Sunday, November 8, 2009
This post is one where I am going to be thinking out loud, in an effort to make things more clear in my mind. We have a huge, huge decision to make in regards to Ben. It's not one I want to make and the thought of going through with it just tears me up inside. So, you're going to get a glimpse inside my murky brain. Feel free to skip this post!
Like most normal moms, I love each of my boys deeply. But one thing I have found is that I love each of them differently, dependent on their personalities and needs. With Will, I remember just being in awe that this little person had come to live with us. He made it pretty clear from the time he was quite little that he didn't really need me, but if I wanted to stick around and make him baloney sandwiches and change his diapers, that was fine with him. And that's fine - that's who he is and I'm still crazy about him, 15 years later. But with Ben, it was different right from the start. He needed me. The staff in the NICU had pretty much written off his life, due to the extent of his brain injury. They made sure I knew that we couldn't expect a whole lot out of Ben's life. Well, that had a way of raising my hackles and I adopted a "I'll show you!" attitude. I learned how to do things with Ben I had never intended to. I learned how to stick a tube down his nose and feed him with it. I used a stethoscope to make sure the tube hadn't stopped at his lungs, which would have caused him to aspirate. I took him to one dr. after another. I stayed up late a lot of nights cleaning my house because we had therapists coming over the next day and I couldn't bear to let them think we lived in anything less than perfect order. I covered Ben's little body in Crisco shortening when his eczema was so bad, wept when his skin continued peeling off, and held him for hours when the infection set in. I bristled when doctors suggested I wasn't doing enough when I knew better. I have a vivid memory of being literally cornered at Children's Hospital in Omaha, Nebraska while a trio of doctors accused me of neglecting Ben (and predicting a sure and early death) because I refused to let them vaccinate him any more. And I stood firm. I taught Ben how to crawl, hand over hand, practicing over and over again. I was the one who danced when Ben took his first steps and I was the one who took him into the ER time and time again, when he crashed and split open various body parts. I have been Ben's biggest cheerleader, his advocate, and his Mama.
My greatest desire has always been to protect this child. That's why I began homeschooling after a disastrous kindergarten year in the public school. I found I loved homeschooling all my kids and have been a huge proponent of the whole idea ever since. It's a wonderful, wonderful, thing. My intent has been to homeschool all 4 boys all the way through highschool. But suddenly, I find that we are leaning in the direction of sending Ben back to public school, starting next year, which will be his 8th grade year. How can this be?
We started having some real behavior problems with Ben about a year ago. Some counseling helped and getting hooked up with a local psychiatrist and having him start on the drug Namenda also helped. But the problem is still there. Ben does not get along with his brothers. I had brothers - I understand that sibling fights are a pretty normal part of growing up. But with Ben it's different. He feels a need to be constantly informing them that he is stronger, older, and better than they are. He refuses to cooperate when they need his help, such as when doing chores. When he is reprimanded, it's like water bouncing off a duck - it makes no difference. Ben has no empathy, which is part of the autism curse. You can't explain to him how his words made someone else feel because he doesn't understand the whole "feelings" thing. One day this week I was very upset because I had spent a long time making and decorating some special cupcakes for my new baby niece's homecoming. Ben accidentally (but it could have been avoided) knocked my closed container of cupcakes to the floor, wrecking them. He laughed. He said that he wasn't laughing that he did it - he was laughing because I was upset. That same morning he turned on my food processor (I had the extra pieces stored in the bowl), cracking the bowl. He said he just wanted to see if it worked. These things have always happened with him. But now he's getting taller and he's extremely, extremely strong and the damage is getting worse. There is no peace in our home a lot of the time. In the moment, Ben cannot be dealt with. I can command him to go to his bedroom, but I can't force him to go there. The other day I literally put duct tape over his mouth in order to stop his abusive haranguing towards his brothers. He ripped it off. Now, later on, Ben is always, always repentant. He wraps his arms around me and tells me, "I'm so, so sorry, Mom! I'll never, ever act that way again!" And I believe he means it. But it only lasts until the next time.
That's one side of the equation. Here is the other: Ben's life is very narrow. His interests are very small. When I am not doing school with him he spends his time doing one of 3 things: 1) swinging outside (it's very soothing for him) 2) playing video games 3) playing a little game that he invented where he speaks into a microphone and records himself and then plays it back. He's pretending to be the announcer at different stores, "Henry, we have a clean-up in aisle 3, Henry, clean up in aisle 3!" and so forth. That is all he does. If it is a night where he is allowed to watch "Wheel of Fortune" (his favorite show) he will also pester me all day long with questions of do we have to go anywhere that evening (thus preventing his watching of it) or even, do I think they might break into WOF with a weather bulletin, disrupting his watching of it (never mind that the sky is blue and peaceful!). He is extremely focused on gaining the fulfillment of his desire, which is to watch that show.
Now, Ben could easily live out the rest of his life this way. I am content with the idea of having him live with us forever. But, should the Lord tarry, Ben is going to outlive both of us. Granted, he could go live with one of his brothers at that point and both Will and David have already volunteered that they would be happy to assume that responsibility some day - and I'm grateful for their tender, willing hearts. But how much better it would be if by then Ben has gained some independent living skills. He might always need some sort of supervision, but he needs to learn basic life skills. And in order to do that, his world must expand beyond what it is now.
