One of my goals this year was to make life easier for Recker, any way that I am capable. I realized awareness is one small way i can help make his world more bearable. Talking to everyone I know and meet about Autism and helping them understand Recker and all the millions of over kids like him. So this month is Autism Awareness month and i have been working on a project. I have reached out to you, my readers and social media, family, neighbors, and even strangers to find out what you would like to know about Autism. I want to answer (with the help of professionals) all of your questions until you don't have anymore.
I figured i would start with Recker and his diagnosis story. I know i have posted this several times but for those who have not seen it ill brief you with pieces from previous posts....
"When Recker was 11 months old he said his first word, "dada" followed shortly by "momom." I remember it vividly, the moment i first heard that word "momom." He and I were sitting on my bed, he was in jammies (seriously little guys in two piece jammies, there is nothing cuter). I was reading and he was looking through one of those drool proof baby photo books (you know the puffy ones?) and he said it. That feeling was incredible. Looking back i wish i would have reveled in it, would have made the moment last longer. Had i known i wouldn't be able to hear it much for longer, I'm sure i would have. Recker went on the next month or so learning new words: 'dada', 'momom', 'baba', 'no' and 'don't'.
The last word i remember him saying was "don't." He was yelling at Jeremy in my parents living room because we were leaving and he was picking up all of Recker's toys and putting them away.
"Don, Don, Don, Don, Don!" I remember standing on the other side of the couch laughing.
But he stopped. All of the words stopped. He changed."
We decided to visit our pediatrician, we were concerned. We were told (not by our usual pediatrician) that Recker was fine and to not worry about it and to bring him back to be tested when he turned three. I was NOT ok with that and i knew something was going on with my baby. We were finally able to get into see his pediatrician. He did the MCHAT (ill talk more about that in a later post) and he failed it. Dr. Guthrie referred us to a Developmental pediatrician. We called and the wait list was months long but luckily we were able to get squeezed in. I made the appointment and it felt like we waited forever for that day to come....
"D-DAY" (diagnosis day)
May, 23, 2011
i barely slept last night. i lay in bed wide awake. sick. worrying. praying. praying that i'd be able to get through today. praying that everything would be ok. i just had this feeling, ive had it once before, in louisiana. i just knew. i got recker all dressed and we headed to phoenix. when we got there, we got into see Dr. Robbin Blitz (she used to be at St.Joe's, now she's at phoenix childrens) at around 9:30am, she came in with her intern. She asked me to sit next to her by the computer while her intern observed/played with recker. they layed out gymnastic type mats for him to play on, gave him toys and books. I sat there as Dr. Blitz went over his extensive bloodwork that he had done last week. she said there were some very concerning irregularities. i thought, well ok so? she explained that she was concerned that he has something called mitochondrial disease/disorder. she said we need to see the neurologist and that possible he may need a muscle biopsy. then she sat there, went over all of her observations, the 5 tests that recker took, 2 evaluation packets done by me, my mom, and the doctors. she was telling me everything that i didnt want to hear. i sat there. i was listening. i just didnt understand. this wasnt how his appointment was supposed to go. i just kept telling myself, hold it together i think you may be misunderstanding her. but then she said it. AUTISM. she showed me where he rated on the spectrum. that was hard to see. he is moderate on the scale from mild to severe, he's right in the middle. i was just told my baby was autistic. i held it together. i kept telling myself to stay strong. i think i was still in shock. they both looked at me with a puzzled look, like maybe i wasnt getting it. because i didnt react at all. i just sat there staring at the wall. she got up to get me a tissue, which i thought was weird at first. THEN IT HIT ME. he will never serve a mission. he will never get married. he will never have a family of his own. his life will never be what we thought it would. i finally cried & she sat there with me and went over this whole huge packet she made for me that had information about ASD. by the time i left her office it was after 12:30. i cried all the way to the car. i sat in the car for about 30 minutes sobbing. trying to comprehend how our lives have just changed completely. everything that we had dreamed for him, is gone. i cant explain how it feels to be told something like this about your child. i feel broken. i know that so many people function and live normal lives with children who have Autism, i know about all the resources and who to go to and where to get help. and i know everyone will be so kind and offer advice or suggestions, and i appreciate it, but not now. i couldnt imagine you could feel this way. that mourning feeling. that feeling of absolute LOSS. i know it will go away but for now, that is all i can feel...NUMB & ROBBED.
I have been working with some incredible women compiling their "D-DAY" stories and asking them all the questions you sent me. My goal for this month is to help you open your eyes to how real Autism is and what Autism "looks like" in everyones homes.
If you have questions please feel free to comment below, or email me if you want to remain anonymous.