lisajceledon@...

I have a few questions (doubts? insecurities?) relating to my younger son, Kaiden, and as I was writing them out (a few attempts, over the last few weeks), I did end up answering a lot of my own questions about some things to try, and possible solutions.  I'm still feeling overwhelmed by his behavior lately; he's clearly made some shifts developmentally and has been having really intense tantrums several times daily-- it's taking me time to sort out where and how his needs have changed, and to recognize where my expectations needed a major adjustment.

My remaining question now (since I've gathered enough ideas about things to try to last me a little while), is about how to handle medical professionals (also, dentists), when your child presents a lot of developmental characteristics that are considered to require specialized evaluation and support and treatment.  Every time I have taken Kaiden in to see a doctor, they are so preoccupied with his development being atypical, that they ignore or get sidetracked from the medical (or dental) issue I am seeking treatment for for him, instead focusing on getting his development evaluated and treated, and treating the health concerns as secondary.

I think part of it is that the children are on medi-cal, and there is a push (in the county we live, at least, not sure what it is like elsewhere), to have low-income children evaluated for learning disabilities and developmental disorders, and educating the parents about them, and ensuring their children receive services if they need them.  I think, to the doctors at the clinic we've been going to, this is a clear case of a parent being in denial that professional services are necessary. 

I am feeling overwhelmed and doubtful, because it keeps coming up, and I don't know what to say to doctors/dentists. He broke a tooth at the end of last year and has extensive decay through some of his top teeth, including two molars.  He has seen two dentists since, and the second one said outright that the decay in his mouth is causing speech delay and developmental delay.  We hadn't discussed that he had any developmental delays, though the fact that his speech and socialization is atypical for his age is obvious.  She didn't give me any real information (I looked it up, and couldn't find any real evidence that there are real, proven links between developmental delays and tooth decay.  I mean, google has limits, I think, so I could just not have found that information)-- and I don't feel like I have enough information to make a sound decision about what to do for his teeth.  Both dentists said that he would need extensive work under GA.
But I feel like I don't really have an idea of how necessary it is.  I do know it will be a very big deal for him.  He is very fearful of doctors and has difficulty getting weighed and measured and his eyes and ears checked for regular check ups (mostly hides his face and clings to me and cries-- my older son was always like this as well).  I don't want him to go through a big medical procedure and all that is involved with going under anesthesia (like, not being able to eat or drink or nurse before hand, and not being able to understand why, as one example) if it is not necessary for his health and well-being. If it *is* necessary, then it is a matter of supporting him through it as best I can.

My main concern is if it is causing him discomfort or pain-- but it's hard to tell whether or not that is the case, and both dentists both said something along the lines of, of course it's causing him pain, and even if it's not, it's still a big huge problem.  The first dentist very pointedly said that pain from tooth decay causes behavioral issues and attention deficits.  Both of them also said that the work would be rendered useless if a strict regimen of dental care and diet was not also followed (a regimen I know he will not be willing or able to adhere to anything but loosely).

I don't want him to be in pain or to be suffering because of his teeth. I do know that he no longer wants to brush his teeth in the front (so I've been adding xylitol to his water during the day, which he likes, and also rinsing with it at night when he's willing) and I feel like the information being given to me by the professionals is potentially misguided, or inaccurate, and I'm not sure I can trust it.  Both dentists, though pediatric dentists, seemed very thrown off by his being less than perfectly cooperative-- though he was much more cooperative with both of them than I expected (especially the second time! My five year old wouldn't have been willing to cooperate as much) and behaved respectfully in both of their offices, and very much totally in line with what can be expected from many children his age.

Part of my fear about *not* doing anything is of appearing neglectful-- both in terms of his teeth and his development--to medical professionals--especially since both issues are obvious and apparent/visible (I feel like, it looks like a double whammy, or that one confirms the other is a Big Problem).  What can I say to the doctors and such when they say things like, you need to have his development evaluated, or, it seems like he might have a developmental problem, or What are you doing about his speech delay? You need to be on this right now, this is a big problem (that was one of the dentists, actually-- and to him I just lied. I said I was in contact with a specialist. I mean, I have since *contacted* a specialist, so, there's that. I just left out the 'planning to' part).

