So we have come through the child study portion of the SpEd process, and we now need evaluations. They want psych evals, social evals, educational evals. All the things I thought they would do the last two times I brought him to the system's attention. But that's water under the bridge now.
The next step is eligibility, and these evals are a part of that. The fear? That the popularity of dismissing ADHD will mean these evals will come out as not significant for eligibility. That his behavior will be labeled a discipline problem instead of a real issue to be addressed. We need help teaching him to cope and gain self control with extra challenge of the way his brain works. We're scared to death of being told "no" by the very people who are supposed to be helping.
After all, the last two times we did this, we were told he was just fine and didn't need any help.
When we went through this part of the process with Joey, the fear wasn't that we would be turned down. It was so obvious he needed service that the question wasn't "will he qualify?", but "how much will he qualify for?"
I spent a lot of this last meeting explaining that we need help, why we need help, and about being lectured by the psychiatrist about him not already being in the system. I think it was clear I was Unhappy, but did they move us on because there really is a problem, or because Momma Bear is roaring?
Why is there so much doubt and nerves? Well perhaps because after our last round of Child Find/Child Study, we were told he didn't need service. There was no asking for more evals, even though he spent the entire session in constant motion. What was the message to me as a mom? That the motion and behavior issues were my fault. After all, discipline is the job of the parent. It is my job to teach him to sit up straight at the table and follow instructions. It is my job to help him learn to listen to a story while sitting in a group. Just ask anyone on the street whose fault it is when a child is running around a restaurant, or talking loudly in a library, or when asked to do something, yells "No! I don't like you!" and hides in a corner instead of doing what he is told. Even when all the "usual tricks" you read of in magazines and see on SuperNanny fail (often spectacularly), the school just said he's fine, he's normal, this is just the way boys are. And if what the school says is true... well, it can't very well be the child's fault, he's just learning and being himself as best he can. And there must be a fault, because other kids don't do these things, and they are not acceptable behavior. That leaves... me.
In the meeting, the regular ed representative, a very kind lady and someone I feel is an excellent regular ed teacher, attempted to reassure me by explaining that kindergarten teachers do a lot of transitioning and many of the things my OT was recommending for Andy. We've been through kindergarten and seen the classes in action. We know the drill. Having to explain that we were talking about a matter of degrees- that these weren't suggestions for when Andy is in crisis, but things to do more consistently and more intensely in order to avoid a crisis. Once you are in the middle of an incident, it is too late. And we understand that ADHD is really a matter of degree. All boys have energy... but Andy has significantly more than you expect, and a quicker temper than you can anticipate without being very clear and consistent with everything. If you take him to the cafeteria without support, life will be explosive for the twenty minutes after you leave- not just wild. Explosive.
It's kind of like trying to explain the difference between a tantrum and a meltdown. You can get lost in semantics and forget there is a child here who needs support, more support than his peers seem to require, on a regular and consistent basis. Perhaps we are back to the questions of "why should I need a diagnosis?" and "Why can't kids just be taken as they are, and supported as they need, no matter their label?"
Perhaps I will muse more on that later.
Friday, July 17, 2009
Tuesday, July 14, 2009
Just wishin'
Just wishing they sold beer at the movie theater. I'd spend the day watching Harry Potter. Just sayin'.
Monday, July 13, 2009
You're Not Alone
One of the big reasons I blog is to give other folks a glimpse of life with an autistic child, to let them know that it is not something to be afraid of, and that there is someone else out here going through things you may be going through. There is a sense of support and security, a sense of comfort, in knowing you aren't the only one out here doing this, experiencing this, trying to help your child and your family.
I know I tend to keep the negatively neatly tamed here. Yes, we have bad days and weeks and months and they get blogged about, but the run-of-the-mill, every-day roller-coaster ride of having children, and especially special-needs children, I kind of leave out for the most part. It may seem our lives are all fun and roses and smiles. Like that last post about the beach? I left out the major double meltdown when clouds appeared on the horizon and I decided it was time to head home before rain hit. Why? Because personally, I find the fun more notable, and more worth remembering than the screaming that followed. Perhaps it is a leftover of being a mom- you keep the baby and forget the labor pains.
