Behavior has spiraled out of control...again

[Dara]

We always seem to come back to this. THe problem is noone has any solution. I know that there are no clear answers when it comes to Sammy. There has to be some way to handle this. We went from great to back to square 1. Nothing works. The chocolate doesnt help the diaper changing anymore. I can barely get him out of the crib. I have bruises up and down my arms and legs. It looks like my husband beats me. Diaper changing is a wrestling match. Eveything is screaming NO or screaming and running into the other room and then flailing and banging his head. We asked him "would you like some cake?" who knew that that was cause to act like a murder was being commited? I am really at the end of my rope with this. Life is absolutly unlivable. We cant go anywhere or do anything. We cant talk to him or even look at him. He is always a million times worse and more aggressive towards me. Noone can seem to figure this out and noone has any suggestions. Someone NEEDS to come up with something. We need help! :sad:

 

[SRL]

If it's that bad I might give potty training a try. Just like with food don't make a big fuss, maybe casually put on some potty training videos and then put out the potty chair and see what he does with it. If he's not a little tiny kid you might just jump to the toilet with an insert. Put a steady stool in front so he can climb up.

Most Pervasive Developmental Disorder (PDD) kids don't train early but there are exceptions, just as there are with NT kids. Some kids who have really miserable diapering situations will just because it's so much easier--I had severe exzema when I was a baby and my mom said I self trained at the first opportunity she gave me.

Dara, if you aren't already getting some help for yourself, it's probably time to do that. Many of our moms need support in the form of counseling and or medications--it's a huge undertaking to raise a special needs child and rewards are few and far between in these early years.

 

[Dara]

The potty training issue isnt happening yet. He will not go anywhere near the potty since my 8 year old neice putihim on and he fell in. She was way to fast. I got there 1 second too late. We are waiting a bit on that one. I know I need to talk to someone. I have a doctors name and number I just havent called yet. These 2 weeks have been very busy with birthday and doctors for Sammy. In the next week or 2 I should be able to go. I am looking forward to his appointment tomorrow with his pediatrician. I am interested to hear his thoughts on everything. I am just running low on ideas and hope at this point!

 

[SRL]

Try borrowing a small portable potty chair and park it somewhere away from the bathroom--as in front of the tv while you put on a video (low key, of course!). I wouldn't count on it but some kids will mimic what they see. If you don't push it there shouldn't be any harm in trying.

 

[busywend]

Some of those things are age appropriate - but MAGNIFIED quite a bit by his GFGness. This age is tough with a easy child - you have your hands full my dear!
Hopefully, he will still outgrow these things as if he were a easy child and new issues will pop up. Just keep hoping they are easier issues!

 

[Alisonlg]

I totally agree with SRL on her last paragraph...it was going to be my first paragraph. What are you doing for YOU? I read your post and my first thought is not about Sammy it's about YOU. While we all have our different situations, we all have a commonality and it's the personal struggles we have with our children. And your personal struggle must weigh particularly heavy on your heart because I can tell by reading your posts that it FEELS very personal. If you're not already seeking help for yourself, please do.

I'm sorry you haven't found anyone that can give you help with Sammy. I know how frustrating that is. I know in my personal situation I can't tell you how many times I've asked for help and professionals have said to me, "you're doing everything we'd tell you do to" and I leave feeling no better than when I got there. I hope you can find some solutions. Is there any chance you can get some intensive interventions in place?

Is Sammy in a private preschool or is he started in the school system yet? My son is 3 and because of his delays he's already in the school system with an IEP.

