I have just applied to be volunteer at The National Autistic Society event, it takes a part the 22nd of September and I hope to be here. I also wanted my brother to be here so he can attend the event himself.
For those who don’t know, my brother has autism and epilepsy as well. Everything has been a struggle for us, regardless him being the most sweetest kid. He loves us so much. And the way I see him now, and when we go to the shop or do something he actually sees me as his idol or role model. My mum was telling me, there is nobody else that can calm him down than you. Hearing that and living here, it is heart breaking. I can honestly cry right now, which I already do whilst writing this.
There have been so many situations we have dealt with, and the guilt I feel everyday is unbelievable. I try so hard with myself, to love myself and to do things right but something I can’t do is stop feeling guilty. I feel guilty because I wasn’t there the last months for my dog. I let it go until the last day, do you feel me? It has been killing me, to a point I have just tried to shut down feelings. It has been too much. My mood changes and my heart breaks every time my mum calls me and something has happened.
Being the oldest, and the one that can speak for herself and be “independent” it puts a lot of pressure on me. My parents know what I love to do and what I need to do, but because we are a small family of four. I get asked to do a lot, to go to Sweden every month? Or to visit more? I shouldn’t have left for example, or that I haven’t been there enough.
I have been there more for other people than my family so yes, they are right in that sense (and while thinking that I have done that, it makes me angry when the other people don’t even appreciate it). Although, I can’t stop my life and my own goals regardless how much I want to be there. I have always said this: I want to become a better person, more patience, more loving, more secure in myself, stable with the rest of the life. Until then, I wont be able to do things in the right way or the way I want to do them. There is a lot that I ask from myself if I can be honest, I ask myself tooo much. To have this done, and that and this, and that, before anything. Maybe I should just be more gentle to myself, like I advise people to do.
Anyhow, it is not easy to deal with a brother that you thought was going to have a normal society life. I was looking into the future thinking of his first girlfriend, graduation, first time getting drunk, talking to me, telling me I’m too much drama, go to the cinema together and talk about the movie afterwards, go abroad like siblings and friends. See, so much I wish I could do with him. Mostly, I wish I could talk and have his support. I get so emotional every time I think about the situation and him. Anyhow, I pray for him everyday to keep my big man safe.
Anyhow, I hope I get a reply back and be able to engage myself more on how autistic kids, and adults deal with life. What to do to make them feel like the other “normal” kids, how we can help them to develop and feel safe in this society. I want to help!
Well, I need now to book a flight to visit my family for a short weekend. Don’t know when I have the time though? I could have gone this weekend really? Hmm.
Anyone of you readers that have facts or information or experience with people with autism and epilepsy? Let me know. Drop me a comment or an email. I want to know how I can make his life better, enjoyable and how we can help.