Potholes

So, we are in the new library. I am checking out a book when Liberty begins to giggle. The giggle turns into a belly laugh and he is just so tickled about something he can't stop. A couple of nice people that work at the library smile and ask me if someone is in a good mood today. Kindness - I need that. The other older lady looks at Liberty sternly and says, "Sshhh...you need to settle down now. Be quiet." He laughs harder. She seems very irritated as I tell Liberty to be quiet. Yeah, sure mom. She makes a remark about him probably having way too much sugar today. I look at her and say, "He doesn't eat sugar." She says, "Oh, well...." She continues to almost reprimand Liberty, and I say, "My son has autism. He probably does not understand a word you are saying." That shuts her up. All she can say is, "Oh, I'm sorry." But, it is that PITY that gets me, and that urge to hustle us out of the sacred library, where, I might add, there is NO ONE because they are getting ready to close. Why not just let him be, for God's sake?

I am tempted to launch into the mechanics of autism, the gut-brain connection, the yeast...nah, it would be lost on her. Why should I have to explain anyway? Why? I usually don't tell people Liberty has autism until something like this happens or someone persistently tries to get him to answer them.

Mrs. StraightLace represents the general public, I'm afraid. She sees just another child with no manners, another one who does not fit in. Liberty looks "normal" and is so tall for a five year old people do expect more of him. But, try to talk to him and he breaks out into a 2-year-old's gibberish, at which people look at him strangely and back away. They back away from my good-looking little boy who was born perfect and who became brain damaged by a vaccine and my heart breaks over and over again. I am reminded of the nightmare I live everyday and I still can't believe it happened to us. To our family. To our precious child.

A good day has now turned into a bad one. I feel how much we are strangers in our world. We don't fit. He doesn't fit. All of the fears rise up like demons, all of that gunk you think you've risen above and moved on from. I'm in tears as I leave the library for home.

When is a giggle just a giggle and not yeast-related for God's sake? I forget what a normal 5-year-old boy does besides talk. I am not sure what he understands anymore. I am not sure of anything. When I do try to talk to him, all he does is fiddle with my seams obsessively and make noises. He still tries to drag me everywhere. So much for progress with signs. His school thinks he has made progress. Oh, please. I should have had someone in this house helping me every day. I should have gone the ABA way two years ago. Should have been more aggressive.

Coulda, shoulda, woulda. Again.

I am suddenly reminded of how mentally and physically exhausted I am. Maybe that is why I spend time in nostalgia. Maybe it's not related to midlife, but instead just a remembrance of a life gone by. I remember what life was like before all of this; what I was like.

This morning, I was cooking a favorite old recipe of chili beans that my mother used to make for us, that happens to be one of Liberty's staples. I was cooking it ahead to freeze like I always do for some of his meals. The smell of it cooking reminded me of a time when Lib was just a baby. It was autumn and we lived in the old fifties style house with the giant kitchen and the playroom that adjoined it where I could keep my eye on him as I cooked. Such a sweet time. The time before all of the trouble started. He was just my little son and we had wonderful days together then, back when he still nursed and took naps and ate everything that I cooked for supper. It was such a short time as we got the diagnosis at 20 months of age. That memory is now brown around the edges. Everything is in sepia tones. Precious days, gone now.

I will never forget the day that baby was labeled "disabled" by the government. Life became surreal then.

I saw another mom in the library on her way out that I used to know. She, with her two adorable normal children. Me, with my adorable but strangely behaving child. I avoided her like the plague. She would not have recognized me. When she knew me, I was about the size of a toothpick, wearing fashionable clothing. Now, with the extra 30 lbs, the extra wrinkles, the sloppy clothes...I'm sure she would not have even known me now. It would have been too painful to see the shock in her eyes. I'm just a tired mom of an autistic child who can't seem to quite put herself back together again. I think the only ones who really get that are other moms just like me. For those of you reading this, my hat's off to you, too. It's a tough road, but we keep on going for our kids.

I apologize for this being so depressing, but at the same time I'm not deleting it. I allow myself some wallowing time. Because this is the reality of it. It's great to see people who are "fighters" and doing all this stuff for their kids and I appreciate that. I have my own techniques for staying above the pain. But, I also appreciate it when someone .... one of US ... tells it like it really is. I need to acknowledge this part of the trip, too. I have to acknowledge it, so I can feel it and then let it go.

Oh well, it's just another pothole in the road. I will climb out of it. I will spend time finding thoughts that feel better and better to me until I find relief, and once again, I will be back in the driver's seat, talking to other moms, recording what I see each day, giving supplements, trying to help my child function in this world the best that he can. Being hopeful. Having faith. I will look through the lenses of what my child IS doing rather than what he is not doing, I will somehow put it all in perspective again.

But tonight, I'm hanging it all up like a tired, ratty old bathrobe. I will be reading a book, or doing a puzzle and placing my attention on anything...anything other than autism.