I shared earlier that we endured a massive tantrum this evening. Gavin has been beyond challenging today and it all came to a head when he chose not to do his homework when he was told.
After everything that transpired today at school and the revelation that he’s been lying to us about serious medical symptoms.
We’ve reached a point that he apparently figured out how to manipulate us by pushing buttons that absolutely ensure we have to respond. We can’t take a chance that something is actually wrong because this can very easily be the difference between life and death.
The obvious problem is that this puts us in a corner and gives him a tremendous amount of control.
We didn’t know everything until after we had brought him home from school today. When we got the whole story neither of us we happy.
He was told to work on the homework that he had yet to turn in. Instead of doing that, Gavin decided to play with Legos.
When I discovered that he hadn’t done his homework, I told him that we were going to take away his choice of what he’s going to have for dinner. That’s it. That’s what set this off.
A few things to keep in mind when watching this video:
1) This is NOT a meltdown. This is a tantrum because he’s not getting what he wants.
2) Everything he saying and doing is meant to manipulate me into backing down from holding him accountable for his actions.
3) I’m not cold and emotionless. It’s important that I not react to most of what he’s saying or doing.
4) Those of you out there that think he just needs a hug are not experienced in Reactive Attachment Disorder. Hugs don’t fix this.
5) Gavin is a very unique child and cannot and should not be compared to most other people. There are so many pieces involved in this. This is less Autism and a whole lot more of Reactive Attachment Disorder.
6) While I’m not a fan of using food to adjust behavior, it’s the only real currency he has and we aren’t denying him anything accept his ability to choose what he wants for dinner. This has been approved by all his specialists.
7) THIS IS NOT FAMILY OR WORK FRIENDLY. THIS IS VERY LOUD AND MAY BE DISTURBING TO SOME VIEWERS.
8) I share this because I want people to understand what families like mine go through. It also provides a great deal of insight into what we are personally going through and how it’s handled.
9) You are going to have to accept that what I’m saying about this video is the truth. We have an army of doctors and specialists and we have learned the best way to deal with Gavin over long, very challenging period of time.
10) Lastly, I don’t claim to be perfect. I make mistakes but I do my very best to manage this situation in a way that is as calming as possible without playing into the drama (and it is drama). Please, if you don’t have anything nice to say, don’t bother sharing it.
Tantrum with Self-injurious Behavior:
http://youtu.be/Ktz1fCq8Um4
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Boy that was really difficult to watch as Gavin was trying to hurt himself. I noticed that he stopped or slowed down if he injured himself. Thank goodness. I understand why you have to watch and not intervene. I am just curious about all the talking you did. I wonder if Gavin was playing off of your words and if he would have stopped sooner if you only said for him to “stop and we will talk when you are finished”. I do not have an autistic child and I work with autistic children, but they do not demonstrate Gavin’s behavior. I apologize if I am over stepping any boundaries. I do not have enough experience with this type of severity so I am curious what you or your professionals say about continual talk. Gavin also seems to be at the teenager age and that age is also an age where a lot of talk or discussion backfires. This I do have experience with since my boys are teenagers. Anyway, I would love to know if you feel if “less is more (speaking wise) during a tantrum or if ignoring and stating the obvious “when you are done, we will talk” strategy is more beneficial. Good luck to your family. I can only imagine how difficult it is to raise Gavin and his siblings. Bless you. I hope all turns out well for all of you. HeidiG
Lost and Tired rjones22 Thanks! i will let you know about the ivig. if it is not one thing it is another, just didnt want you to think that you are alone out there where it seems you cant catch a break sometimes. Great news was able to go to the pharmacy and had no problem with getting the medicine. So I am on a roll, i think. I go to the grocery store and didnt have enough on my ebt card even though i was suposed to get snap refilled on my card on the 19th. I know that I was approved for a year and at six months i went online and not necessarliy reapplied but had to fill out the six month thing and didnt think anything more about it till i got to the store today and i only have $39 on the card. great news is that i only had $50 total in the basket and it is sad that $12 means that much to the budget. so now i get to call snap and deal with that. Fortunately, i have a really nice caseworker that I can email today and he will get it tomorrow and it will be what it is. I am so glad with technology that i can email him today and at least feel i have done what i could. An update on my sons ssi, we will know in 30 days. the guy was real nice and spoke with my son and he did great (because he is a grownup really just really really sick). My oldest son said he had $2000 I could borrow/have because he got a big big raise at work. I hate to borrow from my 26 year old kid, but really he wants to help me and i really have been a great mama and i will have to force him to take the payback. other great news, $650 will pay my car off. no more car payment. it is so hard to juggle. had to take a lower paying job so i would have a job and i just hope it is enough to scrape by till something else comes along. I am taking the day off tuesday for the first IVIG to make sure he doesnt have a reaction (he has had IVIG before soon after cancer treatment and i dont think he had a reaction). great news work isnt mad that i have to take the day off but that is 8 hours of pay that i dont get. it will be worth it though and then work approved for me to be off work a half a day each month (without pay but they wont be mad) so i can get the treatment and drop him at home and then go to work. great news it wont be like the old days when i had to take him to the dr and fight and cry about something, then drop a sick kid (really just a kid) off at home cry all the way to work and then get it together and sell something to somebody. Thanks for your blog, again! I don’t sound ok but i really am. It helps to write it all down here.
