From the moment I saw those two, little pink lines and knew that I was finally pregnant, my whole world felt different. I felt like I was living an out of body experience. Everything felt different, tasted different-even the air seemed to smell different. Some parts of my life started to matter so much more, and some started to matter so much less.
(Andrew at 5 months old)
The hustle and bustle of pregnancy seemed to accelerate that 10 months until I found myself ready to deliver my sweet, baby boy and meet him for the first time. There are so many magical moments from that first meeting to the first smile and the first steps. You hang on to these milestones and mentally check them off as they come. At 12 months old, my son, Andrew, was plugging right along with all of those "uber-important" and extremely “time-sensitive” (sensing some sarcasm?) milestones- that is until it came time for those first words to arrive. 12 months, 18 months, 24 months….the words never came. I simply had no idea what was on the horizon for our lives. I was living in a blissful state of being a stay at home mom with morning strolls through Target and splash-pad play dates. The simplicity of life as a new mom would soon change forever.
(Andrew at age 2.5)
I’m sure you’re wondering if the M-CHAT(that standard checklist we ALL have to fill out at the 18th month Peds appointment) showed a risk for Autism. His pediatrician said he did not appear to fit the markers for Autism. At that point, the “A” word had not even crossed my mind. The conversation continued and along came the old, “well, let’s just wait and see about the late talking,” and “boys always talk later,” or “he will talk when he is ready.” I continued to reassure myself with these well-meaning albeit unhelpful pieces of advice. A few months after that visit, there was a specific night at home with my husband that was the beginning of my understanding that something with Andrew was not “typical.” (You will see me use the words “typical,” “wrong with" and “normal” throughout my posts, but please know that I am certainly in the camp that there is no actual definition of “normal,” “wrong with” is a
backwards statement, and the word “typical” is a façade).
Back to that night…My husband, Zak, was trying to get Andrew’s attention by calling his name repeatedly. This same exact scenario replayed in our house for months prior to this night. Zak finally turned to me and said with a gentle but concerned tone, “Do you think he could be partially deaf?” From that night on, I was on a mission. A mission for answers, a mission for clarity, and a mission to quell the constant feeling of anxiety of the unknown that hammered away at my heart everyday.
After jumping through some hoops and phone calls, the day finally came for our first meeting with Babynet. I truly thought we would be going for a speech evaluation, and they would tell me that Andrew had a speech delay, give me some pointers on how to help him at home, and we would be on our merry way to have a birthday lunch with my husband. July 12, 2017 is a day that will live in my mind and my heart for the rest of my life. I cannot tell you what I wore under my gown at my college graduation, but I can tell you what I was wearing that day. I can tell you what Andrew was wearing. I actually had the very ignorant thought that if Andrew and I looked presentable and competent that no one could even consider something serious was “wrong with” my child. How ridiculous of a thought! I was clearly pulling at straws to save the life I thought I might be losing. During that visit, Mrs. Pat, the Babynet intake coordinator, played with Andrew and took notes along the way. I sat in a chair with a terrified smile plastered on my face. About halfway through the visit and amid our conversation, Pat simply stated, “Have you ever considered the possibility of Autism? Andrew seems to be exhibiting a lot of the red flags we see in children at this age that are at risk for Autism.” Up until that very second, I truly had not. At that moment, for the second time in my life as a new mom, I began to feel like I was living outside of my body. I felt like I was literally standing across the room and watching myself sit in that chair, in that striped sundress, and be given the news that my angelic, perfect son may have autism. Of course, this was not the time of our official diagnosis, but it was the very moment that my inner strength that I had always prided myself on began to crumble.
Throughout the next few weeks, I felt like a shell of a person. I went through every range of every emotion and back again. I cried, I screamed, I cursed God, and I felt lost. I felt like somehow every dream that I had for my future and more importantly, my son’s future, were all of the sudden out of reach. I spent those weeks wallowing in tears curled up on the couch and going down the rabbit hole of Google searches into the wee hours of the morning. I tried online support groups of moms I thought would help me find my way, but I was disappointed to find that those moms only wanted to make me feel like a horrible, shameful person for feeling these negative feelings about my child’s possible diagnosis. I had no one who really knew how I felt. My husband was trying his best to support me, while also picking up my parenting/simply functioning slack. My parents were telling me that my son was “perfect just the way he is,” which in turn, triggered another emotion of total guilt that I could even feel so negatively about my child. Everyone was trying to say and do the right thing to help me crawl out of this grief, but I needed that time. I needed that time to FEEL sad. I needed to be MAD. I needed to question the experts. I needed to scream into my pillow. I needed to move past the guilt of even having these feelings.
The next few months were an endless hamster wheel of paperwork, setting up doctor’s appointments, and starting the process of early intervention. Those mornings of sipping Starbucks as we perused Target turned into speech therapy appointments and the play dates turned into visits with our early interventionist. Once, I came up for air, I jumped, NO make that DOVE, into finding any and every way I could help my son. Every day I grew a little less sad and a bit more determined. Andrew was officially diagnosed with Autism at the age of 2 and a half. By that time, I had already begun to move away from the label and to move toward the long run. I knew that if I took all of that energy I was using on grief and channeled it into perseverance that Andrew and I would be unstoppable.
(Andrew at age 6)
Here we are today. Andrew is seven and is literally the raddest kid I know. He loves everyone he meets and has so many sweet friends. He wakes up each day with an unbelievable amount of genuine happiness simply to be living a brand, new day and goes throughout his day determined to live his best life. Once Andrew’s words came(around 3 and 1/2), they seemed to never stop. His vocabulary is expansive and impressive. He studies new ideas and topics with a passion like no other I’ve ever seen. He is in a regular education, first grade classroom with the same level of support as of all of his classmates. He is functioning above average academically and continues to amaze us in his progress in the social realm of life. He plays rec baseball and is beginning piano lessons soon.
(Andrew at age 7 with his little brother, Davis)
Was it an easy road to get here? NOT A CHANCE! Do we both still have a lot to learn and do we still have hard days? YOU KNOW IT!
Here’s what I can tell you though-if you are in a place of grief, if you are still curled up crying on that couch, if you haven’t gotten past the label and onto the long run, THAT IS 100% OK! You need to feel every emotion you have about a diagnosis-not matter what that diagnosis is. You need time to process this life-altering information and yes, even time, to grieve. I will also tell you this-you WILL get through the darkness and you will find the light-and-That light is so, so bright. It brings a level of love and understanding for your child that is unexplainable. It won’t happen in an instant, but over time your obstacles will be your drive. You will find that inner strength again and when you do, watch out world! You’ve got this and I’m here to help you!
My next post will detail the steps through the Babynet process to begin intervention and seek a possible diagnosis. There are a ton of websites out there that give you all of the information but my goal is to approach what I tell you with a level of real, lived experience-What to expect, what to know, what are the next steps. In the meantime, please consider joining our Facebook support group- Family Support Matters powered by CTS4K. You are also always welcome to email me at firstname.lastname@example.org. I’m here to support you in any and every way I can! If I don’t have the answer, I will do everything in my power to help you find it!