from the other side

We are what, 2 months removed from the big REMISSION announcement?

And what have I gleaned from being on this side of the autism world?

This side is joyous and scary at the same time. For as much as you LOVE your life now, you fear it too. I know that I need to give myself some more time to get a more accurate idea of what remission, recovery, feels like. I know this.

I also know the fear of the possibility that your child is regressing but you are missing it. Or worse. You are in denial.

That's the detriment of autism. It's subjective to opinion. By anyone. By everyone.

The hard part of recognising autism in your child is pushing through denial to see truth. To stop explaining away their actions. To stop saying, "oh, she's a little delayed but not every kid gets EVERYTHING when they should." And when they are 18 months and not really caring about anything other than rocking or flapping or lining up toys or screeching at the top of their lungs for no apparent reason or whatever their stereopy is...well, then it's quite evident.

But as a parent or caregiver, you always think back to BEFORE that consumed their life. BEFORE that was all they did to find some kind of early warning sign that you ignored. And IF you are blessed enough to go through the entire Autism and ABA process and find that beautiful child once again, you again think back for some kind of warning sign. something. so you don't make that mistake of missing something so evident. again.

It's hard. I'm being honest.

And no I'm not...'oh poor me, my child has been blessed with recovery and I still want to find something to cry about or get sympathy over.' I'm not. I'm honestly telling you that I think it will be YEARS before I will be able to relax about Maddy's development. If ever. The curse of a mother and the curse of a mother who has seen autism in her child.

Yes, I can see how wonderful she is. I can see the amazingness of having her back. I also see the delay. The literalness of her brain. I quiz her things and then quiz Maelle and when their responses are similar...then I breathe a breath of relief. And I am FOREVER grateful that I have Maelle to bounce is this normal? behavioral questions off of. (and yes I am grateful for Mae-Mae for more than that. She is SUCH a wonderful child. VERY loving and honestly, the best thing for Maddy. She mothers her and always makes sure she is taken care of. She has the sweetest heart and will make such a wonderful mother someday. Because that's what she loves to do. Mother. and LOVE.)

Maddy is still very literal. She does not comprehend things like "what do your hands feel?" I can see her brain thinking...my hands don't FEEL anything. They are not happy or sad or scared or mad or surprised. They are hands. They touch....so I find myself having to stop and rephrase things often. And I find that when Maddy is the MOST defiant about something...it's because she doesn't understand what the heck I am talking about. Even tonight I was telling her that when I talk, she needs to listen and she just stood there looking at me with a blank face. She didn't know what "listen" meant. Okay...you need to hear me. And then I explained that "listen" meant the same thing as "hear" - you hear with your ears. You listen with your ears. She smiled, understanding and off she went in her happy self. And I sat back and went...crap. What else am I saying that she has no idea about? And I seriously need to find a way to teach her that when she doesn't understand me to ask me what in the world I am talking about....on a three year old level.

She is doing well in school and seems to have friends there. Her school work is improving and I think she loves it. She really does seem to do well in the social aspect of school.

Overall, she has her quirks but is still learning and growing on her own without the use of ABA and that was the goal.

I know there are millions of parents out there that would give anything to be in our shoes. To only have to worry about constantly over analyzing their child's behavior instead of having to deal with daily ABA schedules for years and years on end. With only seeing minimal improvements and ultimately NOT getting their child back. I know this too.

I would be lying if it was all roses after the RECOVERED diagnosis. It's not. It's still completely awesome and I would NEVER want to lose it...and that is why it's so hard. Because we all had those smiley babies once and Autism took them once, to get them back and lose them again would be unthinkable and terrifying.

I refuse to live in constant fear. For now, just slight paranoia. I know it will subside. I have hope in that. God has assured me of that.

I have learned I have to let myself feel these things. I have to feel them. I have to go through them. I have to process and move on. And I share that with all of you because it's the reality. the honesty. another part of our journey through autism.