Just need to vent

[frustrated04]

I'm new here, and needed to vent. Feel free to offer advice, I have done MANY things with this child. I have no friends to call, no one to talk to, so I thought a place where my son's behaviors are not unheard-of would be a good place to vent.

My son is 7 years old and has been diagnosed with too many things to remember, yet none of them fit him. His behavior cycles a lot. At one point, not too long ago, he was tantruming 10+ times each day.

Earlier this year I thought we had turned a corner, but last week he completely crashed. At the moment, I can't stand him. I love him, but I don't like him one bit.

His line of the week is "I hate you, get the hell away from me". And his usual lines are "NO, I'm not going to f****** do ____ (insert any chore/request)" or "nope, nope, nope, F U".

He hits, pinches, spits, curses, and refuses to do most anything asked. If it's time to go somewhere, he runs upstairs. Time to leave the park, he runs to the other side. He screams when his hair is washed. Screams when it's time to take a bath, screams when it's time to get out. He screams at his sister for talking or coming too close to him. Yells that she never plays with him. He screams that we never have food, refuses most foods, and is thrilled when the "pediasure man" comes. I have to physically restrain him at least once each day to get him to calm down.

He is never happy, except for the short moment after he gets something, which he will not be for a while.

We have a behavior therapist who says he's the most difficult kid she's worked with.

He receives occupational therapy, physical therapy, and speech therapy, each twice weekly. Behavior therapist is with us 3 hours each week. This seems like a lot, but everything was just increased due to his behavior.

No sleep disorders, gets more than adequate sleep each night. He does not go to school, he's homeschooled. His behavior, overall, is better than his school days.

I'm lost with this kid and he's just getting bigger and more out of control. He's tried a few different medications but had immediate allergic reactions to them all.

Every morning, he's the best kid ever. The first hour after he wakes is awesome. He's loving and compliant. Every evening before bed, he apologizes and says he's going to try harder to behave. He likes to cuddle, hates seeing me upset, would defend his sister or me in a death match. He's usually very remorseful and embarrassed about his behavior.

 

[keista]

Welcome. You certainly found the right place to vent.

You mentioned he cycles. Does he have periods of time when he behaves well and is mostly compliant? Have you charted this? Sounds like possible bipolar.

He's good for the first hour? What if he takes a nap? I'm only half joking when I suggest that after that first hour, he may need a nap. And if not an actual nap, then some serious down time to recharge and maybe go for another hour?

 

[Bunny]

Vent away!! I know exactly how you feel, and have felt that exact same way myself on more than one occasion. As a matter of fact, I said to my husband this morning, "And exactly how much longer until I can send this kid to college?" Yeah, I get it.

Who evaluated your son and gave him his long list of diagnosis's? How does he behave in school? Does he have friends? How does he behave with them?

My difficult child does the same thing with his younger brother. Yells and screams at him for the smallest slights, and then can't understand why easy child won't play with him, and gets mad at me because I won't make easy child play with him. It can be exhausting.

 

[DDD]

Welcome. I sure wish I could give you "the answer" but I am sending to you a huge hug and alot of support. The issues seem contradictory and really different from any of my experiences. Sorry I don't have much to offer you but I admire that you have supports in place and are a "Warrior Mom". (That's what we call Mom's who keep trying and trying even when they want to give up.) I hope someone comes along that can offer specific help but meanwhile I'm so glad you found us. This is an awesome site for caring support. DDD

 

[Liahona]

Wanted to add my welcome. This is a very safe place to vent. Is there anything that calms him down?

 

[frustrated04]

Typing from my phone, plEase excuse errors.

There is a family history of bipolar, but i dont think he has it. It has only been mentioned with one psychologist who later said he is not bipolar.

His first unofficial diagnosis was adhd at a very young age. That was made official by a developmental pediatrician when he was 3.

He has been diagnosed with just about everything that can look like autism or adhd.

His sister has autism, and i truly do not see it in him. I also dont see adhd.

He has poor motor planning, expressive language problems, and a few other problems.

When he was in school, he made it through the day, but learned very little, and was a monster at home.

