This is going to be short and I wish it could be longer, but I am swamped at work and can't just jump into the zone and let it all come rushing out.
However...I needed just a minute to get some thoughts out, and this seems as good a place as any.
This morning as I waited at a traffic light to get on the interstate, I saw a homeless man walking down the exit ramp, a bag slung over each shoulder. He moved slowly through the cool morning air, paying close attention to the construction going on at this particular part of the interstate. He was dressed fairly neatly, with a rather jaunty fedora-style hat perched on his head, and he looked pretty clean. (Either this traffic light is very long, or I have really developed my powers of observation, no?)
My stream of consciousness, transcribed as accurately as possible: "Poor guy...wandering along. Wonder if he used to work construction, he seems interested in this stuff...walking through all that mud. Yuck. He's ambling - not often you see someone just amble along. He has no place in particular to go today. Maybe he's mentally counting his money to see if he can spring for an Egg McMuffin. He can do whatever he wants today. Nobody's waiting for him. Nobody can really tell him what to do or where to go..."
You know, you really should start to question your sanity when your compassion for a homeless man morphs into some bizarre kind of envy.
I'm being extreme (of COURSE) but there was definitely a part of me that envied the homeless guy. Of course I value my roof, food, warmth, and family. But I get so TIRED of planning, planning, planning - and still I live in a symphony of confusion and tension. At Stephen's recent IEP meeting, we got a lot of encouraging information for which I am very grateful - it sort of softens the blow from last week's results - but I also realized that we have got to micromanage his life even more...get more schedules going for home, for going out on errands, for understanding that he can't pitch a fit every day when I come home from work. My feet feel leaden walking up the stairs every day, wondering when the endless cacophony of "open?!!? friesburgerdonaldshungry???!!! heh-shoes (I'm clueless about that one)" will begin.
There is much more to say but the paperwork is piling up on my desk. I did catch the newest "Jenny McCarthy and her entourage on Larry King" episode Friday night. Don't even get me started.
But maybe this little entry will help me get through the day, and keep me focused on what I CAN control (which seems precious little). More schedules, more pictures, more social stories...a lot of work for a little boy who runs the show, in hopes that in ordering his life more precisely, the other three of us might find a life underneath all the clutter and noise and stress. We've been told that Stephen shouldn't be allowed to "run" our lives, which in theory makes perfect sense. "Easier said than done" would be my oh-so-original retort to THAT jewel.
For now, I'll put away my thoughts of walking off into the sunset, and banish the loop of "Ramblin' Man" that's been cycling through my head. But here's a promise: the next time I get the urge to tie my belongings up in a bandanna on the end of a stick, I'll be back.
Monday, April 6, 2009
Wednesday, March 25, 2009
Answers?
I don't want to write this.
In fact, even as I type, I still don't know if I'll put it out there. Deep down I know I'll probably click "Post," but for now, this needs to feel like a place to say whatever is brewing inside my head. It's a case of needing to get it out or else continuing to crumple up into a useless ball of nothing. I've been steadily shrinking into myself since yesterday, and that's gotta stop.
So here goes.
We got results yesterday from all the testing and screening and evaluating at the Sparks Clinic. And I was prepared to hear how much Stephen was lagging in speech (as I mentioned from the preview we got a few weeks ago). I was prepared to hear that his fine motor skills were poor. I was even ready to hear how "cognitively impaired" my son is...what I was NOT prepared to hear was that the opinion and general consensus of the team was that Stephen falls into the category of mental retardation. Severe. Severe mental retardation and autism... They even asked if we had had genetic testing done, specifically in regard to Fragile X, a genetic condition that can manifest itself in both autism and...the other thing. Why hasn't any doctor ever asked us this? Why didn't someone insist we have testing done? If this is truly an identifiable genetic condition, we could've saved money, sweat, tears, and stress in regard to all the DAN! bullshit.
The really weird thing here? A while back, David and I were discussing the need to have these evaluations done - how we hadn't had a definitive update on where Stephen falls on the spectrum, and David even mentioned that Stephen could have some MR (I can't even make myself type it out again). I bristled at the notion, and reacted quite mother-bearishly at the concept. I remember very clearly spitting out, "And what good would knowing THAT be?" And David calmly said, "Look...we need to know everything. The people who work with him need to know..."
