STRESS is the word of the day. Jacob’s behaviors are increasing big
time. He is still learning and growing
in some marvelous ways, but he is also becoming more defiant and harder to
manage in public settings. By manage, I
just mean like sitting down at a table without getting up 10 billion times to
open doors and slam things. He refuses
to let me take him into the kitchen in the morning to eat. He won’t leave the house without the specific
color headphones he wants that day, and heaven forbid I try to get him to wear
his nice new red tennis shoes. He is
back to slamming all our cabinets and doors and he desperately wants me to sing
him Christmas songs while he cries. I
don’t like him crying so I refuse to sing them…which also makes him upset so he
sings the songs crying.
We recently visited a new neurologist and he ordered an EEG
and DNA testing and we finally got it done!
He said many people with autism have epilepsy and don’t realize it and
once it is treated it can greatly improve symptoms of autism. I would be shocked if Jacob was having
seizures, but we completed the test and will have results soon. Additionally, the first DNA test (CMA) came
back completely normal. It’s so strange,
but the results made me sad and a little disappointed. His doctors thought it would likely come back
with answers, but it didn’t. It’s weird
to think I would want a genetic reason for his autism, but the truth is that
now we are back to square one. AUTISM is
a big, huge, gigantic mystery. Is it inflammation,
is it a nutritional deficit, is it gut, is it from pregnancy, should I be doing
something different, is his health at risk?
All the questions remain and everyone has their own opinion.
To make matters more difficult, his BCBAs are certain that
he has selective mutism. They mentioned
it a long time ago, but symptoms are getting much worse. Selective mutism is when a child is silent in
specific settings due to anxiety, where they can otherwise speak
regularly. So… autism adds an element of
“is this really selective mutism” to the picture because of his language
disorder. However, his therapists seem sure because he will be silent after being asked very
simple questions that he easily answers all the time. Over the course of a few weeks he has gone
days with up to 4 hours of complete non-compliance and silence even when
presented with the highest motivational reinforcers like a lit Christmas
tree. They are at a loss of how to help
his anxiety and can visibly see that he is upset. Many things set it off like sounds from
outside that he doesn’t recognize or people crying loudly. Traditional treatment is counseling, which
won’t work for him because he doesn’t have conversational speech. Behavioral treatment is probably our only
option for now.
Basically, all the plans I had for Jacob have changed. I think I assumed that trusting God through the big
issues would then lead to answered prayers of healing or mainstreaming for
Jacob by now. I don’t know if I ever
told myself that, but based on my heartache and disappointment I can tell that’s
how I truly feel. I assumed that the textbooks would be exactly
correct in Jacob’s case and that full-time therapy during the preschool years would
enable him to be in classes with typical kids his age by now. I thought that my prayers for his life would
be answered in the way that I wanted them to be answered. But they haven’t. And it hit me a few weeks ago during a
sermon. Had I been praying for God’s
will in Jacob’s life in everything, or was I praying for God’s will in some
things hoping that my will or my prayers would be answered in others? My Pastor said it is our responsibility to
plan. Through our planning process we
should search the intention of our hearts and motives, submit our plans to the
Lord, trust Him fully with the plan to either bless it or change it and trust
in him. While I believe my intentions
are pure, I fully realize that there are times that I am actually scared to
pray for God’s will over my own. It’s as if I am trying to trick God by not
saying that…as if he doesn’t see that I was trusting my plan over His. I cried as that sermon as it sank in. Is there ever a time that I want to be out of God's will? Certainly I am better off in His will, no matter what that means, so there is no good reason to pray against it or leave it out of my heart. I am so happy that God knows more than me and it is simply prideful to think that my plan would ever be better.
Time for a new plan.
Jacob will not be mainstreaming within a year. It may be much longer than that, if
ever. I think I will begin the process of making a
new plan and start with lining up my heart to desiring the will of God.
So, with all this said I would absolutely love and appreciate
your prayers. I know this is just a
rough patch on the roller coaster that is autism and I know God will use this
to grow our family, but I am tired and would love a breakthrough for him. God is good and God is bigger than this. I know some of you are in the pits just like
me trying to dig your way out. Cry out
to God and trust in Him. Know that if
you put your faith in Jesus and make Him Lord of your life, His future promise
is enough to get you through whatever you are going through. I have to keep my eyes on Jesus especially in
these difficult times. I am so thankful knowing that I can bank on the promise
of peace and rest forever to sustain me and that times like this are just
temporary. God is so awesome.
“I have said these things to you, that in me you may have
peace. In the world, you will have tribulation. But take heart; I have overcome
the world.”(John 16:33 ESV)