In considering the whole option of returning Ben to school, one thing I am sure of: I don't want him mainstreamed, for a variety of reasons. But yesterday the Lord arranged a series of circumstances that put me in conversation with the former administrator of a local school system. He is a homeschooling father himself. So he understands both "sides." We talked at length about options for Ben. I found myself so encouraged as he explained how special education works at the middle school and high school level. It's no longer a matter of trying to make the child "fit in" with the other kids, but rather an attempt to teach the child practical skills that he is going to need once he "graduates." That is what Ben needs, I know! I have taught him the basic academic skills. It's taken him a long, long time but he can read and he can do basic mathematics. Is he ever going to be able to do more than that? Possibly. But that has to become secondary now to teaching him things like following through with tasks, how to talk with people, how to cook, how to do laundry, money skills and so on.
Now, we haven't made a final decision. We're still in the exploratory stage. This man that I talked with yesterday told me that he would place a call for us this week to our local AEA, explain Ben's situation, and get the ball rolling. It's going to take months to get this set up since he has been out of the school system for so long. It may be, once we get to meeting with school officials and see what they have to offer, that we'll quickly realize this is not what we want, and start looking elsewhere for answers. In the meantime we're going to be wearing out our knees, praying about this. Ben won't like it, I'm sure. It was a bit of a trial to get him to go to Kid's Club (respite care) once a month and he's still not overly thrilled about having to go, although he seems to enjoy himself once he's there. Change is difficult for the autistic mind. Hey, it's difficult for me and I'm not autistic!
I don't like it, to be honest. My heart's desire is to keep Ben home where he's always safe and he's always loved and I always know that he's been treated the right way. If we do this, I know that I will be an emotional basket case the first day of school. Just thinking about letting him go brings tears to my eyes - and it's a good 10 months away yet! It will be inconvenient to drive him to and from school every day. No longer will we have the freedom to take vacations in the middle of the school year. I bristle at the very thought of having to listen to others tell me what they think is best for my child, when I am the one who has loved him and invested so much of the last 13 years of my life into him! I wonder if we do this, is it an indictment against my success as a homeschooling mother? After all, I've attended special needs workshops every year at our homeschooling conference and never have I heard any speakers confess that the best thing for our sp. needs children might be not homeschooling them at all. If I only had more patience and more wisdom, might I not be better at this and able to keep him home?
One of the reasons we homeschool is because we earnestly want to live out the instructions that God gave to the children of Israel in Deuteronomy 6, which is to teach our children about God, "when they rise up, when they sit down, and when they walk by the way" We just didn't see how we could do that if they were in a Godless environment for 8 hours a day. I am not completely anti-public school. I know many Christian parents who have made the decision to go that route and I'm not going to argue with them over it. That may be the best thing for their family. But we couldn't justify that for ourselves and greatly desired to shelter our sons from an ungodly environment until the time that they were grown and strong in their own Christian faith. Am I turning my back on that conviction by allowing Ben to attend public school? Perhaps. Although, I was encouraged by this man that I talked with yesterday. He pointed out to me that Ben's mental development is such that a lot of the "nasty" stuff he might encounter in public school is probably going to go over his head. And if he's not mainstreamed all that much, then he's going to be more limited in his exposure to ungodliness. But it's still a concern for me.
Friday night I did not sleep well and part of it was having this on my mind. I had had a lengthy conversation with my mother about this earlier in the week and had mentioned it briefly to my brothers' wives. I had hinted at it on Facebook and received many offers of prayer, for which I am thankful - I love my friends! Paul and I discussed it at length Thursday night. But Friday night I began to pray about it in those sleepless hours. And I just laid it out before the Lord and told Him what some of my fears were in even considering this. At the top of my "fears" list was and is, "How can I protect Ben if I'm not with him?" and immediately I felt the Lord speak. It wasn't audible, but it was so strong that I had no doubt whose voice I was hearing. He said, "I will take care of him." And oh, that was as humbling as it was comforting. For I began to realize that with all the responsibility I have assumed in caring for Ben, I have always had a certain amount of pride in believing that only I was capable of meeting this child's extensive needs. I knew him best, I cared for him most, therefore, it was all up to me. I think I will always carry a certain amount of guilt over the circumstances of his disabilities and I know that has factored into everything as well - "I created this, now I'll fix it" kind of thing.
I wrote this for a couple of reasons. Believe it or not, it isn't because I have this insatiable desire to make public every thought in my head! One, I needed to organize the jumbled thoughts circling around in my brain. This is a huge decision and there could be potentially good and potentially bad things, either which way we go. Two - we need prayer. If we send Ben to public school next year this will affect him for the rest of his life. We dare not screw up this decision. We need prayer and Ben needs prayer. Something has to change in our family. If this is not what we are supposed to do in order to engender that change, then we need clear direction on what is.
It's not like we're banishing Ben to Siberia. He's still going to come home every night and we're still going to love on him and teach him what he needs to know as he grows into manhood. He may live with us for decades yet. But the hardest part of loving him, for me, is going to be in letting him go, so that he can, at last, grow up and become the man that God had planned for him to be all along.