The teeter-totter of guilt and spiral slide of difficult child...

[Shari]

A proverbial playground, huh?

Wee difficult child continues to spiral downward. We have an appointment with all docs this week, tho I am not sure what, if anything, we can do about it. Thus far, the violence hasn't returned any more than words. Its like he gets violent and strange thoughts, but thus far does no more than to relay them to us. Impulse control for anything less than horrific is GONE.

Example, easy child 2 was tickling him and wouldn't stop. difficult child 2 told us he hated easy child 2, he wanted to murder her, chop her up, and pee on her dead body. I told him Thursday we didn't have school while he ate a bowl of ice cream. He held his hands high and yelled 'YEAH! I'm so happy I could throw this (his bowl) thru the fish tank glass!' He played with a friend today. Friend was lying down, difficult child jumped knees-first into friends stomach. He ran thru a crowd shoving between a little boy and his father " little boy was 2 and hit the ground hard, generally difficult child has a strange consideration for little ones and babies. We passed a young man playing a video game version of Deal or No Deal. Wee difficult child, in passing, leaned over and pressed buttons to open cases on this complete stranger's game. Absolutely stuck on obsessions, whatever they may be at the moment; they reverberate until they either come to pass or are replaced with a new obsession. Noises from his mouth are non-stop.

I watched Extreme Home Makeover (or whatever its called) tonight and they built a home for a family who's oldest son was born without eyes and without the ability to straighten his limbs, yet the boy, and that family, were so positive. They truly were an inspiring family. But then, I find myself angry with myself for hating my own situation, for getting down, at times. My situation is nothing like theirs, they have *real* problems, I just have a healthy child with behavior problems, so what am I complaining about.

Then the other side of me says 'cause those behavior problems can be every bit as debilitating as any other disability'. And then I feel guilty for feeling that is our truth. Am I making ANY sense at all? I just go back and forth, I guess part of me still doubts how real our own situation is.

If my child had a physical difference, at least he wouldn't get the judgemental stares that come from randomly poling other peoples' games or knocking down young children…And then I feel more guilt for thinking that.

I'm trying to hang in and weather this storm. I know this will pass and the better days will come again. I just pray this isn't all for naught.

If this makes any sense.

 

[DammitJanet]

Shari...

I am so sorry that little guy is spiraling down so badly.I think it may have something to do with spring being on the horizon though I know that doesnt help a bit. The little guy does have to learn some sort of impulse control somehow. If the medications arent helping with that then either a medication adjustment is needed or maybe trying different ones.

I also know exactly how you feel when you watch those shows and have that little inkling of guilt. I used to see kids in wheelchairs and think to myself that if only Cory's problems were of that nature things would be so much easier for us to cope with. People would see a visible problem and not just think...bratty kid. I think its natural to go through that.

 

[SRL]

Shari, when nothing is working sometimes it's worth stepping back and reevaluating the diagnosis. I don't remember what specialists and how thorough his evaluation process was but when I read non-stop noises and obsessions, I immediately glanced to the signature and didn't really see a diagnosis that would explain those. When my difficult child is making non-stop noises, it usually falls in the realm of respiratory or vocal tics. In my nephew it's tics associated with Tourette's.

You may feel comfortable that the diagnosis is a good fit but thought I'd toss it out there since you're not getting anywhere.

 

[Shari]

SRL, good point. I'll bring that up with the developmental peds this week. He's had pretty thorough evaluations - neurologist he's seen since he was 6 months old (tho I don't like that guy), developmental pediatrician we first saw at 2, behavior therapist, psychiatrist (did evaluation, not currently on team), and an in-home therapist. DevPed is the "leader" in this. She suspects a mood disorder, but aren't sure other than "developmental delays", and "severe emotional and behavioral concerns" at this point, and that's not even a diagnosis, just a label. His current team isn't diagnosis-ing until they find something that fits, which I appreciate.
He's 300 times better than he was when we started this process, but he still is no where near functioning at a real-world level right now. And this comes and goes, he'll do well for a period of time, sometimes a long period of time, then he'll hit a downslide that rivals the length of ski slopes in the alps...
One good thing right now, the agression hasn't returned yet, and I expected it by now. Words are there, but actions aren't yet.

 

[Hound dog]

I agree with SRL. And you know, if you don't like the neuro maybe you should consider finding a new one. Or maybe at least get a second opinion with an different one. Sometimes when a doctor has seen a patient for years they become so used to the patient that they stop really looking for things or being so objective.

Sorry to hear the lil guy is spiraling down so bad.

And yeah, everything you said make perfect sense to me. been there done that

You know that well adjusted happy family of the disabled child also had their bad days, and their ordeals too, just like we do. They just aren't going to show that on tv. So don't get sucked in to what appears to be.

