Please help me

Fallingapart

New Member
Sorry this is long. My DS was trouble the day he was born. If he was awake, he was screaming. He had GI issues, milk protein allergy, severe reflux, a couple of surgeries (pyloric stenosis), and lots of medication. Even after all the above problems were dealt with he never stopped screaming. At three months when the "colic" was supposed to end, he kept screaming. When he turned one, the screaming turned into other difficult behaviors. He would act like a child would in the "terrible twos"....except he was only 15 months. He would melt down constantly, bang his head (out of anger, not to self soothe), smash his face into the floor (even outside in the driveway), hit himself, and hit himself with objects. He was in early intervention for a speech delay but it was really to help me deal with him. He had a developmental specialist, a speech pathologist, and a social worker visit every week and all we would do is talk about his behavior. Communication wasn't the issue though, his signing vocabulary was extensive. When you would say "no" to him he would go nuts. I couldn't go anywhere with him (food shopping, etc) at all. Just getting him into a car seat was a wrestling match. Then the most amazing thing happened. As soon as he turned 2, it all stopped. It was like the clouds parted and my miserable baby became my little wingman. We did everything together. He no longer qualified for early intervention since he talked nonstop :) Things were wonderful. He seemed "normal". If he was naughty, he got a time out, and that was it. No big deal. When he turned 3 things started to go downhill again. I was hoping it was a phase but it's just getting worse and worse. He'll be four in October. We see a child psychologist, will see a neurologist in a couple weeks, and we are waiting for a neuropsychologist evaluation. He's angry and miserable all the time. He's the poster child for The Explosive Child. When I read that book the other night I was shocked to finally read something that described him. Nothing works for him. He lives in the moment so reward charts and stickers cause more explosions. His rages can last two whole hours without a break. He often passes out from exhaustion. I've never heard of a tantrum lasting that long. Is he the only one? I'm a very strict parent to begin with and I've finally come to realize that my firmness only makes things worse. The problem is, the book assumes that all explosions are due to a parent making a request or demand. He explodes for no apparent reason. He will go into a rage while playing with his toys. He will rage even while playing with us. One minute he's laughing hysterically, the next minute he's going nuts. He yells at me in what I call the "redrum" voice. Remember Stephen King's The Shining? It's scary. He is so volatile he scares his friends and other children when he rages. He's in preschool for a few mornings a week and has never had a rage incident, although he has them in every other setting. It used to be once or twice a week, now it's a couple times a day. I could go on forever so I'll just stop now. How do you endure? How do you keep your head up when your child in always miserable for no apparent reason? How can I fix the problem if I can't figure out what the problem is?
 
T

TeDo

Guest
When you say you are waiting for a neuropsychologist, what does that mean? Are you waiting to get is scheduled? Is it scheduled but is in the distant future? Are you waiting for a referral? Most children are not miserable for no reason. Their behavior is a way to communicate something they either don't know how to put into words or aren't capable of putting them into words. Since he had so many medical issues at birth and delays as a result, I would have every exhaustive test I can find to rule out any physical explaination while I also pursue the mental health stuff. Do what you can to move the neuropsychologist process along faster but don't rule out the possibility that their might be a physical cause.

Welcome to our "family". You have come to a wonderful place. It has been my sanity. Many HUGS to you both.
 

Fallingapart

New Member
I have submitted the paperwork and am waiting for the hospital to call me with an appointment. I didn't mean to imply that he's miserable for no reason, it's just that the reason isn't obvious to anyone. There doesn't seem to be a pattern or anything to go on. If there's a physical cause, I'm hoping the neurologist will find it. We're seeing his psychologist in the morning. Thank you for your advice and for welcoming me :)
 

Malika

Well-Known Member
Welcome. I do hope your evaluation will lead to some answers and some understanding - and a plan of action. It seems unusual that your son suddenly hit his period of calm and reasonableness that then went away again - I imagine that is a relevant factor to mention to the health professionals. Also the exploding for no apparent reason... I have no experience of that personally as my son always explodes for a reason, though an explosion is an explosion is an explosion perhaps... But it makes me wonder if there isn't something very specific neurologically going on with him. As I say, I hope you get more understanding and answers soon.
As for the question of how you endure it all... I think you have to arm yourself with as much knowledge and understanding as you can (difficult for the moment, as you say) and seek the support of those who understand and do not condemn/criticise (eg by coming here to the forum). I have found that the more I understand, the more confident I am in dealing with my son's difficultness and the less despair and hopelessness I feel.
Hugs.
 
Welcome. My son was actually the perfect baby until he was two and then he became a terrible two and stayed that way. It seemed he could rage forever. We tried a lot of alternative stuff (diet, listening therapies, massage/touch stuff, etc) before finally going the medication route. It took several trials but finally found one that worked for him (Lamictal). It really cut down the rages. I wish I had tried medicating him earlier, but I hated the idea of giving a four year old psychotropic drugs. Well, that was the only thing that calmed the firestorm in his brain. Not saying this is the answer for you, just sharing my experience.

