In other news...

I finally jumped headlong onto the Facebook bandwagon after no less than 10 people said, "Are you on Facebook?" and now I'm wondering why I waited so long.

So welcome to the new, old friends who might have found their way here via FB. Reconnecting with you guys has brought a new spark into my life, and for that I'm grateful. Those of you who have sent me messages of sincere sympathy and understanding have given me a gift - thank you so much.

Before I forget, I wanted to post an update on where we stand as far as the evaluations we've been having at the Sparks clinic(s).

We spent last Wednesday at Sparks - a full day of testing and talking with some of the professionals there. We began with an occupational therapy assessment - David and I watched for a few minutes through the 2-way mirror, but I could see that Stephen wasn't engaging so we went into the room and I tried to help get him focused. He did fairly well on a few of the tests, again, especially matching block towers. His pencil control is poor, and he only did moderately well with repeating patterns or shapes. He continues to be enraptured with the huge mirrors in the rooms, and did a bit of preening in between tests. We talked extensively with the OT about some of his sensory issues, and she took a lot of notes. Hopefully all of this testing will get effectively condensed and synthesized for us - that's the whole point of jumping through these hoops.

After OT, he had a speech assessment - there wasn't as much of a connection with this particular therapist, and he didn't perform very well. While we talked to her, she constantly interrupted us to say "Yes, yes!" like she knew what we were going to say before we finished. That got old. Again I felt that sharp stab as I watched him struggle to express or understand very simple concepts. She would say, "In this picture the cat is ON the chair. Where is the cat in THIS picture?" It would be under the chair...and Stephen would look at her blankly. He didn't get that - not even remotely. She pressed on, and he repeated a few words, identified a couple of objects, but overall was not into this test at all. She told us that his preliminary results put him at about an 18 month level for both expressive and receptive language. I had guessed he'd test at about 2 years old...but either way, David and I looked at this precious boy, who was by then over in the corner playing, and the sorrow washed over us in a wave. This lady wasn't telling us anything we didn't already know instinctively, but hearing things in cold, clinical terms drives it all home. This five foot tall boy is like a baby. Here it is, laid out for you on this chart.

We had lunch at McDonalds, which of course was a highlight, as you all know - Stephen loves his burger and fries. And, we went back to the clinic. The next thing on the agenda was to meet with the "social worker." I put that in quotes because I still haven't quite figured out why he's called that, and also neither David or myself ever really understood what his purpose was in this whole matter. What follows is a brief paraphrase of our "meeting" with this pale, soft-spoken man in his sixties:

SW: "So...I understand that you suspect that Stephen might have autism..."

I kid you not. That is what he said. David and I looked at each other.

Me: "Umm....no....actually, we KNOW he does. He was diagnosed 7 years ago..."

David and I are thinking, "What the HELL?" I see it written on David's face and know it matches my own.

Me: "We're here to see the autism specialist, once a space opens up. We also wanted to have Stephen evaluated in all the other areas of development, and meet with the nutritionist...You see, Stephen was tested in these areas when he was 2, and we'd like to see where he falls on the spectrum now, and so forth...I've told about three people this stuff already."

SW: "Ahhh, yes...okay, okay..." Now, keep in mind, Mr. SW likes to nod and say "Yes, yes, okay, okay" in between approximately every third word that comes out of my mouth...even more annoying than the speech therapist. What IS it with these people?

David finally said, "I have to ask...exactly why are we meeting with you?" I had to stifle a laugh...not only did this seem like an interview that should've happened at the beginning of this whole process, but this man was like a doddering old uncle - trying to get things straight, and constantly chorusing, "Yes, yes...okay..." till I wanted to scream.

SW: "Well, I'm here to just kind of, you know...see how we can help you, and just, you know, bring things together and so forth..."

Me: "We need summer services. We need respite care. We need help with behavioral problems. We need to think about future planning, for when he's bigger than we are - finding out what options are out there..."

SW: "Okay...yes, yes..."

Me: "AAAGGGGHHHHHHHHHHHHHHH!" Well, not really, but I wanted to. "So, that's why we're here..."

