I just have to vent, to get something off my chest.
First off, let me tell you what really sent me flying. It was recently suggested that I "attend a parenting class" or that I should "pick up Parent's magazine" and read it for advice.
Well, Parents magazine does not offer advice on parenting a "special needs" child. Strategies that work for "normal" children just do not work for these kids. You need to use special tactics with these kids. They are just not wired like other kids.
And Parenting classes? What the hell good is that going to do? Those again, are for NORMAL kids. I have yet to see a parenting class for a kid with special needs.
Bottom line, I am HURT. Deeply hurt. This came from a long time friend. Even though I don't think her intentions were bad, it does not change the fact that I was hurt. I think I have heard it all now. Apparently its not okay to be overwhelmed. Its a normal reaction to having to raise a special needs child. Its overwhelming, and ever changing. One day to the next is never the same. One day something may work, or even a week or two, then that changes.
Then we have to figure out something else that works-that can take time and much frustration.
Its all trial and error. We feel like we are walking on eggshells alot around here.
Here is an example I found online that kind of sums it up:
"The mother of this child was so upset and frustrated that she didn’t know where to turn, and was so overwhelmed by it all that she was in tears and at the end of her tether."
That is how I feel some days. Honestly! If anyone lived like this they would too, I promise you that! Its NORMAL, Dammit!
But its not the first time someone has said something like that to me. I have also been told I should be put on antidepressants (just a short time ago, when I was waiting to see if Gillian was having seizures). Now what the hell is that going to achieve? Do you honestly think that would change the situation? NO. Absolutely not.
I will be honest, I tend to withdraw a little now and again, when things are not going well.
That is my way of coping, and there is nothing wrong with that. I think we all handle things differently. Sometimes I just need time to think, to reflect, and to try to solve what is happening. I also don't like to go out and smile if I don't mean it. I am not a good faker, so I figure whats the use faking it. Doesn't mean I am giving up (which I have also been told I am doing).
I can tell you, this is VERY difficult to live with. The good days are REALLY good. Sometimes they go for a few days or a few weeks or a few months. The bad days are REALLY bad. Again-these can last a few days to a few months. My own mom stayed here for 3 weeks and she got a taste of what I deal with every day. She could not believe it. I have to say, its been worse now than when she was here.
Its hard for someone with perfect kids to understand how hard it is to live with this day to day. Some days, its honestly hard to find something to be happy about, in the midst of this crap.
I may be happy about some things, but its so hard for me to smile on the bad days, especially when things have been bad for a while.
Things are hard right now. I don't know how to help my daughter. I worry about her future.
I wonder what will come next. For people who don't live with her and probably don't see a tantrum episode or other things out of her probably think "How hard can she be?" I guess the saying is true when they say "Walk a mile in my shoes."
Everything with Gillian right now is hard and often takes alot of fighting with her. Getting her up on time to go to school. Getting her to take her meds. Getting her to get dressed. Getting her to comb her hair and brush her teeth. Then she is off to school. The school calls VERY frequently about EVERY little thing. Then we get her home. Gotta fight to take her pills again. Homework time. Its like fighting tooth and nail to get her to do anything. And dinner-very hard to get her to eat. That also is a fight.
Bedtime does not always come easy either.
Now you tell me, would you be smiling if you had to deal with that every day? I think not.