Wednesday, November 16, 2022

An Emotional Hobbit Hole: Where I've Been

Please enjoy the shot of last winter as I totally didn't have a good image to put at the top of this post.  Sorry.

The road of a special needs parent is not an easy one.   It is kind of hard to explain what happens over time.  You get into this weird headspace over time as you watch your child not hit benchmarks that other children are hitting.  You kind of go through the grieving process over and over and over again as the years progress.  When something really not great happens, you just deal with it.  You really want to lean on someone, to share what is going on in your life, but at the same time you have this extreme sense of subconscious guilt.  There is always someone who is worse off than you are.   There is always a parent you see in the store or in passing where you realize just by looking at their situation that you have 100% nothing to complain about because your situation could be so much worse.  Then you feel worse for feeling bad that this or that happened and you just kind of clam up and just try to keep stoic and strong inside.  You watch people with kids who can do more than your child can and you want to cry some days, but there is always that voice saying, "It could be worse" and you just keep taking one day at a time, working with the limitations your child has been given and you do the best damn job you can by that child and loving them.  You celebrate THEIR successes, ignore what others do, work repeatedly to help them get past as many limitations as you can and you pray every night that maybe, by trying something new that God will help you find that you can get your child to a point they can live a somewhat independent life.  

It is the parent's way.  

Sometimes, though, things happen that just pull the rug out from under you and you feel like you are trying to keep your feet in quick sand and it just takes all of your emotional and physical energy to cope.  That's where I had to go this last month.

The new medication changes with Alvah were a mistake.  A bad one.  Alvah seemed like he was doing pretty well on lower doses of the new meds, so the doc and I talked about it and we decided to up his meds just a little bit to get him into a good spot and hopefully get his sleep patterns normalized.  What ended up happening was my son going completely off the rails when we upped his med, and I mean completely.  It is the worst he's EVER been and that was a bar I hoped to never have to surpass.  He punched holes in the walls of his room when you had to do something like drink a few sips of water or go to the bathroom and he started to eat the drywall after he had punched the hole.  His self harm went through the roof as well as him hitting other people.  I, in all honesty, was scared to death that I was losing him to his autism and I didn't know what I could do to help him.  I, as quickly as I could safely do, got his medication back down to really low levels, but it did not help.  I finally didn't give him any medication for 12 hours and then started him back on the Risperidone and Clonodine like he's been on for years.  That stopped the severe violence.  Thank God.  My husband, myself and my daughter felt worn torn after that long weekend...I can imagine how poor Alvah felt.  I still can't believe it was just a few days.  It was more than enough, though.  Since then, it has been a long month of getting his Risperidone where it needs to be, trying to get him sleeping okay (for him) and trying to come off of one heck of a adrenaline high from his erratic behaviors.  

He's getting better.  Thank God.  It is slow, though, as we need to get his bio chemistry leveled off and back on an even keel.  I started giving him a topical melatonin supplement that I just rub into his skin the morning and that has seemed to be helping, along with his roll on magnesium supplement I found.  I've been working with his swim teacher, a family friend, who has taken a bunch of different nutrition courses and things and has worked with special needs kids and adults for years and she's really been helping me to figure out more creative ways to try and get him some nutritional needs to help him as much as we can through non-medication means and help to level his mood off that way.

My husband spent a good week running around town trying to find enough wood paneling to hang in Alvah's room so we don't have to worry about him going through a bad pica phase and eating more of his walls, which was fun with the supply chain issues going on.  We finally have enough to get it done, so my husband is hoping to work on that starting this coming weekend.  

But, yeah, it hasn't been a good time.  

I'll report more on day to day things around here in the next post.  Honestly, just writing all of this out kind of exhausted me.  I'll get back to blogging here soon.  I just need to start getting caught up on everything around here so I have something to report.  So, stay tuned.  Hopefully the next post I'll have better news to report.