What was supposed to be an hour long meeting lasted 20 minutes, and we shook hands on the way out - need I even tell you how cold and pale and fishy Mr. SW's hand was? *shudder*

The last thing on our schedule was meeting with the nutritionist. We managed to get Stephen on the scales, which I consider an accomplishment. He wouldn't stand under the thingie that measures height, so at one point we caught him standing against the wall, and she made a mark on the wall to measure. (Necessity is the mother of invention, you know.) We talked extensively about Stephen's diet and his nutritional needs - she wasn't overly concerned about his weight (130 pounds) because she said at his height (about 5 feet tall) that she thought he'd grow into his weight if we can keep it steady for now. She wanted us to add some calcium since he doesn't drink milk, and suggested Tums Smoothies. Since Stephen will actually take a children's chewable multi-vitamin, she said adding the Tums would be "no big deal."

Ha! I already knew how this would turn out, but I smiled and nodded. We went through her extensive list of food questions.

N: "Does he eat meat?"

Us: "McDonalds cheeseburgers and turkey hotdogs. That's it."

N: "What about chicken?"

Us: "Um...no, that was it."

N: "Okay, what about fruits - apples?"

Me: "No. No fruits."

N: "Bananas?"

Me: "Um...again, NO fruits. No vegetables. Well, except tater tots and french fries."

N: "Corn?"

Me: "No."

And on and on. Finally, she reminded us about the calcium, told us that his excessive intake of carbs probably isn't the cause for the massive amounts of gas the poor child generates (more likely it's due to his speed-eating and not chewing very well), and that she would be meeting with the team to give further recommendations.

And that was it...another long day, and we were all tired. We walked out to the car, and Stephen seemed happy enough. We'll go back in a few weeks to get the bundle of results and suggestions, and hopefully more resources.

Guess who we get to meet with to obtain all this information?

The cold, fishy-handed social worker. *shudder* This better be worth it.

One thing that hit David and I both pretty hard after the last few weeks was the notion that someday we might not be able to take care of Stephen full-time. We're trying to be realistic, but it obviously puts a damper on life to think about sending him away - even in the distant future. Neither of us want Kerry to inherit Stephen's full-time care, and we'll make sure that doesn't happen. But looking at Stephen now, as a boy, it is nearly impossible to contemplate. David put it best: "Who would take better care of him than us?" and for now that is absolutely true. At night when I'm getting him ready for bed, part of his routine is to ask for "tickles" on his back. I stand beside his bed, and he leans against my stomach as I scratch his back for a few minutes. It's a quiet, sweet moment and I inevitably think, "I don't want someone else doing this..." And for now, no one else will. What the future holds I have no idea. We're determined to be pragmatic but optimistic.

In the meantime, we've been on a fairly even keel lately. Both the boys have had colds but so far nothing major has developed. I'm not ready for Stephen to have another cough-till-you-puke thing going on.

I'll be back to report our findings after our meeting with...you know, that guy. *shudder*

(Oh, and Stephen won't take the Tums. Told ya so, lady!)

You say it's your birthday?

I really meant to write yesterday, to mark the occasion of Stephen’s ninth birthday.

But I didn’t. I thought about it late last night, and I couldn’t summon up the gumption. It’s funny – I got through Friday the 13th surprisingly smoothly…not that I’m superstitious. But bad luck seems to like me, and I figured that day would attract some seriously bad karma. It didn’t, though – that day turned out okay - at least for me. The kicker is that instead of one day of Friday the 13th-itis, we got a whole WEEKEND of it.

Ugh. I’m actually sighing as I contemplate putting into words what the weekend was like…

Friday evening went fairly well. I went to bed and became instantly comatose as usual. David decided to start reading a book he'd gotten: Autism's False Prophets: Bad Science, Risky Medicine, and the Search for a Cure by Paul Offit, and, though I have yet to read it, I know that when he put the book down at 1 a.m., he was feeling literally sick - we were duped, to put it plainly. So much money, time, effort, trauma...and now, to find out that a great deal (if not all) of the biomedical stuff is little more than snake oil is highly troubling to say the least. So with that weighing very heavily on his mind, David wasn't able to feel really perky and "birthday-ish" the next morning.