((hugs))

 

[Fran]

Shari, I recognize the whole phase of behavior with a kid who has no boundaries. He can't set his own. In my mind, I saw my difficult child at that age as a ball in a pinball game just bouncing with abandon from one side to another flipper to another side and never having any clear goal. A ball of impulsive emotion.
Make no mistake your child and mine are as disabled as that young man. I saw part of the show. The difference being that he had physical disabilities and your son struggles with thinking disabilities. Both bring it's own basket of obstacles and heart ache for a parent. It is/was very hard to accept that my son would be considered disabled but his level of functioning indicates the pro's were right and I made some success by working with him. The statistics don't tell the whole story but they also tell you some truths. I'm not saying that there isn't hope. I believe whole heartedly at not giving up that improvement can happen. I'm saying you have every right or reason to feel so sad and angry at the circumstances that brought a child into the world with the disabilities that your son suffers. Then get up the next morning and start over. Regardless of whether it is a new evaluation, new behavior modification plan, new medication, new school. You get going and parent your very difficult child with his invisible disabilities. He is yours and love forces us to persist.


Take care of yourself. Find a safe place where you are nurtured and allow yourself to wrap yourself in some self pity for 20 min. My bathroom and a late night bath helped me pull myself together after a really bad day or a really frightening realization. He needs you and you still have a job to do.

 

[Star*]

Seen on a bumper of a car parked in a handicapped spot this weekend:

I'm glad my disabilities are more invisible than your stupidity.

It made me think of the times that DF gets out of his van without his walker and has to park in a handicapped spot that day due to pain in his back - AND your description of our difficult child's.

I know this is probably going to be way off mark - but your son at that age sounds a lot like Dude was. He had NO impulse control -if he wanted it, thought it, needed it, he just did it. His mouth would just sometimes to the point where I swear I would have gone to jail for duct taping his little mouth. He was already on his 2nd or 3rd Residential Treatment Center (RTC) by that time - and we were at the end of our rope.

We DID start doing elimination diets at that point and oddly enough found out that anything red (Fruit punch, strawberry anything, popsicles etc) sent him up a wall - it was like he was unwired. I also started giving him breakfasts like cream of wheat with Splenda, and eggs, bacon - not cereal.

We threw out chips - junk food...(oh gosh that killed me) and no more tv dinners - etc. It did help.

I see where he was eating ice-cream and wanted to pummel the fish tank - coincidence? How about checking his sugar intake? then you said he was at the mall - what did he have to eat before that?

To this day - if Dude (an we have no idea why) eats red/high sugar snacks he's a JERK almost immediately. Strawberrys fresh are okay - but processed like Strawberry cake or muffins = JERK.

Just another thought.

Hugs
Star

 

[trinityroyal]

Shari,

Star makes a very good point. My difficult child reacts very badly to certain foods, and his behaviour becomes darn-near uncontrollable. Mania, uncontrollable talking and vocalizing, lots of stimulant behaviour--he literally vibrates, huge levels of defiance, paranoia, and sometimes violent outbursts.

We have had to watch difficult child very carefully to figure out which foods set him off, because there's no clear pattern. So far, we have found: anything with citrus, anything with yellow colour, salt, most things with red colour, most tropical fruits (mango, papaya, etc.). Fresh or processed doesn't seem to make a difference. We have a spreadsheet that we use to track his food sensitivities and reactions, and the list is updated every few months as new things are discovered.

I know it's just one more burden on your list, but an elimination diet is problably a good starting point. If diet is a factor in your wee difficult child's behaviour it will very soon become apparent, and it will help in the long run. Even if that doesn't turn out to be the answer, at least you will have ruled out food as a cause.

Sorry that you're having to go through this.

Trinity

 

[Shari]

Thanks for the confidence votes. Maybe I'll beleive you guys til Ican beleive myself again.

Star and Trinity, we tried elimination diets. We found nothing that really made a difference. Having done that, I actually let him eat more chicken nuggets now than I EVER would have considered with the other kids - just cause we know it didn't have an impact on him.

Anyway, just got back from his therapist. She wants to bring the psychiatrist back in. We have an appointment in April (by which time he'll surely be turned around again, if for no other reason than Murphy's law). She also dealt a big blow today. She's talking about a milder form of attachement disorder.

Funny, her compliments at my parenting didn't feel very good at that point. This doesn't feel much like I've done a "good job!"

Now I'm going to go hate my ex some more, then maybe we'll go swimming.

 

[SRL]

Shari, I'm thinking that a fresh set of eyes might be worth looking for at this point. Is there a pediatric neuropsychologist in your area? At his young age, I'd be very aprehensive about looking at an attachment disorder when there hasn't been a full workup including assessing for Autism, Tourette's, mood disorders, executive function issues, etc. done recently. If in the end you wind up back at attachment disorder, so be it, but I feel every child this age needs a full workup if problems are persisting and the early diagnostic picture was cloudy.