rjones22 Lost and Tired one of the things I like about you is how honest you are. I respect that and as I said, it takes a lot to offend me. I put this all out there with the hopes of creating dialogue.
Hang in there. I know it’s not easy. I hope the IVIG helps. 🙂
Lost and Tired rjones22 I wanted to you to know that when I logged on it was to post that I wasnt going to post anymore because i may have stepped over the line and how funny when i read I hate you now just kidding lol. I understand that my points may not apply to Gavin, I just know how much pain I am in over getting him well somehow and I know the pain goes on with a lot of families. My son is in there moaning right now because his mouth ulcers hurt even with the good/bad pain medicine he has. We go finally for his first IVIG on Tuesday. He is so strong and it is hard to look at him because he is so beautiful and in so much pain which I am sure he thinks will never end since it has been 9 years since it started. I am good though. Oh, one more thing I think that Gavin should win the power struggle with homework LOL (for real)
rjones22 I hate you now.. Just kidding. You make some really good points. They don’t necessarily apply to Gavin but they are very good points. The homework thing is really a non issue. This is more about getting him to follow directions, if he can, and completing the task.
I agree that homework is not important in the grand scheme of things but right now it’s more of a power struggle than anything else. Of we discover that his capability has declined, that will be another story.
Typically, we are hands off on the homework and if he does it great, if jot, that’s his problem. We don’t check it other than trying to get a gauge for where he’s at.
As far as the oatmeal thing goes, this has been going in for years. It doesn’t have a negative affect on anything. He still gets a full meal. All we do is remove his choice. We usually give everyone a choice of what they want, it makes things easier. When this happens with Gavin, we simply revoke his ability to choose what he wants. In our house, the default is oatmeal. That’s it. He’s pissed because he’s not getting his way. That’s it.
Please don’t worry about ever offending me. I’ve got pretty thick skin and as long as you’re being constructive, I can take it. 🙂
Rob, don’t know what to say but since I am a nice person, and you requested if we didnt have anything nice to say, dont bother saying it. I will start with you having a great command of your animals. I like that. Second, my dog didn’t move while this video was playing – which is good as he is sensitive which tells me everything was ok in that video. In a past video of Gavin my dog heard and was upset by it I mentioned on the post that it might be good to get Gavin on some “good video” because he really is a doll with a lot to say. i understand how upset you are about the lying about a health issue. I am so greatful for that aspect of my NT sick kid that he knew from an early age that it is so important not to lie especially about health issues because I am the one advocating for his health and thank God i believed him, because he was/is really really sick. I am going to keep saying this till you kick me off your blog lol, as I do know that this is your child, but this whole incident could have been avoided if he didnt have any homework. He has RAD, he has another mental thing (I am sorry I forgot what he has, no disrespect intended, I just forgot the name) he has the autonamic health issue where he (as you have told us and I believe you) could die anytime. You know I hope to God that nothing happens bad with Gavins health, you know what I am talking about, (since I go into my son’s room every morning praying that he is alive) but really if something did happen, do you think the next day you would give a damn about homework?
On another subject, I know you said you were not a fan of using food as a deterrent. I understand that he still ate but didnt get to choose. I understand that food is his currancy. In the video he wanted his ipad back, so that is a currancy as well. I don’t have an answer, or even a better suggestion to help you, but you are also worried about his weight issues, like losing weight etc and how worrisome it is and unfortunately I worry constantly about my kid’s weight because it is so low. Just keep in mind that it may be a slippery slope messing with food, because he can just refuse to eat at all. You need him to eat a lot and I can’t imagine oatmeal being enough.
