I was so completely overwhelmed by the doctors appointment this afternoon that I forgot to mention what happened with Elliott’s bloodwork. I gotta be honest, Lizze and I both were exhausted after the appointment. The boys were such a handful and like the Energizer Bunny, they kept going and going.
Anyway, as far as Elliott’s bloodwork went, it didn’t.
While we are making some progress because he’s now able to talk about it without freaking out, he still wasn’t ready to go today. We’ve talked it over with his doctor and while they’d like him to just get it done, the understand and agree with our approach. We’re looking longterm on this and not just a fix for this one time.
I’m hoping that the Prozac will help him relax a bit more and manage his anxiety better. We’re going to be continue working on new coping skills but medication is a necessary part of this.
We’ll see how it goes.
You’re right that you don’t owe anyone anything, but blowing off honest comments and questions because you don’t want to answer them isn’t helpful and can leave a bad taste about the Autistic community as a whole. You often say that you have a platform, so why not help educate the masses (such as myself) as to why certain things won’t work, or why those of us without autistic children should support our tax dollars going to help those of you whose children are on the spectrum. If someone asks a question and you give the [predictable] response of ‘you just don’t get it’ you’re not helping your cause, and by extension you’re not helping those people who you are trying to help the most.
My son Henry has 2 anxiety disorders along with fibromyalgia. So he’s been on Wellbutrin for years. However, he is an adult albeit a young one.
I had good success with fluoxetine (generic of Prozac) but once again, I wasn’t a child. Hopefully Elliott will calm down a little.
Out of interest do help your kids with emotional regulation? Do you use visuals and the ther aids to help with their anxiety and manage their day??
As a disclosure I have two boys on the spectrum (5.5 and 9), we’re newish on the ASD journey but I find enormous success helping the boys to recognise emotions and helping give them the tools to manage those emotions. You talk about tablets and computer games a lot but that’s about it. To be honest I find use of electronics, whilst might give some peace, most times cause worse behaviour.
I’d like to add to what Jimmy said, maybe it isn’t that people are questioning your every move or motive but that they need more explanation. You tend to get defensive right off the bat rather than explaining things or saying, hey we might try that next time, or yeah we tried that and it didn’t work. Not every post that doesn’t mesh with yours is a judgement or criticism
[Sorry, won’t let me reply]
Rob, I appreciate the response. I hear you. I get it. You know, I first came across your blog closer to the beginning of my journey, when, like many others, I was looking for answers, for like-minded people, and for access to any information that could possibly help me and my family. At this point I consider myself a reasonably enlightened individual with respect to providing my family with what it needs, and I consider it a very fortunate position to be in.
I understand the public service aspect of what you’re trying to do here, and I look at it as more of a ground-level support group for those who are just beginning their journey, or for those who feel truly alone, or those who just need a little understanding from someone who might be at least somewhat similarly situated. You do great with that, and I could never do it the way you do.
I guess I’m further down the line than that at this point. I can read your posts and see exactly where certain people aren’t going to get it, or where some further explanation would avoid some of the criticism you endure. Like it or not, you need those people too, for your purposes here. I would imagine to a large extent, you need the foot traffic, however it comes, and the commentary contributes to that.
So sometimes I try to push the dialogue forward by prompting further discussion that I think might be helpful or enlightening as to your thought process or experience. Or sometimes I take another comment and use it as a jumping off point to do that. Sometimes you respond, sometimes you don’t, but either way, it’s all good. After all, it’s your blog, not mine! (my blog would be too wordy lol).
And sometimes I might throw in a suggestion here and there – not that you’re asking for it, but sometimes I just figure what the heck, it might help. If not, no harm, no foul.
With (all that) said, keep doing what you’re doing. You’re working hard to be a good dad, and you’re trying to provide a service at the same time, which also hopefully provides a source of income and a source of therapy for you – talk about killing lots of birds with one stone (of course we’re talking about a proverbial bird and proverbial stones).
Rob, I’m not taking your response as snippy at all, and I hope you don’t with mine. But I’ll admit that your response was a bit predictable. The “my situation is unique” response is undoubtedly true, but not helpful as far as being enlightening or educating. Everyone’s situation is unique, but there are always commonalities. And you haven’t explained what is so unique or complex about this anxiety situation that it requires an approach that you perceive to be “out of the box.”