So the next day, Saturday, we had a party planned to celebrate Kerry’s eleventh birthday (which was actually last Wednesday - yep, our boys were born two years and four days apart) at the McWane Center, the hands-on science museum I mentioned a while back. We had invited about 10 of his friends, and they were all looking forward to a fun time. As far as our family was concerned, none of us really mentioned it, but we were all holding our breath, wondering how Stephen would do. He had enjoyed his time there last month a great deal – so we had some reason to believe this would work out well, and that Kerry would be able to enjoy his day fully. Things started out okay. Stephen seemed happy to be at McWane again, and almost all the kids showed up on time. We moved to the party room en masse and got the boys started with a snack – I even put Stephen at the group table and let him eat some Cheetos with the other kids. In hindsight that act was more for me than anyone else – it helps me to see him in a “normal” setting, even for a few minutes. I could glance at the table and for a brief moment autism wasn’t in the room. It resented being excluded from the party though, because it came back with a vengeance.

Last month at McWane, as I mentioned, we happily discovered that Stephen enjoyed eating a burger and fries in the food court. So, in Kerry’s party room, Stephen started getting a bit antsy. I moved him away from the group table, and asked him what he wanted. “Fies,” was the predictable response. Okay, I thought. He wants fries, and we can deal with that as soon as the food court opens. In fact, with Kerry’s party being at 10:00, we had planned on eating lunch there anyway. So I went to our party coordinator and asked her when the food court was going to open.

“Oh, um…let’s see. March 14th.”

Wait, I'm expecting a time, like, "11:00 a.m." A MONTH from now? Not good. Not good at all.

“March 14th? Umm…why? What…?” I couldn’t even get a sentence out. That sick feeling was building in my stomach.

“Yeah…they’re renovating it. It’s going to be really nice!” she replied in an annoyingly chirpy way.

I’m thinking that it damned well better be nice, because I knew all hell could possibly begin to break loose very soon. I went to David to break the news. It was definitely developing into a problem – Stephen’s “Fies!” demands were getting louder and he was starting to cry. At this point (silly us!) we thought that getting him some McDonalds food would solve the problem. One of the dads at the party got out his iPhone to search for nearby locations. I told the party coordinator that we were going to bring in McDonalds food (which is “against the policy” of the McWane Center) and that the McWane center was going to have to like it. We had an autistic kid expecting one thing and getting another – and in his world that is NOT good. She told me it was fine – that if anyone gave us any trouble to tell them she said it was okay. Thank goodness for chirpy and helpful party coordinators. They’re the salt of the earth, really.

So in the midst of all this I’m trying to pay attention to Kerry, whose party this was, after all. Thankfully a crowd of 10 eleven-year-old boys makes a bit of noise, so he was happily absorbed in that, and eventually in opening presents. A good friend stepped in and grabbed my camera to take pictures so that David and I could figure out how to get Stephen situated. Eventually, presents opened and cake finished, the boys got ready to go into the center to play. David went to load the car, and my parents walked around with Stephen for a while. Then David got Stephen and headed for the parking garage so they could get “fies burger donalds hungry,” bring it back in, and life could go on.

Ha. What fools we mortals are.

After a while, I called David’s cell and could hear Stephen screaming in the background. David said that Stephen headed straight for the food court when they got to that level, and when he saw the huge metal barricade closing it off, he started whining. By the time they got to the closest McDonalds and went through the drive-through, he had progressed to full-scale screaming. So even though he was getting the food he adores, the food court being closed had him completely thrown. McDonalds is our magic cure, our fallback position, our ace-in-the-hole! But not this time. David said that he felt helpless: "If THIS didn't work to calm him down, what hope is there?" By the time they made it back David was a limp dishrag. There’s nothing like an extended period of time in a car with a hysterically screaming kid who won’t/can’t listen to the explanation of what’s going on. It's very difficult to understand those feelings if you haven't been through it. Five minutes feels like a lifetime. You want to scream along with him - and at times, I have, at the top of my lungs. You want to grab someone, something, anything...and make it feel as bad as you feel.