Because of Kai's fear of being at the doctors, the stress it causes him, the concerns it causes them that he isn't developing 'on schedule', I have not kept up with his regular check-up appointments (though we did make follow up visits when there was a health problem), and have been looking for a new doctor.  I feel like that reflects poorly too, though, not having kept them up.  I think I'm second guessing myself a lot lately, feeling thrown off perhaps and overwhelmed by Kaiden's shift into tantruming so much. 

I have asked for pediatrician recommendations from locals but haven't come up with any leads that are covered by his insurance-- I think I need to learn to speak to the doctors regardless, and be more calm about all of it.  I want to be a good advocate for him, while also being respectful and not drawing undue attention or suspicion to the ways in which we're not 'running on the treadmill' as someone put it recently (sorry, I forget who wrote it, it was in one of the Always Learning discussions last year).  I have not always been a good advocate for my children or myself, and I want to learn to do it better.

Thank you,
Lisa C 

K Pennell

Sorry you and he are going through this.

Having had oodles of dental problems myself, I will say if he's avoiding brushing there (but used to do it) it could be that it hurts. I've had the worst pain of my life with tooth abcess. While I worried about getting it fixed, it was a HUGE relief and within a few days I felt SO much better. 

Hope you are able to find a different doctor, too. Are you able to expand your search?


From: "lisajceledon@... [AlwaysLearning]" <[email protected]>
To: [email protected]
Sent: Tuesday, February 10, 2015 2:25 AM
Subject: [AlwaysLearning] talking to concerned doctors, and dentists



I have a few questions (doubts? insecurities?) relating to my younger son, Kaiden, and as I was writing them out (a few attempts, over the last few weeks), I did end up answering a lot of my own questions about some things to try, and possible solutions.  I'm still feeling overwhelmed by his behavior lately; he's clearly made some shifts developmentally and has been having really intense tantrums several times daily-- it's taking me time to sort out where and how his needs have changed, and to recognize where my expectations needed a major adjustment.

My remaining question now (since I've gathered enough ideas about things to try to last me a little while), is about how to handle medical professionals (also, dentists), when your child presents a lot of developmental characteristics that are considered to require specialized evaluation and support and treatment.  Every time I have taken Kaiden in to see a doctor, they are so preoccupied with his development being atypical, that they ignore or get sidetracked from the medical (or dental) issue I am seeking treatment for for him, instead focusing on getting his development evaluated and treated, and treating the health concerns as secondary.

I think part of it is that the children are on medi-cal, and there is a push (in the county we live, at least, not sure what it is like elsewhere), to have low-income children evaluated for learning disabilities and developmental disorders, and educating the parents about them, and ensuring their children receive services if they need them.  I think, to the doctors at the clinic we've been going to, this is a clear case of a parent being in denial that professional services are necessary. 

I am feeling overwhelmed and doubtful, because it keeps coming up, and I don't know what to say to doctors/dentists. He broke a tooth at the end of last year and has extensive decay through some of his top teeth, including two molars.  He has seen two dentists since, and the second one said outright that the decay in his mouth is causing speech delay and developmental delay.  We hadn't discussed that he had any developmental delays, though the fact that his speech and socialization is atypical for his age is obvious.  She didn't give me any real information (I looked it up, and couldn't find any real evidence that there are real, proven links between developmental delays and tooth decay.  I mean, google has limits, I think, so I could just not have found that information)-- and I don't feel like I have enough information to make a sound decision about what to do for his teeth.  Both dentists said that he would need extensive work under GA.
But I feel like I don't really have an idea of how necessary it is.  I do know it will be a very big deal for him.  He is very fearful of doctors and has difficulty getting weighed and measured and his eyes and ears checked for regular check ups (mostly hides his face and clings to me and cries-- my older son was always like this as well).  I don't want him to go through a big medical procedure and all that is involved with going under anesthesia (like, not being able to eat or drink or nurse before hand, and not being able to understand why, as one example) if it is not necessary for his health and well-being. If it *is* necessary, then it is a matter of supporting him through it as best I can.

