Hayden Makris Update (San Antonio, TX)

We will be following up with the children as they titrate off the medication and resume life without it. This is the first update to Hayden’s story, see his original story click here: Hayden Makris.

We are about a week and a half without STX-209.  Well life in the Makris house is definitely different.  Not as different as I was thinking it would be, but different just the same.  We are seeing a lot of changes, some good, some not so good.  Hayden’s impulse control seems to be gone.  It breaks my heart to see him struggle so hard with it.  It’s almost as if he knows it not right but he can’t do anything to stop it. He will lash out at me occasionally and then say “mom, I’m sorry, I’m so sorry”.  It kills me. Cynthia  seems to be getting the brunt of it.   He is pinching and pushing her if she bothers him.  Let’s be honest she is three and a little sister so she bothers him a lot.  Most of the time its on purpose and frankly often she has it coming.  He hasn’t “hurt” her at all but it is a little rough.  It catches her off guard, she’s not used to it.  She didn’t know Hayden before STX-209.  She is taking it in stride though.  I’ve talked to her the best I can so that she will understand what is happening.  She so compassionate and loves him so much that she just seems to understand.  I wouldn’t call it  aggression it’s more of just agitated and it never really hurts anyone it’s just there.  I am praying we can find something that will help with agitation and lashing out.  Hayden has never been aggressive or mean and my goal is to keep it that way.

His anxiety is higher than it has been.  He is having a really hard time with transitions again.  Even small ones within our house.  For example the other day we were finishing up breakfast and transitioning into our summer homework time and he had a slight meltdown.  I had to talk him through what to do step by step. I’ve heard it called getting past the threshold and that is the best way I can describe it.  He needs extra time and prompting to do some of the most basic tasks.  He needs that little count down or a nudge from me to know its okay to move to something else.  Once we do that and he gets on to the next task he is completely fine.  I just have to remember that we can no longer rush anything.  We have to take it slow with a lot of patience.

One of the first things we noticed was how much he is repeating nonsense phrases and gibberish.  Just sitting there mumbling a whole lot of nothing or moaning.  I really did forget how bad that used to be.

On the plus side he is talking in full sentences like crazy.  He is answering all of my question with more than just a yes or no.  He is adding his own phrases and opinions more than I have ever seen.  Today at lunch I pulled out chips and asked “Hayden do you want chips” he then replied “Yes, not those, I want these chips” and got the ones he wanted out of the pantry.  Hello, yay Hayden you rock and you can have whatever kind of chips you want.

We seem to be holding steady where we are right now.  I am ok with that.  I was praying first for no change.  I was so afraid we were going to lose him.  That he wouldn’t stop talking and no longer have his own opinion and little attitude.  We most definitely did not lose any of that.

I’ve had to change the way I parent.  I am not complaining about that.  I wasn’t liking the mom I was becoming.  Stress was ruling me more than I care to admit.  We’ve had some reality checks over that last few weeks so I am trying to change the way I am handling things.  I am yelling less and loving more.  I am over looking the little stuff.   I say “I’m sorry” when I lose it.  I am taking moments to calm down before I react.  Most importantly I’m holding tight to and feeling blessed for this life God has given me.  I don’t ever want to take it or my children granted.  I am sure I would have come to this realization eventually but losing the medicine and a few nudges from God have made it happen a lot faster.  For that I am grateful.

Hayden