Of course he was right. So, this isn't a new idea. Why did it shake us to the core of our being to hear someone say it? I suppose it would've been strange NOT to react in such a way. The more I think about it, the more I realize that part of the problem for me stems from the traditional "labels" - someone being RETARDED, you know...the kids in that OTHER building at school - even kids nowadays tossing out, "Oh, you're such a RETARD!" That's not my son. That's not Stephen. I sound so very PC, and I don't mean to...but right then, all those thoughts were coming at me like missiles. At that moment, I shed a tear or two, but the aftershocks grew worse throughout the evening. The idea that this could be genetic, and all the implications thereof...it's Fragile "X" - meaning, it would've come from ME. What would it mean for Kerry and for his future children? I was overwhelmed and sad and empty.
Stephen stayed up past 10, and I was absolutely pining for some solitude. I told David how desperately I needed to decompress...finally I went to our bedroom, put on headphones and listened to David Gilmour's last solo album, "On An Island" - beautiful, soaring, soulful music. I flipped through the lyrics booklet and slowly tried to relax. In the tiny pauses between songs, I could still hear Stephen in his room, fiddling with toys and talking to himself, and I would turn the volume up louder, determined to shut everything OUT and let the music fill my head, and the emptiness inside.
But it didn't. As I looked through the artwork in the CD booklet while listening to the music, I saw the images in a new light...ocean waves lapping against a small island, children playing in a creek as their laughter echoed across the water, a lovely couple walking hand-in-hand through the forest...and then, symphonic melody sinking into my soul while a heartrending, passionate guitarist coaxed pure, beautiful sounds from his instrument. I felt my own heart beating dully within my chest, echoing through the void. I wanted to be there, on that island, watching children play who have never heard of autism or cognitive impairment or mental retardation. I wanted to be that couple - in love and living fully in the little joys of life. I wanted that utter peace and simplicity...so much that I felt a physical ache.
Nothing we heard yesterday changes anything, not really. Stephen is still our child, our baby. Kerry still needs two strong parents. We need each other and the combined strength that comes only from a unified front. As one of the psychologists said, "After all, these are just numbers on a page. We can't accurately test kids with autism sometimes...you know your child better than anyone..." All true statements...We'll move on. Stephen will learn and grow. He'll make us laugh and he'll have us tearing out our hair. We'll continue to think pragmatically about the future, and hope that answers lie around the bend in the road. The path has wound around in a labyrinthine fashion up to now...lots of legwork resulting in very little forward progress. It has taken us through the darkness - momentary glimpses of light seem like only tricks of vision, at least at times.
This is a hard life. There's just no other way to put it. No matter how many times I'm told that things will work out, I will always carry these scars, as will we all. Being able to tell this story, one vignette at a time, helps. I will continue to write, to talk, to cry, to rail against the injustices I feel. It's the only way.
In fact, even as I type, I still don't know if I'll put it out there. Deep down I know I'll probably click "Post," but for now, this needs to feel like a place to say whatever is brewing inside my head. It's a case of needing to get it out or else continuing to crumple up into a useless ball of nothing. I've been steadily shrinking into myself since yesterday, and that's gotta stop.
So here goes.
We got results yesterday from all the testing and screening and evaluating at the Sparks Clinic. And I was prepared to hear how much Stephen was lagging in speech (as I mentioned from the preview we got a few weeks ago). I was prepared to hear that his fine motor skills were poor. I was even ready to hear how "cognitively impaired" my son is...what I was NOT prepared to hear was that the opinion and general consensus of the team was that Stephen falls into the category of mental retardation. Severe. Severe mental retardation and autism... They even asked if we had had genetic testing done, specifically in regard to Fragile X, a genetic condition that can manifest itself in both autism and...the other thing. Why hasn't any doctor ever asked us this? Why didn't someone insist we have testing done? If this is truly an identifiable genetic condition, we could've saved money, sweat, tears, and stress in regard to all the DAN! bullshit.
The really weird thing here? A while back, David and I were discussing the need to have these evaluations done - how we hadn't had a definitive update on where Stephen falls on the spectrum, and David even mentioned that Stephen could have some MR (I can't even make myself type it out again). I bristled at the notion, and reacted quite mother-bearishly at the concept. I remember very clearly spitting out, "And what good would knowing THAT be?" And David calmly said, "Look...we need to know everything. The people who work with him need to know..."
Of course he was right. So, this isn't a new idea. Why did it shake us to the core of our being to hear someone say it? I suppose it would've been strange NOT to react in such a way. The more I think about it, the more I realize that part of the problem for me stems from the traditional "labels" - someone being RETARDED, you know...the kids in that OTHER building at school - even kids nowadays tossing out, "Oh, you're such a RETARD!" That's not my son. That's not Stephen. I sound so very PC, and I don't mean to...but right then, all those thoughts were coming at me like missiles. At that moment, I shed a tear or two, but the aftershocks grew worse throughout the evening. The idea that this could be genetic, and all the implications thereof...it's Fragile "X" - meaning, it would've come from ME. What would it mean for Kerry and for his future children? I was overwhelmed and sad and empty.
Stephen stayed up past 10, and I was absolutely pining for some solitude. I told David how desperately I needed to decompress...finally I went to our bedroom, put on headphones and listened to David Gilmour's last solo album, "On An Island" - beautiful, soaring, soulful music. I flipped through the lyrics booklet and slowly tried to relax. In the tiny pauses between songs, I could still hear Stephen in his room, fiddling with toys and talking to himself, and I would turn the volume up louder, determined to shut everything OUT and let the music fill my head, and the emptiness inside.
But it didn't. As I looked through the artwork in the CD booklet while listening to the music, I saw the images in a new light...ocean waves lapping against a small island, children playing in a creek as their laughter echoed across the water, a lovely couple walking hand-in-hand through the forest...and then, symphonic melody sinking into my soul while a heartrending, passionate guitarist coaxed pure, beautiful sounds from his instrument. I felt my own heart beating dully within my chest, echoing through the void. I wanted to be there, on that island, watching children play who have never heard of autism or cognitive impairment or mental retardation. I wanted to be that couple - in love and living fully in the little joys of life. I wanted that utter peace and simplicity...so much that I felt a physical ache.
Nothing we heard yesterday changes anything, not really. Stephen is still our child, our baby. Kerry still needs two strong parents. We need each other and the combined strength that comes only from a unified front. As one of the psychologists said, "After all, these are just numbers on a page. We can't accurately test kids with autism sometimes...you know your child better than anyone..." All true statements...We'll move on. Stephen will learn and grow. He'll make us laugh and he'll have us tearing out our hair. We'll continue to think pragmatically about the future, and hope that answers lie around the bend in the road. The path has wound around in a labyrinthine fashion up to now...lots of legwork resulting in very little forward progress. It has taken us through the darkness - momentary glimpses of light seem like only tricks of vision, at least at times.
This is a hard life. There's just no other way to put it. No matter how many times I'm told that things will work out, I will always carry these scars, as will we all. Being able to tell this story, one vignette at a time, helps. I will continue to write, to talk, to cry, to rail against the injustices I feel. It's the only way.
Friday, March 13, 2009
Somebody to lean on?
So…support groups. Apparently they don’t really exist and are an urban myth; a scam perpetrated by well-intentioned but CLUELESS people.
About five years ago I went to a combined autism/Aspergers support group, and found that almost everyone there fell into the Aspergers side of things. As hard as I tried, I couldn’t relate to their problems – “My son will NOT stop talking about the flags of countries around the world.” “Well, my daughter can’t understand what personal space is…I’m so tired of my tennis games being interrupted when the nanny calls to complain.” So, you get the picture. There was a separate respite care program run out of the same location, and Stephen seemed to do okay there, but after a few meetings of the “support group,” I decided that it wasn’t for me, and we stopped going.
So, in the interim time, I’ve found support in many places – friends, family, even co-workers at times, and I’m grateful for it – but it just never quite filled that space inside me. That place that cries every day with the chronic sorrow of having this wonderful, terrifying child…unless you LIVE with that, you don’t understand, and you can’t. It’s just not possible. I have yearned for another mom to talk to – someone who knows how the search for extra-large but absorbent pull-ups can dominate your life; someone who GETS the fact that hearing a stomach virus is going around at school practically brings on a nervous breakdown because you just can’t deal with your kid getting it and then vomiting anywhere and everywhere; a mom who knows the heartbreak of seeing her child get more and more overweight and feels powerless to fix the problem…
Last fall I heard that the autism/Aspergers group had split, I felt some hope. They took some time off for the holidays, and I waited to hear about the next meeting in the new year so I could FINALLY go and get connected. By the time the group had reconvened, they had been recombined.
I got the emails announcing each month’s topic, and month after month I realized that none were relevant to us at this point in our lives. But last month, the subject matter caught my eye: “We’ll be hearing about summer programs, and we’ll also have some time for parents to talk and help each other out with problems…” This seemed promising, so, I called up the respite provider, signed Stephen up, and made my plans to attend the Friday night meeting.
I was still skeptical, though, in my cynical way…and I came pretty close to flaking out after I got home from work last Friday. I thought about how nice it would be to change clothes and do nothing. But, I told myself that I couldn’t keep complaining about the lack of support if I didn’t go out and look for it. So, I packed Stephen up, we went to McD’s, and headed for respite care/meeting.
He went in fairly willingly – the room was much like a schoolroom (in fact, it’s in a church so it’s a Sunday school room, I guess). There were a few kids there with various types of issues, but Stephen seemed fine. I gave a few instructions to the very capable lady in charge, along with my cell number, hugged Stephen, told him I’d be “right back.” He replied “Back…” and went off to explore the room. I went down the hall to the support group meeting.
I met the leader of the group, who recognized my name from her email lists, and talked to her for a few minutes about why I had stopped coming years before, etc. She seemed to really sympathize, and we talked for a few minutes about the HUGE chasm between autism and Aspergers. My cynicism meter dropped a notch as I took a seat at the table, had a cookie, and waited.
The meeting started with a presentation given by a local parks and recreation director who’s in charge of a “special needs” after school and summer program. The longer she talked, the further my mind slipped away. “If your child really wants to be on a swim team, we can help you deal with issues that might come up…or, maybe your daughter wants to take ballet but feels uncomfortable in groups…your son might want to participate in volleyball but the noises in the gym are difficult to handle…” This went on for 30 minutes. People asked questions and the very enthusiastic lady answered them.
Part two – a representative from a local autism/behavioral treatment center talked about the summer camps they’d be offering – “We’ll have lots of fun themes – maybe we’ll do karate one week, exploring space the next week…” Fun, right? Oh, and the only stipulations for children attending this center? They can’t need one-on-one attention, and they must be potty-trained.
All righty then. Zero for two.
But by then, the parents around the room were enthusiastically regaling everyone with how well their son/daughter/grandchild does at this center, how great the staff is, blah blah blah. The leader of the support group said, “Well, thanks to everyone. I know some of you had some issues you wanted to discuss…” I was mentally rubbing my hands together – now, this is what I came for…
One mom said, “Yeah, I had a question for the person from the center…what if my typical child wants to come to camp with her brother? They’re so close…” and as the question was being answered by the center’s rep, I thought, “Wow, I feel so bad for you…” UGH!
After that, there was a brief pause…I waited for another chatty person to speak, and as I was taking a breath to ask a question, the group leader clapped her hands, and said, “Okay! Thanks to our presenters, and thank you so much for coming!”
WHAT?!!?!???!
I sat there in shock. People were gathering up their things and LEAVING. I stood up, tears immediately running down my cheeks and said, “WAIT!...Wait…is there ANYONE here whose child is NOT high-functioning?” I looked around at the group of 25 or so. Silence. I was either met by blank looks or the tops of peoples’ heads as they suddenly became fascinated with their footwear. I said, “Is there NO ONE here whose child is like mine?” I pointed to one lady and said, “Ma’am, I’m sure your child has issues, but I can’t relate to her dream of riding horses and competing!” I looked at another woman, “And your son, who wants to be in a THEATRE group? My son still wears a DIAPER, and he can’t TALK to me!” I looked around. “I’m not diminishing your issues, but I cannot relate to ANY of you!”