 

[Shari]

We did the neuropsyche a little over a year ago. They felt it ruled out Autism even tho he hand flapped and toe walked down the hallways (only time he's done it in front of the pro's). His functional iq is extremely low compared to what they suspect his actual iq is. He has a particular variance in processing ability, which suggests a discrepency thats seen in less than 6% of the population (don't recall exactly what it is - would have to go pull the report). We really didn't get a lot to go on from it.

Overall there is progress from year to year, but these regressions are SO hard, and in the end, what good is the best day if he goes off the deep end for a month at a time 3 times a year. There's no diagnosis of attachment disorder at this point, just a suggestion to look, and I guess I should point out that she also beleives it is not the underlying cause of his behavior, but possibly a contribution to it. therapist is worried by the rage in statements like murdering his sister and peeing on her dead body. And we know that between 2 months and 6 months, his dad did ignored him 9 hours a day while I was at work, that he did not form a bond with me til he was what, almost 3? and now his attachment to me is over the top and still not an appropriate level for his age.

We are making progress. Thus far its still just words and not actual violence (yet - we're not in the clear yet.)

 

[SRL]

You might want to take a look around the Tourette's Syndrome Plus site and see if anything there is ringing a bell. Clinically speaking, the Tourette's diagnosis is pretty narrow but what people report in real life is that a significant number show some overlap with Autistic traits, especially Asperger's.
http://www.tourettesyndrome.net/

 

[Shari]

Thanks, SRL, I'll look there.
I think his paternal grandma actually suggested tourette's when he was much younger, but we haven't looked at that since.

 

[Jena]

hi shari,

I'm so sorry he's spiraling downward that way. it is difficult very difficult. i would agree with srl a full assessment would be a great idea. have you ever done the neuro psychiatric evaluation thing? i am going next week at the suggestion of everyone here thank goodness.

anyway don't ever feel guilty for being upset at your or difficult child's situation. sure they show the positive side of these remarkable people on that home maker show. i'm quite sure they too have their chaotic and down moments we are all only human afterall. i do know what you mean though i've watched that show it is astounding the parents can be without legs kids have multiple issue cancer, etc. and their smiling............wow i cry everytime and wonder hmmm where do they get that strength from??

guess answer is same place we get ours. your doing a great job you really are youll figure it out in time

jen

 

[Shari]

We've done full assessments with both the neuropsyche and the developmental peds team. They just don't have any real answers and don't want to diagnose until they feel more sure of what's going on.

 

[TerryJ2]

Shari, I agree, that if he had a physical disability, he wouldn't get the judgmental stares. So hard.
Good bumper sticker, Star!

 

['Chelle]

I'm sorry about the spiral of your difficult child, I hope your new appointments get you more help and understanding.

I too watched that episode of Home Makeover. I do feel for the parents of kids with disabilities like his. However there are big differences in his parents situation and ours. Their child, though he can't see the world, is able to understand the world and fit into the world. Accomodations are made for him to fit into the world where his blindness and need for a wheelchair hinder his progress. Our children with disorders do not and probably never will understand the world around them the same as others, they see things differently than most. They can learn to fit in, as one member said their child once told them he was "getting better at pretending to be normal". It's hard to get accomodations for them, even (especially) at school. People look at our children and see a normal, beautiful child who behaves atrociously. Their disability is unseen so for most people isn't there, and as parents we have to fight so much harder to get the help our children need.

 

[susiestar]

While an attachment issue may be present, it does not seem to account for all that you are seeing.

Please find a different child neurologist and have the whole workup again, including sleep-deprived EEG. I think you may see something there. The neuro you didn't like may not have done a thorough job, or may have had an idea of a diagnosis before testing. That is one good way to overlook a lot of things.

It seems it is time to update your Parent Report and start again. I was wondering about seizures as I read your post - they really can cause major behavioral problems.

If you don't already have a Parent Report, it is a document including all work done to date, your hopes and dreams for your child, and so much more. It will need to be done in several chunks, simply because there is so much necessary info to include. You can find it in the general archives, on the very last page at the very bottom.

I am so sorry he is having so much trouble.

Hugs,

Susie

 

[tammyjh]

I saw the show too and it was very moving. I was jealous...not because I want my daughter to be as physically disabled at Patrick Henry but because he has such a wonderful attitude. My theory is that if his attitude was like my difficult child's, even with his physical disabilities...he and his family wouldn't have gotten the house. My difficult child's inability to regulate her moods make her so hard to be around for any length of time. We get sympathy from certain others because they feel bad for us for having to live with difficult child....sad, but true

So sorry your difficult child is having a difficult time. I hope the appointments go well.
(((((hugs)))))

 

[GinAndTonic]

Thinking about people judging kids because their disabilities aren't visible: I met a woman who made a T-shirt for her kid saying "AUTISM BITES AND SO DO I." I love that.