I did want to put out there to you to try and count up the hours that you and your family have to spend unfortunately negatively regarding Gavin and homework. If you added it up in a week or month, it has to be a lot. I am not perfect by any means and you really have your hands full, but i did raise my two kids, one NT and not sick and one NT and sick. My NT sick one will be ok without the homework i didnt make him do. actually in his iep i put in to have NO busy work. Because guess what, my kid could die the next day and i didnt give a damn about homework (or school work really but i had to be rational) and it helped me and him a lot. Put it in the eip about no homework, it really really doesnt matter. I do continue to hope the best for your family and please let lizzie know I am thinking about her too and for yall not to take this post negativly (I probably would) because I just see from the outside, i dont live there. No homework is really good though.
You are amazing! Hats off to you! I am a Inclusive Education Teacher and I can only scrape the iceberg of behaviour, stress, reasons for , reactions … just everything! in the 6 hours a day I spend with students with ASD.
Sending love from Australia
You did amazing. I know from personal experience the strength it took to stay calm in that situation and how draining it is. I could totally see Gavin trying to manipulate.
Hugs to your family!
That was scarily controlled. There are moments of lucidity and clarity where it is visible to see what that he is thinking of what to do next. You are awesome. I was only able to watch a few minutes of it because of my noise tolerance (and I work with barking dogs but that’s the nature of us Aspies lol), but also because Demeter THE Pig, my therapy and ES animal was greatly disturbed by it. And she has worked with many special kiddos also. My hat is off to you sir. You handled that with aplomb, control, respect, and compassion. 《HUGS》to ALL of you!
I just have this to say: WELL DONE ROB! There are not many people out there who understand what it is you go through. Everyone has their own methods and theories and those may work in their situation or their mind, but the only person who knows who to handle your situation and your son is YOU. Unless people have been in your EXACT shoes (which is impossible because each child is different on hundreds of levels) then the opinions that they have are just that….their opinions. Keep your head up and know that you are doing what is best for your family and your son and that is all that matters. Well done.
for some reason the comments won’t load, – i wish I could see previous ones before I respond, but I think you handled this really well..it is no easy feat to stay calm during an episode like this. Your son has more language than ours, but the rage/frustration looks the same. We are starting to differentiate the difference between when he is in actual pain, or when he is having a behavior due to not wanting to comply…but it’s hard to tell sometimes! If it’s pain, obviously we want to help him, but when it’s behavior only, it’s best is to NOT give it too much attention- very hard when there is self injurious behavior!! My heart goes out to you because I can relate..thank you for bravely sharing this…
I saw the video is a huge tantrum , nothing else . Well done rob !!
Ginger Lowery Anton I was very nice but you accused me of being brainwashed. I’m not brainwashed and the professionals in our life have been amazing.
I’m a man of science. I believe in fact and in dealing with the reality of the situation. Simply because I recognize the situation for what it is, doesn’t mean I’m brainwashed.
When you say things like I’ve been “brainwashed by their evil theories”, it’s a little off putting and quite frankly, difficult to take you seriously.
As a community, we need to band together and recognize that each of our situations are different. I wouldn’t presume to say that you’ve been brainwashed by the paranoid minority that shun all medical and scientific fact because rather than accept that the doctors truly aren’t out to get you or your child, you choose to believe in whatever makes you more comfortable with the situation you are living with.
I wouldn’t say something like that because I’m not in your shoes. I don’t know your story and I don’t know what your son has been through. I’d love to hear your story and perhaps you have good reason to question doctors.
Either way, I’m sorry that you’ve decided to no longer support me. I don’t relish ever losing a reader.
Hugs..ur all in my prayers.
((Hugs)) You did a great job remaining calm, Rob. & I love how you repeatedly told him you weren’t upset or angry with him, and that you all love him and just want him to be safe.
I also admire your calmness – that’s where I have to improve if I want to help my son be all he can be. Thanks for sharing.
Good night, you just lost a fervent supporter because you are lost by committing in post what you detest in post ! Which is it?
Wow! Talk about assumptions ! I was trying to be nice to you. My beef is with professionals. I do not deserve that attack .
Rob, you handled that perfectly. Even though this was a pretty intense tantrum for him recently, it seems like he has more control over it than in years past. His previous tantrums seem much more intense than this one.
You handled the situation very well, great ability to stay calm and firm.