Some of my readers have commented to me what a lovely summer we are having. Yes, we are. And no, we aren't. Its been very much our usual roller-coaster. We are having some issues, some of them minor, some of them not so minor. Name-calling, biting, running, melting, hyperactivity, yes, they are still part of our lives.
So folks, you aren't alone.
If you’ve ever been frustrated with your child’s progress (or lack thereof) to the point of wanting to cry or scream (or actually crying or screaming), you’re not alone.
If you’ve ever been so afraid of a regression that you stayed up half the night trying to think of what to do for your child, you’re not alone.
If you’ve cried in public out of sheer stress of dealing with a melt down, you’re not alone.
If you’ve ever lost it in an IEP meeting, you’re not alone.
If you’ve ever prayed hard for a stiff drink while trying to get your melting-down child to a car that was clear across the parking lot, you’re not alone.
All those days and nights of stress, tears, tearing out your hair, worrying, studying, chasing children, and wishing your life was being spent somewhere else, and thought you were alone? You weren’t. I was right there with you.
I am still right here with you. I just want to put out that reminder that there are ups and downs all over, and the ups are every bit worth those downs. There is a reason God put wine upon this earth, and sometimes I need an extra glass, just like you.
If you're having one of those minutes, hours, days, weeks, summers... here's a hug for you. You aren't alone.
I know I tend to keep the negatively neatly tamed here. Yes, we have bad days and weeks and months and they get blogged about, but the run-of-the-mill, every-day roller-coaster ride of having children, and especially special-needs children, I kind of leave out for the most part. It may seem our lives are all fun and roses and smiles. Like that last post about the beach? I left out the major double meltdown when clouds appeared on the horizon and I decided it was time to head home before rain hit. Why? Because personally, I find the fun more notable, and more worth remembering than the screaming that followed. Perhaps it is a leftover of being a mom- you keep the baby and forget the labor pains.
Some of my readers have commented to me what a lovely summer we are having. Yes, we are. And no, we aren't. Its been very much our usual roller-coaster. We are having some issues, some of them minor, some of them not so minor. Name-calling, biting, running, melting, hyperactivity, yes, they are still part of our lives.
So folks, you aren't alone.
If you’ve ever been frustrated with your child’s progress (or lack thereof) to the point of wanting to cry or scream (or actually crying or screaming), you’re not alone.
If you’ve ever been so afraid of a regression that you stayed up half the night trying to think of what to do for your child, you’re not alone.
If you’ve cried in public out of sheer stress of dealing with a melt down, you’re not alone.
If you’ve ever lost it in an IEP meeting, you’re not alone.
If you’ve ever prayed hard for a stiff drink while trying to get your melting-down child to a car that was clear across the parking lot, you’re not alone.
All those days and nights of stress, tears, tearing out your hair, worrying, studying, chasing children, and wishing your life was being spent somewhere else, and thought you were alone? You weren’t. I was right there with you.
I am still right here with you. I just want to put out that reminder that there are ups and downs all over, and the ups are every bit worth those downs. There is a reason God put wine upon this earth, and sometimes I need an extra glass, just like you.
If you're having one of those minutes, hours, days, weeks, summers... here's a hug for you. You aren't alone.
Colonial Beach
Normally I would wait for Wednesday to put up pics, but Blogger ate my last post, I'm working to get ready for Andy's Child Study, and the boys are just too darn cute. 
Wednesday, July 08, 2009
Acceptability
One of the most annoying things that happens to us- fortunately far less often than it used to- is when people (complete strangers!) walk up to us in public places and recommend discipline for Joey. The behavior that people find unacceptable was most often that even as a larger child, he would often ride in the cart or walk around the cart. However, he does occasionally squeak or squeal in public when he has been denied an item or when being guided away from ordinary misbehavior, such as touching items on the shelves or begging for toys. Suggesting that I swat my child's bottom is simply and plainly Rude.
