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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World Autism Day

A day not unlike yesterday really.

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

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

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

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

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

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

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Back On The Horse

Where to begin writing for this blog again? So much has happened.

From new jobs to being let go, to diabetes roller coasters to diabetes successes. From old schools to new schools and old (beloved) houses to new (not so beloved) houses and just about everything in between…

Though I promise to share it all, I’ll start by divulging about me. Me personally. Because, actually, I think it’s about time I do that again.

I have begun a treatment plan for my BPD. A year of intensive treatment.

It came at almost the exact right time. “Almost exactly” because it came right after I had a nervous breakdown.

Yup.

You read that right. I’ve mentioned it once or twice before I believe.

I had a fucking nervous breakdown. I won’t go into all the nitty gritty details – one never knows who reads these things – but I will say that I was past the edge. Not standing precariously by it.

It all just got to me and I finally buckled under the pressure. My mental illness literally went mental. I’m on the mend now, pills and therapy are my go to for the moment. And I won’t lie to you when I say that as happy I am to be on the mend, I feel shame that I even need it. It’s just that way I guess. Maybe especially because I am a parent and parents are not supposed to be this fragile.

My life now consists of going to therapy twice a week and taking anti-anxiety pills daily. If I start to act out aggressively in any way I usually get asked by any one of my lovely housemates if I have taken my pills today. That f’ing sucks.

But, in their defence, I do need my pills to keep my emotions stable. I really really do.

The great thing about this therapy is that it actually has a real hope of helping me. Giving me control over the stability of my emotions and helping me to understand myself better.

In a year, if successful, I should be as close to “cured” as they get (understanding of course that one is never actually cured but one can manage it without episodes for the rest of their lives if helped properly).

Man would that be nice. Especially as I have read the comment threads of children of mother’s with BPD who are now adults. Most of them have dis honed their mother’s.

My God. I can’t ever let that be my story.

So, for my children, for my hub, and certainly for me…

I go forth into this new world of therapy and self help. It ain’t easy. Actually – it’s really fucking hard.

Wish me luck.

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Why he wears pink

My little girl can walk into a toy store and be angry that there are “girl toys” and “boy toys”. She can argue the nonsense of girl sections and boy sections, and she will be looked at as a strong, independent, individual. Because she can play with anything and still be cool. Maybe she can even be “cooler” if she doesn’t conform to liking pink and baby dolls and barbies.

But if a little boy rides a pink bike to school, never mind that it is his fastest bike, or that he can do tricks on it. Never mind that his dad wears a pink tie sometimes or that his mother says “colours are not gender specific, people can like what they like”…his friends will make fun of him. They will ask him if he is a girl? They will say in teasing tones “do you play with baby dolls too?”

And maybe he does play with baby dolls too! But now, when he comes home and his mother is doing a sweep of what toys stay and what toys go, the beloved baby doll that he nursed at the same time as when his mom nursed his baby brother will be tossed, hesitantly, into the pile of “to go” toys.

He’ll start to test out these theories that boys don’t do “girl things” or like “girl toys”. And no matter what his mom and dad tell him, he will feel shame when he likes something he shouldn’t like. He will stop riding his bike, because it is pink.

Maybe, one day, when he’s older, he’ll realize that it is silly that he thought that way. That liking anything that might be considered a “girl item” would then make him lesser, weaker, “girly”. And when he is strong enough to be an individual and to remember his parents words “people like what they like, there are no girl things and boy things – there are just things” maybe he will start wearing pink again.

But until then it will be hard to convince this little boy that there is no shame in pink, or baby dolls, or even – dare I say it – being “like a girl”.

Enter Tig. This little dude wears pink all the time. In fact Tig LOVES pink. I mean he LOVES pink.

At the playground when he shoves himself into a group of little boys to see what they are doing and they twist around to wack him away, they always pause. Not sure if he is a girl because of his pink attire…and whether they can hit him or not.

