Self-Regulation

Life has settled into a steady rhythm here, but it’s been one of management, not progress.  We’re making it through the day but not much more at this point, and it’s time for our family to take a breath and hit things head on again.

We had an excellent meeting with Michael’s RDI consultant last night, and we are working hard to find step one in his autism remediation.  Right now that seems to be self-regulation.  Michael is brilliant yet trapped in his own world thanks to the autism and almost completely without windows or doors right now thanks to his sensory processing disorder.  His brain will just not leave his body be, and the last week or so has been marked with his inability to sleep and his body’s sensory seeking behavior (crashing into things, screaming at any type of sensory input, the need for heavy muscle work, the complete lack of personal and physical boundaries).  We did go back to the doctor, and I’m hopeful the current treatment will significantly help but it still has not taken it’s full effect, and in the meantime, his brain seems to be struggling to find balance.

Our goal is to ultimately teach his brain and body to self regulate.  Our first method was a good start, but like with all trial and error methods we didn’t quite hit the mark with our first attempt, and now we’re adjusting our technique.  We’re working on separating problems of compliance from problems of self-regulation and attempting different approaches for each.  Again, it’s hard work that will most likely take a long time, but I’m excited at the prospects of watching him progress again.  I don’t like the plateau we’ve settled on or how long we’ve been there.

Is something in your way?  Does overcoming it seem hard or that it will take too long?  Crash into it anyway!  The prize at the end will be worth it!

 

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Year 3

So this is a little late in coming, but I wanted to make sure I properly celebrated Gabriel’s birthday here on my blog.  He turned three about two weeks ago, and this past year has been quite the accomplishment for him!  He really has come a long way.  He can now speak well enough that I can understand a lot of what he’s trying to say.  He likes to climb up on things and jump off, do play dough, listen to music, and take naps.  I can see that I really cloned myself with him.  Not only does he look so much like my baby and childhood pictures, but he has the same crazy, evil doctor movie laugh that I did, is completely moved by music the way I am, and seems to have that wild, passionate temperament that can easily swing to extremes in all directions that I do.  He’s been working hard to overcome his limitations, and I’m very proud of him.

I decided to sneak him out of the house for some birthday ice cream on Mother’s Day.  Going out for ice cream seems like it should be a normal part of one’s childhood, but since Michael can’t have dairy it’s been something we’ve had to forego as a family.  I figured I could get away with it with Gabriel since I could call it a birthday treat, and he can’t talk well enough to tell Michael where we went.  Besides, they were selling Mommy ice cream cones at Stewart’s for only $0.50 on Mother’s Day so it seemed like a win all around.

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The birthday boy and his excited date!

The ice cream made that kid’s day.  I ordered him some chocolate of course, and he went to work in that cup like he was born for it.  He was happily shouting hellos and goodbyes to everyone that came in and out of the store, and marched up and down the seat of his booth singing “Jesus Loves Me” at the top of his lungs.  The ice cream was so firm he had trouble scooping it out by himself, so I had to help him a bit, but he was in little boy heaven.  He’s already falling so fast into that overlooked middle child spot at home, it was really nice to just have that moment with him and see him enjoy himself.

Happy birthday to my beautiful Gabriel James!   Your name means God’s messenger and champion, one who brings about change.  I believe you’re going to grow to fulfill every word of that.  Mommy loves you so very, very much.

Shaking Off The Heaviness

I absolutely did not mean to drop off the radar for two weeks, it just happened.  God knew though, and He prepared me by having me write that last post about fear.  Within a few hours of me finishing that piece, I found a tick embedded in Gabriel’s head.  Chronic Lyme’s Disease has affected me and my mom, so that’s something that can strike fear down in my core immediately.  By that night, Gabriel was sick and feverish with something I believe was unrelated to the tick bite, and after he spent the night in our bed because Michael was screaming and kicking the walls in their room, I was sick too.  I remained sick for the entire week and tried to conduct interviews over the phone for a new special instructor for Gabriel while coughing and trying to cover up the sounds of the complete carnage my kids were creating whenever I was on the phone.  One day they threw so many toys down the stairs while I was on the phone that Gabriel’s therapist couldn’t even make it in the house till we shoved some things aside.

This past week started off with a very disappointing meeting with the school district regarding Michael’s services for the fall.  Not only were they playing me with their attitudes, but they were pressuring me to put Michael in school, and they refused to pay for the one service he really needs while offering me multiple services I did not want him to have.  It made me so angry it actually took me a whole day of tears and mental arguments to get over it.  The intensity of my emotional reaction surprised me, and I had to remind myself that Michael’s help is not in the school district but in the Lord.  He is going to open and close all the doors we need Him to for Michael’s remediation.  I am now praying that God shows me the next step, whether or not to battle the school district or to leave this one alone.  If I do choose to pursue this, it looks like I will need to find a pro bono lawyer, and I don’t know if this is a road I want to go down yet.

