Yesterday we went to a long-awaited intake/evaluation appointment with a comprehensive developmental delay treatment facility here in our fair city. We had been on the waiting list for almost a year. I filled out approximately six hundred forms last summer - complete health history for Stephen, all kinds of requests for documents, etc. So yesterday it all came together and we took the little guy in to take the first step in what we hope will be an important time in his life.
We waited in the waiting room and finally the psychologist and an intern came to get us ("It's a teaching hospital!"). David, Stephen and I followed them down a brightly lit hallway, and then they told us that they'd be taking him into a room to do some testing, and that we could watch from the next room via a 2-way mirror. I was immediately excited because we rarely get to see him in action.
He sat down happily, facing Dr. O. across the table. (I had a flashback to a 3 year old who wouldn't even sit DOWN at the table for speech therapy.) It took him about 2 seconds flat to notice the huge mirror on the wall to his left. Our handsome boy is usually entranced by his reflection (and who could blame him? the kid is a knockout!) and he LOVES to make faces at himself. David and I, being mere inches away from him on the other side of the mirror, were treated to a hilarious view of his expressions. We were doubled over laughing - but I started worrying that he wouldn't be able to tear himself away from the mirror long enough to perform on the tests.
Finally the doctor shifted the angle of the table and he began to engage a bit more, still stopping on occasion to smile at himself, making almost coy glances over his shoulder, sending us into gales of laughter again. Most of the initial testing involved matching or grouping objects on cards with a display board placed in front of him. Stephen does great with exact matches, but when you start to try to generalize across categories, he still struggles to realize, for example, that a rose and daisy are both flowers, or that a stuffed bear and a stuffed rabbit are somehow related to each other, etc. It was touchingly sweet but sad to watch him intently concentrate on a picture, holding the card he was supposed to match with its appropriate group, but be unable to make that connection.
So, they slowly moved through the first battery of tests, and then moved on to others involving objects he could manipulate with his hands. Suddenly we saw a difference. He did much better with this kind of task. The doctor brought out some wooden blocks and began making simple towers and asking Stephen to copy hers with his set of blocks. The easy ones he did quickly. Then she moved to making more complicated patterns...David and I were leaning forward intently, WILLING him to do it...both of us were muttering under our breath, "Come on buddy...come on..." I kept saying "I KNOW he can do this!" And...to our amazement...he did. He'd look at the example, then he'd move his blocks around...cock his head to the side and study the example again, then move his. Before long, you could see it click, and he'd push his last block into place, or carefully balance it where it belonged. The doctor would say, "Are you all done?" Stephen: "All done." And she'd give him a high five, smiling at him. He also did very well with verbally identifying a surprisingly large number of objects in a flip book - we could hear the audio clearly as he said, "Cah (car). Ball. Hewi-copper (helicopter!)," and when shown a picture of a watch, he looked at it, and said, "Clock," which was pretty darn close, you know? That part was fun to observe, for sure.
So, eventually the tests for the day were done, and we all got back together as Stephen played with some Duplo blocks and other toys on the table. We talked. A LOT. The doctor clarified a few points about his early years, and our initial suspicions about his development, and then we talked about his school day and routine - which we are THRILLED with, by the way. We couldn't ask for more committed, educated, loving people to work with him on a daily basis. We've been told by more than one professional that families have moved to our county to take advantage of the special ed services we have. On that level we are truly fortunate.
But back to the clinic...we told the doctor about the areas of daily life where we still need help structuring his days and evenings, about the potty issue, about his poor diet... This group of clinics houses a nutritionist, more psychologists, developmental pediatricians, and even a dental clinic. Getting our foot in the door yesterday gives us something to go on. It's been a long time since we felt we had a group of people working together to help us in this way. Not that we don't have some support, but this kind of concentrated, coordinated effort has the potential to be extremely beneficial. We have miles to go...we'll have to go back for the results from yesterday's cognitive testing. We'll do more speech evaluation and we'll see the pediatrician. We'll find out where Stephen falls on the spectrum, and if there are any underlying issues that need addressing.
It was a special day. Stephen did great work. Once again I experienced a seemingly impossible range of emotions within mere seconds of each other: pride, heartbreak, joy, frustration...but most of all intense and overpowering love for this little life. We yearn to set him free from what holds him down, but we are simultaneously bursting with pride for his effort and his progress.
