Category Archives: ADHD

Disengage.

I spent my 45 minutes in therapy talking about it. I was going to meet her at the Tim Horton’s by my appointment. I chose the place because I wanted to have spent that hour beforehand taking it out with my therapist. She was late, which made the anticipation of the upcoming break up awful. When she got there she ordered a drink and sat down across from me on the uncomfortable stool at the ridiculously high round table I had chosen by the window. I let her do the talking, having nothing to add myself. After all, this was her schtick, not mine. I would have carried on for years with her outwardly hating me and me desperate for her love and approval. What can I say, I have a knack for this kind of stuff.

She used words I can only assume she got in her own prep therapy sessions on how to end our friendship. Words like “disengage”. And I’ll be honest, even in my moment of pain at her ending our friendship I paused and thought “did she just say ‘disengage’?” – and immediately pictured Picard comedically yelling “DISENGAGE” from his enormous chair on the bridge of the USS-Enterprise-D.

Although this came as no surprise, it stung badly, and I ran away sobbing after quickly “disengaging” form the situation by excusing myself to exit the building. I’m not sure when I knew. I certainly knew before the day she told me. I had been talking about it for the last few months with others before that fateful day. But let’s be honest, I had known for years. There was always a feeling of dread that accompanied our friendship. I could always tell that she wasn’t completely committed to me as her friend. She looked at me with such disdain so often, worse was when she looked at me with pity and regret. A look that rang with loud undertones of wishing she had never met me in the first place. 

We were friends for 6 years. And in that 6 years I always wondered why she hated me so much. 

She was my best friend.

I was not her’s.

I’ll admit that I am a high maintenance friend. I’m a loud talker, a complainer by nature and a chronic interrupter. I have baggage, so so much baggage. I have ADHD, Anxiety and BPD. None of which make it easier to be my friend. I’m emotionally irrational at times and way too sensitive most of the time. I take too many things personally and I too can be cruel when given the opportunity. However at the time we met I wasn’t going through any of the REALLY heavy shit that was about to hit the fan yet, and I was relatively stable. In fact (at the time) I was going through my most stable and happy time in my life. I had just had my third child and was spending most of my time at the parenting centre (that we met at) just hanging out and enjoying life. All my kids were happy and healthy and I still had a job to return to after maternity leave. It was a time in my life that I can sincerely say I was at my most authentic. At least most authentically happy. Relaxed and grateful and without heavy burdens, I could talk easily about my interests and goals. In fact I was interesting! I was creative, I had energy (albeit limited by being the mother of a young baby), I was easy going and I was fun. She had the loudest laugh I had ever heard and a fierceness to her that I fell into with both envy and adoration. She made me laugh, God was she funny. She caused me to question anything and everything. She was the part of my youth that I skipped when I had a baby at 17. She was mischief and brutality, she was excitement and beauty. She was brave in ways I had yet to witness and she made me feel more alive when I was with her. 

I fell in love with her. 

To me she was one of the coolest people I had ever met. She was a photographer and a musician. A feminist and an advocat for anyone who was in a minority. She taught me about strength and independence in a way that I had never known before. She educated me on white privledge and truism. She inspired me to learn about politics, to listen and read about the World today. To look at the world through clearer eyes so that I may see it for the first time in a way I had never seen it before. I can never know for sure, but I can only guess that I offered her a younger version of herself, and someone who looked up to her and idolized her. Someone who had lived a very similar damaged upbringing and whose damage still hung there like a coffee stain in a favourite shirt that you wear anyway.

I was a clean slate. A slate on which she and I could create the image of what I should be. I made her laugh and I drank in everything she said and did. The undying flattery I offered up to her perhaps gave me a small place within her heart. Though I’m not quite sure if she ever liked me, she did love me I think, in a dysfunctional way. It’s hard to know for sure because she was as cruel to me as she was kind.

She could never have known what was to come, neither could I.

As soon as we had established a strong bond – my life began to unravel. About 2 years into our growing friendship I ended a friendship with my then best friend, I had a new baby (my fourth), just bought our first house and my sister was diagnosed with breast cancer. My second eldest had been showing signs of being more than just a “Spirited Child” (if not for my efforts at buying every single book that would/could/should diagnose her otherwise). Obsessive by nature I started to research any and all potential reasons for Bean acting out in the way she was. 

My friend was unimpressed and most definitely uninterested.