And so, before he goes to Kindergarden and the awful shaming begins (and he starts to question his favourite colour) I am going to make sure that he gets to wear as much of his favourite colour as possible whenever he wants. When he gets dressed in the morning I let him pick his clothes, and by God, he would be dressed head to toe in pink all the time if I had enough pink clothes for him to do so. So before he goes to school and he starts to question his love of pink by the teasing of other little boys (and even the little girls and staff) who have also fallen victim to this hateful mind set of “girl things” – either by the influence of closed minded adults in their lives or simply by being aware and present in a society that separates boys and girls by colours and toys and sections – I am going to give him as much pink as I can.

Not just because I want him to be proud and happy in his clothing, and with his toys, but because his older brother is already in Kindergarden and it was his pink bike that he decided not to ride anymore, and his beloved baby doll that he gave away “because dolls are for girls mumma”. I want him to see his little brother being himself, a little boy who loves trucks and trains and pink.

And I also want him to understand that being like a girl isn’t an insult. That women are not weaker or less than.

But most of all I want him to know that there is no shame in liking things that typically girls are known to like, or any shame in wanting to be like a girl or feeling like a girl. There is no shame in being gay – that these words should not be used as insults! Girl, Girlie, Gay…And if he does than we need to examine what he thinks it means to be a girl and what it means to be gay.

If I can give my sons a voice that says “so what if I’m like a girl!?” Or better yet, if I can give them the strength to shoot back with “what’s wrong with being like a girl? Are girls bad? Is your mother bad? Weak? Less than?”

Then I will have done my job.

 Tig in a very awesome outfit. Boy knows how to dress.

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I’m Jewish, sorta.

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A friend of mine just wrote a great post about Interfaith families, well *her* interfaith family that is (check it out here), and all I could think was – yes! This. This is my family! (At least around the holidays.)

You see, we celebrate Hanukkah and Christmas in our house. And it’s fun, albeit busy and seemingly a never ending, yes – continuous – amount of holiday celebrating and organizing throughout the late part of November and all of December. But it is fun, and special to dedicate this time to being with our family. And I appreciate that my children are learning a bit about their Jewish heritage. A bit. Because as the Jewish parent, the mom (so yes, my kids are technically Jewish by birthright) I know very little about Judaism. In fact I know very little about any and all religions.

I am an atheist, and was raised that way.
Or maybe I’m agnostic, because though I am sometimes spiritually inclined, I do not (in any way) believe there is a God or higher power. Though at times I wish I did, because I am terrified of death, but anyway….

Because of my upbringing, I grew up celebrating Christmas in the most atheist/agnostic way.

It was: All. About. The. Presents.
Well that and tense family dinners complete with massive amounts of artery stopping, scrumptious, feasts.

Then, while I was still a young mom with only one child (so long ago) I was stopped by a Rabbi on Queen street while I was out on a date. The Rabbi asked if I was Jewish and I said, “no – not really” which created some curiosity and questions ensued. I explained that my mother’s mother was a Jew, but that she coverted to christianity after meeting my grandfather because his family (not him) was extremely predjudice against Jews (that and in addition to surviving the Holocaust as a child in a concentration camp was just too much for her to take at that point in her life). Of course, converting to Christianity did nothing to change their opinions of her…she was, after all, still a Jew.

But the Rabbi said to me “Well, my dear, you ARE Jewish!” and he explained that my Nana converting was not going to change that. He then handed me a small metal minora and some shamesh candels and sent me on my way to be, well, Jewish. That menorah sat in a box for many years in my basement, mixed in with our Christmas tree decorations and Christmas wrapping paper. I didn’t know anything about Hanukah, nor did I want to then. I was happy being an Atheist, proud even, and it felt (to me at the time) that celebrating Hanukkah was wrong. How could we do eight nights of presents without believing in Jewish religion (yes. I thought Hanukkah was about candles and eight nights of presents). How could we light the menorah when I didn’t even know which day Hanukkah started on! (This was before Google folks). So there it sat, at the bottom of our box marked “Christmas stuff” till one day Pups declared that she wanted to, and we should, celebrate Hanukkah. She had learned about the holiday at school and – through the incredible art of listening when we weren’t speaking directly to her – she had knowledge that she was, in fact, Jewish by birthright.

So, in the way that we celebrated Christmas, we did it – sans religious meaning and with no real clue of what we were doing, or why, we lit the menorah and gave gifts for eight days. Pups was loving it. First eight gifts and then more on Christmas Day. She had this holiday thing in the bag.