When David and Stephen got back, I was waiting. You could see the tearstains on Stephen's face, and David looked deflated and exhausted. We got Stephen down to the vending area at a table, and he finally calmed down and ate his food. David just sat - in that empty space that I know so well...somewhere between a mental breakdown and wishing you could disappear. I told him that I'd take Stephen and let him try to find a quiet place. That always helps me when I've been through the wringer. We managed to get through the rest of the morning without too much else happening, aside from a few dunks in the open aquariums. I turned my back for a second to tell one of the moms goodbye, and I looked back to see Stephen with his face entirely submerged in the "Alabama gulf." Ah, jeez...

Finally everyone had their fill and we left. Kerry pronounced that it was the best birthday ever, so that was certainly a bright spot. We got home and hoped that the rest of the day would be calm. But...it just wasn’t. It was one of those days when Stephen had something going on that he couldn’t communicate and that I couldn’t figure out – he’d get frustrated with his DVD player or he’d ask again for fries or he’d want something to eat that we didn’t have…and he’d dissolve into tears, run to his bed and throw himself down. When I came in to check on him, he grabbed two handfuls of my hair and pulled, while kicking as hard as he could. David would come to rescue me and help me disentangle Stephen's hands from my hair. Then he’d cry more, and ask me to “push, peese” on his head or hands or legs. This cycle repeated itself over and over. By the time he finally fell asleep that night, I wanted to dig a deep, deep hole and crawl into it forever. David and I just looked at each other. Happy Valentine’s Day.

After a night of sleep, things usually look better. And they did. For a while. Waking up on his birthday was like any other day for Stephen. I went into his room and crawled into his bed with him. He laughed and giggled, and I said, “Today’s your birthday, buddy! You’re nine today.” He laughed and said, “Birt-day.” The morning wasn’t good, though – he began his morning routine as usual, with a yummy nutritious breakfast of a few chips and some water (oy) while he watched some DVDs. Sometimes the discs are so covered with crumbs and fingerprints that the player won't even attempt to read them. So, he was having problems. I went, wiped off the discs, got the visible crumbs out of the player, and tried again. Nothing. I tried another disc. And another. After four discs with no luck, I gritted my teeth and said, "Buddy, it's broken..." He said, "It's bo-kin..." and immediately took off running, crying as he threw himself onto our bed, and then there he was, right back into that cycle of frustration. I told David what had happened, and was already getting ready to go buy another DVD player. David went to the living room and kept fiddling with the thing till he somehow got it working again. He yelled, "It's working!" and so I managed to stop Stephen's tantrum long enough to say, "C'mon...it's working...let's go see." And so, at least for a bit, he seemed like he might be okay.

I left after lunch to pick up the giant birthday cookie and cake (for Kerry and Stephen, respectively) for our family birthday celebration for both the boys that afternoon. Of course, the bakery had the order wrong – they had switched the tickets and spent 10 minutes just looking for my order. You can imagine my surprise when presented with a giant cookie that said, “Happy Birthday Jody!” Then, when they finally gave me the right order, I noticed that Stephen’s cake (of which he ate exactly zero pieces) said “Happy Birthday STEPHIEN.”

Stephien?

When I ordered the cake, I spelled out the boys’ names no less than four times each, because English was not the first language of the person taking the order, so our communication was hampered, so to speak. I even used code words when spelling… “S as in Sam, T as in Tom, E as in Edward…” and on and on. And they still spelled it “Stephien.”

Now, in the big scheme of things, it’s not a big deal. Stephen wouldn’t know. But after all that had happened, I was more than a bit annoyed and refused to pay full price, even after a correction was done (sloppily, I might add). I refused to pay $20 for a cake with misspelled writing, so I complained, and the manager knocked off half the price.

Unbeknownst to me, while I was gone, Stephen had another disagreement with his DVD player, and took off into our bedroom to have yet another meltdown. As I learned later, it was a bad one - a category 5...the kind where you have to restrain arms and legs and try not to get headbutted, and you try to keep the furniture intact. And the DAMNEDEST thing is that you don't know what the hell is WRONG with the kid (aside from autism in general). What set this off? Is he still pissed about the McWane cafeteria? Did the DVD player just not play fast enough? Who knows? And while you wonder, you try to calm him - and it's like trying to calm down a wild animal. I am not degrading my own child when I say that, but it is the most apt description. The only thing he doesn't do is bite - at least not yet. It's incredibly disturbing to witness, and even more horrifying to be part of...

