The first time I stepped foot in a parent support group meeting. I opened the door to this "foreign language". ABA, stimming, IEP, CAP, evals, OT, AU, inclusion, PRT, RTI, TEACCH, PDD, AHHHHHHHHH!!! I was completely overwhelmed. How could I possibly help my daughter when I don't even know what they're talking about. These moms seemed like they knew more than the therapists did. I had never heard of half of what they were saying. I was just nodding my head and trying to act like I understood...but my stomach was sinking and my head was swimming. I felt like the worst mommy in the world. I just went straight to my car and cried. It was a raw moment..."God... why o why did you give me a child like this...I don't know anything about this stuff...I hate to read...I don't like doctors...I don't want to have to learn all this....I am completely unequipped to take care of her....I'm clueless....I CAN'T DO THIS!!!" As I sat there in my car in tears screaming at God....I felt Him quietly say..."I know you can't...but you are not alone...I will equip you...I will give you the strength"....And He has...
The first few evaluations...and therapy sessions...I had to take notes writing down ever word I didn't understand and go home and research it. "Addie has some fine motor skills delays"...um ok..stop...what are fine and gross motor skills?? I mean who has heard of this stuff?? Pragmatic language skills...cognitive thinking...sensory processing...adaptive behavior...it was all new to me.
I began researching and reading books...making notebooks and journals of our appointments...taking my huge stack of papers to evals and observations. I felt like I was never going to learn everything I needed to know. After many tearful car rides home...I gradually began to feel like I was understanding what was going on. But it is such a huge learning curve.
Today we had our IEP meeting with the school system. It was emotionally draining listing all the challenges Addie deals with every day...and listening to the detailed observations of the therapists. "she doesn't interact with her peers...she doesn't play...she wanders around the room...she doesn't like to be touched...she lines up the toys...she screams at the girls that were asking her to join them"...my heart didn't want to hear it. But as the meeting went on...I had a peace about this room full of experts and educators that are all trying to figure out what Addie needs. It brought a new meaning to "it takes a village" to raise a child. When they asked what were my concerns. At first I didn't know where to begin...I could go on for hours. But then I remembered...I was prepared...I had read the Wrightslaw website...printed sample IEP's...and written my own goals for Addie. About 1/2 way through the meeting...I realized that I understood everything they were talking about. I was able to offer information that they were able to use to help Addie. I was able to advocate for her and contribute. I have never been so thankful. "This is not me"...I kept thinking..."I'm not good at stuff like this"....but here I am...somehow I have begun to understand this crazy foreign language and I didn't even know it.
I stand in amazement of the veteran mommies that KNOW. I'm still only just beginning to understand this "foreign language". They have been through so much to learn all that they do. Their stories and experiences are priceless and inspiring. God has lead me to some wonderful mommies and therapists. They have taken me under their wing and taught me so much more than any book ever could. Their help and personal experiences have changed our lives in ways I could never thank them enough for. Mom's that have children with special needs may not have ever wanted to know all that they know. But be assured that they do. I feel like I am surrounded by some of the smartest...confident...and BLESSED mommies.
I started this process completely overwhelmed...unconfident...scared...full of guilt...and alone. It's still only the begining...but the Lord has blessed me so much with the perfect people in my life and the knowledge about autism. It may not be what I signed up for...and maybe I never thought I would understand this "foreign language"....but I wouldn't trade it. I hate that question..."don't you wish you had a switch you could flip and make her better?"...are you crazy?? NO!! Then Addie wouldn't be Addie. I love her just the way she is today...and I can't wait to see the woman she will become.
Addie shows me everyday what it is to be brave, smart, and confident. The world is such a hard place for her...but she keeps smiling. We all think we are helping her and teaching her....but I really think she is the one teaching us...