My main concern is if it is causing him discomfort or pain-- but it's hard to tell whether or not that is the case, and both dentists both said something along the lines of, of course it's causing him pain, and even if it's not, it's still a big huge problem.  The first dentist very pointedly said that pain from tooth decay causes behavioral issues and attention deficits.  Both of them also said that the work would be rendered useless if a strict regimen of dental care and diet was not also followed (a regimen I know he will not be willing or able to adhere to anything but loosely).

I don't want him to be in pain or to be suffering because of his teeth. I do know that he no longer wants to brush his teeth in the front (so I've been adding xylitol to his water during the day, which he likes, and also rinsing with it at night when he's willing) and I feel like the information being given to me by the professionals is potentially misguided, or inaccurate, and I'm not sure I can trust it.  Both dentists, though pediatric dentists, seemed very thrown off by his being less than perfectly cooperative-- though he was much more cooperative with both of them than I expected (especially the second time! My five year old wouldn't have been willing to cooperate as much) and behaved respectfully in both of their offices, and very much totally in line with what can be expected from many children his age.

Part of my fear about *not* doing anything is of appearing neglectful-- both in terms of his teeth and his development--to medical professionals--especially since both issues are obvious and apparent/visible (I feel like, it looks like a double whammy, or that one confirms the other is a Big Problem).  What can I say to the doctors and such when they say things like, you need to have his development evaluated, or, it seems like he might have a developmental problem, or What are you doing about his speech delay? You need to be on this right now, this is a big problem (that was one of the dentists, actually-- and to him I just lied. I said I was in contact with a specialist. I mean, I have since *contacted* a specialist, so, there's that. I just left out the 'planning to' part).

Because of Kai's fear of being at the doctors, the stress it causes him, the concerns it causes them that he isn't developing 'on schedule', I have not kept up with his regular check-up appointments (though we did make follow up visits when there was a health problem), and have been looking for a new doctor.  I feel like that reflects poorly too, though, not having kept them up.  I think I'm second guessing myself a lot lately, feeling thrown off perhaps and overwhelmed by Kaiden's shift into tantruming so much. 

I have asked for pediatrician recommendations from locals but haven't come up with any leads that are covered by his insurance-- I think I need to learn to speak to the doctors regardless, and be more calm about all of it.  I want to be a good advocate for him, while also being respectful and not drawing undue attention or suspicion to the ways in which we're not 'running on the treadmill' as someone put it recently (sorry, I forget who wrote it, it was in one of the Always Learning discussions last year).  I have not always been a good advocate for my children or myself, and I want to learn to do it better.

Thank you,
Lisa C 




Sarah Thompson

How are you responding to their efforts to code him, verbally and non-verbally? Is there a way to help them see that you are aware of who your son is amd the ways in which he may differ from his peers, but that you homeschool and therefore do not focus on coding but rather on responding to him, one on one, where he is? Maybe help them see how he is getting the ultimate in customized care. Since medical professionals have been made an arm of cps, they can be blinded by their mission.

Sarah


Joyce Fetteroll

> On Feb 10, 2015, at 8:12 AM, Sarah Thompson thompsonisland@... wrote:
>
> How are you responding to their efforts to code him, verbally and non-verbally?

What is "code him"? What's the plain English version?

> Is there a way to help them see that you are aware of who your son is

Confidence is a huge help. As is telling them as little as possible. There's no need to get doctors to understand what you're doing but you want them to feel confident that you're aware. Accept suggestions. If it will soothe a doctor's fears, write down recommendations. Tell them you'll look into it.

Be aware they're trying to help. They're offering information they believe will help with a situation you may not understand.