I got home with the cakes just as my parents and aunts were arriving. The mood was less than celebratory, to put it mildly. Stephen couldn’t have cared less if there was cake or ice cream. He never touched a bite. My dear friend and her daughter, who have known us since the boys were babies, came over also, and as always they brightened the mood. I apologized for the sense of tension, but as a good friend does, she understood. Having her there helped me to relax and even enjoy helping Stephen “oh-pen” his many DVDs. We got him two trains and a dozen DVDs – that’s it. But he was happy. We got them all unwrapped and he happily went back to his DVD player while the rest of us talked and had cake. I noticed that David was extremely quiet during the whole party - he was there, but he wasn't...he sat quietly in his chair, lost in thought, not eating anything. After all he'd been through with Stephen those two days, he had pretty much had it. I know the feeling. I'm pretty sure any parent of a child as affected by autism as Stephen is knows that feeling.

Kerry and my friend’s daughter played Rock Band for a while, and slowly the small group filtered out. I felt better for a while, but the good feelings ebbed away, leaving fatigue and what can only be described as shell-shock. David remained as quiet as he had been through the party, and the exhaustion showed on his face.

Stephen was pretty calm for the rest of the evening. Who knows why? Maybe the new DVDs charmed him. Sometimes you just can't explain the changes in his demeanor. The boys went peacefully to bed, and David and I watched TV. There’s a sort of numbness that sets in when you have this sort of chaotic weekend. I could barely think for the slight buzzing noise in my brain. In the back of my mind, and certainly in the front of David's, was the book. David keeps remembering when he first found the book Evidence of Harm by David Kirby. That book set off an alarm in him - and in a lot of other parents. We tried so hard to figure out how to help Stephen, and, as I said, we spent money...lots of it. We had fundraisers, we begged, we pleaded - because we were going to cure him! It's very disheartening to feel that we were suckered. But again...after I read Offit's book I would like to talk about this in a lot more detail. Suffice it to say that the initial reading of this book started off a weekend that went sour quickly.

Looking forward to next year, birthday-wise, I’m thinking that we’ll go all out and do whatever Kerry wants for his 12th birthday. For Stephen’s 10th, maybe we’ll go to McDonalds and get him a burger and fries, stick a candle in the burger, and get him a couple of presents. All the fuss and bother is not worth it – nor is it meaningful to him in any way.

My beautiful son, with his shiny brown hair, angelic face, beautifully shaped lips, and golden-green eyes is nine years old. Last night as I was putting on his diaper and his pajamas, I looked at him as he lay on his bed, knees bent out in that “froggy” position that babies assume when you’re changing them, and saw all the facets of Stephen reflected in his eyes. The love he feels for those who care for him, the laughter that is usually right under the surface, the anger and confusion about a gigantic world that sometimes makes no sense, and that particular strange something that I can only call autism – all of that, staring trustingly up at me as I got him ready for bed…then, a yawn…heavy eyelids…a murmured “nigh-nigh,” and he pulled the sheet up over his head, falling asleep almost instantly. I stood there thinking about the 48 hours we had just spent, and about the days to come. So much uncertainty, as always. I dread days like the ones we’ve just spent, and the unpredictability of it all makes it impossible to prepare. You just have to hang on tight and wait for time to crawl past.

One day someone in a high place will find a cure for this damnable disorder…I can only hope sooner rather than later. We wait with hope that is dampened by the difficulties of this life of ours.

So, a belated happy birthday to my beloved Kerry, joy of my life, who is growing up so fast yet is as loving and compassionate and full of humor as ever. And happy birthday to my baby boy, who in many ways will always be my baby…growing and changing and staying the same. To David - while at times it seems as if this life is surely going to wear us both down, somehow we've kept going. All we can do is keep pushing ahead, looking for opportunites, and hanging on, sometimes by the tiniest thread. To all of you who provide support to me, both virtually and literally - thank you. I love you all.

High Hopes

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...

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:

Christmastime is here...

Less than a week away, to be precise. I suppose I'm ready, at least on the surface. Most of the presents are purchased, if not wrapped, and things are settled as far as most of our holiday plans, such as they are...

