Tuesday, February 20, 2018

New words, new races, new tantrums, OH MY!

There have been so many new changes with sweet Jakey lately.  He is talking independently much more now.  The other night Cret was holding him trying to get him to watch a movie with us, instead of spinning plates loudly in the living room, and Jacob announced, “I don’t want to! I want to go play!”  It was pretty amazing.  He is becoming more vocal and showing us his funny personality.  He is dancing more, reading more, and even adding and subtracting.  He also just ran his very first 1 mile race with the Miracle League and loved it! However, with this new and fantastic independence comes full on tantrums and stubbornness.  When we are somewhere that is too loud, he will make it known that he cannot handle it and there is absolutely nothing that will calm him down.  When his bedtime routine is out of order, he will scream and try to kick and bite me and it takes a very long time to calm him.  He’s always been such a laid-back kid, so these new outbursts are pretty shocking to the fam.  But, with the good comes some bad and we are making progress which is very hopeful.

We recently received the results of the IQ and cognitive evaluation for Jacob.  The results were much worse than we expected, and it hit Cret and I pretty hard.  We see him making so much progress and in some ways he seems far above his age.  I guess we were expecting to hear all of these glorious things about him.  Unfortunately, those tests mostly show deficits.  And in Jacob’s case, most of the tests showed extreme deficits.  In addition to a full detailed devastating description of all the deficits, they gave Jacob new diagnoses. They diagnosed him with autism with accompanying language impairment and accompanying intellectual impairment, ADHD, Language Disorder, Speech Sound Disorder, and Developmental Coordination Disorder.  They would’ve diagnosed him with Selective Mutism, however, based on diagnostic criteria right now any individual with autism cannot also be diagnosed with that.  Its very strange because most doctors believe you can have both, just as you can have autism and ADHD, but that’s another story. 

It was not the news we wanted to hear.  His percentiles were lower than I could’ve imagined and the news hit me like a ton of bricks.  I found out later that it hit my husband pretty hard, too.  He is such a lovely husband to me.  I try to be really strong and educated and helpful when it comes to Jacob’s disability.  Nevertheless, that night as I read the results he said he could see it in my eyes that I just couldn’t hold it together, so he held it together for me.  He read the results and came to me and reassured me, while inside he was feeling crushed.  Only later did he tell me that he cried, too.  I feel so fortunate that God blessed me and our family with my husband.  He does so much for us, there is just no way that I deserve him. 

The next day, a therapist kindly reminded us that while this test was hard to read, it was for his benefit because now we know what to work on.  Also, the test only focuses on what he can’t do, we must remember to always focus on what he CAN do.  I loved that reminder. 

They still believe insurance will begin cutting his ABA hours this summer, so we have been teaching him academics at home.  We are in this strange waiting period right now.  We don’t know what the future holds for Jacob’s therapy and education and we honestly can’t decide what to do next.  So that leaves us here…with either worry or trust. 

God has provided for Jacob so many times, yet I still struggle with waiting and trusting; waiting to see what the Lord has in store for Jacob and for our family.  I wanted to know all the answers immediately.  I want to know how independent Jacob will be when he is older, I want to know if he will have a job, go to a typical school, talk to me like my other kids, get married, have friendships... I want to know what all these stupid terrible test scores mean in the big picture. I want to know now and I don’t want to wait.  And that impatience leads me to doubt and worry and fear instead of trust, knowing that God has put me here right now in this place of waiting for a reason.  I’ve been struggling with this for a while now, but I want to let it go.  So, today I am choosing to surrender my impatience to the Lord.  I may have to choose to do that every single morning because it is so doggone hard, but I want to be faithful in waiting. I want to live life believing that what God has in store for us is better than what my measly brain thinks needs to happen.  I want to be able to wait patiently, even forever, knowing that my hope is in the Lord and not my desired outcome.

And when life throws crazy test results at us, and we mourn, I want to run to the Lord in prayer instead of to myself and my worry.  God is so good and today I will choose to trust in Him.

2 Corinthians 4:16-18

"So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen.  For the things that are seen are transient, but the things that are unseen are eternal."