Category Archives: strength

About A Boy. A Sweet Boy.

There are boxes piled up in the mud room. Empty flattened boxes. Waiting for me to make a move. Literally.

The stress level in the house is high. We don’t know where we are going next. So far all we know is that we can’t stay here. Our home is sold and we have to be out by 6pm on April 4th. 

But this post isn’t about that, it isn’t about me. It’s about my boy.

In 4 days he will have his third “Diaversary”.  

 

—> Diaversary: The anniversary of your diagnoses date, aka the time you stick it to diabetes no matter what the blood glucose number is. ex “We’re having cake for dessert to celebrate your diaversary. You’re 250? Then we’ll just have to bolus extra.” 

Three years of us all ‘dealing with’ and him having this disease, Type 1 Diabetes. Diabetes Mellitus. Mellitus, the Latin for “honey” “honeyed” and/or “sweet as honey”. Diabetes, meaning to siphon. In other words, to siphon or discharge honey/sweets from your body. “The Sugar Disease”.

He’s come so far this sweet boy. From injections to pumping to counting carbs and recognizing his lows. From the moments of triumph where he didn’t even move or fuss at all when the inset was put in, to the moments of fear where he seized in front of us and we finally used the glucagon that we were starting to think was just a Diabetes prop. And all the moments in between. 

All those moments that pass as if we’ve always lived like this. The night checks, the tantrums over wanting a juicebox when his meter said he was normal, the way we watch his moods for signs that he is high or low, the way every bad mood or bad decision on his part is double checked with a blood test. The way we look at him when his blood is in perfect range and he was still acting like an ass. As if a 7 year old boy can’t just be an ass sometimes. The way his sisters ask him constantly “can you eat that? Did you check your blood?” – and they just care, I know how much it drives him crazy – but they just care. The way that all the kids in class got a small bag of treats and he was given a bag of stickers this Valentines, and how cheated he felt. How angry I felt at the parent who would make him feel that way. But he was angry at diabetes, not at the kid or the mother. He knew they had made this choice thinking it was the right one to make, not out of ignorance so much as out of caring. Though the two can look alike from the point of view of a mother bear who only wants her child to feel included. But he was angry at the disease. This disease that makes him stand out as much as it makes him feel unseen. And this is our normal. 

This week is especially hard for me. All the house stress aside, this week brings back all the intense feelings from that day he was diagnosed. I remember weeks beforehand my confusion. 

“Why is he so aggressive?”

“Why has he stopped waking up at the crack of dawn and now I have to pull him out of bed?”

“Why is he peeing his bed?”

“Why is he so thirsty?”

“Where did his energy go?”

“Why is he so unhappy all the time?”

Like any good mother I went to my mother Tribe and inquired. My best friend at the time offered this: “He’s just regressing because of starting school” “four year old’s go through phases” “This is normal, don’t let yourself get paranoid”. But I knew, somewhere deep inside, that this wasn’t “normal”. Though I had no idea what it was – so I went with what I did know, Asperger’s. It had to be something. And he was so sensory oriented these days and aggressive that I thought “perhaps this is what AS looks like in him?”. At the assessment for AS I non-chalantly mentioned his outrageous thirst and bathroom escapades. I thought nothing of it. The Neurologist who was assessing him said “I don’t think he has Asperger’s Syndrome…but I think you should go to the doctor for a check up”. She didn’t elaborate. I didn’t ask her to. I didn’t think much of it to be honest.

Still, I did finally decide to take him in. Against the advice of my “then friend” and assuming this *had* to be something other than a phase (I suspected a bladder infection). We went to the doctor’s office. They asked him to pee in a bottle, both he and I knew that the little urine collection bottle they gave us was a joke. We had been watching him pee buckets for weeks now. But we did it and we were lucky that his urine only skimmed the top and didn’t spill over. His urine was colourless and cloudy – as it had been for a while. The doctor and nurse looked, what I thought, surprised or amused at the extent to which he filled that bottle. What I know now is that their looks were of concern and shock. Things began to move very quickly then. A blood test with a lancet and a funny looking hand held device (meter) was done. They moved in and out of the room all the while giving us gentle smiles and acting so calmly that it appeared just that – an act.

In those moments all you want to believe is that the act is real and there is nothing to be concerned about. All the while your parental instincts are firing off like firecrackers inside you and you don’t remember how to do anything anymore but comfort your child and like them – act calmly and smile gently. “All will be alright”

The doctor stood very close to me when she came to speak to me, as if she was expecting me to fall. She said “I think it might be diabetes. You need to go to the hospital emergency room right away. I’ve called ahead and you will have a room waiting for you, do you need to call anybody right now?”

I didn’t really know what diabetes was, not really. A friend of mine had died from it years ago, falling into a coma alone in her bachelor apartment and being found three days later. That was all I knew. But she was an adult – he was a child – I said to myself as if that made any difference. But the doctor said “think it might be” so perhaps it *was* something else, something benign… 

I hoped.