Since I last wrote, Stephen has been doing pretty well. The child adores going to school - and today is the last day he'll be there for two weeks. I have to admit that I feel more than a little trepidation about this. The abrupt lack of structure and the innate craziness of holiday time could add up to problems for him. The only thing we can do is try to keep him busy, and do our best to plan a few outings so that he isn't cooped up inside all the time. But still, I worry. There's that squirmy feeling in my stomach that I really, really get sick of...

I think one of the main sources of my stress comes from that uneasy, unsure way of life. I sometimes feel like I'm walking on a tightrope, balancing a bunch of plates or something. Trying desperately to move forward but nearly motionless because I'm trying not to DROP anything. Will Stephen sleep tonight? Will he wake up too early and refuse to let me turn on the lights? Will he be okay at school? Will he get that stomach virus that's inevitably going around?

I just realized that last paragraph makes me seem like a world-class worrywart - and perhaps that's a fair assessment. But the problem is that those things DO happen. Maybe not regularly, but often enough to put the questions in my head frequently. And it gets crowded up there.

Last year's holiday time went pretty smoothly - in fact, I wrote about it here. I have no real reason to think that this year WON'T go as smoothly. So why torture myself with the "what if's"? I don't know. Maybe I'm just naturally a pessimistic person...for years I have often let myself imagine the worst possible outcomes, hoping to be pleasantly surprised when the worst DIDN'T happen.

That's kind of sick, now that I think about it.

Pausing to type this on my last day of work, as I contemplate two weeks off to enjoy Christmas and time with family, I am reminded of the holiday tradition of counting one's blessings, and I certainly have some worth counting...

A husband who has worked so hard this year as he helps take care of our family. Two boys who love me, and who make me smile every single day. My parents, who, while they are growing older, still do so much to help and support us. And I'm thankful to have a good job - in this day and age I am more grateful than ever for that security. I have friends who care, good music to listen to, and books waiting to be read.

I am thankful that Stephen has improved so much - those of you who have known me for years can see his progress. Some days it seems achingly slow...but undoubtedly he has come a long way. There's a long, long way to go. I hope that a (pleasant?) break will energize those of us walking beside him as he struggles to take steps forward. He is a joy and a bundle of cuddly affection - everyone who spends time with him loves him completely. Merry Christmas, baby mine.

I am thankful that Kerry is growing into the finest of young men. Yes, the Pokemon/Nintendo/Wii obsession gets a bit old, but at heart he is still our golden child. I look at him and see the chubby cheeked, tow-headed toddler that stole my heart a long time ago - and I also see a tall, handsome "almost-tween" with braces, hair in his eyes, and the best sense of humor a ten year old ever had. Merry Christmas, Kerry. You make me proud every day.

I am thankful that David has had such a good year, overall. Watching him grow and struggle with important issues, I have seen how strong he is. Merry Christmas, David. There are great things ahead for you. Trust that.

And I'm thankful to all of you - the named AND the nameless who have read and cried and supported me through this blog. Thank you for letting me give "voice" to my joys and sorrows, to the pain that sometimes threatens to tear me apart, and to the triumphs that lift me above the fray. I hope the Christmas season brings you bright shining moments and calm, peaceful times with loved ones. May the New Year bring us closer to a cure, and to each other.

An ill wind

So now I see what I get when I dare to blog about how well things are going.

About two weeks ago, Stephen started feeling a bit under the weather. Of course, it takes a series of complicated algorithms along with some pretty serious guesswork to figure out that he’s sick. Sometimes he acts like he feels bad and I have no idea what’s wrong – sometimes his cheeks feel hot but he acts like he feels fine. How’s a mother to know?

Why, take his temperature, you might say.

Yes, and after that I’ll split the atom in my kitchen.

Anyway, we determined that his throat was sore, and after a day or two of lessened appetite, I took him to the pediatrician who poked and prodded with considerable difficulty – and to her credit, swabbed his throat for strep herself (after he bit two of the swabs in half). Strep was negative, he seems to have a croup virus, keep an eye on him, etc. etc.

