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)