As the years passed, and we celebrated Christmaskah (or Hannumas) in our own way. We lit the candles, but there was no traditional Hanukkah food included, nor any prayers sung. And we broke our wallets giving eight gifts of Hanukkah and then doing Christmas shopping. Slowly I started to realize that perhaps I was doing this Hanukkah thing wrong. As if I was jumping in on something that I wasn’t supposed to be involved in. Like a man at a table of gay women claiming he too was a lesbian because he was attracted to females. There was common ground to be sure, but a man is not a lesbian. He just isn’t.

Side note: Yes, I realize that being an Atheist did not stop me from celebrating Christmas and that Christmas itself is *actually* a religious holiday, and I certainly didn’t feel guilty about that. *cough*. But Christmas wasn’t a religious holiday for me. For me it was a time to come together with family. To be especially generous and to believe in magic. It was tradition and spirituality mixed into one without the added God factor. And I admit, I love it.

But then something started happening. Without searching it out, information about this Jewish celebration started being given to me, in one way or another. At first I was unknowingly learning about the game of “dreidel” by overhearing a couple of co-workers chatting about it, and then I was told by a Jewish friend of mine that you don’t actually have to give any gifts at all during Hanukkah. That sometimes she did, and sometimes she didn’t. Seriously, she just sometimes didn’t! in fact she explained that Hanukkah (as opposed to Christmas in my atheist – but still lover of gift giving – eyes) was not about gifts at all!

Um…What the!?

“PUUUUUUPS!!”

Then we were lucky enough to be invited to share in our friends Hanukkah diner, and that changed everything. As her child sang the prayers before the candles were lit, and we ate an incredible amount of delicious latkes, I was struck with a feeling of something more. A realization that I could follow our own path within Judaism. That it wasn’t all about religion, it was also about culture, and tradition and community. My Aspie brain had always made it either black or white. I felt that without actually being Jewish in every way, everyday, we were not supposed to partake or to claim that we were Jewish. But something changed that night. I was struck with a sense of pride at my history and my culture. I decided that if we were going to celebrate Hanukkah, even as atheist or agnostic or whatever, we were going to do it right. Or at least as right as I could muster. So now, when we celebrate Hanukkah, we will also make the delicious food that comes with it. We read the stories, play dreidel with Gelt and nuts and we sing the prayers. And we don’t do it because we believe in God, or because we condone war and violence (The Maccabees against Antiochus), or because we believe in miracles because – the truth is, we don’t – we do it because we love coming together this way. Learning about our culture and our history. Celebrating our ancestors their dedication to the culture. Remembering that we come from a rich history full of trials and tribulations, but also of deep cultural traditions born from a community that stuck together and stood up for themselves.

Do we follow every single Jewish tradition? No. Nor do we go to church on Sundays or say thanks before every meal (though that one ain’t half bad and worth considering). But, every year we turn on the computer where we have bookmarked a page that has the prayers written out and includes a recording of a Jewish man who sings the prayers very slowly for the newcomers, the forgetful people, or any interested in these traditions (us). And in our way we celebrate the miracle of the oil that burned for eight days in the rededicated temple after the battle of the Maccabees and Antiochus.

Perhaps one day we will include more Jewish traditions into our household. We have started to read the stories from Jewish folklore and the Torah which has inspired in Bean a deep interest in Judaism. Perhaps she will be Rabbi when she grows up. Until then we attempt to work towards a simple goal: eventually knowing the prayers by heart and not having to listen to the slow monotonous voice of the Jewish man in our computer that leads us through the prayers…

Happy Hanukkah!

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This Is Autism. An interview with Bean.

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

This is how it went down:

>Bean, do you know what Autism is?

I don’t know
And I don’t really care.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

>Do you know which type of autism you have?

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

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

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

Yes. But I don’t know how.

(I explain some different methods of communication)

Oh. Ok.

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

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


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

>Ok buddy.

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

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

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

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

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

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

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

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

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

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

And this was when they were dealing with Autism.

Sorry, “Asperger’s”.

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

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

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

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

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

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

This did nothing.

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

Shame on me.

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

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

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

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