We now have our strategies in place for dealing with Rude People. My most common response now is to smile, thank them for their helpful advice, and walk away. If I am blocked at that point, I then note that Joey is autistic, and we are helping him learn to cope with public situations. This deals with the vast majority of Rude People. One thing I have not had to deal with is someone insisting that autism is the diagnosis-du-jour, a-la-Michael Savage. I think I would have to exert a great deal of energy to not slap someone who said something like that.
Fortunately, most the people we meet and strangers who approach us are mostly curious, helpful, considerate, gracious people who show much understanding and patience with us, and who can apparently read my bumper stickers or purse buttons (Yes! You can ask me about Autism!) The general push for awareness has had some effect.
With Andy's new diagnosis, I was expecting the ignorance of strangers- though honestly, I've only had a couple of encounters about Andy's behavior, as when it is just him and me, he's usually quiet. It is the ignorance of friends that has been startling.
After all, it is widespread in popular culture to consider ADHD to be a farce, a medical label for poor parenting rather than a real condition, somehow a conspiracy of bad parents to justify lack of discipline and medicate their kids into a stupor. Comments sections on parenting are full of this widespread attitude. The idea that kids are "overmedicated" for "rambunctiousness" even pops up in mainstream media. It is socially acceptable to deny ADHD and denigrate parents of children diagnosed with it.
However, I would think that if a friend of yours breaks the news that they have a child just diagnosed with the condition, upbraiding that friend just may not be the best way to show support and concern. Maybe that's just me. Starting an anti-ADHD diatribe and demanding second and third opinions may not be the best response to a friend who may already be upset and worried. I'm just saying. I can also assure you that it makes your friend very skittish to share the news with other people, and thus cut them off from needed support- especially when this is the reaction you get from not just one, but several "close" friends.
They may even turn to their blog and test the waters of their online friends, whom they consider more understanding of disability and conditions including ADHD.
Personally, I think the absolute best response I have gotten thus far was from Stimey, who (poor thing) got it full and immediate on the phone the day we got the verdict: "So... how do you feel about that?"
I am so fortunate to have you guys, folks like Farmwifetwo, Maddy, Niksmom, Club166, and Stimey who understand that a diagnosis is really about getting appropriate accommodations and services. Andy hasn't changed; we have a new perspective to consider what is best for him and how to help him learn important skills to get through life. Just like Joey didn't change when he was diagnosed as autistic. Andy is still going to be his energetic himself (I have no intention of medicating him unless it is proven absolutely necessary, just as we do not medicate Joey).
Yes, reminders of how to get through the process of getting Andy what he needs are appreciated; but lectures on ADHD as a "pseudo-condition" are really just annoying right now. I need real information. Lots of information. Accurate information. And I need it by the 15th, when our Child Study is scheduled.
We now have our strategies in place for dealing with Rude People. My most common response now is to smile, thank them for their helpful advice, and walk away. If I am blocked at that point, I then note that Joey is autistic, and we are helping him learn to cope with public situations. This deals with the vast majority of Rude People. One thing I have not had to deal with is someone insisting that autism is the diagnosis-du-jour, a-la-Michael Savage. I think I would have to exert a great deal of energy to not slap someone who said something like that.
Fortunately, most the people we meet and strangers who approach us are mostly curious, helpful, considerate, gracious people who show much understanding and patience with us, and who can apparently read my bumper stickers or purse buttons (Yes! You can ask me about Autism!) The general push for awareness has had some effect.
With Andy's new diagnosis, I was expecting the ignorance of strangers- though honestly, I've only had a couple of encounters about Andy's behavior, as when it is just him and me, he's usually quiet. It is the ignorance of friends that has been startling.
After all, it is widespread in popular culture to consider ADHD to be a farce, a medical label for poor parenting rather than a real condition, somehow a conspiracy of bad parents to justify lack of discipline and medicate their kids into a stupor. Comments sections on parenting are full of this widespread attitude. The idea that kids are "overmedicated" for "rambunctiousness" even pops up in mainstream media. It is socially acceptable to deny ADHD and denigrate parents of children diagnosed with it.
However, I would think that if a friend of yours breaks the news that they have a child just diagnosed with the condition, upbraiding that friend just may not be the best way to show support and concern. Maybe that's just me. Starting an anti-ADHD diatribe and demanding second and third opinions may not be the best response to a friend who may already be upset and worried. I'm just saying. I can also assure you that it makes your friend very skittish to share the news with other people, and thus cut them off from needed support- especially when this is the reaction you get from not just one, but several "close" friends.