On the upside, I had my first invitation to speak to a women’s group this past Friday, and shared the book Captivating by John and Stasi Eldredge.  It was very exciting, and I got to tell women about this fantastic book (really, if you haven’t read it, you should!) and give some of my own personal testimony about all that God has brought me through.  While it was a new and overwhelming experience, I really enjoyed it and wouldn’t mind doing it again some time.

It’s been a very intense and emotionally packed two weeks.  The kids were spiraling out of control with health issues and we were finally able to get them to the doctor.  As a result, they’re actually sleeping again at night, much to our relief.  I hope they balance out and keep it up!  Thank you all who prayed for me and let me rant about all the frustrations of the past few weeks, you are all truly invaluable to me!  I’m trying to shake off all the heaviness and weariness I’ve been enduring and move forward into this coming week, trusting that God is holding it all in His hands, no matter what it has in store.

What I Dreaded Has Happened To Me

I love it when God breaks into my existence and rescues me from myself.  I seem to need it a lot, and He gave me a much needed word in church this weekend.  It was Youth Sunday, and I enjoyed watching all the young people using their talents to bring glory to the Lord, and at the end, the youth pastor spoke to us parents about fear.  He told the story of Job, of how he was a great man, in wealth and integrity, and then of his demise and how he lost everything, including his children.  What hit me was when he quoted Job 3:25.

“For the thing I greatly feared has come upon me, and what I dreaded has happened to me.” 

See, I’ve been living in fear again.  It happens a lot.  Despite the fact that God has provided for and encouraged me every step of the way along my children’s health journeys, it seems that all I need is to see Michael regress or hear a new diagnosis for Gabriel, and I’m there all over again, setting up house right in the middle of fear.  It’s one thing to have a concern, to let a negative possibility drive you to overcome and conquer a thing, but it’s another to let fear run amok in your mind, to take over your thoughts and bring you to paralysis.

The last few weeks have been difficult and taxing.  Michael has been sliding backwards again, and this time he’s becoming violent.  It’s hard to watch and hard to deal with, and it’s taking a physical and emotional toll.  I had always assumed that Gabriel would naturally grow out of his limitations, but I just had the talk with his therapist that there’s a chance his brain may not fully recover from the damage the scar tissue created.  I’ve been carrying these thoughts around in front of my face, and they’re blocking my vision and not letting me see beyond them.

It’s times like these that I allow myself to get sucked into a storm of all too familiar questions.

What if Michael doesn’t get better?  What if he continues to be violent when he’s older and bigger and I’m no longer stronger than him?  What if he’s never able to be an independent adult?  What if Gabriel’s brain doesn’t recover?  Will he always be slower than everyone else around him?  Will he be able to function on his own?  Will William have to care for his older brothers?  Will he resent having to care for his older brothers?  What’s going to happen to the boys when Nate and I are gone?

It doesn’t seem to matter that God has reassured me over and over that He’s going to take care of all this.  It’s physically in front of my face day after day, and sometimes my faith wanes and I can no longer see the future that I feel God has promised me.  That’s what I let fear do to me, and it happens more often than I’d like.  I always used to be amazed at how often the children of Israel would whine at Moses while they were in the desert, how often they would forget all that God had done for them, sometimes almost instantly.  And yet, I can see how I do the same, letting the reality of what’s in front of me dictate my level of faith and my attitude and causing me to forget the greatness of God.

Thank God, that’s not where the story ends.  Our youth pastor went on to redefine fear, a holy fear.

 

The fear of the Lord is the beginning of knowledge, but fools despise wisdom and instruction.  Proverbs 1:7

In the fear of the Lord there is strong confidence, and His children will have a place of refuge.  Proverbs 14:26

The fear of the Lord is a fountain of life, to turn one away from the snares of death.  Proverbs 14:27

The fear of the Lord leads to life, and he who has it will abide in satisfaction; he will not be visited with evil.  Proverbs 19:23

By humility and the fear of the Lord are riches and honor and life.  Proverbs 22:4

 

This is the fear God wants us to have.  A holy fear that acknowledges Him and His role in our lives.  The kind that brings life.  The fear of God and His holy awesome power has the ability to block out the things in front of me and let me say,

It does not matter what I see with me eyes.  My God is greater, and my God is good.

I know that I’m human, and I’m going to need to be reminded of this all over again, that’s why I’m writing it down.  But I am eternally grateful that our God has a limitless supply of forgiveness and love, and He’s not ever going to get tired of rescuing and redirecting me.  I know I can trust Him with my children because His plans for them are good and to give them a future and a hope.  And when things look bad all around me, I know I can say:

Yea, though I walk through the valley of the shadow of death,
I will fear no evil;
For You are with me;
Your rod and Your staff, they comfort me.
You prepare a table before me in the presence of my enemies;
You anoint my head with oil;
My cup runs over.
Surely goodness and mercy shall follow me
All the days of my life;
And I will dwell in the house of the Lord
Forever.