They are also coming from a point of view of preparing kids to do well in school. Some concerns you might be able to answer with "In school that would be an issue. Since we're working one on one it isn't causing a problem yet. But I'm aware and keeping an eye on it."

Joyce

Sarah Thompson

Coding is what they call it in schools when kids are designated as entitled to special services. It's a real term in school-world, as far as I know.

Sarah


Lisa J Celedon

<<What are you doing about his speech delay? You need to be on this right now, this is a big problem (that was one of the dentists, actually-- and to him I just lied. I said I was in contact with a specialist. I mean, I have since *contacted* a specialist, so, there's that. I just left out the 'planning to' part).>>
A speech specialist, that is, to be clear. 
Sent via the Samsung GALAXY S®4, an AT&T 4G LTE smartphone

Sandra Dodd

-=-Coding is what they call it in schools when kids are designated as entitled to special services. It's a real term in school-world, as far as I know.-=-

Problem.
There is nothing that "they" say in ALL schools.
Terminology like this, and laws, are different in different places.

It's just ONE of the reasons I would rather keep the questions and discussions here general and philosophical. Anything very particular to one province, district, state or country should be discussed on a more local group. And people should be aware that what is "truth" and "fact" and "real term" is not universal.

Sandra

Sarah Thompson

Okay. "Labeled as qualifying for special services from the state."

Sarah

On Feb 10, 2015 3:08 PM, "Sandra Dodd Sandra@... [AlwaysLearning]" <[email protected]> wrote:
 

-=-Coding is what they call it in schools when kids are designated as entitled to special services. It's a real term in school-world, as far as I know.-=-

Problem.
There is nothing that "they" say in ALL schools.
Terminology like this, and laws, are different in different places.

It's just ONE of the reasons I would rather keep the questions and discussions here general and philosophical. Anything very particular to one province, district, state or country should be discussed on a more local group. And people should be aware that what is "truth" and "fact" and "real term" is not universal.

Sandra


heatherpie@...

=What can I say to the doctors and such when they say things like, you need to have his development evaluated, or, it seems like he might have a developmental problem."

I think the best thing I do when we go to the doctor and they are recommending things I am unsure of is to ask a lot questions. If Austin is scared of a procedure I let his doctors know that and ask for ways to make it less scary. I think if they feel I am well informed when I say "No thanks." they are less concerned.

If you're at the doctors for a cold and they want to talk about developmental delays a firm, but polite, "I appreciate your concern, but right now I want to get him well. Can we talk about developmental stuff at our next visit?" should be enough to bring it back to why you are there. 

Knowing what answers they are looking for is helpful. We had a urologist who was asking a lot about what our day looked like. I thought it was going to be another session of "ask the homeschooler", but turns out he was asking because urologist like for kids to be on a pee schedule. Once I caught on I was able to give a light, vague answer that satisfied him so we could move on.

Austin has six baby teeth that need to be pulled. We went to several dentists before we found one who was willing to take small steps, go at Austin's pace, and stop when he needed her too. We were told by a previous dentist that Austin had to have extensive work done on his teeth under general anesthesia and was unwilling to look at other options. Our current dentist really understood the importance of gaining Austin's trust and has done a couple small cleanings and is talking to Austin about taking those teeth out, but isn't pressuring or scaring him. 

I know it's hard to take a kid who doesn't like doctor doctor shopping, but would he be more willing to go if he got something afterwards? Could you interview some doctors without him to get a feel for if you can have a working relationship with them? As a mom of a child who needs to go to the doctor often I've found having doctors we trust and aren't scared of to be very important.

Heather



anniel_5@...

I have definitely found being confident helps - being there as a confident partner to my child. Liam (now 8) has had many many visits to doctors, dentists, other health professionals and alternative practitioners, as well as several hospital stays. At first I was nervous around health professionals, worried about what they would think about my parenting and his behaviour, and it always made the situation worse. If he was upset or scared I'd find myself being a bit apologetic, which seemed to provide an opportunity for them to suggest ways I could change his behaviour, and I also felt they talked to me like they knew everything and I was just a panicky mum and needed to be told what to do. 