They may even turn to their blog and test the waters of their online friends, whom they consider more understanding of disability and conditions including ADHD.
Personally, I think the absolute best response I have gotten thus far was from Stimey, who (poor thing) got it full and immediate on the phone the day we got the verdict: "So... how do you feel about that?"
I am so fortunate to have you guys, folks like Farmwifetwo, Maddy, Niksmom, Club166, and Stimey who understand that a diagnosis is really about getting appropriate accommodations and services. Andy hasn't changed; we have a new perspective to consider what is best for him and how to help him learn important skills to get through life. Just like Joey didn't change when he was diagnosed as autistic. Andy is still going to be his energetic himself (I have no intention of medicating him unless it is proven absolutely necessary, just as we do not medicate Joey).
Yes, reminders of how to get through the process of getting Andy what he needs are appreciated; but lectures on ADHD as a "pseudo-condition" are really just annoying right now. I need real information. Lots of information. Accurate information. And I need it by the 15th, when our Child Study is scheduled.
Monday, July 06, 2009
Update: War Paint
I took in the letter this morning. We go to Child Study within ten business days. Will now knock self out doing research.
Sunday, July 05, 2009
A Little Understanding: Preparing the War Paint
Friday was quite eventful here. We got to meet Team Stimey, which was exciting and wonderful; but we also met with a psychiatrist about Andy, on advice from our family doctor, who found his constant motion to be- well, not normal. It was an odd interview, with ups, downs, and both positives and negatives from many angles.
For one, I am a little suspicious of a pediatric psychiatrist with an office that is not designed and prepared for children. There were two overstuffed and cushioned couches, the kind my guys like to bounce upon, and I suspect so would many other children, especially ones with attention and hyperactivity issues (and this psychiatrist is supposed to be a specialist in ADHD). The doctor insisted we have an interview in this room, because it the room always used to interview the family; but being alone, I had to keep the guys with me. I can't imagine I am the only person to walk in on my own with my kids, so I was surprised to find in the room a single plastic table and chair- no toys, no crayons or coloring books, nothing for a child to actually do. Should I assume most five-year-olds can sit quietly on a couch while mom answers a lot of uninteresting questions? That is completely alien to me; I have no idea.
Consequently, my children promptly trashed the two couches. They put on their best display of the Witching Hour I could have possibly wished for. With nothing else to do, they turned their attentions to pillows and each other, and the plastic chair. Andy worked steadily to make himself a nest. Joey worked hard to use the same pillows for his own purpose.
The doctor asked Andy to sit on the couch for ten minutes, indicating the clock itself as a visual. I think if there had been a time timer available, we would have had better luck, but the fact that he couldn't even sit for two minutes was pretty impressive for the doctor.
And then I got a taste of how biomed parents must feel when sitting in a doctor's office explaining their experience. The doctor turned attention to Joey, and pronounced him an Asperger's child. When I explained his diagnosis was classic autism, not Asperger's Syndrome, we got into a bit of a heated debate on the matter, because Joey is so obviously social. This, according to this psychiatrist, precludes a classic autism diagnosis, because autistic people "don't like to socialize." I noted that this was not my experience; the autistic children I had met were very much interested in social interaction, but had communication and sensory issues which prevented them from doing so in a fashion that was expected. When Yale and Princeton ere shoved in my face, I tried to graciously back off the subject by noting that yes, my evidence was certainly anecdotal, and I would indeed be interested in the studies the doctor had participated in, though it would be difficult for me to draw a conclusion without actually meeting the subjects; and after all, we weren't here about Joey. We were here about Andy.
I find it concerning that people in an institution such as Yale would make that most greivous and discriminatory assumption, that a person who is not responding to you doesn't want to respond to you, rather than that they may be unable to respond to you. It is hand-in-hand with the idea that a non-verbal person has nothing to say. Prove to me that this person doesn't want to be social. Take out the sensory issues, the communication issues, and the frustration from being repelled themselves, and show this to me. Because honestly, it is not what I have seen. The autistic kids I have encountered, when given appropriate opportunity, have all shown interest in social contact... though often not in ways society might expect. Society doesn't expect a child to play with a stranger's hair, or say things at apparent random, or hit them. Yet these can all be attempts at contact, at social connection.