My child is the same hugs to you and your family .
Ginger Lowery Anton You’re welcome to your opinion but no one’s been brainwashed. You have no idea what you’re talking about. I’m happy that whatever you did worked for your son but that certainly doesn’t make you an authority.
We have to be careful that we don’t make these kinds of assumptions because it’s really unfair to the families involved.
Please have a good night and again, I’m happy your son is doing so well. Just remember that mine is different. 🙂
Watching that was very hard for me and he isn’t my child. I can’t imagine how difficult it was for you. Major props to you for the way you handled it!
What this tells me is you should stay away from “professionals”. I am disturbed but not surprised the professionals have brainwashed you with their evil theories. RUN!!!!
I ran and never went back long ago. My angel is 22 now.
::hugs::
dotdash Lost and Tired did I know that about you or did I forget? Either way, I feel like that’s the first time I learned this about you. Thank you for sharing that because I’ve not met too many people with that experience.
Now I understand better where you’re coming from.
You’re absolutely right. There is so much self blame and an all you can eat buffet of guilt.
Very well said dot. Very well said..and again, thanks for sharing that.
Lost and Tired dotdash I’m not saying what you do isn’t best in your situation — how could I know? But I also have a child with attachment issues, so I am not talking about stuff I haven’t been struggling with for a long time.
I am interested in how other parents are handling these situations and I am also appalled by how much self-blame we, as parents, put upon ourselves. It is a recurring theme in your posts (and in my conversations with many other parents), and I am always struck by how hard you are on yourself. Since we can’t alter time or space, the best we can do is to move forward from where we are. You always seem to be doing that and so I hope that one thing you feel is pride.
dotdash I totally respect what you are saying and in theory I agree. With Gavin, empathy is exploited. When you are dealing with attachment issues, many of the rules that apply to the world, don’t apply to people with attachment issues.
To be honest, I cut Gavin excessive slack and I empathize too much. What ends up happening is I get burned.
I feel so much guilt for everything Gavin is going through. My default response to everything it one of empathy. Empathy doesnt work with Gavin. I wish it didn’t though. 🙁
Any child who is struggling cognitively will avoid homework — we all avoid the things that are hard. But this seems like the perfect situation to model empathy. Maybe it would go better if you said “hey, it’s hard to to homework and I know you are having a tough time. What’s going on today?” It takes more patience, but you have a lot of that.
And I would also urge you to model self-empathy. Sometimes you are pretty hard on yourself for perceived failings. But you are in a really tough situation and you should practice self-empathy every day. “I’m only human” is a good one. “I’m a work in progress” is another good starting point.
Don’t we all need empathy from each other and ourselves more than we need punishment?
Just a comment- and I hope it’s taken in the spirit that it’s being put out there – while I think there is some value to posting this type of behavior for the general community to see and learn from, and your calm demeanor is to be commended, I just wonder if continuing to give Gavin the attention you do for 15 minutes during this outburst is beneficial. It seems like by giving him the attention you are indulging him to some extent. It doesn’t appear that he’s in the right mindframe to have a meaningful discussion of his actions, reactions, and the consequences thereof. I understand that you must ensure that he’s safe and that he doesn’t seriously injure himself, but beyond that, how does acknowledging him at all during this kind of outburst teach him that this behavior is unacceptable? It is obviously very brave of you to post a video like this and you undoubtedly open yourself up to some serious criticism by people who will never truly know the whole story. And I recognize that you do reach some sort of resolution at the end, and again, your even-handedness during an obviously stressful situation is a tribute to your patience and the lessons you’ve clearly learned by trained professionals. And the calm demeanor you exhibit (great job, that can’t be easy to keep it together) is presumably intended to show Gavin that his behavior is not acceptable. Just wanted to know what you think to an approach of (calmly) telling Gavin that when he acts like this you can’t discuss the situation, and you’ll be ready to talk about it when he calms down- and then actually removing yourself entirely from the situation until he does calm down? Look, it seems to me that you’re doing your best in what is unquestionably a very trying situation, and I don’t want to come across as critical. Just trying to keep the dialogue going – maybe someone can learn from it. And in order to be a good parent, aren’t we all just trying to keep learning and doing better?
I am so sorry that your family has to go through this. I wish there was something that could help him. Poor boy has a ton of stuff to deal with all of his health issues. This kinda reminds me of the stuff that my oldest son did when we was a toddler. My heart breaks for you, Lizzie, and your family.