A few more days pass and a cough develops – a nasty, take-your-breath, cough-up-nastiness kind of cough. I heard a raspy crackle in his throat one night and then noticed after he went to sleep that his breathing was very shallow and rapid. I called the nurse-on-call, who very helpfully listened and counted his resps over the phone. She told me that yes, it was fast, but not alarmingly so. I also asked her if there was a kind of cough suppressant that comes in a tablet to allow crushing and mixing with tea (which is how I give Stephen his nighttime meds) – but she said no. She advised me to see how he was the next morning and maybe call the doctor’s office back. I did that, and the nurse asked me to bring Stephen back.

So back we go, and the doctor listens to his chest (which he sat still for!) and tells me that it still sounds okay. She said that if a few more days of nasty coughing went on, to let her know and they’d call in an antibiotic to the pharmacy, just in case. I reminded her that Stephen would sooner recite Shakespeare than take a thrice-daily/ 10-day course of Amoxicillin, and so she said she’d keep that in mind. Two more days pass, and the cough is persisting. He’s coughing every two minutes and all through the night. The doctor’s office calls in a “Z-pack,” that five-day wonder drug – and I went through the crushing of the pills and the mixing of the tea, and Stephen would have no part of it. He followed the same routine as with the cough syrup and the ibuprofen – swish in mouth, taste suspect ingredient, spit out entire contents of mouth wherever you happen to be sitting or standing. Of course the Z-pack pill was so bitter it would curl your nose hair…

It is supremely frustrating as a mother to have tools at your disposal that will help your child feel better, and not be able to use them…to be unable to tell your child that yes, it tastes yucky, but it’ll make your hot cheeks cool down, and your scratchy sore throat feel better, and your nasty cough calm down. One afternoon I was watching TV for a bit, and I saw a commercial for those Triaminic Thin Strips - a mom awoke to hear her son calling her because he had a bad cough, and she went to him, lovingly popped a Thin Strip into his mouth, and everybody settled back down peacefully. Easy! That stupid commercial made THIS overwrought, over-emotional mom cry like a baby. How can it be so easy for some people? How DARE they flaunt the ease with which they medicate their children! I couldn't get one of those strips in Stephen's mouth with a crowbar. And folks, I get so damned mad that things are often so over-the-top hard with him.

But, we kept going, much in the same way. He’d go to school and be okay, except for not eating much. By the time I’d get home from work, he’d have bright red cheeks and be hot all over. He’d spend the evenings in his bed, just laying there, not being Stephen…and my heart was breaking, not to mention the fact that I was just tired of him being sick. That sounds so awful, but honestly…sometimes it feels like there is no let-up, no reprieve at all.

Friday I took a rare day off from work, and spent the day doing whatever I wanted – what pure luxury! I was able to get outside and do some hiking, and those couple of hours were the best medicine I could’ve been given. To be alone – that in itself was an indescribable joy – and to be free to walk, or sit, or listen to the silence…this is something I must remember to repeat whenever I can. I brought along a small notebook, and stopped at one point to make some notes to mark this occasion. The silence was so absolute that I could hear leaves falling from the trees. I sat for many minutes just HEARING that. It was cool and quiet and lovely – I was surrounded by trees whose leaves had turned yellow-gold, and the small amount of sunlight that fell into the clearing was tinted with brightness and warmth. It was quite honestly the most life-affirming thing I’ve experienced in quite some time. In my journal I wrote in big letters: PEACE. That covered it.



And then, it was over. I picked up the boys at school (another rare delight for me) and we went to McDonald’s for a treat. Stephen picked over his favorite meal (“fries-burger-donalds-hungry” is the litany) and sort of gagged and threw up a little, right at the table.

Ah, jeez. His teacher had just told me a stomach virus was going around. Is there truly no balm in Gilead?

But he didn’t seem nauseated. After that…umm…situation…he picked back up and kept eating. David and Kerry and I sat there, eyes trained on Stephen as if he were a bomb that would explode any minute. Actually that’s a pretty accurate picture of things, now that I think about it.

We made it through, and went home, and Stephen was jumping and laughing which led to hacking and coughing…he went into a spasm of coughing and I could tell he was getting choked up. He walked to the living room and I followed…I was three steps behind him when he let loose and brought up everything in his stomach. And so I put him in the tub, cleaned up the floor, and wondered when the nightmare would end.