He can play with other kids fairly well. He plays great with younger kids, but is always Trying to annoy older kids.

I could try scheduling a rest time for him early in the morning.

He does not have access to electronics of any kind anymore because everything would get him worked up.

Thank you for the support.

 

[buddy]

Hi offering a shoulder too. I knew what was wrong and still have experienced similar things. It is such an extreme parenting experience. Glad you found us and feel free to vent any time!

 

[frustrated04]

The best ways to calm him are doing something restful. I will drag him to my bed to "read", but him and i both know he's going to fall asleep.

He can play alone camly in the yard for hours, but he has to be alone.

A bath can normally calm him, but getting out, even on his terms, will cause another fit.

If we're out and he loses it, i will physically restrain him until hes calm enough to walk out with me.

 

[Liahona]

When difficult child 2 was just a few years younger I had to have a picture schedule and include calming things right after something I knew would cause a meltdown. Like, every time he came inside from playing outside caused a meltdown so I had tv on his schedule after play outside.

Hope the adding a rest time in helps. Those rages are exhausting (for him and you).

 

[bigbear11]

Hello and Welcome! This is a great place for support, ideas and a very safe place to vent. I "lurked" on the board for a long time before finally starting to post. Sometimes it is so very helpful just to know you are not alone in all this and that the feelings you have are OK. We all need that safe place to vent!

My Trex rages like yours does but not to the same extent... so I can somewhat relate. What medicines have you tried? The right one can make a huge difference... granted the wrong ones can make things worse (as it seems you have experienced). Another thought is... how do you react when he first starts to get frustrated or get wound up? This is something that we are working thru (so certainly not passing judgement) but can tell you that how we react makes a huge difference in the severity, frequency of her rages. Feels weird sometimes... like we are letting her "get away with stuff" but with the tension decreasing for her the behaviors are getting better. So worth thinking about.

I am sure others will mention the "Explosive Child" book by Ross Greene... it is really good and gives a different perspective on dealing with this.

Take care of yourself in all this.

 

[keista]

Well, it definitely sounds like he's got the sensory issues that accompany Autism Spectrum Disorders (ASD). Autism can look completely different even between siblings. A year ago I was 100% certain that DD1 did NOT have it because I was so familiar with the more classic presentation in son. Wow was I WRONG!

Anyway it does get more confusing especially if the answer really is "D. All of the Above".

 

[Angela41]

My son doesn't act out to the extent that you are describing, but he does rage frequently at home. He's a strong 5 1/2 year old boy, so I hear you... It's worrisome and exhausting. We're working hard on coping skills. I think that some kids escalate so quickly that there is virtually no time for them to reign in their behavior or for parents to adjust to prevent a meltdown. Sometimes the rage is a bombardment or just out of the blue. The very good signs are that your son exhibits remorse and strong attachments. Something is preventing him from coping well, but it's not a lack of empathy. The things that you are describing sound like poor emotional self-regulation, impulse control problems, and possible sensory issues. Based on what I've read, it sounds like severe ADHD--perhaps with the hyperactivity and impulse control problems and mild to no distractability. It can look that way- a child can be focused (often hyperfocused) and have severe behavior issues. This is just my unqualified opinion.

 

[InsaneCdn]

His sister has autism, and i truly do not see it in him. I also dont see adhd.

He has poor motor planning, expressive language problems, and a few other problems.

I posted on this theme a little while back but can't find the post. So I'll try to recreate the gist of it.

There is a whole family of inter-related "developmental delay" dxes. At the extreme end is low-functioning Autism Spectrum Disorders (ASD). But... Autism Spectrum Disorders (ASD) and Aspergers are just "lines in the sand". Somebody put together a definition. You can be "almost", and not get the diagnosis... or "just barely" and get the diagnosis - and most people can't tell the difference. The kinds of dxes that come into this "family" are Autism Spectrum Disorders (ASD) and Aspergers, plus the symptoms of these which become stand-alone dxes, things like: ADHD, Developmental Coordination Disorder (DCD), Auditory Processing Disorders (APD), Sensory Integration Disorder (SID)/sensory processing disorder (SPD), etc. Social challenges seem to be the key factor on Autism Spectrum Disorders (ASD) diagnosis or not... so, a child would have everything else, and not get the Autism Spectrum Disorders (ASD) label... or primarily have social problems, and GET the label. Know what I mean??

