Wednesday, May 17, 2017

Your Son is at the Bottom, or I Hate Change, Part 3

 All praise to the God and Father of our Master, Jesus the Messiah! 
Father of all mercy! God of all healing counsel! He comes alongside us 
when we go through hard times, and before you know it, he brings us 
alongside someone else who is going through hard times so that we 
can be there for that person just as God was there for us. We have plenty
of hard times that come from following the Messiah, but no more so than the 
good times of his healing comfort—we get a full measure of that, too.
1 Corinthians 1:3-5 (MSG)

My mother gave me this scripture on Tuesday, right after I wrote "I Hate Change, Part 1," and was weeping when I described it to her. Many of my friends, in person and on FB, have come to me in the intervening days to tell me how much they appreciate my words. And this is one of the reasons why I'm sharing it so publicly. Another is that I think with my fingers, processing my emotions as I recognize them coming out of the words I am recording. I am not a journaling person, I am a correspondent. If I really wanted to remember some of the events of the last 11 years, I would ask a friend in Seattle to send me back the letters I sent her. Or read earlier blog posts. If I'm just writing for myself, it doesn't go anywhere.

So, back to 2006.

We lived through the summer of Early Intervention. Sometime in August, my Early Intervention Case Manager escorted me to my first IEP meeting with the district. I have only vague recollections of the meeting. I signed what they gave me. I still didn't really understand anything and was having enough contractions to scare my doctor into prescribing partial bed rest. So I begged my mother to come stay with us to help with Alex. We just had to get through September, to 36 weeks. My due date was early November (I can't remember the actual date) but Miranda ended up coming by scheduled c-section on October 30, 2006. She was breach and not interested in coming out on her own.

Back to August. On your child's third birthday, he or she becomes the responsibility of the public school district. Alex's birthday was October 4, but the Mt. Laurel Child Study Team Director, Dr. Willard (who is still there, God bless her), decided it would be easier for Alex to start in September with everyone else. He would be in class every day from 8:30 - 12 in the Preschool Disabled program. There would be door to door busing (which he still has). 
Springville School is where the special education preschool students were in 2006. There were two classes then, one for high functioning kids, and one for everyone else. We were in the everyone else class, where the ratio of adults to children was 1:1. 

I remember orientation day very clearly. All the parents and kids were invited to come see the classroom and meet the teacher (who was new to the district) and the aides. I wore one of Marshall's brightest, most obnoxious tye-died shirts and some sort of skirt that fit. I tend to borrow his tye-dies when I need cheering and want to make a statement. The other parents were and are lovely people. I'm still close to several of them. But it was a sobering experience to be in that classroom to see just how disabled the other students were.

And to understand, this is where Alex belonged.

I must have been in some kind of denial. (I was pregnant and certainly not thinking straight.) But it didn't come home to me until this moment just how far out of plumb Alex fell. Because for all they pretty talk about not comparing your kids to others because each child is an individual who has their own path, blah, blah, blah, blah, the ONLY way to discover just how much help Alex needed to make progress was to hold him up to the record of a child with NORMAL development and record all the ways he fell short. He was placed in the lowest functioning class in the district and, as I did discover over the years, it was the correct place for him. 

Maybe, for the first time since the spring when he received his formal diagnosis, I understood just how far underwater we were. And it was devastating. 
In many ways, it was the providence of God that I was pregnant with Miranda for all of this time. I didn't think so at the time, since I was terribly sick for the whole pregnancy, had all those early contractions and had difficulty eating anything up until an hour after she was born. (Seriously, I was in surgical recovery right after they sewed me up and I was hungry for the first time since March and wanting as much food as soon as possible. I ate well during those 4 days in the hospital.) But God knew what was best.

If Alex had been diagnosed before Miranda's conception, we probably would have chosen not to have any more children. Statistics don't help families with one child on the spectrum; the chances that all your kids will have ASD go up from 1 in 70 to 1 in 7. But the world would have missed out and so would we. And Alex is far better off having a sibling. 

And since I did this whole process as a pregnant woman, I was forced to take care of myself. I had to eat and sleep and visit the doctor frequently.  However depressed I was, there was never a point when I considered self-harm because I wouldn't for anything have hurt Miranda. 

There's probably another factor here: I don't think I would have otherwise accepted all the help offered to us from both our church family and our blood family. The church made us meals all through the summer. One of my friends watched Alex for all of my ob/gyn appointments. The women in the Wednesday morning Bible study prayed and prayed and prayed for us. The pastor and his wife, whose son has Down's Syndrome, encouraged us and listened to us at length. One friend gave me her teenaged daughter to help me at home about once a week at no cost to me and she did half the driving. I think I remember my brother in law both mowing the lawn and shampooing the carpet in our living room, just not at the same time. And my mother, who was working at the time as a part of the Urbana 2006 prayer team, spent a whole month with us. But I was so desperate that I swallowed my pride and said yes to everything. And accepted all of the grace offered.

I remember saying once that I don't think I prayed for that entire process. I couldn't get there. I had no words. But many, many, many others prayed for me, and it was enough. 

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