The noise in my head

If you know us and/or read my blog you know that Bryan is not a quiet kid. He talks loud, he will yell randomly and basically when he’s awake you hear him. I don’t really hear him anymore. I kind of notice more when I don’t hear him than when I do.  A few nights ago he went to bed early and Jason came downstairs to talk to me. I said, “Is Bry sleeping?”. He said “sure, can’t you hear how quiet it is? It’s nice to have a little quiet.” It’s true, the quiet is almost so loud you can hear it. It’s just another one of those things you get used to, it becomes your normal and you only notice the absence of it. Really I am way more distracted by the noise in my head, the little sounds of have you been planning for the future for Bryan sounds. He’s 16 so how much longer can I pretend he’s a little kid? Financial planning is one thing for him, but the rest, yikes, the rest of it.  The rules change, as I understand them, at 18. He will need a guardian and other things that I have not faced up to  yet. I think if I’m really honest there is some sort of secret hope left that maybe in a few years he will be ready for college and a “normal” life. I am a bit ashamed to admit that while I try to be realistic all of the time, dealing with Bryan’s adulthood disturbs me more than anything. There is no hiding the fact that my son has autism and very likely will not have a typical life. I truly feel like a piece of crap even typing this, let alone processing it, let alone living it. Beyond, even after all of this time. It is shocking to me that I still have some little place in my soul that thinks he may end up some typical adult. I guess as a parent, there is no end to mourning the differences that a special needs child brings to you. There is still no peace and there never will be. No amount of love and acceptance can ever truly heal the feeling that sometimes things aren’t fair. And I know everyone has challenges and ups and downs with their kids. It’s different, I promise you. I know because I also have a typical kid. There is a difference between worrying about how your typical kid will navigate life and how you navigate on behalf of the special needs one.

I will get over myself and deal with the reality and figure out what needs to be done.

If you are one of my close friends or autism parents reading this you may be saying, “wow I didn’t know you felt this way”. Yeah, I haven’t faced up to it. When people ask if Bryan will live on his own or go to college or drive I cringe, both literally and figuratively. The loud battle between the mind and the heart, the needing to face up to the reality of what is coming and the emotional denial is deafening. When someone says group home I get anxious, like can’t you people just shut up?  I know this sounds extremely melodramatic but it’s just sort of the next thing in my autism journey. I look at memes people post on Facebook and all over the internet about kids that are often undressed or running away or hurting themselves. Those “issues” are not our autism issues any longer. I see those posts and I can measure our growth since those times. While Bryan may get up very early on a weekend and be very loud and disturbing, I no longer have to get out of bed and deal with it. He can make his own breakfast and I smile in my bed when I hear him up early and clanking plates because he’s emptying the dishwasher. The worst he will do is eat too much! The new challenges are deep. I can’t hide behind time anymore. Seems like we are growing up at the same time in many ways.

 

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