High hopes, indeed...
Friday, January 30, 2009
Thursday, January 8, 2009
A new year
Without going into it all, let me say that I'm dealing with some personal issues and they are coloring my views and opinions of the moment. As I look back over the last couple of weeks, I can see how the tumbling clothes dryer that is my brain really took over and cast a pall over what should've been a pretty happy time. In retrospect, I can see that...
Overall the holidays went well. There were some "moments" at the beginning, especially before Christmas, when Stephen was tough to take. At least for me. He wanted to "o-pen" the presents under the tree - and while we were thrilled that he seemed to be more into the whole Christmas thing, it got a bit old trying to explain to him that he would be able to open them...later. I did my best to keep him occupied, and the days slipped by. We went to a family Christmas gathering, one of the same ones I believe I mentioned last year, and Stephen did great. I got to talk to one of my cousins who has a daughter with autism (or PDD), and that was pretty cathartic for me. David ended up taking Stephen for a walk - and as I look back, it was a pretty touching sight to see them, hand in hand, walking on the sidewalks in the small town where I grew up.
But again, I am very aware of my own gray clouds that hung over everything, and made everything feel dark. In time I may feel comfortable going into all that, but I've determined that this is going to be an exercise in finding the positive things and focusing on them.
Christmas morning was a lot of fun - both boys were thrilled with what Santa brought. Kerry got his beloved Nintendo DS and more Legos (yay) and Stephen got a tiny portable DVD player plus trains and books. For years now I've been avoiding DVD displays in stores because if Stephen ever got his hands on one, you needed a crowbar to get it away from him. And since we lock up his VCR to keep him from fast-forwarding his tapes (big-time stimming and wear-and-tear on tapes and machine), we didn't think investing in new technology was worthwhile. But, once we began to see the way he navigates his way around the internet, watching and pausing and fast-forwarding video clips to his heart's content, we realized that maybe that battle wasn't so important after all. Plus, in case you haven't noticed, they don't MAKE videotapes anymore. So any new Thomas stuff that comes out is only on DVD. I hated depriving the little guy of his beloved Thomas. After some marathon sessions the first two days after Christmas (which of course had me doing some serious second-guessing), Stephen has settled into an acceptable routine with his "bee-bee-dee." He sits at the dining room table, watches a bit, fiddles with the buttons a bit, and even plays some of the DVD games, and then he goes on to something else.
And folks, the absolute JOY that little machine has given him is worth a million dollars. He pops his little headphones on, gets a disc loaded, and the smiles are fairly leaping off his face. It's worth reminding myself how that kind of joy - pure, childlike abandon - can lift you up when things seem dark.
We went on another family outing - my parents included - to the local hands-on science museum. It was Stephen's first trip there in years. They had a model train exhibit that we thought he might enjoy, and he certainly did. Exhibit A:
But what amazed us was the fortitude he showed in dealing with LOTS of sensory input...noises, lights, people, motion. But he didn't just put up with this stuff - he LOVED it. He even ate in the cafeteria there - a huge accomplishment since they don't serve McDonalds burgers and fries. He laughed and danced and interacted, and he even tried to jump into one of the big, open-top aquariums. We had to laugh at his persistence...he'd climb up, stretch out his arms, and then as quick as a wink he'd dunk both hands into the water and splash his face. I present Exhibit B:
You'll notice he's wearing a different shirt - I bought him a short-sleeved T-shirt because it was HOT in the museum. So he promptly soaked himself to aid in the cooling process. :-)
We got some looks, sure. But I'm THIS close to getting used to those. When I look at him, I see the years of hard work, the effort he makes, the happiness he carries with him nearly constantly...I remember that we have no idea what life is like inside his little noggin, and it hits me that it's truly amazing how well he does from day to day. There are ALWAYS rough spots, and when my head is scattered and I'm overwhelmed, autism seems to score a few points against me. But as David reminded me recently, Stephen has a real personality, and a sweetness that most "normal" children would be hard-pressed to display. I am proud of both of my children, but right now I'm proud of Stephen in a special way. He exists in a world that no doubt makes little sense to him at times, and he continues to epitomize the gleeful joy of childhood that so many of us grow out of, sadly.
