I’m not sure how to write this post.
I’m not sure that I want to.
This blog was supposed to be solely about Asperger’s really. Asperger’s in girls. My suspected Asperger’s and Bean’s actual Asperger’s. And then it evolved, and that was good, I want to talk about our whole family. I want to share how my conditions affect me and affect my family. How we all connect with ASD on some level, whether directly or indirectly, and how we all connect with each other with all our individual conditions and personalities. And then it grew even more, now we were exploring (and learning) about Bear perhaps having Asperger’s, or what – we didn’t know.
And that was good, and it was fine. I can work with that.
But now it is taking a different turn. A turn I have never ever considered or prepared myself for. A place I find numbing and terrifying. A place that my only real reference to, is death.
Type 1 Diabetes.
Bear has just been diagnosed with Type 1 Diabetes. The ironic thing about this is that, when we were first discovering that Bean has ADHD and AS, one of the things said to us often by Psychiatrists and ASD advocates or individuals (about “labelling”) was “you wouldn’t say person with Diabetes, you would say Diabetic”. And I agreed. The conditions we have are part and parcel with Bean and I. And labels don’t always have to be a bad thing.
I don’t want to say Bear is diabetic, or a diabetic, or a person with diabetes.
I don’t want this to be part and parcel with him. This isn’t the same to me as the conditions Bean and I have. I can handle AS and ADHD. I can handle BPD and MDD and GAD, I have those conditions, I understand them, or at least – I live them. But I don’t understand diabetes. And yes, I know I will. I know they will coach me and we will live differently and it will be hard, but manageable. I know these things. But in the deep dark part of my mind that I don’t ever want to go to when I think of Diabetes, I think of Shelby from “Steel Magnolia’s”. And when I tell myself that was just a movie, I remember my friend. My friend who used to watch over Pups and make giant red wax-lips for Pups out of the wax covers on ‘La Vache Qui Rit‘ cheese. My friend who died in her apartment after slipping into a Diabetic coma. And I panic a little, my heart pounds in my chest and my throat begins to close. No matter how much I tell myself that he isn’t her, that she did not have a close relationship with her parents or that she drank excessively. No matter how much I remind myself that I don’t know how his life will turn out, but that giving him the right tools and support will help him.
Still I panic. Still my hands shake and I can’t sleep.
At least we can be thankful that we caught it when we did. Bear had been urinating frequently for the past 3 or 4 weeks. He was having accidents during the day and even more during the night. It wouldn’t seem like anything to be normally concerned about in a typical 4 year old – except that Bear had been completely dry, day and night, since 2 and a half. So I noticed and I Googled. I came upon a page that said that more often than not, children at the ages of 4 or 5, will hit a stage where stress affects them more strongly than it did before and they may start to have pee accidents more often. I thought: that makes sense, he hates change and there had been some changes going on over the last little while like taking him the the ASD clinic to be assessed. But then when I really thought about it I realized that the time frames didn’t match up. His frequent urination started happening before we got him assessed. And he wasn’t just peeing a lot, he was drinking a lot too. Like: A. LOT. It seemed as if he could never quench his thirst. If we denied him any water because we were trying to monitor his intake before bed (to avoid him wetting the bed), he would meltdown. As if he was addicted to water. This from a little boy I used to have to remind ceaselessly to finish his water at dinner.
He was also way more relaxed than usual. I was convinced that they would see ADHD at the ASD clinic, at the very least, but while we were there he couldn’t have been more chill. It wasn’t like he was overly tired all the time, because he wasn’t, it was that he was just the right amount of energy. It convinced me that I must be wrong about him having ADHD. After all, where he used to watch movies upside down on the couch, now he was laying down flat every chance he got. On the flip side, though he had less energy, he was quicker to set off and he would become quite violent when he was having a tantrum. I figured all of these changes were happening because he had gotten to an age (4 years old) like Bean did, where he was starting to show a flip in his personality due to having a condition. I thought that condition was Asperger’s, it had to be because of his impulsivity and sensory issues, right?
