Horrible Day

[Dara]

[font:Century Gothic][/font]THis has been one of those days that I want to walk out the door and never come back. I cant believe I said that out loud but I figure that all of you know the kind of day I mean. I feel like we have been completly left out in the cold. We have no support at all. His therapists dont know what to do. We certainly dont know what to do! All day long Sammy has been screaming, hitting, banging his head, throwing things at us... We have probably had a good 10 minutes in every hour. We are going to the neuropsychologist april 7th and the dev pediatrician on may 30 but I dont expect any answers. I feel so hopeless and I dont think any of this is going to get any better. He is only getting bigger and stronger and more violent as we go. I know that before long he will be on medications but he isnt even 3 yet. I am hanging on by a very thin thread here and so is my husband. We are really in trouble this summer when my husband has major surgery and cant lift Sammy for 6 months. I wish we had family support but they sit in judgement of everything we do. My parents are no longer living. At least my mom got to meet Sammy. Not that she would help at this point either. It would be nice to hear them say " you guys are good parents" or something with some kind of support instead of he is spoiled and you dont discipline him.. We do but you cant discipline someone who doesnt care! I am so tired, ithas been one thing after the next first my dad got sick, then we had sammy and he had siezures, then my mom got sick, and now all of this..I am sorry for going on, I jsut needed to vent in an enviornment where people understand. Thank you for the listening ears!
Much love to you all!

 

[totoro]

Oh I am so sorry you are going through this... we are trying to get our 2.5 yo into a developmental pediatrician as well... of course noone is taking patients around here!!! ugh. She just bit my 5.5 yo who was taunting her, but when we tried to talk to her she just laughs... we put her in a time out for a few minutes and she doesn't care... we tell her how bad she hurts people, show her how to hit a pillow, we have the "no hitting" books etc... yet she just does not show any empathy... it is kind of scary. Our 5.5 is at least empathetic after her rages.

It is very tiring and scary and frustrating... we get the oh how can both of your children have issues??? Noone believed the first one, and now oh how can it be both??? We just want her checked out and any of the people like our Occupational Therapist (OT) and therapist that have seen her feel she should see someone... even our old psychiatrist said developmental pediatrician.

But the people who have no clue really do make it hard, they are the ones that can put doubt in your mind at times, and make you feel guilty. You can't let them. Keep fighting for your son.
Whatever his diagnosis once you do get it even if it is a working diagnosis, at least then you will know what to research and where to start as far as support.
Hang in there. I know it is tiring but be consistent with him... and try not to get angry.
hugs

 

[Got2Sleep]

((((((Dara)))))))

Oh honey..I wished we lived closer and we could swap out for a break. I KNOW exactly how you feel..and mine is almost 6.

But, I remember when he was that age and people would do the whole "oh, he cant have a REAL problem, it is probably just the terrible 2/3s" and I would feel like a lousy parent!

KNOW you are not a bad parent. YOU are struggling to get help that is hard to find at any age, especially that young.

I am glad you have some appts already set up..that is a start!
HUGS and prayers for you all!

~s

 

[tiredmommy]

Dara,
You & your husband are good parents. Unfortunately, you may very well have an unstable child on your hands. This is no longer about blame, so try not to put yourself in a position where you are given such opinions of your parenting. You need to find ways to redirect conversation away from your child's behaviors; this includes not looking for support from those who won't give it. Is it possible to hire a teenager for a few hours a week to be a mother's helper? That was a huge help for me when Duckie was at her worst.

 

[SRL]

We've all had those days and even moms with children who don't have our issues have them.

An accurate evaluation and diagnosis were the first steps to getting us set on the right path and I'm thrilled you were able to get appointments with both types of specialists so soon. The waiting lists for developmental peds is upwards of one year and usually a minimum of three months in most areas of the country so you are very fortunate. This is the hardest time, I think, waiting for these appointments because by now you're usually pretty sure that something is up, but beyond the everything is uncertain and it's very difficult.

Hang in there, lie low in demands, take shortcuts such as paper plates and pizza carryout to make your life easier for a time. Don't even think about discipline right now--just do your best to keep Sammy calm while you sort this out. Don't take him on trips out such as shopping, library programs, etc. unless you have a sure thing (ours was the fenced in local zoo). And be sure and get yourself out of the house alone regularly--even a trip to Walmart at 10pm can seem like a break on days like this.

 

[Ltlredhen]

SRL is right. At times like this you need to just go into survival mode. I've found that there were days when I actually became nothing but a "shadow" for difficult child. I spent all of his awake time trying to calmly redirect him, steering him away or around anything I felt might set him off. Physically and mentally exhausting for the caretaker I might add.

Don't listen to anyone you know does not understand first hand what you are living with. People might sympathize with you but until they empathize with you they are really clueless.

Try and hang in there. I'm assuming you are seeing someone at the large children's hospital in your area, they are really great at seeing the entire picture.

Sorry if this has been addressed, but one of the most helpful things we did was to fill out a parent report and take with you to the evaluation. Also for the next few weeks, write down everything you difficult child does, what triggers the episode even if it is nothing. Document what he eats, drinks, any medications he takes, waking and bedtime,...everything. It doesn't have to be a great big journal, just do it in brief sentences in outline form. You never know what might be important to his diagnosis. I found the more organized I was at documenting my difficult child and his behavior the better.

Donna

 

[Dara]

First of all, I would like to thank you guys for all of your kind and supportive words. I am so thankful to have found this place! We pretty much dont go out too much at this point. It is way too stressful. We have select places we can go an that is it. We stick to it. Also when we go out he will not walk. He seems to get overwhelemed in public places and only allows my husband to carry him which will be a problem this summer when husband has his surgery. I seem to be the target of most of the bad behaviors for whatever reason. We have come to grips that there not of his behaviors are for any logical reason. Our biggest problem is that the people that need to see the behaviors dont because Sammy is so calculating about it. We have been in ABA therapy for almost 2 years and he does not act this way in front of them. Only a few times they have seen it and also a couple of times on camera but not enough to really get a good idea of what is going on. His therapist will literally walk out the front door and Sammy will tantrum until he sses his therapist come back and then it is over! The neurologist said that this calculating and controlled behavior shows a kind of brilliance that we just cant comprehend. That is great and all but he is still acting like a maniac so that thought doesnt help me at this time! I just dont understand how the sweetest, silliest, cutest little boy can also be a psychotic maniac at the same time! I just need next saturday to get here so we can make it to the neuro psychiatric but I will not allow myself to get my hopes up just yet.

 

[Dara]

I just want to change his diaper. I cant even do that! Everything is a battle. all I want to do is change his diaper so he doesnt get a diaper rash. This is impossible! What am I supposed to do? LEt hims sit in a poopie diaper for hours? I cant wrestle him to do it. That just doesnt work. That is a battle that he will win hands down every time. I tired taking the battle out of it and saying where are we goint to change you today? IT has worked for the most part but now I cant even get hime to do that! I am all out of ideas. I had to take him to school in a dirty diaper and pjs. THey agreed to do this but none of us thought we would have to! Where can I hire someone to come over the times i have to change him and they can do it! He will be good for them. This is miserable. I dont know what to do anymore