Happy New Year to you all, and I leave you with just a bit of that joy that Stephen's teacher managed to capture on film. I hope it brightens your day as it does mine:
Overall the holidays went well. There were some "moments" at the beginning, especially before Christmas, when Stephen was tough to take. At least for me. He wanted to "o-pen" the presents under the tree - and while we were thrilled that he seemed to be more into the whole Christmas thing, it got a bit old trying to explain to him that he would be able to open them...later. I did my best to keep him occupied, and the days slipped by. We went to a family Christmas gathering, one of the same ones I believe I mentioned last year, and Stephen did great. I got to talk to one of my cousins who has a daughter with autism (or PDD), and that was pretty cathartic for me. David ended up taking Stephen for a walk - and as I look back, it was a pretty touching sight to see them, hand in hand, walking on the sidewalks in the small town where I grew up.
But again, I am very aware of my own gray clouds that hung over everything, and made everything feel dark. In time I may feel comfortable going into all that, but I've determined that this is going to be an exercise in finding the positive things and focusing on them.
Christmas morning was a lot of fun - both boys were thrilled with what Santa brought. Kerry got his beloved Nintendo DS and more Legos (yay) and Stephen got a tiny portable DVD player plus trains and books. For years now I've been avoiding DVD displays in stores because if Stephen ever got his hands on one, you needed a crowbar to get it away from him. And since we lock up his VCR to keep him from fast-forwarding his tapes (big-time stimming and wear-and-tear on tapes and machine), we didn't think investing in new technology was worthwhile. But, once we began to see the way he navigates his way around the internet, watching and pausing and fast-forwarding video clips to his heart's content, we realized that maybe that battle wasn't so important after all. Plus, in case you haven't noticed, they don't MAKE videotapes anymore. So any new Thomas stuff that comes out is only on DVD. I hated depriving the little guy of his beloved Thomas. After some marathon sessions the first two days after Christmas (which of course had me doing some serious second-guessing), Stephen has settled into an acceptable routine with his "bee-bee-dee." He sits at the dining room table, watches a bit, fiddles with the buttons a bit, and even plays some of the DVD games, and then he goes on to something else.
And folks, the absolute JOY that little machine has given him is worth a million dollars. He pops his little headphones on, gets a disc loaded, and the smiles are fairly leaping off his face. It's worth reminding myself how that kind of joy - pure, childlike abandon - can lift you up when things seem dark.
We went on another family outing - my parents included - to the local hands-on science museum. It was Stephen's first trip there in years. They had a model train exhibit that we thought he might enjoy, and he certainly did. Exhibit A:
But what amazed us was the fortitude he showed in dealing with LOTS of sensory input...noises, lights, people, motion. But he didn't just put up with this stuff - he LOVED it. He even ate in the cafeteria there - a huge accomplishment since they don't serve McDonalds burgers and fries. He laughed and danced and interacted, and he even tried to jump into one of the big, open-top aquariums. We had to laugh at his persistence...he'd climb up, stretch out his arms, and then as quick as a wink he'd dunk both hands into the water and splash his face. I present Exhibit B:
You'll notice he's wearing a different shirt - I bought him a short-sleeved T-shirt because it was HOT in the museum. So he promptly soaked himself to aid in the cooling process. :-)
We got some looks, sure. But I'm THIS close to getting used to those. When I look at him, I see the years of hard work, the effort he makes, the happiness he carries with him nearly constantly...I remember that we have no idea what life is like inside his little noggin, and it hits me that it's truly amazing how well he does from day to day. There are ALWAYS rough spots, and when my head is scattered and I'm overwhelmed, autism seems to score a few points against me. But as David reminded me recently, Stephen has a real personality, and a sweetness that most "normal" children would be hard-pressed to display. I am proud of both of my children, but right now I'm proud of Stephen in a special way. He exists in a world that no doubt makes little sense to him at times, and he continues to epitomize the gleeful joy of childhood that so many of us grow out of, sadly.
Happy New Year to you all, and I leave you with just a bit of that joy that Stephen's teacher managed to capture on film. I hope it brightens your day as it does mine: