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.
Wednesday, March 25, 2009
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!)