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#61 of 70 Old 06-15-2008, 12:58 AM
 
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Oye, do I ever know this situation! Some SN kiddos can hold it together out in the world for awhile and it makes getting help a nightmare. My SN DS is that way. They (meaning the doctors/OTs/psychs/etc.) couldn't reconcile my descriptions of DS with the cute little kid sitting in my lap. Kinda like taking your car to the mechanic, and when you get there it won't squeak.

I was totally and brutally beaten with the "paranoid mommy" crap. Two doctors (DS's docs, not mine) even wrote scripts for anti-depressants for ME! Most of the people we saw in the early years were totally unwilling to hear what DP and I were saying. I got free books, referrals to discipline seminars, or just sent away with some platitudes. Meanwhile, our lives utterly and completely sucked.

One tune I started playing loud and often was the one I called "My other kids are not like this." I'd slip it in here and there, like "This is so hard; my three older kids were so different!" Or "We used to get compliments on our well behaved children all the time, but Carter is just so different." Just trying to drum into their heads that I knew how to raise children, knew what a problem looked like, and my through-the-roof stress level was a RESULT, not a cause, of Carter's problems.

We just kept trying and trying and trying. It took several years (I know, not what you want to hear), but finally landed in the office of a fabulous developmental pediatrician who actually knows how to listen and who trusts what DP and I say about what happens in our house. He knows that Carter's problems are real and devastating, not just minor annoyances in an otherwise happy childhood. Honestly, we've been working with this dr. for over a year now and I still sometimes hesitate to call him because I forget that he's going to listen and take me seriously after all our terrible experiences!

If you're on state aid, have you asked for a case worker? When we were on public assistance, we were assigned one and she helped us through the process for awhile. Try the insurance angle at any rate. They might be able to point you in some new directions. Also, check online and in the newspaper for parent support groups. No one on earth can help you more with the mess that getting help can sometimes be than parents who have btdt.

Make a pest of yourself with confidence. You didn't cause this. It's not about poor parenting. Your DS, you, and your whole family deserve help. I just say this because my confidence got so beat down, and maybe you're not there. I finally got so desperate at one point that I told DP that I would never again leave an appt. w/o some kind of action, be it a referral, a new appt., a script, something. I swore I'd stay for 3 days if I had to. Never had to, but it was so bad, I think I would have done it!

Anyway, enough from me and it's time for bed. I hope you get some help really soon!

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#62 of 70 Old 06-15-2008, 02:53 AM
 
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It seems like he may be a sensory seeker, maybe while you wade through the evaluation process you could buy bits of sanity with sensory play. Digging in dirt, water play, heavy lifting, pushing and pulling, jumping, ramming into things, etc. These things will meet an increased need for sensory input. If certain kinds of kids (I have one like this) do not get that need met they seek it out, generally in the form of aggression toward their siblings

Also, we avoid the word NO at ALL COSTS. I am not a fan of the *we are the parents and you will listen to us* methods. It works for some families, but it just is not right for us. And as soon as we utter anything resembling a NO it sets our boy off. He can be quite a challenge at times, but we can cut down on the number of problems we have in a given day with always focusing on the positive and ignoring as much of the not-so-positive that we can (not always possible, especially when aggression comes into play, mostly the many little things that occur that do not NEED to turn into a fight). No one wins in a power struggle.

The sensory stuff has really made a difference as well. I have learned to start each day with a LONG walk followed by some sensory based activity. It really calms him down so he just seems hyperactive and mischievous to outsiders instead of aggressive and out of control

Not to say that any of this will necessarily be a magic solution for your ds, just some ideas to maybe try while you fight for help.


 

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#63 of 70 Old 06-15-2008, 01:49 PM - Thread Starter
 
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Quote:
Originally Posted by UptownZoo View Post
It took several years




Yeah, many days I just long for a magic pill I can give him (maybe take one for me too?) that will just make everything.....not quite so surreal.

There are certainly some days where I could use a good anti-depressant...dh too....
this is totally ripping us both up inside.

I'll start in again with the phone calls and emails again tomorrow...
this isn't going to happen on its own, no matter how much I wish for it.


FreeRangeMama--We've had good results with stuff like that too..for a short period of time.
Then he decides he is done with said activity and it becomes another battlezone.

I'm terrified to think of of what the fall will be like with Kindergarten..trying to get ds1 to school, ds3 ready to go with us to drop off ds2, all before 8am

But I was told that refusal of services is a HUGE red flag for them to do an eval....so maybe it'll be a good thing?

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#64 of 70 Old 06-17-2008, 07:25 PM
 
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Oh sweetie, I'm sooooo sorry! I would have sent dh out sooner to start the fire (I didn't notice a mess, or even any off behaviors so no worries, 'k? actually I thought it was kind of cute that he wanted to toast marshmallows for other people).

I was going to second the videotape... I brought a tape of dd2 screaming to the ped after they kept saying "well, babies cry". It's not the same thing, and you may need to tape over the same tape a few times before you get a "good" sample, but that way you can SHOW them what is happening. And there is the Family & Children's services program for families... you may be able to get them to at least talk with you/take a look. I don't think they can do any sort of eval/dx but it might help if they can make contacts for you.

Who is your local care provider? Can you demand a referral to a specialist? We don't have the state insurance but we do have really rotten "state employee" insurance and if we don't go to our "old" care provider (and pay out of pocket) we sort of have to beg/demand/threaten/throw a fit in the waiting room of our "new" care provider in order to get a referral.

Hang in there... and you are always welcome to come over (with or without kiddos) when you need a break.

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#65 of 70 Old 06-17-2008, 10:35 PM - Thread Starter
 
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Midura is our local guy for now....he's a family practicioner--I don't hold out much hope for anything from him.....he didn't know what sensory integration disorders were when I took the kids in to him last summer

I wonder if Jamie would be better? If he'd be willing to at least talk to me, since I know him from birthnet?

I went to B&N today and read Parenting the BiPolar Child
ing

all the stuff in there...

the charming everyone...while threatening to kill us (and believing he can!)
Destroying things without remorse until threats to kill us if we don't fix it don't work
then its another 1 hour tantrum

I just want him to CARE that he is killing the Lauren that used to exist...and he just doesn't

(can you tell it was a rough day today? Can I cry now? too late...already am...)

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#66 of 70 Old 06-17-2008, 10:56 PM
 
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I don't really have anything to add, I am sorry for what you are dealing with.

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#67 of 70 Old 06-18-2008, 10:54 AM
 
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#68 of 70 Old 06-22-2008, 12:44 AM - Thread Starter
 
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*whew*

well I emailed the school psychiatrist...she wrote back and said she wished she had known about this sooner....




THIS is WHY I called for an evaluation in the FIRST place!!

I had foolishly assumed that since I had told various people involved in his evaluation process about this, that it was written in his paperwork...and it isn't mentioned ANYWHERE.

Ugh!


sooooo now she knows and is going to help make sure we get stuff going.

The first people she recommended I call haven't called me back yet, so I have to call them again on Monday.

But!
We did get most of a 20 minutes of a fit recorded today as well as him being Mr. Sunshine himself not a minute after it ended.....sitting with his brothers, being sweet as pie.

I just wish we had run it continuous between the fit and being fine.....

It went on to be an absolutely exhausting day with him. And I know tomorrow will be too, because he had some corn today in his lunch :

But the realllly good thing about it all is that every day I *do* something about it, I'm handling things better

I've got a few more people I can try calling on Monday too, so I'm definitely back to feeling battered and overwhelmed, but not down for the count

I know I have replied to everyone...but please please please know how much I appreciate your thoughts and input and even just letting me know I'm not just a big whiner and crazy to think there is something going on here....

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#69 of 70 Old 06-22-2008, 12:00 PM
 
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Oh yeah, no one writes anything down. I suggest you follow up with any phone convos in writing. This is what we discussed and when, and what we decided to do. Just following up, you know. It's so hard when you have several people dealing with your case. Who knows what, who's doing what? No one knows.

I'm telling you, we had to move 3000 miles before I found a dev. ped. who knew WTF I was talking about.

And even now I'm struggling with communicating Iain's behaviors to his regular ped (who is very good with SN kids). I describe things and they don't know what I'm talking about. We just had meds prescribed for bedtime (after 5 1/2 years of seriously hideous sleep) and they always assume sleep problems are bad parenting. Even people who know about SN kids assume it's bad parenting.

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#70 of 70 Old 06-22-2008, 01:56 PM - Thread Starter
 
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Quote:
Originally Posted by Sleepymama View Post
Oh yeah, no one writes anything down. I suggest you follow up with any phone convos in writing. This is what we discussed and when, and what we decided to do. Just following up, you know. It's so hard when you have several people dealing with your case. Who knows what, who's doing what? No one knows.

I'm telling you, we had to move 3000 miles before I found a dev. ped. who knew WTF I was talking about.

And even now I'm struggling with communicating Iain's behaviors to his regular ped (who is very good with SN kids). I describe things and they don't know what I'm talking about. We just had meds prescribed for bedtime (after 5 1/2 years of seriously hideous sleep) and they always assume sleep problems are bad parenting. Even people who know about SN kids assume it's bad parenting.

Holy cow



This is so frustrating to be finding that the medical system is just as moronically flawed on this side of childbirth...

That doing what we know is best for our kids is STILL a battle

wtf ::::

We either luck into having a pregnancy/childbirth/child that goes so well that no one could screw it up (I know it happens, but who would want to RELY on that???) or we have to fight every inch of the way to make things go the way we know they should.

I *still* have people ask me why DS2 isn't vax'd
I shudder to think what would have happened if I hadn't listened to that whisper in the back of my mind saying !DO NOT VAX THIS CHILD!
That came first...the research in vax's followed--not the other way around.

But you know...I'm just a mom....

mom to three boys:  reading.gif(18 bigeyes.giffencing.gif(10&7)
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