There are times in our little autism world that sting more than others. Most days I have been celebrating all dylan is learning and doing. Other days what we lost hits me. I knew there would come a time that dylans little sister Callie would surpass him in milestones. I thought I was prepared for it. Callie has been ahead of the curve with most milestones. She smiled sooner than she should have, she held her head up basically out of the womb, she started babbling before I was ready. She has been an absolute joy to watch. But with that joy also comes a bit of sting for her brother. Now that I have a neuro-typical child I quickly realized how easily these milestones should come. For most babies they just happen. With dylan they were all a little delayed. But he would eventually hit them and I would sigh with a sense of relief. This has been happening for his whole life. I feel like I have been holding my breath his his whole life. I am still holding my breath waiting for him to communicate. Just to tell me his belly hurts, or he is thirsty, or he needs to potty. Simple things that not many parents think twice about. So when callie started using her voice I was so proud of her. I honestly was not thinking about how dylan could not do these things. It wasnt until Callies 15month check up. I am not sure why this check up hit me so hard. I think it is because I can still remember sitting in the same doctors office with my boy at his 15month check up and I was riddled with worry. They suggested a second opinion at his 15month checkup. It began my journey with therapies, and doctors, and services and a life I just did not envision for my boy. When the doctor asked is callie saying up to 6 words? Is she walking independently, is she pointing to body parts, is she helping put on her clothes? I was able to say yes to every single question. I didnt have to hesistate and think about it. My sweet girl is doing exactly what she is “supposed” to be doing. However, my boy still has not reached 6 words, he only points to one body part so far, he just now learned to take his socks off. I let that hit me for a day. I let myself be sad about it for a day. Because, I am his mother and it is okay to be sad about this. But through this journey I am slowly realizing I cant stay in that grief. It will swallow me whole. I realize that these milestones are not who my sweet boy is. Dylan is teaching more about myself and life than all my years and experiences combined. He and his sister are my journey. They have brought so much meaning to my life. So much love and quickly are showing me what is important and what inst. So, I allow myself to be sad for that day but the next day I get to wake up and see my boys smiling face. I get to celebrate that he took his shoes and socks off, I get to celebrate that he is pointing again, clapping, and finding joy in the wind. These are all worthwhile. My journey is different than most. Hopefully dylan can teach my friends and family to celebrate these things as well. Hopefully they will see him for all that he can do and not what he cant. As a mother, isnt that all we want for any of our children that they are accepted for who they are? It starts with me. I am dylans voice and his biggest advocate. I will choose to find joy in all that he is.
All the feelings this birthday. Three to some people may not be a “big” birthday. But for my little man it is huge. I dwell on the ups and downs of our journey. The unspoken words but man has he come such a long way. Dylan is so smart and so funny. He loves people. You just may have to work for it. He gives the best hugs and kisses and has THE most infectious smile. I created a little slideshow of my boy for his birthday. Its so fun watching how much he has grown. This boy has changed my heart. He has opened it up to so much so many things that I never before could have imagined. The song I picked for his slideshow is a song that has been in my head since his diagnosis. It seems fitting. We tried so hard to have him. Seems like I have loved him far before he was ever born or even living inside my belly. I really am so thankful God chose me to be his momma. I know his daddy feels the same. Hope you enjoy the slideshow!
You will be three years old very soon. I cant believe that. It seems like only yesterday that we were worried we would never even have a child. After three long years of trying, we conceived you! We could not have been more excited to welcome you! The overwhelming love I had for you when you were born was palpable. It was like a ton of bricks and I felt instantly connected to you. You cried when you were born but the moment you were laid on my chest I looked at you and said “hey baby” and you instantly looked up at me and stopped crying. In that moment no one else was in the room. Just us. I will cherish that moment until my death. That moment could carry me the rest of my life. Thank you my boy.
I believe God gave me that sweet moment because he knew I would reflect on it in our hard times. To say this year has been a hard one would be an understatement. SO much has changed in your little world and that moment with you has carried me through this entire year. From me losing my job (while pregnant with baby sister) and having to remove you from your safe, loving, constant daycare family, to your daddy changing jobs, to you gaining a sibling and lastly a room of professionals watching your every move and giving you a diagnosis of Autism. This would all be a lot for any single person but my boy you took it in stride.