People started muttering and then talking amongst themselves and some were very uncomfortably sliding toward the door. After some awkward glances in my direction, most people left. I stood there rooted on the spot. Two women finally felt bad enough for me that they came up to offer a bit of sympathy, tempered with “Yes, our kids are considered high-functioning…but when we first came to the group they weren’t doing as well…so we can sort of understand how you feel.” One of them handed me a slip of paper with the URL of an online support group for our area. I have joined, and will contribute if I can...but a great deal of my "social life" is on-line - I want a real live person to talk with about this stuff. They assured me that there WERE parents of other more seriously autistic kids online…I wondered aloud why they weren’t at the meeting (because some of their kids were in the respite room – I saw them!) and they said that it’s hard for them to get out, etc. I said, “Well, that’s what the respite is for, right?” They said, well, yes… “Maybe they’ll come next month!”
Yes. Maybe they will.
Will I, though? I told the leader of the group that I was disappointed, and she seemed to understand. I told her on the survey I filled out that I’d be glad to be in touch with other parents whose children were more similar to Stephen, and let them know that I would come to the meetings…beyond that I’m not sure what else to do.
I drove home in tears. I got home and told David about it, and cried some more. It seems that everything requires a fight, a struggle, a battle of some kind. I have been searching and fighting and looking for resources since Stephen was two years old. Yes, I’ve found a lot of help. David has researched and read and studied. But it gets tiring, you know? Always looking and looking…
I have found some new sources of support and contact via Facebook, which is great. However, the local support group scene turned out to be much, much ado about nothing. The respite care might come in handy in the future, if we wanted to take Kerry to a movie or something, so there’s that.
Wearily we go on. The quest continues.
About five years ago I went to a combined autism/Aspergers support group, and found that almost everyone there fell into the Aspergers side of things. As hard as I tried, I couldn’t relate to their problems – “My son will NOT stop talking about the flags of countries around the world.” “Well, my daughter can’t understand what personal space is…I’m so tired of my tennis games being interrupted when the nanny calls to complain.” So, you get the picture. There was a separate respite care program run out of the same location, and Stephen seemed to do okay there, but after a few meetings of the “support group,” I decided that it wasn’t for me, and we stopped going.
So, in the interim time, I’ve found support in many places – friends, family, even co-workers at times, and I’m grateful for it – but it just never quite filled that space inside me. That place that cries every day with the chronic sorrow of having this wonderful, terrifying child…unless you LIVE with that, you don’t understand, and you can’t. It’s just not possible. I have yearned for another mom to talk to – someone who knows how the search for extra-large but absorbent pull-ups can dominate your life; someone who GETS the fact that hearing a stomach virus is going around at school practically brings on a nervous breakdown because you just can’t deal with your kid getting it and then vomiting anywhere and everywhere; a mom who knows the heartbreak of seeing her child get more and more overweight and feels powerless to fix the problem…
Last fall I heard that the autism/Aspergers group had split, I felt some hope. They took some time off for the holidays, and I waited to hear about the next meeting in the new year so I could FINALLY go and get connected. By the time the group had reconvened, they had been recombined.
I was still skeptical, though, in my cynical way…and I came pretty close to flaking out after I got home from work last Friday. I thought about how nice it would be to change clothes and do nothing. But, I told myself that I couldn’t keep complaining about the lack of support if I didn’t go out and look for it. So, I packed Stephen up, we went to McD’s, and headed for respite care/meeting.
He went in fairly willingly – the room was much like a schoolroom (in fact, it’s in a church so it’s a Sunday school room, I guess). There were a few kids there with various types of issues, but Stephen seemed fine. I gave a few instructions to the very capable lady in charge, along with my cell number, hugged Stephen, told him I’d be “right back.” He replied “Back…” and went off to explore the room. I went down the hall to the support group meeting.
I met the leader of the group, who recognized my name from her email lists, and talked to her for a few minutes about why I had stopped coming years before, etc. She seemed to really sympathize, and we talked for a few minutes about the HUGE chasm between autism and Aspergers. My cynicism meter dropped a notch as I took a seat at the table, had a cookie, and waited.