Little did I know.
I spoke to a few people about my concern about him suddenly peeing his bed, and they all just related it to a normal developmental stage that I should not concern myself with. After reading about how it could be exactly that – a developmental stage in his life – I agreed that my concern was likely unfounded since I have a tendency to go overboard and become paranoid due to my anxiety.
It wasn’t until the Doctor at the ASD clinic asked me to have Bear’s intense thirst and frequent urinating checked out at our paediatrician’s office – “just to be safe” – that I reconsidered my original concerns. Except…I thought it was perhaps a urinary infection or a regression thing.
So I decided to take him into the Dr’s office to have his urine checked. I wasn’t worried. Feeling sure that they might just jot this down in his file as “mother is concerned about frequent urination, suspects a phase or bladder infection link”.
They didn’t jot this down. I’m not sure they jotted anything down.
What happened after his urine was tested is a bit of a blur. The doctor came in quite quickly. She stood close to me, perhaps ready to catch me incase I fell. She explained that his sugar levels were extremely high and that they needed to check his blood sugar level. That they thought he might have Diabetes.
I almost fell.
I asked what else it might be, desperately hoping the alternative would be something benign, but she said there was no alternative and they were sending us immediately to the Children’s Hospital for further testing. She explained that his blood sugar level was over 20, where – in a child his age – it should be at 6 or 7. My lunges seized up. But I couldn’t cry, he was right there, right beside me. I held it together – I’m not sure how. The Dr. told me how lucky we were to bring him in to have him checked and that he wasn’t sicker than he was. Sicker? What did she mean? He’s sick?
(Yes, Kate, sick. His Pancreas was no longer producing insulin. It didn’t work anymore.)
Immediately we were whisked off to the hospital and there the testing began. He had his blood sugar tested again and an IV inserted. He was not allowed to eat (which was just about driving him crazy) nor was he able to leave the room. I started to wonder just how sick they thought he was? Still holding onto the hope that this was something different and not Diabetes. They asked me about my other children – do they have any autoimmune disorders? I told them about Pups’ Guttate Psoriasis and Bean’s highly suspected Celiac. They nodded while jotting it down on their form. What did this mean? That I held a gene that was giving my kids autoimmune disorders but that had spared me!?
I asked them what else this could be. They gave it to me straight – it could be nothing else, he has T1 Diabetes.
I swallowed and held my breath.
But what will the blood tests tell us – what was the chance that they were wrong?
No chance, they replied. The blood test weren’t to confirm it, they were tto see how far into DKA he was.
Type 1 Diabetes was confirmed.
Again I held back the tears as fear and worry swallowed me up.
My little boy.
I was in shock.
As if in a haze I desperately tried to listen while they explained that our lives were about to take on a drastic change. About how we are going to have to go in and out of the hospital till we are able to manage on our own. How we were going to have to attend many full days of coaching at the hospital on how to administer his medication and monitor his blood sugar levels. The Doctor said some words like “optimistic” and “dangers”, “watch for shakiness, not being himself” and “manageable”. I was struggling to ‘get it’. Could this really be happening? Would I eventually wake up from this strange nightmare?
The hub looked beat up. His air about him downtrodden. I fell into myself trying to connect the dots and reconfigure it all to mean something other than what they were saying it was.
The possibility of a high functioning ASD or ADHD were now far from my thoughts. Thoughts of diet, needles, coma, death all rushing around my head and had taken over.
I finally cried on the way back home from the hospital after we were finally released (while Bear slept in the back seat), exhausted from this strange and stressful day. It felt good to cry. When I came home Pups cried as well and that helped too because now I had a chance to say what others were saying to me: “it’ll be alright, we can handle this.”
And it will be alright, it must. And we will handle it, we must.
So today we head off for our first “Diabetes Day Care”. And it will be alright.
Extremely thirsty little boy in hospital.