And I don’t think your approach is “out of the box” anyway. As I stated in my last comment, gradual exposure to the anxiety inducing event is a classic approach to learning to cope. But I’ll ask again: what coping mechanisms are you teaching him? What tools are being developed? I mean, what is going on other than just asking him “are you ready to try this time?” Have you validated his fears? Have you discussed with him how his body feels in that moment (not when the needle goes in, but rather when he starts to feel anxious)? As I mentioned before, deep breathing? Any sort of visualizations or mental exercises? Any discussion with him about other times he feels anxious, and what things he could do then, in that moment, to reduce his stress levels? He’s a smart kid. Have you gone with the intellectual approach and discussed what’s going on when the needle is going in, and what the purpose of it is? I understand that his anxiety in general is the larger issue, and not specifically with needles. But the fact is that needles are the anxiety inducing event that we’re discussing now, and the approach to that can be a global one that teaches him to deal with anxiety in other situations too.
I think sometimes you get frustrated with the comments, which I get, and I’m sorry if I’m contributing to that. But I’m in no way presuming I know more about your situation than you do, and the “Not every kid can just tough it out” response is a lazy one. I think there’s an implication in your response that I was comparing my child’s situation to your child’s and suggesting “Hey! This worked for my kid, it should work for yours, and you’re wrong for not doing it my way!” Rest assured that I didn’t and wouldn’t do that. I mentioned my personal experience as an introduction to my question(s) about coping mechanisms, and you can re-read the last paragraph of my initial comment for that.
And none of this is easy. I think with all kids, there’s an “easy” way to parent, but it’s not necessarily the right way. The right way usually takes a lot more work, with little immediate payoff, except that in the long run it’s better for your kid. This isn’t a situation where there’s necessarily an “easy” way or “hard” way, or a clear right or wrong approach. It’s just about figuring out what you hope to accomplish and figuring out the best way to get there.
Jimmy, you’re totally fine. I do get frustrated by certain commentors in general because I feel like I’m being questioned at every turn. The idea here is to educate but at the same time, this is therapy for me as well. Writing about things like this is what helps me survive the things we’re facing.
The people that never seem to accept my answers or reasons for doing things are probably never going to get it because they aren’t in my shoes. That’s totally okay. I slimy ask that they remember, just because it doesn’t make sense to them, doesn’t mean it isn’t necessary for us.
Again, I’m not upset with anyone but sometimes it’s hard enough to simply make it through the day. I don’t get around to writing about even half of what happens anymore. I’m too tired and it can get overwhelming.
I get that people want to understand or need answers but at the second time, I don’t owe anyone, anything. The people that truly benefit from this blog, find comfort in our struggle. It means they aren’t the only ones going through it. I honestly get messages from social media, email, private messages and in person all the time. They’re thank yous for putting words to what they’re feeling. I even get emails from adults with Autism who say things like they wish their parents had handled them when they were kids, the way Lizze and I do ours.
Those are the people who really benefit from this stuff and I needn’t explain myself to them. Does that make sense?
I think you, more so than most others, get what some of these challenges are like. You live some of this stuff every day. Other people don’t and it can get frustrating having to justify my thoughts and actions to people who’ve likely never faced these challenges.
I truly appreciate all my readers. I always have and always will. That doesn’t however, mean that my readers are always going to understand or have their questions answered.
This blog is secondary to my actual life.
I don’t think I’ve ever claimed that my situation is more difficult than yours or anyone else’s. We all face challenges in our lives and we can all struggle. At the same time, our situation is unique, as are many of the challenges we face each day. I know I tend to say that sometimes but it’s for good reason and it’s the reality of where we are.
Jimmy, seriously, you’re fine and I always appreciate your thoughtful, well intentioned comments. These have been no different.
Like I said, I’m human. Having to explain myself to people all the time is just not going to happen. I do my best to keep up with everything but I’m running on fumes and reserve what I have for when and where I can make the most difference.
As for coping mechanisms, I thought I’d answered that previously. Maybe I didn’t. There are thousands of posts and many more thousands of comments. I have to go get the kids but I’ll try and get back to you on that later today.
Thanks for caring and for sharing your thoughts and experiences. That’s all I’m doing as well.. ☺
Nothing about what We said would be easy. It’s actually ridiculously hard to do what’s we suggested. Anxiety or fear of needles really wouldn’t matter; the impact on the kid would be the same.
I asked for an understanding of your thought process in coming to this latest idea…which would be helpful to anyone reading…instead you went back to the well of ‘I’ve got this’ and ‘I don’t need suggestions’. Just because someone might have another idea doesn’t mean they are thinking less of your idea.
It’s really an off putting way to respond to people who are only offering you help. Pretending like you have all the answers just alienates people.
I believe Jimmy has asked several times about what coping mechanisms you all work on and never seems to get an answer.
You made a post a while back about teaching the boys life lessons at the grocery store which is all well and good. But a more important life lesson would be to teach them how to cope. What kinds of things are you working on consistently to help deal with meltdowns? Meltdowns will always occur, but you can teach kids and adults how to deal with them and manage them, it is possible. Especially since your kids are verbal and otherwise do pretty well.