Meanwhile, back to the children destroying the office. Joey was removed from the equation briefly, but apparently the improvement was not considered significant. With Joey's return, the situation exploded. Andy even bit Joey, upturned the plastic table, and kicked at me. I haven't seen him that bad in a long time. Yes, we were in rare form; but certainly this is critical moment when we need advice and help! The doctor did not beat about the bush, they wanted to know what steps I had taken to get him help. I explained that I had been through Child Find twice already, and been told he was fine; I had moved him to his school to give him more movement and opportunities for heavy work and sensory self-regulation. Also, I had presented a letter from my private OT with accommodation recommendations, only to be brushed aside. The doctor was, to be gentle and reserved in my words, appalled. Why had I not been given an IEP? (and I did not appreciate being upbraided about it, especially after I had just said I had been through Child Find not once, but twice.) I think the doctor was just as appalled that no one in the Child Find had picked up on the problem.
Because according to the doctor, Andy has a very severe case of ADHD. Severe enough that the doctor wrote a letter to present to the school to that effect, and STRONGLY (with double underscore and large letters) recommending Andy have an IEP- and didn't charge me the usual $35 for it.
There were bright and encouraging points in this conversation. First, the doctor wants to avoid medication if at all possible. They even impressed upon me more than once that the school had no right to tell me to medicate my child, they had to provide appropriate accommodations with they assumption that he would not be medicated. I got the feeling this was a common problem, and I was actually glad to have this emphasized. The doctor wants to do nothing at all until October, so that the school is forced to deal with Andy as-is and discover his needs and challenges.
I have no intention of waiting two months for Andy to get appropriate educational accommodations. I intend to take the letter to the school Monday morning and make a formal request for another evaluation. Maybe someone will get the idea that I am not nuts (as I am sure they consider me right now). Well, maybe "nuts" is too unprofessional; "pushy"? "demanding"? "crazy as a loon"?
Am I concerned that we had a diagnosis of ADHD because we went to an ADHD specialist? A little, considering some of the other issues we encountered at the office. So JoeyAndyDad and I have done what we always do when presented with something we feel we are completely ignorant of: we have started to do the research. I'll keep you posted as to what we find when we get an idea of where to look things up (ie, when we've gotten a good bit beyond our Google PhDs and into real materials). I also will be taking a copy of my letter to our family doctor, and see what information I can get there. I may even contact Kluge. But again, I am left with a lot of questions, not the least of which is, what is the connection between ADHD and sensory processing disorder, and the autism spectrum?
But I have a lot of hard questions to be asking the school first, and I want answers, now.
For one, I am a little suspicious of a pediatric psychiatrist with an office that is not designed and prepared for children. There were two overstuffed and cushioned couches, the kind my guys like to bounce upon, and I suspect so would many other children, especially ones with attention and hyperactivity issues (and this psychiatrist is supposed to be a specialist in ADHD). The doctor insisted we have an interview in this room, because it the room always used to interview the family; but being alone, I had to keep the guys with me. I can't imagine I am the only person to walk in on my own with my kids, so I was surprised to find in the room a single plastic table and chair- no toys, no crayons or coloring books, nothing for a child to actually do. Should I assume most five-year-olds can sit quietly on a couch while mom answers a lot of uninteresting questions? That is completely alien to me; I have no idea.
Consequently, my children promptly trashed the two couches. They put on their best display of the Witching Hour I could have possibly wished for. With nothing else to do, they turned their attentions to pillows and each other, and the plastic chair. Andy worked steadily to make himself a nest. Joey worked hard to use the same pillows for his own purpose.
The doctor asked Andy to sit on the couch for ten minutes, indicating the clock itself as a visual. I think if there had been a time timer available, we would have had better luck, but the fact that he couldn't even sit for two minutes was pretty impressive for the doctor.