 

[Dara]

What are Intensive interventions? Sammy is in a private preschool but goes on to the 8th grade. He does very well there. It is a very warm a nurturing enviornment which Sammy has adjusted to. We are getting him tested through the school district but they wont be back until july 30th is when they will finish testing there.
You are absolutly right. It does feel very personal. It is very hard when Sammy is great for everyone else, dad included and goes crazy with me. I want to have fun with him too! At this point, when his behavior is so bad like it is now, he is horrible for daddy too. Aside from having no support other than my husband, it has been a very rough 5 years. We literally got married, my father then became very ill with brain cancer. He faught with ever fiber of his being but lost that battle, a year and a half later, my mom became ill with lukemia and told me, and my sister that she had nothing to live for so she didnt fight and died 2 months later. A month after that, we found out Sammy had delays and started our fight to help him. Needless to say, we have had very tragic events one right after the other. We dont have any support form our families. My DHs family lives right here 10 minutes away and they think nothing is wrong with Sammy. They also told us it is the turkey we feed him so take it where it comes. DHS brother cant take care of his own child so i dont expect anything from them. My sister is so irresponsable and lost in her won world and cant understand why my life is consumed by my child and my uncle and I dont speak anymore. SInce I stopped working I dont know many people in my area so I dont have a lot of friends either. Not to mention I have social anxiety. I am a nervous wreck in a big group of people. TOday, I start with the personal trainer to help get back in shape and manage the pain from arthritis and herniated disk in my neck. I hope that that will be the start to help me feel more energized and better about me. Then I plan on talking to a therapist. That is all I have for now. Really more than anything, My husband and I are so frusterated because noone knows what to do with Sammy. IF the proffesionals cant figure it out how are we supposed to?

 

['Chelle]

Have you tried switching to Pullups? It might be a bit more expensive probably than diapers but they're easier to get off, you just rip the sides, and they go on like underwear so maybe he wouldn't fight that so much.

I hope you can find some help you need.

 

[totoro]

Do you have anyone coming into your home? To watch help observe??? I asked our therapist to start coming to our house. Maybe they could watch help add to the problem, JK... Seriously though maybe they could add something that you didn't think of, or something you didn't realize was happening.

Just a thought...
Hang in there something has got to give...

 

[SRL]

Dara, it's not that there's no one out there that can't give you good advice as to what may help Sammy. Unfortunately with very young kids what they need most is the right therapy, the right setting, a loving and supportive home environment, and TIME and that last one is especially hard on families. Many parents start to see improvement when speech/language skills start to take off and/or around age 5.

The ABA you've had him in would be considered intensive. With young Pervasive Developmental Disorder (PDD) kids, speech therapy is one of the most critical therapies and nothing personally that I'd wait months for--maybe something like a summer speech camp could fill the gap until the school district therapy kicks in.

 

[Steely]

Just a crazy thought.......but I was wondering if maybe you could try a day of doing absolutely nothing structured with Sammy. In other words having a day void of all triggers - like no baths, or "dinners", or diapers. Now before you screech :smile: you are crazy!!! Hear me out!

Snacks could be out on a table all day for him to munch on at will - and diapers could be off all day with the response to him that since he hates them so much you think today he needs to take a break. I know that sounds gross and messy and unparentlike - but I am just wondering if this would give him back some power. It sounds like he is wanting control of his world, and lashing out at the few things he feels like he does not have control over by refusing to do them. By giving him the responsiblity to eat, or wear diapers, or go to the potty, or bathe - even for one day - might make him think and choose for himself, instead of fighting you - and cause him to feel empowered by his choices - thus breaking the spell of opposition.

Just a wacky thought - but since nothing else has worked I thought I would throw that out there.

On a personal note - I am so so sorry you are going this....and please get the therapy and help you need. I have been in counseling for the last 5 years, and it has literally saved my sanity. And I am so sorry about your parents - my dad was just diagnosed with brain cancer too.......a glioma bastoma.......not a good prognosis. It is the most horrible, harrowing experience, that is unimaginable until you have been there. My thoughts are with you.

 

[TerryJ2]

Oh, Dara, you DO need time for yourself. You've been through a lot.

I like the idea of Pullups.

 

[spiritworm]

I'm a bit hesitant to offer advice since I'm so new here--but here it is...

We had significant diffculties with my son's diaper changes--at its peak, he raged for 3-4 hours after we removed a dirty diaper. We couldn't get a new diaper on until he fell asleep for his nap (and even then, he was fighting us in his sleep until he was out cold--we wrapped him in a big towel in the meantime).

