it would have on them if he was hurt because of their refusal to care for him properly. So I wrote them a letter in hopes of bettering the care of the next child they encountered with Diabetes. In hopes that they would now know how to respond to the issues a student with T1D faces efficiently, safely, responsibly.

At the end of the letter I attached forms and documents that I encouraged the administration to read up on.

This did nothing.

This school that Bean and Bear attended had finally reached its limit of irresponsibility and neglect for me. I wish I could say “fool me once shame on you, fool me twice shame on me”, but in this instance it’s more like “fool me over and over again till I don’t know what else to do and I finally start looking for a way out”.

Shame on me.

This lack of proper care and smudging of the rights of my children at that school was astounding. And although I blame myself for letting so much of it happen without educating myself on my children’s rights – this school proved time and time again that it was not the right place for my children. 

I really am saddened by this. I hoped my kids could go to a school close to our home. I hoped that this school would support my children and care for them.

In the end the best choice, the safest choice, was to remove my children from that environment. To hopefully find a school that will see them as sweet and smart kids who also happen to need a bit of extra care – and not see them as just another burden with a really bitchy mom.

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Filed under ADHD, ASD is more than what you see, Asperger's, Aspergirls, autism, celiac, death, diabetes, diabetes and illness, diagnosed, Dyspraxia, education, ipad, Motor Praxis, Sensory Processing Disorder

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 12am and 3am 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.

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Filed under Asperger's, autism, diabetes, diabetes and illness, diagnosed, schedule, Sensory Processing Disorder, strength, Transition

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 with BPD and GAD.

Dealing with a teenager with GAD.

Yeah, I’ve been “dealing”…or perhaps not dealing so well. But at the very least – trying.
Restart > In my absence from blogging I’ve been trying.

Bean is stressed as we are all stressed. She’s scared and confused and hurt, as  we all are in this trying time. If it isn’t enough that our lives have been turned upside down by the diabetes, and the “gluten challenge”, we recently found out she has (all school year) been neglected and treated without any consideration or regard for her dietary restrictions, autism or ADHD by her teacher. That she feels different and the explanation of Asperger’s isn’t quite cutting it. She needs more than just a name to encompass it all. She needs understanding from her peers and the adults in her life and she needs to be able to create her own way to deal with her surroundings and function within the society we have laid out for her.

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.

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 school about having us invest 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…”. Well first off ipads don’t only have games on them…but YES, that’s exactly why it will work for Bean I thought. Math and spelling “games”can help Bean to learn. 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 them from digging themselves further in. “For those who ‘really’ need it.”

So, here is my daughter, D-streaming grade three. It is obvious she is not learning anything. Grade three is officially a bust. Yet they are pushing her through. Sweeping her issues under the rug so that these LD’s they claim she has 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 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. This is her normal.

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

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 too is Asperger’s, so too is PDD-NOS (atypical autism). Call it what you want, believe what you want – it is what it is.

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 inquire 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 where I left yelling “screw you”, 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.

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

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Filed under ADHD, Asperger's, Aspergirls, Aspie raising an Aspie, autism, celiac, diabetes, diagnosed, Dyspraxia, Motor Praxis, Sensory Processing Disorder, strength, Transition