Autism and illness. Parenting in the blind.

“What’s wrong little man?” I asked, as I skillfully dodged a punch that had purpose to it. I looked up and saw pain in his eyes, remorse even. He didn’t want to do that to me, but something I did or said at that moment caused him pain.

We’ve had a difficult few days this week. Kiddo woke out of sorts over the weekend and I immediately knew he wasn’t right. My mummy instinct kicked in. The atmosphere was different, the way the air hung around us was different. I did what any parent would do, and I asked kiddo if he was ok.

He struggles with verbal communication a lot of the time, but when his body and brain is focused on something else, like tiredness or illness, his limited speech gets swallowed up by confusion. By emotion. He can only express himself with body language.

I could see that his body was holding a different posture. It was no longer one of confidence to face the day. It was shrunken. It was defensive. When I asked him what was wrong, something in that moment caused him pain, and he lashed out. I waited a moment or two and just silently held my arms open for a cuddle. And we embraced. Kiddo was under the weather.

I find these times some of the hardest for many reasons. Questions such as “where does it hurt?” or “do you feel sick?” have no purpose in this house. They achieve nothing but frustration for kiddo, as he so clearly wants to tell me. Yet he can’t breakdown or understand my question. He cannot answer.

Kiddo’s extreme sensory difficulties mean that I can only take a temperature when he is asleep with an infrared thermometer that does not touch his skin. You know you so often see mums who are able to take a temperature by just using their hand? Did you ever ask yourself how they acquired that skill? From years of feeling a forehead and then taking a temperature. They have a bank of experience to draw from. I don’t. I have to judge whether or not kiddo requires medicine from the touch of a hand, and hardly any experience of being able to back up my guess with a factual figure, with an actual temperature. It’s not easy.

Calpol is my first action, always. If he visibly responds then we are on to a winner. If he doesn’t? Well, here’s an example…

Kiddo and I were at home one afternoon. He was almost 3 years old and we knew he was autistic. The change in him came on suddenly. He slowed right down, stopped playing and looked visibly pale. He wouldn’t open his eyes. At this time kiddo had almost no verbal communication. No non verbal communication either. I was in the dark on everything. I felt his back and it was clammy. His eyes weren’t focusing. Calpol had no effect. I called an ambulance. I had no time to deal with doctors who would ask me lots of questions about his temperature and what was hurting or how he was feeling. I wouldn’t be able to answer any of them. I felt such a fool calling 999, but I had no choice. How could I possibly risk it? The paramedic came and checked him over. He was indeed very ill. On this occasion it was a nasty virus, meningitis was ruled out. That was my ultimate fear. I apologised to the paramedic for wasting his time. I was consumed by guilt that there might be someone else out there who was in a life threatening state. He replied, “but it could have been you. You couldn’t have known”. On this occasion the professional was kind. He understood the challenges I faced. But they aren’t always as understanding. And I don’t blame them with the workload the medical profession have to deal with. But understand this people, I’m an overprotective mother when it comes to illness for a reason.

Because there are no early signs for us. There are no, “mummy I don’t feel well” conversations. No, “mummy my eyes hurt” or “I feel sick”. It just happens, no warning. I have a split second to decide. Emergency? Or just virus? And I every time I play it safe. Because the consequences of not are just too disastrous to even consider.

As kiddo has grown older his symptoms are much harder to spot. His ADHD doesn’t back down when illness hits. He still runs and moves from place to place, often only stopping for a few seconds. It’s an amazing disguise, it’s too good a disguise. And it scares me. I’m having to crank my mummy instinct up a notch, I wonder if there is an advanced mode? If there isn’t, then I had better design one. And fast.

Thanks for reading,

Danielle

3 thoughts on “Autism and illness. Parenting in the blind.

  1. After 24 years I feel pretty confident in saying you will learn what is what pretty quickly. In the meantime you have to forget about what “they” think as they aren’t in your shoes. The adhd adds another problem certainly but Oliver is the same, it’s rare for him to slow down even with a raging fever.
    We found that playing doctors, with a plastic medical kit where everyone regardless of ability got to poke and prod mummy was a huge help as was Get well soon on CBeebies.
    Oliver isn’t very verbal and if he hurts he won’t let you look. Max is harder, he lashes out and that’s the first I know of pain, but I can tell by look if he’s under the weather and touch if he has a temperature. They are skills you pick up over the years
    You can’t know everything, you just do what’s best for your child every day. And you do. X

    Liked by 1 person

  2. My girl just started taking oral medication six months ago. She just turned 8. She had taken it when she was an infant and toddler, but she doesn’t get sick very often (thank goodness) and at some point she just decided that she would. not. take it. Our solution was to get a topical ibuprofen from a compounding pharmacy. Our insurance didn’t cover it, but thankfully we could afford it. And that’s all we had for about five years. I’m so grateful that she didn’t need antibiotics or antivirals in that time!

    People would say things like, “Put it in her food” or “put it in her drinks.” Well, she only drinks water, not even juice, and when she’s sick is the one time that’s not a positive habit. Because she could taste it. There was no masking it for her. So I’m very glad she’s changed her mind on this.

    We know our kids. We have to. And other people’s approaches aren’t bad, but they don’t necessarily work for our families.

    Liked by 3 people

  3. I can relate on the limited communication end. Our 3y/o can’t even tell us when he’s tired. We frankly don’t know until the minute before he passes out. He had a spring concert at school the other day and ended up slapping his teacher on stage. I was embarrassed for a split second but then I just felt like a horrible parent for not knowing he was too tired to participate in the first place.

    Good vibes your way always.

    Liked by 1 person

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