Wednesday, September 27, 2017

Don't Hide From the World

As Jacob is growing, we are having to discover new ways to teach him, new methods for rewards and punishments and new ways to include him into everyday activities.  Jacob is silly and energetic, but he also suffers from extreme anxiety with a capital A.  This is something that I have been struggling with lately.  I’ve heard of people that have anxiety or OCD from traumatic events, but when a child who has had a typical upbringing is anxious it’s very confusing.  It’s as confusing as autism. 

Anxiety is common within the autism community.  The statistics say somewhere around 40%.  I have been doing some research in medical journals in my free time and have read several theories backed by some mainstream medical professionals.  Anxiety could be linked to his atypical sensory function, inability understanding and labeling emotions, intolerance of uncertainty (having a hard time with ambiguity), and last they are looking into the “role of the medial prefrontal cortex (mPFC) in regulating emotional response, in connection with limbic and insula-based networks, and suggest that disrupted integration in these networks underlies difficulties with habituation to strong emotional stimuli, which results in an enhanced perception of threat in many people with ASD” (South, M., & Rodgers, J. (2017). Sensory, Emotional and Cognitive Contributions to Anxiety in Autism Spectrum Disorders. Frontiers in Human Neuroscience).

All of that basically means that his anxiety likely derives from his disability and not from something bad that’s happened to him, which I already knew, but somehow it doesn’t make it any easier.  Not to mention, I don’t know how to help him.  

We recently started considering behavioral therapy techniques to help with this anxiety in public.  His clinic has already implemented treatment for his issues with wearing shorts, talking to certain kids that make him nervous, talking in certain rooms, etc.  Some people don’t realize that the reason why we often can’t take Jacob to friends’ houses is because he gets very very nervous in new places.  Sometimes the iPad will suffice, but other times his desire to run in circles, opening doors and drawers, turning on lights, and jumping on furniture in a fury is so strong that only Cret can hold him and its exhausting.  He gets nervous like this on the baseball field, too.  He loves getting on his baseball uniform and asks to go to his game, but most times he fights or screams at his buddy and tries to run off, lays on the field or in the dugout and refuses to cooperate.  It’s hard to know what to do in those situations.  I don’t want people to feel uncomfortable, but I want him to have those experiences so we can work on them.

 His therapists wanted to see this in action, so they recently came to a friend’s house to watch what he would do at a new place.  They asked me not to bring any toys or electronics and as I expected, it was wild. He ran all around and totally invaded their privacy.  I instantly regretted going there.  Both BCBAs said they had never experienced that and would have to research an intervention plan, but that ABA (behavioral intervention) was the proper method for helping him with this behavior.  I left feeling absolutely dreadful and embarrassed.  Maybe it wasn’t the biggest deal, maybe it was.  They were very gracious to me and didn't make me feel like they were upset at all.  I guess allowing people to see what we go through just felt scary.  It’s extremely humbling to allow people to have that kind of look inside autism.  Most of the time autism isn’t pretty.  It isn’t a genius child that has some amazing artistic ability.  It is repeatedly screaming, running, self-mutilating, poop-smearing, taking off clothes, rituals, etc.  In other words, it’s hard.

At church and at baseball and at friends’ houses, I sometimes find myself feeling self-pity and sadness or jealousy of “normal”.   I want to bring my kids somewhere and just sit down and relax and chat with the grown-ups, but I can’t.  But I don’t want those feelings holding me captive.  I decided to just go to Scripture again for rest and peace and guidance.  I don’t know how I am supposed to look at his anxiety.  I verbally share the Gospel with Jacob word for word.  I ask him if he wants to know about Jesus and he always responds “yes”, but quickly loses focus.  It may sound silly because he isn’t understanding speech at that level, but I know the Gospel is for him just like it is for everyone.  I sing praise songs to him and we pray together.  But yet, his anxiety is still very real.  His behaviors are very real.  We go to church and I can’t help but feel embarrassed when he disrupts service and I have to walk out.  I know other autism families feel the same, even more so.

I wanted to share what I have been reading. In Romans 15:1-2 it reads “We who are strong have an obligation to bear with the failings of the weak, and not to please ourselves. Let each of us please his neighbor for his good, to build him up.”

And Ephesians 4:15-16 says, “Rather, speaking the truth in love, we are to grow up in every way into him who is the head, into Christ, from whom the whole body, joined and held together by every joint with which it is equipped, when each part is working properly, makes the body grow so that it builds itself up in love.”

What I am praying is that the Lord will lead Cret and I in such a way that we are “working properly” or in other words seeking Him and His will in all things, so that even with our circumstances, we can help the body grow in that even if Jacob is being loud and disruptive, I will know that God has a place for us there.  I pray that we can be examples of leaning on God in our utter and complete weakness.  We have no sure answers as to how to handle autism, all we can do is rely on the Father and the sufficiency of His grace despite autism.  I pray that those who encounter our “weakness” will see God’s great strength. 

“But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” 2 Corinthians 12:9

So if you’re anything like me and you want to curl up in a ball and never leave the house again to hide from the sometimes kind and sometimes cruel world out there… don’t hide, autism families.  Let the world see you and your child.  Allow God to use you.  Allow the world to see your weakness, the ugly, the hard, but also to see the joy you have despite those weaknesses that comes only from the Lord.  Let them see the ongoing hurts and struggles and let them see God walking you through them pointing them to Christ and future hope.  I hope that I can be more bold in this way for the Lord.