I asked my friend Jackie to share something this month for my This Is My Autism series. This is Part 1 of her beautiful contribution (read Part 2 here), and when I read it I cried. Because this is my story, from the little nagging fears when my son was little to hating the diagnosing doctor who refused to validate my anger and sadness. It might not be exactly the same, but this is every parent’s story. The stages that we go through as we find ways to help our children are similar to the stages of grief (again, not exactly the same, and varying by individual). It is not a fluid process – we move in and out of emotions. Autism is an emotional roller coaster! But while our kids are here with us, there is no ‘acceptance’ in the sense of moving on. We need to help them with a myriad of ever-changing issues. So, our final stage is ACTION!
Autism. I used to not be able to say this word out loud without my heart sinking just a little. It made me sad (still does sometimes) and angry (still does sometimes). You see I have a son with autism.
Worry and Denial
My son is a wonderful little boy who has enriched my life and made me a better person. It took me a while to get over his Autism diagnosis. Two years if you want me to be exact. Two years too long. In these two years I cried just about every day. Especially when I would see other kids his age. He looked like them but he didn’t act like them. He was 2.5 years old when he was officially diagnosed. I knew something was off when he was 12 months old. I would try to convince myself that he was a boy and developed later. We speak two languages at home so I would say, “kids that are bilingual take longer to talk.” This is true, but he was different.
My brain and my heart were in this constant battle. One was figuring out ways to excuse his slow development in speech and social interaction while the other one was telling me, “Wake up woman! Just admit it and take action!” So I did what any mother would do. I listened to both.
I set up an appointment with a developmental pediatrician and while I waited for that appointment (15 months!) I got him all the help I could find. Speech therapy and occupational therapy through early intervention. I read and read and read some more on this scary disorder. I joined online support groups. In these groups I met some amazing mothers. Some even reached out personally and I finally didn’t feel alone or lost. They are my angels. You see, my husband and I decided to keep our concerns about our son to ourselves. We were afraid to tell friends and family about it because we just didn’t want our little boy treated differently or maybe analyzed. This was fear talking and I know now that those fears would have never happened. So we relied on each other for support, but as a scared mom I needed more and found it in my autism virtual community.
Anger and Fear
D day finally came (diagnosis day). I was 8 months pregnant with my second child and the unemotional developmental pediatrician, who had only bothered to interact with him for 8 minutes, said “yes he has autism.” We already knew, but hearing those words felt like a death sentence. She literally got up and left the room as I remained there sobbing on my husbands shoulder. I hated that woman. Not because she told us what we were expecting but she did it in the most insensitive way. She brought us back some papers, said we were doing the right things already and sent us on our way. We decided to keep it to ourselves for a while longer. We just weren’t ready to tell others about it. Fear again talking. He was still little and maybe with enough therapy we could help him be as neurotypical as possible. “Neurotypical” is the politically correct word for “normal.” I just could not get past the “autism” word. I was stuck and scared.
Doubt and Anxiety
The next year and a half was so hard. I saw some improvement with therapy but not enough that would give me hope. You see, when you have a child with autism your biggest fear is the future. Not so much the near future but the distant future. Will he go to college or will he need to be cared for at home. Will he speak or will he be nonverbal forever. Oh my God will he ever call me “mom”!? Will he learn to point? Will he be potty trained? So much. Autism is a spectrum disorder. Hence the name autism spectrum disorder or ASD. A child with autism can be low on the spectrum (high functioning) meaning they can communicate and have some challenges but with time can usually overcome or deal with them and live a normal life. Being high on the spectrum (low functioning) is well, the opposite usually. They are usually nonverbal individuals and could possibly need care for the rest of their lives. It’s hard to define the autism spectrum. When you meet one person with autism you meet ONE person with autism. They are all different. ALL of them. They all have different challenges and strengths. Not one person with autism is the same. Please remember that.
Sadness and Self Pity
His 4th birthday came. I don’t even remember what we did that day. What I do remember is what happened that night. Everyone was asleep and I was in bed. I felt like a horrible mother and I felt like I wasn’t doing enough. I started crying into my pillow in anger and pain and fear. I felt sorry for myself and even worse, sorry for my son.
ACTION!
I don’t know what divine feeling came over me next. A voice inside me told me to literally shut the hell up and do something about it. A slap in the face. I was obviously feeling like I could do more so do it and stop feeling sorry for having such a wonderful little boy. Because he is wonderful and amazing and inspiring and happy and he brings joy to any life he touches, if I could put him on a pedestal I would! Sorry, proud mommy moment. He is just the most beautiful thing God has given me and I am so proud to be his mom. That was the last day I felt bad about myself, about my son, about using the “autism” word, and became a Warrior Mom. The changes that were to come could be described as some as a miracle from God. No more tears of sadness but many tears of joy have happened since.
April is Autism Awareness Month. Please become educated and educate others, because we live in a time where it is estimated that 1 out of 68 children in this country are diagnosed with Autism and the numbers are as high as 1 in 34 in some parts of the country. I think everyone knows a child or person with autism. If you don’t, the day you do smile and feel lucky because you have met a very special person.
Jackie is mom to Santiago, age 8, and Tatiana, age 6. She shares her autism experience to give hope to others. Jackie is a contributing writer for her town’s local magazine and writes about living a cleaner and healthier lifestyle. She owns Green Vida Co. in Bangor, Pennsylvania. As the mother of a son with Autism, Jackie recognized the positive effects a nutritional diet with real, quality ingredients had on his physical and behavioral health. Now, she shares her passion for wholesome food with her community through her business.
My autism journey has changed the way I live and care for my family. I am passionate about nontoxic products, natural remedies, grain-free nutrition, essential oils, and healing the symptoms known as autism. This is a space for anyone aspiring toward cleaner, healthier living.
XO Joanna