Every time we spoke I wanted to discuss my findings. I wanted to understand what was going on and avoid thinking about my sister who I was ridiculously worried about. I was convinced Bean had ADHD and determined to get her assessed and in some sort of therapy to help us with the challenges of parenting a child that was “more”. My friend poo pooed my efforts with things like “labels are bad”. She rolled her eyes when I wanted to chat about it and even more so when I expressed concern about my kiddo. I noticed, and I tried to hold back and I tried to open the conversations to things going on with her. But it wasn’t just that she didn’t want to talk about me, she didn’t seem to want to talk about herself either. I spent most of our friendship wondering if I talked too much (I probably did), wondering if I was interesting (still up for debate) and I constantly felt as if I was taking advantage of her, or too clingy, or too open, or even too weird (ask me about the time I changed my baby’s name over and over again…). The more I tried to chip away at her wall, the more it grew. It left us with nothing to say to each other, nothing personal or substantial to a close friendship. She didn’t care for my life and my struggles and she didn’t like or trust me enough to care to talk about her’s.

I second guessed every move I made and prepped myself before every visit to remember not to talk about subjects she wouldn’t like or might mock me about. Some visits were so obviously awkward and uncomfortable that even I sometimes considered if it was time to break ties. She began to bore me, and I can only assume I had been boring her for years. I was never quite worth the trouble or worth the time. One might ask themselves why she bothered at all? I was definitely the weak one in the relationship, she could have easily broken my heart at any time. Maybe that was the power I carried. The power of an easily broken heart. In my darkest moments, when I went through my nervous breakdown shortly after Bear’s T1D diagnosis, I considered dark things and expressed them to her. Maybe it was at that moment that she decided she could no longer be my friend. And though that is fair, of course it’s fair, it doesn’t explain the previous years of insidious cruelty she acted out upon me. When we were out with friends, even very early in our friendship, she mocked me openly at every turn and even when we were alone she always had the incredible ability to assure me that I was uneducated and naive. Probably she wasn’t all wrong. I’m sure she wasn’t.

She was the friend that doubted my worry at Bear’s increasing issues with pee accidents and his change in personality. I’m sure I know why, because at first I related it to ASD. She hated my fixation with ASD, especially my need to write about it and openly publicize it in my blog. Exposing myself and my kids in this way lost a lot of respect from her. I can only guess that she felt I was victimizing myself and romanticising the condition. In truth I was in a way. I was also worried, and interested. I was also struggling with what this meant for my child and what it would mean for me as a parent. 

I wanted to talk about it. To reach out to those that understood. But my worries, my valid issues and need to relate to others, were trumped by her critiques of me. In the end, I suspect that to her, all I was was an obsessive attention seeker with a need to expose my children for my own benefits. 

Today a mutual friend of ours posted a photograph to Instagram that my ex friend had taken, and I decided to check out the ex-friend’s page. I wondered if she had ever posted any of the photography I had done for her. In fact she had. And though she always prided herself with being a morally sound photographer who asked people before she took their pictures and never posted anything without permission, she did not credit me to these photographs. I assume she never thought I would see them since we had blocked each other from each other’s profiles long ago. Alas, I have multiple accounts and was able to access it through the account I was on when I was scrolling my Instagram. I wasn’t angry, but I also wasn’t having it. In the first time in years, I contacted her and called her out on it. She apologized and said she had removed the images, which in my opinion was a bit extreme and unnecessary.  After all, all I asked for was recognition. Her crediting me my work did not mean we were now best friends again. Seriously, I just wanted credit on my photographs that were clearly being liked by a large audience. But hey, deleting them worked too I guess.  

After our brief communication about the photographs I decided to write her again. This time I sent her an email detailing my feelings about our past friendship and our “break up”. It may seem trite, or pathetic even, that I chose to do this, but – like the steps an alcoholic takes after they quit drinking, this was something I felt I needed to do to move on. Something I felt she needed to know. 

That she never fooled me. 

That she wasn’t a very good friend to me and that I always knew she didn’t respect me.

That despite it all, I loved her anyway. 

That there was a lot of good that I gained from our relationship. 

That I didn’t ever regret it, any of it. Even the end.

That even through her obvious dislike of me, she inadvertently caused me to love myself better. She caused me to question why she treated me that way and whether I would ever allow anyone else to do the same.

And I did learn to love myself better. I learned that just because someone thinks you aren’t worth the trouble, doesn’t mean you aren’t. I learned that it’s ok to talk about your struggles and even to expose them. Because it’s also ok to want the world to know. It’s ok to search out others like you. I learned that even bad relationships have worth if you can find the worth in yourself. I learned that you can love someone so much, and that doesn’t mean they’ll love you back. But more than that I learned that I can be ok with that, I can move on without regretting any love I gave even when I was alone in it.

