Regression- A step backwards

I find writing down my thoughts helps me clear my own brain out. Otherwise I feel like I'm being screamed at so forgive me if I ramble. This blog's purpose is two fold: to hopefully one day show my girls what our life was like and show Annie how much she overcame and how loved she is, and also, to keep people who pray for our family updated.

Annie is in a pretty significant regression. Its actually the first time I have seen her regress to the point where I don't know this child. It is like something came in and stole the soul of my child and left me with a shell. I know some of the things I might say might be controversial but it is how I feel and some of this is not pretty. Annie walks around aimlessly for hours and she does what is called "scripting". She quotes phrases from movies, shows, books, or things people have said. She walks around all day and scripts with no language intent. Sure, she is talking but no communication is happening. She doesn't even know what she is saying. I get this all the time, "WOW she is a good talker and she has great language." Great, doesn't help when she has no idea how to use that language. Its as useless as having no language at all. I am grateful she has words. However, it is painful to hear her repeat herself over and over and over with no purpose. I'll tell you what it is like. It feels like an invisible person is with us and everytime Annie "scripts" or spins or severely melts down, its like that invisible person is saying, " SEEEEEE? Don't you see she has autism? AUTISM!!!!! And it will always be there. " I might as well name this invisible "thing" cause its always there, ready to feed on my worst fears. Worst fears such as, she won't ever get married. She'll be bullied cause she's weird. She won't have any friends. She will live a lonely life. She will be treated improperly by care givers because she is vulnerable. What happens when Josh and I die? Will Joslyn take on the responsibility? Will Joslyn be bitter or be protective? Will Annie get worse? Will she get better? Can Annie be recovered? These questions are on the forefront of my brain EVERY single day. Every single hour because autism is here every single minute. I go through life wondering what my daughter would be like without autism. So many of her "characteristics" are autism so at times, it is hard to see who my daughter is. I get glimpses here and there. When she comes up to me and hugs me and says " I love you". I am extremely grateful for these times because its these times that get me through the dark ones. The dark ones are DARK.
Autism is like an emotional rollercoaster. One week is awesome and you think, " YES we are on the way to recovery." The next week, you're in a regression and your hopes and dreams die for your child all over again like they have a thousand times before. You think it is bad enough when YOU as the parent see the regression. But when other people see it, it feels like a punch in the gut or a slap to your face. Like giving an indian burn on top of a sun burn. It makes you whince, and it feels like the core of your soul is shaken. And a piece of you dies. You cry, then you get back up with your sword and shield and fight on. Because you and only you are the ONLY advocate for your child.

Annie's teacher at school called me and said they aren't making any progress with her. They said she keeps regressing to the point where they do not know what to do with her. They want her to be evaluated for the autism classroom at Beechgrove Elementary. This would provide Annie with a lower teacher/student ratio with a teacher who specializes in developmental delays and autism. Talk about a low blow. I got off the phone. Cried. Texted my friend who has a child with some issues and she has been a source of strength for me. She said, " Be brave and get the job done. She's counting on you so only feel bad for a moment and get back on track to get her well." - Gina Tharpe. What good advice. I don't have time to sit here and cry. People in my family who constantly tell me they pray for my family, close friends who offer hugs and words of encouragement, those people and my God are the ones who make it possible for me to pick up my sword and shield and fight on.

This verse keeps on coming back to me : "For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11 NIV. 


I have to entrust my child to the Great Physician, even though I want to keep her in my grips. He is prying my hand open and I need to let it go to HIM, however hard it is. 


My child is a sweet, loving, tender, compassionate little girl. Autism has my child, and I will get her back.