The meeting started with a presentation given by a local parks and recreation director who’s in charge of a “special needs” after school and summer program. The longer she talked, the further my mind slipped away. “If your child really wants to be on a swim team, we can help you deal with issues that might come up…or, maybe your daughter wants to take ballet but feels uncomfortable in groups…your son might want to participate in volleyball but the noises in the gym are difficult to handle…” This went on for 30 minutes. People asked questions and the very enthusiastic lady answered them.
Part two – a representative from a local autism/behavioral treatment center talked about the summer camps they’d be offering – “We’ll have lots of fun themes – maybe we’ll do karate one week, exploring space the next week…” Fun, right? Oh, and the only stipulations for children attending this center? They can’t need one-on-one attention, and they must be potty-trained.
All righty then. Zero for two.
But by then, the parents around the room were enthusiastically regaling everyone with how well their son/daughter/grandchild does at this center, how great the staff is, blah blah blah. The leader of the support group said, “Well, thanks to everyone. I know some of you had some issues you wanted to discuss…” I was mentally rubbing my hands together – now, this is what I came for…
One mom said, “Yeah, I had a question for the person from the center…what if my typical child wants to come to camp with her brother? They’re so close…” and as the question was being answered by the center’s rep, I thought, “Wow, I feel so bad for you…” UGH!
After that, there was a brief pause…I waited for another chatty person to speak, and as I was taking a breath to ask a question, the group leader clapped her hands, and said, “Okay! Thanks to our presenters, and thank you so much for coming!”
WHAT?!!?!???!
I sat there in shock. People were gathering up their things and LEAVING. I stood up, tears immediately running down my cheeks and said, “WAIT!...Wait…is there ANYONE here whose child is NOT high-functioning?” I looked around at the group of 25 or so. Silence. I was either met by blank looks or the tops of peoples’ heads as they suddenly became fascinated with their footwear. I said, “Is there NO ONE here whose child is like mine?” I pointed to one lady and said, “Ma’am, I’m sure your child has issues, but I can’t relate to her dream of riding horses and competing!” I looked at another woman, “And your son, who wants to be in a THEATRE group? My son still wears a DIAPER, and he can’t TALK to me!” I looked around. “I’m not diminishing your issues, but I cannot relate to ANY of you!”
People started muttering and then talking amongst themselves and some were very uncomfortably sliding toward the door. After some awkward glances in my direction, most people left. I stood there rooted on the spot. Two women finally felt bad enough for me that they came up to offer a bit of sympathy, tempered with “Yes, our kids are considered high-functioning…but when we first came to the group they weren’t doing as well…so we can sort of understand how you feel.” One of them handed me a slip of paper with the URL of an online support group for our area. I have joined, and will contribute if I can...but a great deal of my "social life" is on-line - I want a real live person to talk with about this stuff. They assured me that there WERE parents of other more seriously autistic kids online…I wondered aloud why they weren’t at the meeting (because some of their kids were in the respite room – I saw them!) and they said that it’s hard for them to get out, etc. I said, “Well, that’s what the respite is for, right?” They said, well, yes… “Maybe they’ll come next month!”
Yes. Maybe they will.
Will I, though? I told the leader of the group that I was disappointed, and she seemed to understand. I told her on the survey I filled out that I’d be glad to be in touch with other parents whose children were more similar to Stephen, and let them know that I would come to the meetings…beyond that I’m not sure what else to do.
I drove home in tears. I got home and told David about it, and cried some more. It seems that everything requires a fight, a struggle, a battle of some kind. I have been searching and fighting and looking for resources since Stephen was two years old. Yes, I’ve found a lot of help. David has researched and read and studied. But it gets tiring, you know? Always looking and looking…
I have found some new sources of support and contact via Facebook, which is great. However, the local support group scene turned out to be much, much ado about nothing. The respite care might come in handy in the future, if we wanted to take Kerry to a movie or something, so there’s that.
Wearily we go on. The quest continues.
Thursday, March 5, 2009
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*
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
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!)
Monday, February 16, 2009
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.
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.
Friday, January 30, 2009
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...
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...
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: