PDA

View Full Version : Where to start?


PainInTheNeck
07-10-2007, 07:50 PM
I posted on here a few days ago and felt that I had been really too concerned with myself that day. I started my period so now I can stop being so hysterical for a bit....sigh (sad but true)

Ok....where to start? I have been given the gift of 3 children in my life. My oldest is a wonderful artist and so deeply desires to be his Dad's best friend and my strongest rock.

My middle(the only girl) is a delightful, bright and very accomplished student and person. She flew through college already with honors every semester and works in the medical field. She had a 4 year scholarship but chose to do a 3 year program to become a radiographer and is already learning CAT scan. She is 21 and has huge responsibilities which she handles in an excellent caring and professional manner.

My youngest is the only living at home at this time. He is 10 and will enter 4th grade in the fall. He was a big surprise!! But the child who gave us a reason to smile and laugh and not just totally give up when our oldest was first hospitalized in a long term psychiatric facility. I received the 10 yr old's "diagnosis" of Asperger with possibility of co-existing ADHD, anxiety disorder, and depression. It came in the mail on Saturday.

I am tired. I want to do everything I need to do for my little guy. I don't have on rose colored glasses this time around and so instead of feeling hopeful....I find myself feeling jaded and wondering if there really are any answers. My honest experience has been that nothing helped my oldest son. So....maybe.....that is because he was misdiagnosed? That is one possibility. Of course that is a possibility that happened repeatedly with him anyway.

I called the people who did the testing on Monday and told them I felt overwhelmed upon reading the results and diagnosis. They were so sorry that the austism helper is on vacation until the end of the month. I was given the number for a local pediatrician that they felt has been good with his own son who is on the spectrum. I called his office over 24 hours ago, got an answering machine, left a message. Havent head back. They gave me the number of a local scout master with a son on the spectrum. Message left there also.

I called my sister and asked her what she thinks. She reminded me that she had thought he had this type of problem back when he was 2....and I took him to visist my olders sons child psychiatirst who told me he was perfectly normal except for acting out because I was depressed....
and then my sister went on to tell me that she was really glad I had this diagnosis now and she hoped we would be able to help him and oh, by the way......she knows there are people in the family who think the younger one is just gonna end up in jail like his older brother but she assured me she doesnt think so. Well.....I had suspected that people are thinking that way so I guess now was as good a time as any for her to tell me that.

Ummm....I think I am very angry too right now. But maybe - anger isn't really it.....I think I am just so deeply hurt. I am not a religious person but I can't help but remember that "God doesn't give you more than you can handle"....well....for years I have had more than I can handle. HOW ON EARTH DO people handle this? Why do some kids get better? Is it because their parents try harder than me?

Ok...well- I think I have said enough for now. I have spent many hours over the last few months reading your posts. I admire you all so much.

peglem
07-10-2007, 11:54 PM
Well, where to start? What is your greatest worry/fear? I'm guessing behavior...if so, you should start with a functional behavior analysis and then develop a behavior plan to address those issues. I'm surprised Mili has not stepped in here to tell you all about RDI (relationship development intervention ) which basically is a parent run program w/ a consulting therapist. The goal of RDI, as I understand it, is to purposefully guide your child towards integrating normal social development into their neurological wiring.

I'm not sure how people handle this- I feel like I handle it poorly, mostly. But, other people involved in my child's care act like and comment like I'm some sort of super-parent. I just do most of what I have to and save the rest for when I can get to it. I have a 12 yo girl who has I guess what most people would call "Kanner's" autism. (Kanner can just keep his autism as far as I'm concerned) She is nonverbal with severe behaviors. She seems to be dealing with many underlying medical issues that would probably be easier to sort out if she could communicate better.

You can do this PITN- just because you're a mom fighting for your child and that's what mom's do. We'll help you as much as we can, but even when we can't help, we'll be here to understand when you're frustrated and overwhelmed. We'll understand when you're scared you might hurt your own kid, just because you've been stretched so thin and pushed to the limit. You can come here and feel free to say what you want and we'll listen w/o judging you. I find that comforting because the world at large has no clue.

Isabelle
07-11-2007, 12:37 AM
First thing, drugs never had helped anyone so if your oldest is in a long term psychiatry facility being "treated" with psychiatric drugs chances are he never would get better.

There is statistics somewhere saying same.

I observed it on my non-verbal adult autistic son. He was "treated" for 21 long years, on and off, with all sort of drugs. Some drugs made him hyper, some made crazy violent and self-injurious, some added abnormal movements, insomnia, bizarre behaviours, etc, etc. Now drug-free for a year he is having longer better days. He was given all those diagnosis that your 10 year old son got and some more. Ok, he is not Aspergers, he is non-verbal "autistic", some called it "Kanners".

If you allowed your 10 year old to be medicated for those controversial diagnosis, he would really end up with his older brother. Your sister got you down with those words, please, educate yourself to prevent such future.

Have you tried diet for your 10 year old? Sometimes ADHD is a food allergy or sensitivity to preservatives in food. Sensitivity to gluten or milk products cause psychotic behaviours. Sometimes a virus or parasite can cause odd behaviours that make a child look "autistic".

He is still young, rule out food causative/related behaviours. Remember, that now "we are what we can process".

LIZARD
07-11-2007, 09:36 AM
(((((((((((((((((HUGS)))))))))))))))))))), first off.

I have no answers for you, but I think we have all known that sense of being so overwhelmed that we can't see straight. I certainly have. In spite of how well Drew's doing, I think about that mantra, "God doesn't give us more than we can handle" and can't help but think it's something chirped by some idiot who's never been through anything. :rolleyes: All you have to do is look at my siggy (and add probable hypothyroid to it :rolleyes: :( ) to know why. Handle??!! We only get one shot! Why should some of us have to "handle" all this $h!t while others get through life with little adversity at all?? (Yeah...I'm exhausted. :( ) If it annoys you as it does me, just roll your eyes and march on to the best of your ability. (Also, has your 10 yo ever had an MRI?)


LIZARD :(

PainInTheNeck
07-11-2007, 09:44 AM
No Liz.....he hasn't. What in particular would you think should be "MRI'ed"? Are you thinking Chiari?

LIZARD
07-11-2007, 11:30 AM
Are you thinking Chiari?

Yep. It sure wouldn't hurt to check, since it seems to be so prevalent in our kids.


LIZARD :)

PainInTheNeck
07-11-2007, 12:18 PM
OK...what a strange web we weave, eh? The way I found you all is because I had a medical neurological crisis that many people with Chiari experience and which I think (??) can even cause a form of it.

The post over at the cfs leak message board helped me to diagnose myself. During a hospital stay I was finally able to get a neurologist to listen to me and sure enough....I was right. So anyway- the potential of this message board is absolutely awesome...I know that first hand!

Pooh head
12-06-2008, 09:54 PM
No one tells you that to be a Mom you have to be wonder woman! I have a blessed life with two adult children and two grandchildren. When I told my doctor I was suffering with intense fatigue he said of course you are(LOL). Just don't forget to breath!

Kristen (ColeysMom)
12-08-2008, 09:58 AM
I'm not sure how people handle this- I feel like I handle it poorly, mostly. But, other people involved in my child's care act like and comment like I'm some sort of super-parent. I just do most of what I have to and save the rest for when I can get to it.

I found these words to be SO similar to what I experience too.

It's easy for me to get down, about so many things, when Coley seems to be doing well...then I can see clearly how little time I have for the house and other things...things come into to focus and I see the mess! That makes me sad because I know why my world is not 'neat and orderly'.

Then when he's not doing well, I wonder and stress about him...

I find myself needing to remind myself often of how far we've come...it seems to be the only thing that kicks up my drive...I used to be able to just go & go & go without question...but somehow now I need to talk myself into it, and my patience definately faulters...although others tell me differently, I know what I'm feeling and it's wearing THIN!

I find that the less secure I am in 'what-to-do' the more stressed I am...I'm sure that's the case with everyone...when he was smaller there were specific exercises that I was instructed to do...so I felt like I was 'doing' something.

Somehow, now, I don't get that, and I feel like I'm sorta in a waiting pattern or something. Well I do get: take him to this Dr or have this test done, etc etc... but I'm not getting the type of 'therapy' sorts of stuff I used to...so I don't feel much like I am contributing...

My point is that I tend to get more down the more 'idle' I feel...if that makes any sense. Reading your post kinda stressed me out in that way...your mood reminded me of how I get when we are 'between' advice.

I don't know if it helps at all to know, you are not alone in how you feel...it did for me, because for the most part I feel like a terrible parent...I know Pegs is not...she is a caring dedicated loving mom...so it helps me to consider that I may not be seeing myself 'clearly'...but I still feel a lot of guilt anyway, and that's for too many reasons to get into here...but I feel it for being tired and overwhelmed too.

Looking back tends to lift my spirits...

I don't want to duplicate the words of others, so I will just say that I agree with all that's been said so far. The only thing I would add to is Liz's...I'd bump it up a little...you need a Neuro for the MRI (I think)...so I would have a full Neuro evaluation (MRI, EEG (I'd suggest BEAM) etc.). There may be other things going on neurologically too...although, it sounds like Chairi might be more likely than anything...

...the full neuro eval is how we found the first clue in Coley's fructose intolerance...so diet has helped the most for us...

Well I hope all this rambling helps...I'm in a wierd place these days, I feel like that 'other shoe' is about to land...so I may not be coming across in the way I'd like too.

Please keep us posted...

{{HUGS}}
KJ