The first few years of Amy's life was mainly characterised by inconsolable, un-explainable, chronic distress.
We got the usual unsolicited advice from anyone and everyone. "Babies cry... it's what they do!" and so on.
Time and time again we would appear at our local hospital unable to cope with the level of upset Amy was exhibiting.
Back then it was largely attributed to reflux and on other occasions, muscle spasms. Reflux and muscle relaxant meds would be continually introduced, and doses increased up and up.
A year or so on from that we look back on those days and wonder how on earth we got through it.
I wanted to slap any person who told me "it gets easier" or "it's just a phase", I thought we were different.
Fellow special needs parents on the forums would assure me that the crying does calm down and the sleep does improve sometimes. They were right, I was wrong.
Always a tough pill to swallow but I am glad they were right and I am here now telling anyone at the start of the journey - it never gets easy, but it does in fact get easier.
Either the child changes, or how you respond to the stressors in your life changes. You will become more resilient than you ever could imagine.
You may still need a high dose of anxiety medication, you may need respite time, you may need to walk off the stress and remind yourself over and over "breathe. Deep breaths. Count to ten." but you'll do it.
Why is she doing this however is still very much a sentence I find myself repeating to this day.
The reasons for crying have changed. We recently had a pediatric appointment and were told that a lot of Amy's new behaviours require the assistance of the "learning disability behaviour team".
This new issue doesn't involve adding medications, it involves watching her behaviour and my response to it.
You see, every night at the moment and I mean EVERY night... we have a 1-3 hour long battle to get Amy to calm down.
From the moment you lift her to take her to her bed she starts hitting and kicking wildly in an attempt to make it known that she does not want to go to bed.
We have tried keeping her up later but we find the anger starts regardless and that the best place for her is the safety of her bed.
This has gone on now for a few months and her respite team agree that she is indeed lashing out with arms and legs and "attacking" whoever is caring for her.
I totally understand it from Amys' point of view. A neurologically typical child her age may run away or start the "I'm thirsty, I'm hungry, I want a bath, I don't want to go to bed" and so on.
But Amy doesn't have this option. So her only way is to scream and thrash.
There have been nights I've stood outside her room doing the whole "controlled crying" thing. I've silently stood there weeping trying to keep it together.
No child should have to scream and cry themselves to sleep every night but unfortunately at the moment this is our reality.
Before my reasoning for her crying would be digestive issues, muscle spasms, neurological irritation, boredom and so many things.
This would appear to be an actual age appropriate toddler tantrum.
You'd think melatonin, baclofen and gabapentin would tire her out even more but she still manages to maintain the same level of rage for a good few hours. It is soul destroying.
Once asleep she looks an absolute angel, until midnight or 2am when she wakes up to cry again. "Why is she doing this?" I wonder to myself at 2am.
Closely followed by "I wonder when her next overnight respite stay is!"
It concerns me sometimes that what if this age appropriate tantrum stage doesn't get outgrown. What if this continues on into later life?
I have to hope that this new intervention from the behaviour team will teach me new ways to help her and all of us.
Is there anyone else out there wondering why is he/she doing this on a constant basis?
I think I spend the majority of my days trying to anticipate her wants and needs and gauge from her sounds and expressions what her feelings about it are.
We had a trip to the farm yesterday and she made it very clear that she didn't want to sit and wait patiently like the other children. Why is she doing this I wondered.
Once she had her music on she calmed down a bit but it does make me sad that she can't always enjoy things without constant background music.
However, I stand by my statement... in spite of all of this... it gets easier!
Breathe in, breathe out.