Category Archives: diagnosed

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.

 

                                     

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

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

That Endoscopy Thing We Did.

If you are a die hard Deceivingly Normal follower you’ll already know that our dear Bean has suffered for a long time (from the age of 4) with GI issues, tooth enamel defects, low weight gain and bad sleeps leading to, but not totally guilty of, extremely dark circles under her eyes.

If you are not a die hard follower – than you can catch up here.

In any event: We suspected Celiac.

We pushed for a biopsy to be done, even with the risks of false negative results. Her GI doctor agreed, but only if there was a change on her blood test results. The change could be minute, it could still read negative by medical standards, but it had to be there. She didn’t want to put Bean through a procedure for nothing. I understood but this was awful. Not only was she clearly affected physically by consuming gluten (she was on the “gluten challenge”), but no matter how long she stayed on that damn gluten challenge, her blood results never differed. She never showed any positive antibodies to say she might have Celiac. We even tested her for an IgA deficiency that would cause her to be showing false negative results, but alas she did not have it. In other words, she was only showing physical signs of a gluten intolerance, but her medical results claimed different.

Blood test after blood test on my anxiety ridden kiddo, and nothing to help us get to the next step. I was becoming frustrated and impatient. Convinced I was right, but feeling like an overprotective and paranoid mom at the exact same time. In fact, exactly as I had felt when Bear was ill with T1D and I knew something wasn’t right, but continued to doubt my instincts.

We had her give blood every 6 months to test for those damn antibodies that might indicate that she might have CD. She was clearly ill, I might go as far as to say deteriorating in health (her teeth which had once improved were worse now, her eyes darker, her sleep worse, she began to get headaches daily) she wasn’t giving the Doctors what they wanted to see there was no good reason to validate the need for a biopsy.

Back to the books (internet) I went. More research, more sleepless nights finding the information I needed to get my child properly tested. I had done this once before with Pups. When she was diagnosed with Guttate Psoriasis. I had researched it till I discovered a woman who had “cured” herself of this painful full body rash by having her tonsils removed. I took my evidence to the hospital and got them to remove Pups tonsils (no, not on the spot).

And guess what? It worked.

My child was suffering, I was good at research, so I researched, and I found this:

Some patients test negative for celiac disease and turn out years later upon repeat testing to have celiac disease. Repeating your blood test may be an important first step. Some individuals also take advantage of genetic testing to determine whether or not they have certain HLA DQ genes that are necessary for developing celiac disease. If you do not have these HLA DQ genes, your symptoms are likely related to a condition other than celiac disease. The HLA DQ genes associated with celiac disease are present in up to one third of the population, so the tests are only helpful in excluding celiac disease as a diagnosis.”

I decided to get Bean’s DNA tested to find out if it was even possible for her to have Celiac. It was.

Determined to follow through with my instincts. I brought a folder full of evidence to show that Bean had more than just a slight chance of having CD and I demanded (asked really strongly) that we give her an endoscopy. The doctor agreed relunctantly. Even going as far as to tell me of a little boy who had complications due to a simple endoscopy being done. With a big gulp and butterflies (not the good kind) in my belly I ‘neverminded’ it and pushed ahead. I knew I was making the right choice.

We were booked for the endoscopy and awaited the date.

Bean was nervous, of course. And so was I. When we got to the hospital the doctor who was going to do the procedure came in to speak with me. Like Bean’s GI doc he too lectured me on the unlikelihood that this endoscopy would show any signs of Celiac in a child whose blood tests had all come back negative. He looked down on me (seriously, he was standing above me – I was sitting on the bed with the Bean) and his eyes read “Lady, this is not going to turn out the way you hope it will”. Which was totally useful at that moment in time seeing as Bean was two minutes from going into the room to get the endoscopy done.

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When we were left alone, after all the many different visits from all the different nurses and doctors and residents performing studies they wanted to know if we wanted to be a part of, Bean just sat quietly in my lap and held my hands tightly.

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I don’t get a lot of these moments, so I cherished it for exactly what it was.

Finally the time came for her to go in. They let me join her and hold her while they sedated her. She sobbed and screamed and panicked and then, like a light – she was out.

Afterwards, while she was coming out of it and recovering, the doctor came in with an “I told you so” look about him and said that everything looked normal but that we would get the results of the biopsy in 4 to 6 weeks. Glad it was over with I let out a big sigh of relief. At least now I could say I tried everything. And now that it had gone so well, and was such a short procedure (I’m talking 10 minutes) I knew we could do it again in a few years to come if we felt we had to.

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Two days ago we got a call from Bean’s GI doctor. The results were in.

You guessed it – she has Celiac.

Now we are working out exactly what that means. Other than the obvious – gluten free – we also need to get a separate chopping board for her food to make sure there isn’t any cross contamination. We need to figure out how much we tell people…do we announce it to her class so that the kids don’t share food with her? We need to figure out if gluten free toothpaste and shampoo is something she should have or if it is just one of those marketing schemes for the gluten free gullibles…and we need to throw her into this and hope that she will not cheat at school.

So, on we trudge. The family with the best chance of earning the “most amount of invisible conditions in one household” award (if it existed).

Shit, does that exist? Cause we could use an award right about now.

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

Safe Zone.

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

My heart ached for him.

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

He said he hated me.

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

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

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

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

“I hate diabetes” he said.

“Me too” I responded.

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

I get it baby.

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

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

Last night, when he dropped to a dangerously low blood sugar level (twice) and would not wake up at first and then, once awake, refused to drink the cup of juice we had for him – we were struck with the realization that we might be forced to give him a shot of Glucagon (a fast acting sugar kind of like an epipen’s fast acting adrenalin dose). We were scared. Thoughts of coma and death rushed by my mind through my instinct as a parent to get this kid to drink some damn juice. This disease was becoming ever more evident, more prominent, more real. Now it was taking over our nights, not just our days. I couldn’t sleep anymore, not when I knew I was getting up at 12am and 3am to check on him.

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

Through the massive gulps and swallows he sobbed.

My heart broke for him.

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

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

I hate this normal.

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

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

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

We must stay in the safe zone.

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

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

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

High Functioning Autism: The Curse Of The Double Edged Sword

In my absence from blogging I’ve been dealing. 

Dealing with Diabetes. 

Dealing with Autism. 

Dealing with BPD and GAD.

Dealing with a teenager with GAD.

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

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

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

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

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

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

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

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

She *is* autistic. This is her normal.

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

She has Aspergers. Or, by the new DSM V standards she has ASD level 1. And no matter how many people want to fool themselves into thinking that Asperger’s is actually not a form of autism, or that it is so mild it really doesn’t count, they will never be right.

Just as Classic Autism is a “form” of autism, so too is Asperger’s, so too is PDD-NOS (atypical autism). Call it what you want, believe what you want – it is what it is.

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

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

A pile!!

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

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

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

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

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

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

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

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