Frustrated! Need to vent!

[Dara]

I dont even know where to start! Sammy has spiraled out of control...again. Now we can barely even look at him without a rage begining. He will be starting the day treatment center at therapy instead of his school 3 days a week because he finally started being defiant at school. The problem with school is that his teachers tell us that he is having time outs there and then they tell the therapists that he is fine. And as an added bonus, the therapists are saying it is something I am doing that is causing this. Thats really what i need. Something to make me feel even worse about things and to have this nagging voice in my head saying that I am doing something to cause this. After Sammys 30 minute rage yesterday, I called the therapist and asked him exactly what it is that I am doing that causes this behavior. Guess what.. There was no answer. He doesnt know what i am doing.
The thing is, I know in my heart of hearts that there is something really going on in that head of his. A lot of times he just doesnt understand what is being said to him. He a lot of times just chooses to speak jibberish instead of using his words. He doesnt not accept correction or help in any way. If you do, he goes into a rage. He is violent, throws things deliberatly to hurt or break something, he bangs his head on the ground. He gave himself a black eye last week from doing that. We have shown him over a million times...kid you not.. how to hold a cup with a lid and straw. If you tilt it it dumps. Everytime, is like the time before didnt exist. He tilts it and it dumps all over him and he gets upset...meal over! That is just an example of how you can show him or teach him something over and over and he just doesnt get it. People say Brian and I are crazy but they dont look at the details with him. He has 18 other kids in his class. They arent noticing tiny details of what Sammy is doing. I need our Mayo Clinic appointment to get here. I need to know what is happening with our little boy. I need to have a plan of action of how to deal with him because our life is unlivable!

 

[Big Bad Kitty]

Dara,

I wish I had a magic answer for you.

I am so sorry. So so sorry. Praying for answers soon.

((((((((((((hugs)))))))))))

 

[1905]

Don't listen to that therapist. Nothing you are doing is causing this. I work with autistic 5 and 6 year olds. One of our students is exaclty like your child. His rages, over nothing really, and they last 45 minutes. We know it's not his fault. It's his brain, it's just the way it works. The frustration level is off the charts. We need to use Non-Violent Crisis Intervention multiple times a day. It's not his fault, keep that in mind. I'm sorry you are dealing with this. The smartest therapist would say he doesn't know, rather than make up some nonsense. We have our kids work for things all day long. Give him a choice board with pictures of all the things he likes to play with. Then have him choose one. Give him tokens,(we use bingo chips), when he gets 4-or any amount you decide-he cashes them in for the chosen activity or thing he "earned". Try that. When is the Mayo clinic appointment?-Alyssa

 

[SRL]

Sorry it's such a frustrating time for you--

Have you looked into other methods of training such as using DVDs, social stories, picture systems, etc for basic life skills? If he's not retaining things like how to drink from a cup then the school district should be working on these in a therapeutic setting and should be utilizing strategies and technologies aimed at helping children who are more impaired in life skills. I don't know what's out there for children who are lower functioning in this regard but if showing him a hundred times hasn't accomplished the goal, then other methods need to be implemented by his therapists and teachers.

 

[Dara]

SRL, the strange thing is, he is high functioning child. It is very strange and hard to explain. He listens at his SD program although on tues. he was acting out a little. That is a big concern that he has crossed over. He used to behave at school and therapy and now he crossed over so...

 

[SRL]

A lot of times he just doesnt understand what is being said to him. He a lot of times just chooses to speak jibberish instead of using his words. He doesnt not accept correction or help in any way. If you do, he goes into a rage. He is violent, throws things deliberately to hurt or break something, he bangs his head on the ground.

I think that given what you are describing here even if he is high functioning in some environments and situations, it would be worth exploring options for lower functioning children for those environments or situations where he is low or nonfunctioning (which is what you have described above).

When you've hit a brick road, I'm a firm believer in checking out all the camps to see what they have to offer because there just might be something there to make a the breakthough. If neurological issues preventing a child from understanding what is being said to him, then widening the mode of presentation and communication is critical. Maybe this would be a good time to broaden your thinking and start looking at effective methods for training and communicating with populations of children with various disorders that cause communications and training challenges--deaf, speech apraxia, mentally handicapped, Down's, moderately Autistic, etc. Just because your child doesn't have the label doesn't mean you can't look there for tools and methodologies.

You also might want to research the effects of medications on language processing. Some, such as SSRI's, can be effective with some children.

 

[Dara]

Sammy is in a speech program. It has helped tremendously! The problem is, Sammy's behaviors get in the way of progress. He speaks in jibberish a lot just to annoy us. I have recorded this week Sammy speaking in jibberish so the teachers and therapists can see it and go from there. We are at a dead end here but we are hoping our visit to the Mayo Clinic provides us with the knowledge and tools to move forward.
It is just frustrating in the meantime going through this and waiting for the next step!