And then I got a taste of how biomed parents must feel when sitting in a doctor's office explaining their experience. The doctor turned attention to Joey, and pronounced him an Asperger's child. When I explained his diagnosis was classic autism, not Asperger's Syndrome, we got into a bit of a heated debate on the matter, because Joey is so obviously social. This, according to this psychiatrist, precludes a classic autism diagnosis, because autistic people "don't like to socialize." I noted that this was not my experience; the autistic children I had met were very much interested in social interaction, but had communication and sensory issues which prevented them from doing so in a fashion that was expected. When Yale and Princeton ere shoved in my face, I tried to graciously back off the subject by noting that yes, my evidence was certainly anecdotal, and I would indeed be interested in the studies the doctor had participated in, though it would be difficult for me to draw a conclusion without actually meeting the subjects; and after all, we weren't here about Joey. We were here about Andy.
I find it concerning that people in an institution such as Yale would make that most greivous and discriminatory assumption, that a person who is not responding to you doesn't want to respond to you, rather than that they may be unable to respond to you. It is hand-in-hand with the idea that a non-verbal person has nothing to say. Prove to me that this person doesn't want to be social. Take out the sensory issues, the communication issues, and the frustration from being repelled themselves, and show this to me. Because honestly, it is not what I have seen. The autistic kids I have encountered, when given appropriate opportunity, have all shown interest in social contact... though often not in ways society might expect. Society doesn't expect a child to play with a stranger's hair, or say things at apparent random, or hit them. Yet these can all be attempts at contact, at social connection.
Meanwhile, back to the children destroying the office. Joey was removed from the equation briefly, but apparently the improvement was not considered significant. With Joey's return, the situation exploded. Andy even bit Joey, upturned the plastic table, and kicked at me. I haven't seen him that bad in a long time. Yes, we were in rare form; but certainly this is critical moment when we need advice and help! The doctor did not beat about the bush, they wanted to know what steps I had taken to get him help. I explained that I had been through Child Find twice already, and been told he was fine; I had moved him to his school to give him more movement and opportunities for heavy work and sensory self-regulation. Also, I had presented a letter from my private OT with accommodation recommendations, only to be brushed aside. The doctor was, to be gentle and reserved in my words, appalled. Why had I not been given an IEP? (and I did not appreciate being upbraided about it, especially after I had just said I had been through Child Find not once, but twice.) I think the doctor was just as appalled that no one in the Child Find had picked up on the problem.
Because according to the doctor, Andy has a very severe case of ADHD. Severe enough that the doctor wrote a letter to present to the school to that effect, and STRONGLY (with double underscore and large letters) recommending Andy have an IEP- and didn't charge me the usual $35 for it.
There were bright and encouraging points in this conversation. First, the doctor wants to avoid medication if at all possible. They even impressed upon me more than once that the school had no right to tell me to medicate my child, they had to provide appropriate accommodations with they assumption that he would not be medicated. I got the feeling this was a common problem, and I was actually glad to have this emphasized. The doctor wants to do nothing at all until October, so that the school is forced to deal with Andy as-is and discover his needs and challenges.
I have no intention of waiting two months for Andy to get appropriate educational accommodations. I intend to take the letter to the school Monday morning and make a formal request for another evaluation. Maybe someone will get the idea that I am not nuts (as I am sure they consider me right now). Well, maybe "nuts" is too unprofessional; "pushy"? "demanding"? "crazy as a loon"?
Am I concerned that we had a diagnosis of ADHD because we went to an ADHD specialist? A little, considering some of the other issues we encountered at the office. So JoeyAndyDad and I have done what we always do when presented with something we feel we are completely ignorant of: we have started to do the research. I'll keep you posted as to what we find when we get an idea of where to look things up (ie, when we've gotten a good bit beyond our Google PhDs and into real materials). I also will be taking a copy of my letter to our family doctor, and see what information I can get there. I may even contact Kluge. But again, I am left with a lot of questions, not the least of which is, what is the connection between ADHD and sensory processing disorder, and the autism spectrum?
But I have a lot of hard questions to be asking the school first, and I want answers, now.
Saturday, July 04, 2009
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