To make a long story short (well, sort of) I’ll tell you that he didn’t have the virus; he was merely coughing so violently that it made him gag. He made it through the rest of Friday and most of Saturday before it happened again. Thanks to David’s quick reflexes we avoided another huge mess – and by yesterday Stephen was noticeably better…acting more Stephen-ish and coughing a bit less, and certainly less violently.

He woke up at 2:00 a.m. today with a coughing jag, but it’s a drier, ticklier kind of cough, and this morning he didn’t cough at all, bless ‘im.

So life goes on, doesn’t it? I have been in contact with a compounding pharmacy to find out what our options might be for the next time (as there will surely be a next time) that this little guy of ours needs to take some medicine.

Wonder if they could compound some antibiotics which look, taste and smell like McDonald’s fries?

And so it goes

David asked me yesterday if I'd written a new entry lately, and I said no...then, I couldn't help but wonder (thanks, Carrie)...

Why haven't I written a new entry lately?

I guess the quick answer is that not much has been going on, in the larger sense. No huge crises, no earthshattering events, no new problems. So that's good.

The smaller everyday issues persist, of course. Stephen is no closer to being potty-trained than he was at age 3, and to be honest, I haven't concentrated on this issue. I have a book that is supposed to help, but I haven't taken the time to study it. I don't know how long I'd need to spend with him to accomplish this feat, and time is one of the things in short supply lately.

On a positive note, however, I did find a solution to the bedtime bed-wetting/leaking problem. He hasn't given me a hard time about wrapping him up in an extra-absorbent nighttime diaper, so thank goodness for small (HUGE) favors.

Stephen continues to be an extremely picky eater. He is overweight, and it worries me. We've tried to cut down on his serving sizes, but his food choices are basically: carbs, carbs, carbs, an occasional McDonald's burger, and more carbs. Not the best way to stay slim and trim, but again...I don't know how to MAKE him eat fruit or veggies. Perhaps a variation on the popular "first/then" concept would work...he understands that, so that's a possiblity. I'll file that away for future reference.

He is still having a love affair with the wonders that Internet Explorer provides...he spends HOURS surfing his favorite sites, with occasional breaks to hop on the couch, or run to his room. God forbid the DSL start to lag...if it does, then Stephen's mouse-clicking increases in frequency, which slows things down even more... It's very hard to try to teach him to wait, or that he's actually making things worse. Sometimes we have to re-start IE, and that nearly sends him over the edge.

It's sad to see him express his intelligence in so many ways, but at the same time be unable to understand the consequences of certain actions, or to understand that we're trying to help him when things slow down. It also becomes a bit taxing on the ol' nerves to hear the Dora the Explorer theme or the "Everybody Wants to Be a Cat" song from Aristocats start and stop and start and stop and start and stop...he loves repetition, and that's how he learns a lot of things, so I guess we can't have one without the other.

Thankfully he's as enthusiastic as ever about school - every weekend he asks, "Schoo?" and when we say, "We don't go to school today, today's Saturday (or Sunday)." He'll say, "All done schoo - today's Sunday." It's really cute, and it makes me feel great that he's so involved and enjoying his days there. Our school system is the best in the state as far as special education goes, and we are grateful every day for that.

Kerry is plugging along in school as well. He made all A's and was so proud - he worked hard for an A in math. He's such a great kid - we couldn't ask for a better son. I told him the other day that I was proud of him for how hard he works...but also, that I really, really LIKE him. And it's true. I enjoy spending time with him, and it occurred to me that some parents might not be able to say that with a straight face. We hit the jackpot with this kid.

And so it goes...the weather's turning cool here, and I couldn't be happier. This is my favorite time of year, as the days get shorter and the nights cool and crisp. It feels good to be home in the evenings, and to be planning for the holidays. Even with the constant stresses and strains of daily life, I find myself stretching a bit harder toward the positive side of life. The traditional joys of Thanksgiving and Christmas almost always get to me, and force me to be happier, just because I make that choice.

Thanks to everyone who consistently reads this blog, and offers support. You make things easier, and for that I am always grateful.