 

[Mrs Smith]

Sounds like a motor planning issue more than a motivation issue. This was my son - smart, perfectionistic and devastated because he couldn't get his body to do what his brain wanted and knowing everybody else could do it easily.

Any motor planning task (eating, bathing, dressing, riding a bike) required alot of effort. I would either give him another option like a cup with a lid and straw or I would hand-over-hand show him how to do what he wanted while "talking him through it" using detailed descriptive language. Over time, I let him do the skill himself as I explained the steps. Sometimes I would write down the steps so he could do it by himself.

It's a long slow process but once he began to see me as a helper, he would come to me before he was so frustrated that he had a meltdown. Good luck, I know how hard it is to see your child so devastated.

 

[Steely]

I just wanted to send you big hugs.........it was odd to see your message this morning, because for some reason I had Sammy on my mind last night, and was hoping things were better since you had not posted in awhile. Sigh........I am SO sorry they are not.

I have no words of wisdom, just sending cyber support.

by the way, when is the appointment at the mayo clinic? Are they even broaching the possibility of a medication at this young age?

 

[Dara]

I had typed up a great response and then my internet went down...
I am going to try again:
First of all thank you for all of your well wishes and support.
Sammy's appointment at the Mayo Clinic wont be until late april or early may. In other words, we have a very long wait. I am not opposed to medicating Sammy at this point as long as they know what they are medicating for.
Earlier today, husband and I went out with Sammy. We went to lunch and then we were going to the toy store. We told him Sammy we are going to the car to go to the toy store. For Sammy, if things are not Instantanious, a rage comes. He went insane. I dont know if he just doesnt understand or what but if it doesnt happen the very second he goes bezerk! You cannot correct him, show him anything, tell him anything or he goes into rage mode. We are literally at the point where if we even look at him, he goes into a violent tantrum. At this point, we are frustrated, sad, depressed, angry and anything else you can think of. Basically we feel helpless and alone and have no idea where to turn to for help anymore because nobody takes it seriously or believes that Sammy has the capability of acting this way

 

[BusynMember]

I'm looking forward to hearing what Mayo thinks. My son's neuropsychologist was from Mayo. I still think Sammy sounds like a classic autism spectrum children, and am anxious to see if the interventions for Autism Spectrum Disorders (ASD) are recommended. He definitely needs Autism Spectrum Disorders (ASD) interventions, in my opinion, even if he can't get the label. Mine didn't until eleven. Now it is clear he has it. Hugs to you and hang in there. It gets better.

 

[Big Bad Kitty]

Could he be hospitalized? For a little while even?

I can't remember if you tried that route, if you are able to, if the docs are willing to, or if it is a conflict of interest because you are going to Mayo next year.

Can you possibly wait that long?

I mean, from an outsider's standpoint, it just seems like there is something that is being missed. And the poor child is suffering.

I am so sorry for him, for you, and for husband. How exhausted you must be.

(((((((((((((((((((((((((((((((hugs))))))))))))))))))))))))))))))))

 

[Dara]

I agree that something is being missed. Our pediatrician seems to be the only one who is very excited about the mayo and the only one who truly believes that there is something else going on. His therapists think there is too but they are at a complete loss and the fact that Sammy wont act up for them. That is the essential problem is that due to anxiety, Sammy has been up until this point, a perfect angel at school and therapy. Only this past may was when he showed his true colors to his therapist after 2 years! The thing that nobody can figure out is how a 3 year old, and this has gone on for as long as Sammy has been around, can control his behaviors like he does. But looking back, I was like that. Not to the point of Sammy but I have some social anxiety and when I was younger, I was perfect to everyone else but I would come home and explode from the stress of trying to do the right thing all of the time. I dont know anymore. I do know that he is not going to be hospitalized at this point... I hope we can hold on for 5 more months! I honestly dont know what we are going to do! It has to get better.

 

[Steely]

Hey Dara,

I just thought of one more thing that may help you and husband with Sammy. Have you guys read Temple Grandin's work? Especially her book, Thinking in Pictures blew my mind. My son is borderline AS, so not even really on the Autistic spectrum - but it helped me immensely to see the world through the eyes of a child with Autism.

Here is her link to her website:
http://www.templegrandin.com/
Looks like she has a new book out, that I have not read - but Thinking in Pictures is amazing.

 

[Dara]

I will definitely check out that book! It looks very insightful!
I am calling the neurologist on Monday and hopefully he will be a little more proactive in finding ways to figure out what is going on with Sammy. His behavior is worse with every day. I dont see it possible to wait 5 months before we do anything! husband and I are just so tired! It is so hard to look at your child and see all of this negative stuff and have no idea how to help him. Sorry if my post is a little wacky. I just took a muscle relaxer for my neck. I get my MRI results next friday and hopefully I can find some relief there. And we all know that stress from this situation pays absolutely no part in my neck pain...Kidding of course!

 

[Steely]

Oh! I hope you can get into Mayo sooner! I will send some positive thoughts and vibes your way!