I hope that you are able to get an appointment soon and that you have people around who can support you. This is a good place to be -- folks have been there, done that, and don't judge you as a "bad parent" because your child's brain chemistry isn't standard.

I would repeat to myself, "He's doing the best he can. He didn't choose to be this way" to help me get through the days of constant stress. It is depressing to have the only kid in your circle of friends who has been kicked out of pre-school. The folks here totally understand.

Take care of yourself and keep hanging in there. There is hope. Sometimes I would focus on making it through the next ten minutes, and then the next ten minutes after that. Imagining getting through a whole hour was too much sometimes. But now, we have made it through eight years of "difficult child-ness". Sometimes, it's just 10 minutes at a time.

Good luck!
 

Ktllc

New Member
We aere all here to support one another, even if we sometimes face different issues we have all something in common: we understand what it is to deal with a different, very difficult child. You are doing the right thing by seeking all the help you can.
I'd like to note that, myself is quite a strict parent as well but, like you said, it sometimes seems to not work with my difficult child... I have done a lot of observing and listening his therapist advice and came to realise that my expextation (although resonable) are sometimes just too high for him. Let me give you an exemple: if you ask a 4 year if he wants x or z for snack, you would expect for him to give an answer. My difficult child, always says no thank you. Then I serve his brother, clean up and tha's when he "decides" he wants something after all. Use to drive me nuts, thinking he does it on purpose. The therapist suggested he might not be able to understand the question, that he just can't process it unless the food is right in front of him. Eversince I have that new knowledge, I put the snack(s) right in front of him and then ask him. No more tantrum or rages over snacks! I'm just at the beginning of our journey with difficult child, but that little snack exemple gives me hope: if I learn to understand him and his way of thinking, we might just restore some peace in the family. Keep learning and move forward in the process of testing and evaluation (although I know how the wait for an appointment can excrutiating!). Welcome, you have found a wonderful place!
 

BusynMember

Well-Known Member
You are doing all you can for him. My experience has been that the neuropsychologist will do a good evaluation on what is going on with him and explain what may be triggering him off, even if it seems like nothing. You're doing t he right thing. Just hang in there :)
 

Steely

Active Member
You are not alone. My son was exactly the same way. It is horrible to watch, and exhausting to endure. You are on the right track with the evaluations. Since my son was 4 there have been a lot of new medications to arrive - and I would not be hesitant to work with a professional on possibly introducing one to your son.

Although it seems rather inhumane to have a 4 year old on medications - it is also inhumane that they are suffering so much. His brain chemistry is obviously off, and he needs something to help realign it. Also I would have the docs do a sleep deprived EEG to check for seizures.

Many hugs.
 

nvts

Active Member
Hi Falling! Welcome to the crowd! It's a great group with a lot of experience and strong shoulders to lean on!

I know how things are going and how they seem insurmountable - I've got 4 of 'em driving me to the brink (on occasion that is! lol!).

I ask them to check him for sensory issues as well. Have you ever noticed if he has any meltdowns that are related to some external stimulus that you probably consider to be inconsequential? For example: my oldest would meltdown as soon as I pulled certain shirts out of the drawer. Over and over and over...until I heard about sensory stuff, I had no idea that it was the tags on these two shirts that were driving him up a tree. Certain sounds to this day will send my older daughter up a tree. Unfortunately, the tones that come from a 10 year old learning the clarinet would absolutely unhinge her (I refuse to admit that they'd unhinge anyones nerves like a bag of cats!). We lucked out that he's musically gifted so never practiced at home.

What my point is: there are tons of things that could be going on. Read, question and read some more and come here often to unload. We understand...it's that simple!

Many hugs to you...you're a great mom that's simply trying to help her little boy!

Beth
 

InsaneCdn

Well-Known Member
In the vein of "something going on"...
He's in preschool for a few mornings a week and has never had a rage incident, although he has them in every other setting. It used to be once or twice a week, now it's a couple times a day.

Any chance the increase in rages/tantrums coincided with the start of preschool? As in, he might be holding it all together at preschool, but "burning out" his coping reserves for general life. Some of us have seen this with older kids as well - school doesn't see any problems, but what happens at school causes problems at home.
 

april1974

New Member
Welcome...I'm new also and the support here is really amazing. I hope you get in soon and hopefully get some good advice on how to manage your son ((((hugs))))
 
C

Confused

Guest
Hi Fallingapart,
As I say here, you got great advice here already. As far as his behavior coming back all of a sudden,I am not sure. My son will only go a day even a couple days of being "calm" and blows up again.YES! Tantrums lasting 2 hours! My son would go 3 hours no break extremely violent. He at times as gone off and on during the day with his rages. He has now calmed down dramatically but his verbal language(again when really angry,I agree with the "redrum" voice from the shining as well) as well as still hitting us is still happening. I am glad you read the book,im working on it! And also glad to see your getting help soon. Anything can trigger our kids,even if it is not"normal with most others". Good luck.
 
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