So... what happens if you look at your child in the light of these other dxes? Has he ever been tested by an Occupational Therapist (OT) for sensory and motor skills issues? How about screened by Speech Language Pathologist (SLP) for hearing and auditory processing problems (including the "newer" ones like auditory figure ground)? If you don't think he's ADHD, could he be ADD - now they call this ADHD-inattentive type... basically, NOT the hyperactivity, but has challenges managing focus? (I have one of each!)

Don't rule out sleep problems. Quantity does not replace quality when it comes to sleep. And most doctors look at quantity. But... sleep problems can cause all sorts of behavioral and "developmental" issues even if these are not there to begin with, and if these issues exist, sleep problems make the issues exponentially worse.

This is the road we've walked... getting help for each and every relevant diagnosis was the only answer that worked. But we had to find all of them, and then get help for ALL of them, before we saw results.

 

[llamafarm]

Good for you for reaching out! It is hard if you don't have support around you. You are doing a great job, don't forget that! Vent away. That is what we are here for. As I read your story I thought of my son. He is 12 now and still gets mad at the drop of a hat. He does not agree to do anything and will also fall asleep when he allows himself to relax enough. My son also liked to hear stories. I found that if I just start reading he eventually migrates to where I am and will listen intently. the bi-polar history is interesting. I agree with keista, autism can look very different in different children. You have to believe in the diagnosis though, and it sounds like you know your son very well. Be sure that you do take care of yourself.
Take care. Thinking of you.

 

[Malika]

Hello and welcome... I'm sorry to hear of this soul-destroyingly difficult experience with your youngster. It sounds as if he is tired!! Don't know whether he is or not, obviously, but for some reason when I read your post, I just kept thinking that something physical/sensory was wrong with him and he is expressing this inappropriately. Is there any therapy that can help him identify what he is actually feeling and expressing that rather than lashing out with "F you", etc.?
There is a theory - French one, backed up by studies - that hyperactivity is in fact an attempt by the child to fight tiredness and sleep, that these are children who actually need to sleep much more than usual. My son is REALLY hyperactive and I can see that he is close to sleep and tired most of the time... yet he goes to sleep every night around 8 and wakes up around 7. He gets enough sleep. He is also irritable and whiney quite often.
I do feel there is something going on with your boy which, if only you could identifyand help it, would unlock the door to his real character, which as you say is affectionate and sweet. Has he been fully evaluated by an Occupational Therapist (OT) skilled in sensory issues?
Hugs. It ain't easy.

 

[frustrated04]

That you all again for the support!

The reason i dont think Autism Spectrum Disorders (ASD) is because he is very socially appropriate as long as he is in a good mood. He will break up fights between kids, put his toys away if thats what is causing a fight. He will have an appropriate conversation with people. He is safe when playing, and is capable of safely crossing streets/parking lots. If a child smaller than him does something, like hit, my son will stand there and make sure the kid doesnt hurt himself. But if a bigger kid messes with him, he goes nuts. I dont know what would happen though because if he is playing with same age or bigger kids, im right there.

Of course its possible, but as time goes on, i see less and less of any spectrum issues. I will look up the criteria again, maybe im wearing blinders.

Sleep was my biggest concern. He has had a few sleep studies, and i feel he was not treated for obvious sleep disorders. I got a clinical guide to peds sleep disorders and studied it like a mad woman. When he had his last study i was all prepared to fight and demand treatment, but when the results came in, there was nothing to treat! All 4 of the sleep issues i had identified were gone.

He is very, very hyper and some days fits ADHD very nice. But he consistently fits sensory over adhd. Hes not fidgety, though. Once he is ready to do his work, he does great.

My reactions have been far from good lately, and my daughter has been overreaction a bit as well. I know i can adjust myself, but i dont know how to get my daughter to chill before reacting.

He has been in occupational therspy, on and off, since he was 2. Our current therapist is awesome and he is making a lot of progress, including tolerating swinging very high on a net swing, and tying shoes, although not functionally yet.