On one of his hospital visits we were lucky enough to be next to a boy and his mother who was very confident and clear that she was not compromising her parenting style or her relationship with her son - she was very polite and firm and advocated clearly and successfully for her son whenever she needed to. Watching her, and talking to her, I gained confidence to do the same myself, and I've found that the more confident I am, the more I make sure Liam is looked after in whatever situation we are in, the more the health professionals discuss things with me, and with Liam, rather than just telling us what to do.

Some doctors introduce themselves to me and Liam when they first meet us, and I find this makes both of us, and especially Liam, more comfortable. So now if the person doesn't introduce him/herself and just starts talking, I will introduce ourselves, and that slows the conversation down a little, and also makes it more personal, less likely that they will just talk medical jargon and tell us what to do. If I am asked about a developmental or behavioural concern (if they are concerned about something or ask if I am), I usually say 'Oh yes, we're keeping an eye on that', or 'We've been talking to someone about that', which reassures them that I'm not in denial, I am aware, I'm looking into solutions and so on (even if I'm not actually worried about it, but it usually moves the conversation on when I firmly say we're aware and dealing with it). Sometimes (when appropriate) I will point out that the problem only occurs when he's under stress, and remind them that his behaviour when he's in hospital, sick, is not necessarily a true picture of his day to day personality. 

There have been times when nurses or doctors have wanted to force him to take his medicine (hold him down and forcibly give it to him), and they have become annoyed when he has reacted badly (yelling, hiding, lashing out). In those cases I ask them to give him 5 minutes to calm down, and for me to talk to him about the medicine - they are usually surprised but agree, and most times after a couple of minutes Liam will say he's ready to take his medicine. I find the more I treat Liam with respect, tell him what's going on, why it is happening, ask him for his help or cooperation, 2 things happen - he is calm and cooperates more easily, and the doctors/nurses/dentists etc start to treat him the same way and the whole situation goes more smoothly.

I think a lot of times, health professionals are working with so many patients and it just becomes part of their job, getting everything done, and they can forget that they are dealing with real people who have feelings and different needs and different sensitivities. Once they are reminded that this is a person, not just a patient, not just a child who needs to do what they are told, they seem to treat us with more respect and listen to us and talk more clearly.

When possible I try not to make decisions on the spot, I like to have time to think about them and talk them over with Liam and Tony (my husband) if I can. Unless it is a life threatening situation, there is usually time to consider, often time to get a second opinion, and when I can I do keep trying different doctors/dentists/practitioners until I find one that Liam is comfortable with. We have been to many different people concerning Liam's asthma, and most we've only seen once because he didn't want to go back. A few we've been more frequently and we do now have a paediatrician we see regularly. We also found a dentist that he loves and is happy to go to regularly. In his case we did choose the General Aneasthetic option to have his teeth removed - he was older though, nearly 7, and preferred to be asleep while they did the work rather than do it in the dentist's chair. It took us a few years to get to that point though - we tried a few different dentists and after each one he was so upset that it was months before he was willing to try again. But by listening to him and trying again each time he was ready, we did find someone that he was comfortable with and were able to get the necessary work done. When things have been urgent I've made sure he's had the care or medication or procedures that were needed, but as far as I can I wait until he's ready and that protects his emotional health which is also very important (and not something that is usually taken into account by the medical profession).

For me the big difference in how I dealt with his medical carers was remembering that I am Liam's partner and advocate, and what the carer thinks of me, personally, is irrelevant. So if I walk out and they are thinking that I'm too permissive or Liam is too sensitive or whatever, that doesn't matter. As long as I don't give them cause to think that I am neglectful (which is why I say I'm looking into things, rather than saying I don't think it's a problem) then it doesn't matter what they think of me or my parenting style - but by standing up for Liam's needs then I am protecting my relationship with him and showing him that we can be involved in making our own health care decisions.

Annie