Even at the hospital I kept asking “but what else could it be?” to the doctors who were working quickly to get blood from him and put an IV in his tiny arm. Finally someone answered me. “Nothing. It can be nothing else. It is Diabetes”. I remember fighting that they had said “might”. I remember fighting for them to do more tests. A doctor came up to me and said “we don’t need to do anymore tests. We know what it is, it is diabetes.” Denial is such a strong thing. I stayed stuck in it all through “Diabetes Boot Camp”. I stayed stuck in it even when I thought I wasn’t stuck in it. His seizure was the moment where the last of my denial was finally shed. Like snake skin my denial had grown thin and transparent and much of me was new and tough and connected to his disease, but until the moment the skin of denial fully fell off that night in his bedroom while I held him so tightly and realized with open eyes that he has Type 1 Diabetes, and that it almost killed him. Until that night I had not realized how important my job really was. I have to keep him alive. Not like the rest of my children, but medically. I have to walk the tight rope for him till he can do it himself. And there is no net if you fall.

I. Have. To. Keep. Him. Alive. 

That isn’t dramatic, it’s fact.

Three years. Just a small portion of a lifetime of this to go. But sciencitific discoveries and experiments are growing in the way of a cure, and perhaps in his lifetime he will be able to say “I had diabetes”.

This Friday we will not celebrate his diagnosis, so much as we will celebrate overcoming the sadness of his diagnosis and embracing what he is apart form his diabetes. We will celabrate his bravery and his strength throughout this 24/7 disease. We will celebrate that we, as his family are doing our very best, especially through the really hard times and that we’ve made it this far this well. We will celebrate his awesome A1C’s and we will celebrate it all in the name of all the other diabetics out there who are fighting the good fight. The fight to stay alive.

Happy 3rd Diaversary sweet boy.

 

                                     

Advertisements

Leave a comment

Filed under Asperger's, diabetes, diagnosed, Diaversary, strength, T1D, type 1 diabetes, Type 1 Diabetes, type1diabetes

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.

20130402-014808.jpg

Leave a comment

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

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.

Leave a comment

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

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.

20130521-033014.jpg

3 Comments

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.

20130507-173608.jpg
Doing some work on the ipad – in a trunk – of course.

2 Comments

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

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.

Screen shot 2013-04-07 at 9.16.59 AM

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.

20130401-141657.jpg

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.

20130404-005440.jpg

20130404-005455.jpg

20130404-005511.jpg

20130404-005535.jpg

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):

20130404-010237.jpg

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.

3 Comments

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

My not so “Sweet Sixteen”

When I was 16 my mother, who had been, by her own accord absent from my life since I was 9 – decided to come back into my life. I immediately knew something was amuck. What her plan was I couldn’t be clear on except that I was certain the end result would leave me in pain…

I was right.

She became quite involved in my life for the next year. She visited with me at my home, something she had sworn she would never do because the city I live in was filled with the FBI and evil anglophones (schizophrenia, go figure), she met my partner at the time, invited me to her home in Montreal with my sister. She had me cut her hair! Which was both strange and nostalgic as I hadn’t been this close to her since my childhood and I was surprised she chanced me messing up her hair or that she trusted me with scissors. She was present enough in my life that when I became pregnant she was able to watch my belly grow and stretch for a short while – and although she didn’t come, she was in my life when I had a shot gun wedding (not my proudest moment).

It was a peculiar time in my life as I was completely overjoyed (in a little kid before their birthday party kind of way) that she was so committed to being my mom again and at the same time completely suspicious of her intentions.

Convinced this was not going to end well, I kept my back up. I stayed on guard. Never sure when ‘it’ would happen – when she would leave again. By the end of my pregnancy and after a year of reconnection that happened during my pregnancy, I had finally begun to trust that her intentions were sincere. Maybe she really did want to be my mom again. To be in my life. I was excited for her to meet her first grandchild, excited that she would be at the birth. Two weeks before Pups was due, 5 months before I was to turn 18, on March 8th, 1997 – International Women’s Day – (of course it had to be a day with some sort of feminist political significance) she packed all the leases from every place she’d ever lived into her backpack and threw herself in front of a subway train – or ‘metro’, if you are from Quebec.

That was 16 years ago. A day does not go by when I don’t think of how much she’s missed. Or how much I miss her. This year, on March 8th (which is never really a celebration of women around the globe for me but instead a reminder of the woman in my life that died that day – on purpose) I did as I always do. I wrote my sister an email, and I updated my status with “today I remember my mother”. But as the days grow closer to my eldest child’s 16th birthday, this anniversary of her death is more than just a memory of her but it is growing into a recognition of how important it is that a girl have a positive and influential woman figure in her life. Not just one from books, but one that you can touch. A real person to guide you, and argue with you, and love you no matter what. One that hugs you tight when times are tough with all the love she can muster, even if you say you hate her.

Even if you really do hate her.

When I was 16 my mother came back into my life and then promptly left it again. Leaving me feeling cheated and hurt, confused and angry.

In two days my child, the child that was in my belly at the time of my mother’s chosen demise, will be 16. In a way I can thank my mom for teaching me what not to be for my child. For teaching me the hard way how much a mother means to a child, even if she is never there. So I must make the most of all my time with my children. Not just because they are my kids, or they have anxiety, or autism or diabetes. But because I am their mother. This isn’t just a title, it’s a responsibility. More than that it is a gift. If these children end up fucked up – I’m pretty sure it’s all on me.

It really is too bad my mother decided to leave this world before her time, she was a really cool lady I’m told by her past friends. She was smart and sexy and neat. A peculiar sort of character that made you want to know her better. I think I would have quite liked her. I also think she would have really liked Pups.

I think she would have liked me too.

20130331-220011.jpg

20130331-220044.jpg

20130331-220159.jpg

1 Comment

Filed under Borderline Personality Disorder, coming of age, death, funny, strength, Transition