There is a place around here that works with Autism Spectrum Disorders (ASD) kids and i think they have some availability. I could try them and see if we can get new ideas.

The biggest downfall in any plans i make is that he lacks a fitting diagnosis. If i knew for sure what was going on, it might help.

His behavior and reactions are very inconsistent, says his behavior therapist. Most days he blows up at things, some days he can tolerate it.

I dont think bipolar because he has never been up or manic. He has good days, but that just means hes mellow and will go with the flow.

We have shuffled from dr to dr, with all of them saying very different things. From severely autistic to perfectly typical and everything in between.

I was looking at Reactive Attachment Disorder (RAD) for a while, and he does have some of those behaviors and possible causes, like untreated medical problems as a baby, and he went to his fathers every other weekend where i dont know what went on, but he is very attached to me and his sister, and even in the worst moments, gets upset if im upset.

I know im all over the place, sorry for that.

In a group of special needs kids, my son stands out as the most typical kid. In a group of typical kids, he stands out as very disabled.

 

[Liahona]

difficult child 1 also doesn't fit the Autism Spectrum Disorders (ASD) diagnosis exactly. He was diagnosis that because his social skills were around a 2 yr old and he was 10. How are you son's social skills? They sound like even if he isn't with his peers they are doing well as long as he is with little kids.

Fatigue could be a factor with your son. This happens a lot with sensory kids. For example, stores can cause a melt down from difficult child 2, but he can normally tolerate them for a short time. Its just if we spend all day in one that he'll have a problem. difficult child 1 would hold himself together for the 6 hours of school, but on the walk home he would come unglued.

Also, difficult child 1 can have great hand writing as long as he doesn't have to think while he is writing. Copying is great, but as soon as you add any mental component it becomes un-readable. difficult child 3 can walk, unless the weather is just right, then he is on the floor with 'owie legs'. There can be lots of reasons why a diagnosis comes out at some times but not at others. Makes it very hard to get all the right diagnosis. Insane went through this.

I think your son can hold himself together for a bit in the morning but then his issues get to big for him.

 

[InsaneCdn]

In a group of special needs kids, my son stands out as the most typical kid. In a group of typical kids, he stands out as very disabled

I know that feeling!
We were told that this split image - depending on who you compare to - makes it less likely that Autism Spectrum Disorders (ASD) fits, and more likely that there will be a list of separate issues (most of which relate to Autism Spectrum Disorders (ASD), ironically!)
Ours was/is a difficult child with a LIST of dxes... and it takes the WHOLE list to understand the kid. Literally. Partly because dxes can work against each other.

Example:
ADHD - the person's best friend is pen and paper. Write everything down, Stick it in front of your face, and Do it. But... if you have Developmental Coordination Disorder (DCD) and your fine motor skills are so affected that writing is next to impossible... now what? Computer doesn't cut it for self-organization, because when you need it most, you don't have it. Even a smartphone is way too slow.

 

[Malika]

I think really you have to trust your gut instinct and common sense about the Autism Spectrum Disorders (ASD) thing. If you don't think he is, after due reflection and consideration, then in all probability he isn't.
I can really relate about the "floating diagnosis" and how frustrating that is. I too have had some professionals say there is nothing "wrong", others say it looks like ADHD but without the attention deficit (?? is it possible ??), others say they just don't know. Personally I feel by this stage I'd welcome a diagnosis because if nothing else it would help ME be more patient and understanding with him at times... At least you do have Occupational Therapist (OT) for your son, and some identified sensory problems. I feel all this is going on with my boy too but no-one here in my immediate area can identify or deal with such issues. My boy is also up and down (without being manic or in a way that makes one think of bipolar) - he also tries hard to be good but somehow doesn't manage it most of the time... Big impulse control problems.
This is a difficult boat to be in, I know, an unmarked one... if it were marked, one would wonder if the label were accurate. We are the experts, I suppose.

 

[allhaileris]

What's he eating? My daughter only rages like that when she gets something with food dye. I've seen other parents mention their kid would exhibit similar behavior with food allergies.