My world is lonely. Have you any idea what it is like dealing with an autistic child that also has epilepsy? It's a double whammy. The things i deal with on a daily basis is pure HELL. Trying to get help for him. It's impossible. Wait lists galore. I do this mostly alone. No one wants to come around him because they don't understand. He has broke everything i worked to buy. Because he has this horrific meltdowns. I can't even imagine what it's like inside of his mind. I often feel abandoned. Who do i talk to? I have called every place possible. When i say i have...trust me...i have. Every program...waiting list. Idk what else to do. I feel like a failure as a parent because i have a broken child. I do not speak of it often. Maybe that's my problem. Maybe i should start blogging our daily life. I have never felt so alone and helpless in my life. But i refuse to give up on him. My heart is broken. I want answers and am always left with more questions. Do you have any clue what this is like????
So this is a post i put out on my fb. I want to spread more about this. My son,Nik, is not a bad child. He is broken. I hate using that word...but literally his brain is broken. He has right side brain damage and his brain fires off every few seconds. It shouldn't. He is moody...he has terrible meltdowns. This has literally been since the moment he was born. He will be 9 on the 30th. We have so many questions and very few answers. My child should not be another statistic. Having meds shoved down his throat and us left alone to 'deal with it'. I see a boy who wants to see the world and touch it with his soul but is bound by a label. As a mother i feel i am not doing enough. Even though i am falling apart i try so hard to keep it sealed. Doing this is slowly destroying me. I am going to start posting about our daily life. I keep starting this blog and get overwhelmed but i need to do this. There have to be other parents out there that understand.