Our supported child development specialist suggested a tool she uses for kids who have difficulties with transitions and thought it might help with the diaper change battles at home and at daycare. The tool consists of the numbers 1, 2 and 3 (about 2 inches in height, printed on paper then laminated) which are attached via velcro to a piece of orange cardboard. I rolled my eyes when she 1st told me about it--good thing it was over the phone so she didn't see me :wink:

Once I had it in hand, I figured I'd give it a try. We asked our son if he'd like to play the 'numbers game' with us...we explained that with each count he could pull the number off (or we could do it for him), and that when we got to '3' it means that he lies down for a diaper change. I was amazed to find that it worked pretty well--(that is, until we lost the '3'). I couldn't believe how easily he took to it. I thought the idea was plain crazy and would surely never work with him--but he seemed like the sound and feel of pulling the number off + maybe he felt like he was more in control (?). Depending on how sensitive your son is to sound (velcro's kinda crunchy sounding, which might bug a kid with sensitivities in that area), maybe try fridge magnet numbers on a magnetized board? Nowadays, my son is generally a lot better with his diaper changes (unless he's in one of his bad spells, then everything's pretty much difficult).

I had never thought that this might be a transition issue--that he has his own agenda which he's happily pursuing and doesn't particularly want to follow my diaper change agenda. I think this tool helped him change his mindset...at least long enough for me to slip a diaper on him.

I hope this helps and hang in there!

 

[Dara]

Thank you so much! I will give it a try. Unfortunatly like you said, when he is having a bad spell nothing works. That is where we are right now. Everything is Screaming NO even things that are not questions. For instance tonight he said henson is on the bed my husband said yes and apparantly that was not the right thing to say. Set him off for an hour of screaming and violence. I really wish we had a mindreading device.. How much easier would life be!!
I did by the way start the Personal training. I felt really good about it. I also called the doctors office for me at 1:00 pm they were gone for the day... I will try again tomorrow!

 

[spiritworm]

Oops, yes you're right. If he's in a bad spell that one won't work. How easily I forget (my one's been liveable the last couple of weeks)!! When my son's in a bad spell, he reacts violently to seemingly irrational things as well. During those times, talking with him seems to just set him off.

 

[Dara]

Sometimes, we can laugh at it but for the most part it is pretty frusterating! I hope someone comes up with something helpful allthough not likely yet! We go to the pediatrician. tomorrow for his 3 year checkup. He is pretty intune to how Sammy operates so maybe he has some ideas....

 

[SRL]

The mention of the numbers made me think, have you been using any form of the PECS system with him Dara? A lot of parents and schools find it really helps the child through the rough parts of the day.

http://www.pecs.com/

Also, are you familiar with social stories? Age 3 is a good time to start those.

 

[Dara]

Went to the pediatrician this morning. My child woke up tantruming and didnt stop until 10:30am. He wouldnt get on the scale or be measured. Kicked me in the rib cage. Needless to say, the dr is concerned about his behvior as well. He has lost 2 pounds. He wants me to givie Sammy more milk and cheese and I said all I can do is offer it to him. What do I do if he wont eat it...He didnt know. He wants to talk to Sammys therapist. husband and I feel so helpless and hopeless. We have no idea what to do anymore. This is one of the worst episodes we have ever had! I feel like a punching bag. Even when Sammy gets what he wants he rages over it. Its a no win situation and there apparantly are no solutions because we keep ending up right back in this Occupational Therapist (OT) of control behavior! If anyone knows of any good doctors that might be able to assist us let me know. I will go anywhere for help at this point!

 

[Sheila]

He wants to talk to Sammys therapist.

Good. Nothing like one pro talking with-the other. In that he's seen Sammy's behavior up close and personal, he'll be able to give good detail.

I'm with-SRL. I'd try as best as possible to get language therapy underway.

So sorry things are in such a turmoil right now.

 

[Steely]

What have you tried for Sammy in terms of testing, doctors, etc? Has he had a MRI, EEG, or PET scan? Have a team of psychiatrists observed him and evaluated him? Does he have a Neurologist because of the seizures when he was little?
I am in Texas as well, and I have looked into a far amount as far as resources within the Texas area, so I will try and suggest some people if you can let me know what avenues you have already tried.

Hang in there - somehow this will get better. Somehow, someway, it always does!!!!!