Frustration!!!

I am so frustrated right now I just want to scream! I understand that to everyone else, Bryce is just another kid in the system and they couldn't care less about him, but I am so sick of having people tell me one thing and then doing another or just not doing anything! They don't get that when it takes them 6 months to get what he needs "now", he most likely will have regressed far enough that the device that could have helped him then is no longer going to work for him! That is how leukodystrophy works! Every day he is slowly regressing. He is not getting better...or even staying the same! Every day they wait is important time wasted, every minute! Why can't they get this!!! I want so much to be able to communicate with my child. I want to see him enjoy what life he has here. He is being robbed of so much, why can't these people work with me and help him get the most out of it while he is here!!! It just makes me so mad and so sad!!!! I hate knowing that there are things out there that can help him to a certain extent and realizing there is only so much I can do to get those things done because of all the red tape and lines of people we have to go through to get it done. It's ridiculous! It hurts so much to see my almost 3 year old knowing what he wants, trying to let me know, and then getting frustrated when I just don't guess it right. He is such a good kid and so patient and yet, he is mentally a 3 year old. Think of the 2 and a half and 3 year olds that you know. How many of them are OK to just lie there and not talk, not be able to get their wants known, not be able to move on their own more than a newborn can?! Not to be able to do anything by themselves when that is exactly what they want the most...to do it by themselves! I can't think of any and in this way, Bryce is the same as any other child his age. I am sorry, but I am so frustrated right now. I wish some of these idiots I'm trying to work with would come live with this incredible boy for a day, just one day and maybe, just maybe they would see what I am talking about! Not that they would care, I know that is too much to ask, but at least maybe they would see!