Getting Ready to Jump

Yay!  My amazing husband fixed the laptop issues I have been having for quite some time now.  I could get it to work, but it was annoying and sporadic.

Chi and I went to visit an occupational therapist yesterday for an assessment of Sensory Processing Disorder.  He had a broad range of sensory processing issues with some of them being very acute in certain areas of touch and auditory processing.

I have a lot of feelings about all of this, but what matters is what he needs from me now.  I couldn't believe how he could go from arching his back and flailing to calm and easy with some of the techniques she was using.  I am being trained to use a "Thera-brush."  For now I brush his arms, legs and back as much as every 2 hours.  I also stretch certain joints for 10 repetitions.

She gave me lots of pages of ideas to go ahead and try out at home.  She recommended a back pack for him because the weight will help.  She also recommended those tight shirts swimmers wear.  I am going to put lots of things he can do for tactile activities in the backpack.  She said to include things like:  straws to chew on, putty for his fingers, a weighted lap snake (think of a tube sock-like item full of rice), and a container of things with different textures, like squishy, hard, soft, rough, and smooth.  I can't remember it all.  I will have to look at my papers.

He has a lot of touch aversion even though he seeks out the sensory stimulation.  He doesn't know how to relax when he gets it.  He also does not like being in amongst unexpected noises.  He seriously hates being touched from behind without warning.  She explained that some of this is probably heightened because of his past.

Today when we went to another appointment for him, I saw his behaviors through this lens, and it did help.  I was still embarrassed.  Yeah, that's my kid screaming and throwing himself down because other people unexpectedly walked into the room, and yeah that's my kid screaming because it was time to get up when he was sitting down.  I told him we would be leaving, I told him it was coming soon, but that does not matter with Chi.  What matters is that he never "heard" me and I reached down to touch him to get him to move and that terrified him.

In addition to all of that Chi has had what appears to be a seizure.  He started this strange barking cough that was very short and repeated nearly 20 times,  I picked him up thinking maybe he was choking and he was rigid, then he began shaking from head to toe.  It was not the violent shaking that I have seen on tv and it only lasted about 10 seconds.   It was so short that I was unsure of myself.  Now, as we discuss seizures with Dr.s and therapist we will try to figure out if some of the rigid staring he does is a sensory processing thing or something more.  We have more appointments next week for that.

Chi doesn't look special needs.  He looks like everyone else.  His behaviors read like a very out-of-control toddler.  No one will know unless I explain and that just isn't realistic or fair to him.  So this is where all of my "feelings" come in.  I have all this grief because I expected too much of him and I didn't look into things sooner.  I wonder if we will ever have "normal?"  I know I signed on for a different life, but this is something more than I bargained for.

 I am not this amazing parent who can handle anything that gets tossed her way.  I am lazy, and whiny, and scared, but I so want to be hard-working, and stoic, and brave. I keep having to overcome me to do this thing I am doing and it's exhausting.  I have been reading about faith this week.  I am continually reminded that God's power can accomplish anything.  A little bit of faith can move mountains.  I told God this week, "You have to help me God, because I am my mountain!"

Between us... I'm scared.  It's the kind of scared I had when I bungee jumped.  'There is no way I am backing out, but what if I don't bounce, what if I just keep falling and there's nothing to catch me?  I'm not going to think about it, I am just going to operate on what I know to be true.  God will never leave me or forsake me.  At nineteen I learned to do what I am doing again today.  I'm just going to take the next step and the next step until maybe the air is rushing past me and I'm having the greatest thrill of my life.


The words my youngest brother spoke to me one time keep going through my head, "God's got this Mandy.  God's got this."