Many people have told me that birthdays are hard as a special needs parent. This is your first birthday with a known diagnosis. I would say so far they are right. I think back to my dreams for you when you were a tiny human growing inside me. I have been thinking back to a year ago when you could say ” TWO!” . You lost that word along with a few others. I lost those dreams, I lost those hopes. I just remember thinking how exciting it was that you were talking. Here I am at age three and I am just praying for your words to make a come back. I am coming to the realization that I may not have “typical” experiences with you. I am learning to relish in what is you. Who you are. What makes you happy. I had dreamed of large parties with all our family and friends and maybe some kids from your daycare to come celebrate with us. One thing you don’t care for is crowds. So we scale back on your birthday. That is perfect for you. Perfect for me. You are not into characters or specific toys. Your love for simple yoga ball, trampoline, pasta, or outdoor time is what makes you happy. So my boy that is what you will get.
This past year has been just excruciating, humbling, and also so so rewarding. I no longer look at the world the same. I do not see people in the same light.So, Dylan on your third birthday I want you to know that while your parents are constantly trying to give you the world you have already given us the world and then some. You continue to give people gifts everywhere you go. With your love for life, hugs and kisses, and simple things like your love of the wind in your face. You are a breath of fresh air when life seems confusing and hard. This year will be the best one yet! Happy Birthday my sweet sweet baby boy.
One month. It has been exactly one month since they labeled my sweet beautiful baby boy as Autistic. One month of grieving, one month of anxiety, one month of fear, one month of anger, one month of tears, one month of self loathing and one long month of all those feelings for my son. It has also been a month of acceptance, of feeling so much love, support, and learning that life is just going to move on. I woke up one morning and realized guess who isnt feeling these emotions. My baby. My Dylan isn’t feeling these things. It was reserved for just me and his daddy. He was going about his life laughing, learning and just being dylan. I realize I have to keep doing what I have been doing for him. I have to keep fighting for him. He needs me to be present. That is where I am most days. Most days I am present and fighting and researching and doing things. But then there are the dark days when I let myself feel everything. Will I ever hear the sweet words “mama” again? Will he ever play ball, go to college, have a wife. I self destruct. This is not something that I will just “get over” ever. I will live with these fears forever I suppose. This is not the type of parenting my husband and I envisioned for ourselves and certainly not the life we envisioned for our son. This is hard. This is real. This is beautifully painful. His sister will be 6 months old very soon. She is leaps and bounds ahead of the curve with development compared to Dylan at that age. That simultaneously brings me so much joy and also so much sadness. I know that Callie will be playing the big sister role before I know it and that just breaks me. This is how I feel on the hard days. But most days I relish in my sons wins, in his gains, in his learning new sounds, in new skills. In this past month I have realized that while I may be waiting on my son to say “wuv you momma” I know he already does. I see it in the way he gives me unexpected hugs, or kisses. I see it in his laughter when I play with him. I see it in the way he runs to his daddy when he comes home from work. I see it in his eyes. He loves us. I have learned that love is not always a spoken word. It is so much more. I see it all around me. I see it in our support system. We are so blessed with our family and friends that love our babies and love us and want to understand more and who have offered help, a kind word or just a hug. This is love. This is autism. This is our new life.
I started this blog about a month before getting the diagnosis. I have a few posts that I have kept private. This has been cathartic for me. I am opening this one up to the public because I want people to understand our story now. I want people to not feel sorry for us but know and understand our baby and so if maybe by some small chance I help another mamma, daddy, grandparent, or caregiver in our shoes. So many others have come before me and I have read their stories and I get it. I hope that I can be that for someone else. But mostly I hope to break the stigma or fear some may have with this diagnosis. This blog entry is just a small snippet of my life. PM me if you have questions about our journey. I want to educate people on what I have learned and am learning and would love to learn more from those that have done this before.