Just Another Day

Lately, almost every waking moment I spend wondering if I'm really cut out for this challenge of raising a child that was born with a biological brain injury. Everyone keeps telling me that we are doing an amazing job with her. Even the team of professionals that diagnosed her three years ago was amazed at how well she is doing, considering her test results.

If you're standing on the outside of this intense relationship looking in there's a lot you'll never notice. Most people don't believe me when I say she has a severe developmental disability.

They don't see an IQ of 69. She hides it very well, she's a master at masquerading as brilliant. She never skips a beat. She'll regale you with tales of conversations we've had and things that she's learned or done. You have to listen very closely to catch the flaws. It's not that she lies... sometimes her brain just perceives things differently, or not at all, and it fills in the blanks with whatever it figures fits. Sometimes her brain doesn't even register pieces of time. They call it confabulation. It's just one of the many symptoms of FASD.

I can't correct her. What her brain is saying is gospel truth. No matter what I say, I don't know anything.

When our local schools shut down last year because of Covid, we made an important realization. It was something that J's diagnostic team had eluded to in our diagnostic meeting, but it still came as quite a shock. They had told us that, in light of her test results, we shouldn't worry much about her academic performance. Instead, we would need to spend our time and energy teaching her life skills. She has a small chance of being able to live relatively independently as an adult but will require some important accommodations. The key to her happiness and success will lie with us figuring out exactly what help she will need before the time comes for her to leave home.

'The team' also said that as she gets older her condition will continue to worsen. Typically, the brain grows and develops until we are about 25 years old. Children with FASD are born with areas of their brain underdeveloped, sometimes they are even missing altogether. As the rest of the brain grows, these areas remain stunted or non-existent.

The inner workings of the human brain run far beyond the realm of my poorly educated understanding. I know it is the root of our entire existence. I've read that average folks don't even use 10% of their brain's capacity.

I have my own neuro-divergent challenges and I can empathize somewhat with her frustration. In reality, though, my ADHD and OCD don't hold a candle to the misfirings that occur in her brain. At least I can be open-minded and look at alternative means of getting things done. I don't get stuck on 'I can't'. Once I grasp a skill, it sticks.

The differences in our divergencies can make us feel like oil and water. I need time, peace, and quiet to work through our challenges. She thinks I'm stupid when I have to sit down with a problem, go back to the beginning and review each step. I'm only trying to figure out what tiny detail she's missed, or perhaps if we can find some way to make the task or problem easier for her.

When I tell her I just need a few minutes to myself to think, she reads it as meaning I wish she wasn't here. It turns into a full-blown emotional crisis. She's feeling despised and I'm just trying to teach her how to get by. She screams, and cries, apologizing for not being 'perfect'.

She can't grasp the idea that I don't expect perfection. A little bit of respect would be nice. Realizing that faking it isn't always going to get the job done and sometimes you need to let someone who knows, show you how it's done would serve her well. Instead, she charges headlong into whatever she's trying to do. Then she's devastated when things don't work out the way she thought they would.

Outsiders see a bubbly, confident, exuberant teenager. I listen from the sidelines and can't help but wonder what they think when she starts talking about her detailed plans to catch Santa this year.

I spend my days constantly on high alert. I'm always watching for the steps she's missed, or the things she's misunderstood. I'm the translator, that has to make sure that she grasps what people are saying. I'm the one that has to be on standby, to make sure tasks are broken down to include every single step or to explain that sometimes what people say isn't always SO literal.

I end up being the target of her rage and anguish when things don't work out exactly the way that she expects. I am supposed to hold the magic key that makes everything work out and allows her to shine brilliantly... even when she refuses to listen to me.

It's exhausting and I really don't know if I'm cut out for this. I have no choice though, but to get up each morning, take a deep breath and brace myself for another day in the trenches. I murmur a quiet prayer, that she will feel loved and secure and that we will make it through just one more day without her turning to something dangerous.