Monday, March 30, 2009

Ben's Diagnosis

Today was Ben's appointment with the head psychiatrist at Kavalier and Associates (Dr. Kavalier). All these years, while never having him formally diagnosed, we have always believed Ben to have autism. But today Dr. K dispelled that. He believes Ben to have a disorder called Pervasive Personality Disorder - Not Otherwise Specified, otherwise known as PDD-NOS. I am actually familiar with this disorder. The first year I was homeschooling I met a mom in my homeschooling group who told me about her son who had "PDD-NOS" and when she described some of the things going on with him I remember thinking, "Boy, that sounds a lot like Ben!" I've also read a little bit about it here and there over the years.

I think PDD-NOS is probably a "catch-all" definition. Dr. K said that the true autistic will be mentally impaired and he doesn't see that in Ben. We have wondered about that. Ben seems very alert and has always had good eye contact and is affectionate - things not generally associated with mental retardation. But yet, he is functioning about 4 grade levels below his age and we have never understood how it is he is so inattentive to everything. Dr. K explained that there is a "line" - or a "spectrum", if you will - consisting of a broad range of mental symptoms. On one end you have the child with Aspergers. Aspergers kids might be able to do quantum physics, but have to wear shoes with velcro closures because they are incapable of tying shoestrings. More than likely, Albert Einstein was an Aspie. Quite often Aspergers kids can grow up to lead pretty normal lives. On the other end is your true autistic, which is an individual with mental and social handicaps. And in the middle are those with PDD-NOS - the rest of them!

We turned in these parental evaluation sheets that we were given last time. I can't remember what they were called, but it was us evaluating Ben in a number of areas. Dr. K said an average score is about 90. The highest he has ever seen is a 155. My score for Ben was 142 and Paul's was 128! So he definitely has issues. But we knew that. Dr. K said that at the rate Ben is going, he will end up in assisted living, like a group home, at some point. And we knew that too. And honestly, I'm ok with that. There's still twinges of grief here and there over the grandchildren or daughter in law I won't have through him. I pretty much made peace a long time ago with God's decision to send us a child like Ben. It would never have been my first choice but having Ben has changed me and I think it's for the better and maybe that was God's whole point in sending him.

Dr. K then talked to us about a "wonder" drug called Namenda. I first heard about this drug last month. Our pastor connected us with a family from Saylorville Baptist who has a child on the spectrum. They have seen great progress with the use of this drug, as has another family in their church. So, I was curious and that's how I came to make the appointment with Dr. Kavalier. Namenda is a drug used to treat Alzheimer's patients. But in recent years they have discovered that autistic children benefit greatly from it. Some are even being cured. I'm afraid to be too hopeful because we have tried so many things over the years with Ben and nothing has had any lasting and long term effects. But Dr. K is now using this drug on over 500 of his patients and there's only about 50 who have not responded to it. He has patients flying in to Des Moines from around the country. Word is starting to get out about his success with this drug. He said that once this gets FDA approval he'll be called to be on the Today show and Oprah. I guess we'll see! I know I said I'm afraid to hope, but I am. What if all that has happened with us and with Ben has been leading us to this point?

I am not big on drugs. Most of you who know me, know that. I'll take them myself (you ought to see my purse during allergy season - it's a pharmacy in and of itself!), but I'm hesitant to give them to the kids. Well, usually, anyway. All 3 older boys have discovered the joys of Advil and I find them popping those pretty frequently these days. But I know that anything you put into your body, you will pay the price for at some point. It may be hardly noticeable or it could mean cancer at some point. It's a trade-off: will the results of today be worth possible repercussions later in life? I'm willing to take that chance right now with Ben. If he can have a better future because of this drug, then it will be worth it, even if it ends up being a shorter future. My resistance to drugging him in the past was because I abhor the use of Ritalin and other psychotropic drugs on little boys. Boys are boys and while it would be nice to calm them down artificially at some times, it's not the right thing to do, in most cases. I didn't want a drugged up version of Ben. I still wanted him, even if he was driving me insane at times! My understanding of this drug is that is helps to calm down and even heal the receptors in Ben's brain. He has the inability to sort through the different input that comes in that the average person can do, without even thinking about it.

So, I will keep you posted on how it goes with Ben. Maybe this is just one more experiment that we are putting him through that will ultimately fail. But maybe it's the answer we are looking for. If it does offer some improvement, then we can begin to address some of his other issues. I have developed a sense of urgency about his future, wanting to get a plan in place as much as is possible. He'll be an adult before we know it and I don't want to just stumble into it, not knowing what to do and just handing him over to the system without any forethought. So, we'll see!

Can you see that this child has my heart? I love all my boys with a fierce, tiger-like, mother-love that's pretty universal. But Ben was my broken baby. The first time I saw him was in a grainy Polaroid photo that Paul brought me while I was in one hospital and Ben was in the other, after his birth. I was a little disconnected still at that point. But when he was 5 days old I saw him in person for the first time. He was naked, in an isolette, and tubes snaked and crisscrossed all over his little body. I had to wear a gown and gloves and the only contact I was allowed with him was through two little "portholes" in his isolette that I could stick my hands through and stroke him. But the first day I saw him an awareness and deep love overcame me and I knew I would do anything and everything it took to help him and love him through life, no matter how he turned out, no matter what he could or could not do. He was my son. Twelve plus years down the road, I still feel that way.

1 comment:

  1. I do pray that God will give you clear direction on what should be the next step with Ben. This was a very timely post because a teacher friend of mine at the kids' school (I am subbing there all week so my comp time has been limited) just found out over spring break that her youngest is on the autism spectrum. She has known *something* wasn't right but could never get it pin pointed by a doctor. She still has to go through some more tests and find out where to go from here. Her biggest concern? How to help her daughter in the educational world that is so not geared (read cruel in some instances) to our children. *rambling done, sorry*
    Your last paragraph about him being your heart brought tears to my eyes. My little guy, my broken guy, Aiden, from moment one stole my heart. When I sat there crying out to God when I thought he wasn't going to make it, I vowed right then and there that I would do everything in my power to honor God in all that do for my family, but specifically in his life, even it that lifetime meant he would be taken from me that day. I have been honored to be blessed by his prescence now for over a year and prayfully many more years.
    You are in my thoughts and prayers for all you endure on a daily basis. May you feel His blessing.