Perhaps her best lesson to me was that life is too long and too short to carry grudges.

I walked away from her sobbing, yet still I was a stronger, more independent and more confident person just seconds after she said goodbye. The best thing she ever did for me, though it might have been selfishly motivated, was to end our relationship.

What she saw as a weakness in me might actually have been strength. Maybe loving someone anyway, through their shit, isn’t always the wrong move. Maybe it means that my heart is forgiving, and kind. Maybe it means that I am a good friend and that my heart isn’t so easily broken after all.

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Filed under ADHD, Borderline Personality Disorder, Friendship, General Anxiety Disorder, Major Depressive Disorder, strength

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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Filed under ADHD, autism, coming of age, death, funny, strength, Transition

BPD, what it is – and what it isn’t.

 

Recently I have been involved in a study that is attempting to prove that BPD is a genetic condition. In this study I have participated in very thorough testing.

I am so lucky to have been able to be a big part of a study that is *this* close to proving the genetic link to BPD. It’s a remarkable study and after being a part of it and seeing the results, not only mine but of other anonymous participants in the study, I am quite convinced that there is in fact a genetic link to BPD. I was shown random anonymous results laid atop my results. Those with BPD all fell within the same marks along the graphs. The fact that no matter how much therapy these people had did nothing to change these particular markers in those with diagnosed BPD is a clear sign (to me and the people conducting the study) that the brain of a person with BPD is actually, and simply, formed differently than those without BPD. Just as those on the Autism Spectrum have diffrent  neurology than people who are neurotypical. 

How then was I so easily misdiagnosed with the conditions of Asperger’s you might be asking yourself. Well as mentioned, AS/ADHD and BPD/GAD are all very similar to one and other and often co-morbid to one and other as well. It was as easy to get diagnosed with AS as it is to get diagnosed with AS instead of BPD – and vice versa. It was also easy to convince myself that I had Asperger’s (like Bean). 

For instance, I am hyper organized and have high anxiety when things are out of place, I have trouble with changes in routine and am not terribly affectionate or even empathetic – all traits I thought were a sure sign that I too had AS. But, as you can see from the (outdated) diagram below – are just as easily BPD traits.

Both AS and BPD could be argued as conditions that both cause emotional instability, however people with Autism are only ‘out of control’ of their emotional reactions when their environment proves difficult – as in disorder, private items touched, lack of personal space, overwhelming noise/actions…
People with BPD have intense reactions to what other people may consider trivial because the reaction is stemming from inner (and constant) mistrust, anxiety, fear and anger that runs much deeper than whatever may have just happened in that moment to cause them to explode. These fears and anxiety are constant – running through my brain every second of every day. They quickly turn to anger to protect myself from any vulnerabilty. 

http://www.bpddemystified.com/home/about-this-website/

These thoughts can quickly bring me to a feeling of being overwhelmed and suffocating. I begin to unravel fast, as anxiety takes hold so too the anger comes up like a shield, protecting me. Anger is easier for me than saying “I’m hurt, I feel overwhelmed, forgotten, burnt out, please help”. 

I’m always living on the edge between love and hate for myself and for others.

 

Any little thing can trigger someone who already has their gun cocked and ready to go. 

I have been in the DBT (Dialectical Behaviour Therapy) program for 6 months now. Once a week I attend group session for two hours and have a one hour session with my individual therapist. In DBT you are taught skills to manage when you are in “emotion mind” (a place that does not include logical thinking…as you can imagine). You learn to cope better, to apply skills to your life that will (hopefully) keep your vulnerabilty factor from overflowing, and even better – at a low. Luckily for me, with my drive to offer my children and my husband a more fulfilling life, a more loving me, I’m happy to say it is working. 
 
And I as I scratch at the un erasable self inflicted burn scars on my arms that itch whenever I’m anxious, whenever I’m tense, a real hope for the future, a healthy and happy future, is born within me. 
 
For the first time I can see myself as someone a little less unravelled.

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Filed under ADHD, Asperger's, Borderline Personality Disorder, diagnosed, General Anxiety Disorder, Mental illness, Uncategorized

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

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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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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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.

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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.

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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.

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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):

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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.

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Filed under ADHD, ASD is more than what you see, Asperger's, Aspergirls, autism, celiac, death, diabetes, diagnosed, disclosure, leaky gut, Sensory Processing Disorder, strength, Transition