These life lessons are going be way more important to teach than shopping for groceries, if they can’t manage sensory items, they won’t even be able to make it to the grocery store
I’m interested in the response to Dutch’s question myself. I’ll just add that as a parent of one autistic child and one NT child, it just so happens that my NT child is the one who’s afraid of needles. And not just afraid — while it’s gotten better, she used to be the kid whose screams pierce the eardrums in everyone in the waiting room and leave them wondering what the hell is going on in there. But we’ve always dealt with it in a similar fashion as Dutch alluded to in his comment. And if it had been my autistic child who had that reaction, I would deal with it that same way too.
I’m not saying all anxiety inducing situations should be dealt with this way, but this, in particular, when the event causing the anxiety is of such extremely short duration (and is of medical importance), I’d be in favor of the “pull off the Band-Aid approach”. I guess the question becomes this – although one can argue that it’s progress that he can talk about it without getting freaked out- maybe that’s only because he knew it wasn’t going to happen that day. What happens the next time if he regresses – or freaks out because the next time is “go time”. Or what happens if he stalls too long and you reach the point where it really has to get done? As Dutch says, at that point you’ve removed his power of choice away anyway.
A classic way to deal with anxiety or a phobia is a gradual exposure to it, and I suppose by bringing him to the doctor’s office, talking to him about it, etc. you’re sort of doing that. But again, at some point if this doesn’t get done, he’s going to get the blood drawn anyway, and not by his choice, so all you’ve done is catered to his anxiety and defeated your ultimate purpose.
And of course, no disrespect to the course of action you’ve chosen. You mentioned above your doctor apparently agrees with this approach and I seem to recall you saying that this was concocted with the assistance of your therapist. So whatever works, and I hope it does. I guess Dutch’s question, and mine too, is why take this kind of approach under these particular circumstances, and why do you think it will be successful? In addition, what else is going on when you get to the doctor’s office and his anxiety level is being raised? It seems you’re talking to him about it, which is good, but what else are you doing with him, in the moment, to teach him coping mechanisms to deal with his anxiety? Deep breathing, distracting visualizations, etc.?
Every situation is different and there’s a difference between being afraid of needles and being afraid of needles, having extreme anxiety and pervasive thinking. There’s nothing typical about this situation.
It’s easy to confuse the fact that the subject is a fear of needles but main issue has nothing to do with that. His bloodwork is simply a catalyst and not the problem. The problem is how he handles situations like this. Next time it could be something completely different that triggers this and you can’t always just rip the bandaid off so to speak. I get what you mean and in some situations that appropriate but not here.
We are trying to help him work through the anxiety, so he can willingly decide to go and get this over with. If we drag him into the lab, hold him down and let them draw his blood, which is what we would have to do, it would traumatize him. That would only make him more afraid and less trusting.
If we work with him and help him to develop the tools he needs to work through this on his own, there’s no trauma, nothing is made worse, and hopefully, he can apply what he learned to other areas of his life.
Once again, there’s no urgency to this lab work. It’s exploratory in nature and whether it’s done now or in 3 weeks, it doesn’t matter.
Not every kid can just tough it out. Not every kid with Autism will react the same.
Our situation is unique in many ways. There is plenty of overlap with other families but at the end of the day, we’re dealing with circumstances that are unlike anything most people will ever face. That doesn’t mean it’s easier or worse than anyone else’s situation. It simply means that we can’t always use a typical approach to things.
Is this the best approach? I’ve already said that we don’t know but we’re going to try it anyway because his anxiety is so extreme that it could do more harm than good. He doesn’t let things go either and he would be even more anxious the next time. There will absolutely be a next time.
Please don’t take this as a snippy response because I don’t mean it that way. I think sometimes, people forget that we’re dealing with very complex situations and that if the easy approach would work, we would have already done it.
We are doing things this way for a reason. I know you don’t mean it like this but it’s sorta like telling someone that a child having a meltdown needs a good spanking. It may appear to some that the kid is being a spoiled brat but we know that’s not the case.. Does that make sense?
You have to do what you feel is best for your kids. You know them better than anyone else. Ripping the band-aid off might seem cruel to me but that’s only because taking that approach wouldn’t work for our kids. That doesn’t however, mean it’s not the best approach for yours. ☺
Can you explain how giving him the option of when the blood will be drawn is helping? I get the allowing kids power over some choices, but I don’t see how this could possibly be one of them.
Doctors appointments are scheduled and not always easy to get. Especially with your schedule…and what happens if he chooses not to again? Now you delayed the invetible and removed the power of choice anyway.
Anxiety or not I would think the learning opportunity would have been ‘life sucks sometimes we have to do things we don’t like and it will be over in a second’ Instead of ‘we will wait until you are ready’
I don’t mean any of this as a shot at judgment either, I do weird shit with my kids too, I’m just trying to understand the end goal.