A few weeks ago I wrote about Veda having autism for the first time publicly. It was somewhat nerve-wracking, not because I am ashamed by any means, but saying it out loud and publicly makes it more real. Being the mom of a child with autism can be challenging, but it also has been my greatest joy. Veda brings so much laughter and happiness to our home (as you will see below!). I have so many thoughts that I want to share, and many have asked about how I felt when she was diagnosed. Those are all feelings and experiences that I do want to share and will share. However, our journey with autism did not start 8 months ago. We knew the diagnosis in our hearts much sooner than we ever saw it on paper.
Veda Jane is our oldest. I feel that in a lot of ways our journey begins when she was four months old. I was doing my sister’s hair and makeup for her sweethearts dance at school and my mom and dad were loving on Veda, as per usual, when my mom appeared in the doorway with Veda looking concerned. She said, “I want you to watch Veda and tell me if you see her doing anything weird, I think she might be having seizures.” My heart sank and I knew that this was it.
In a way, I have always felt that I would have a child with special needs. You see, I grew up completely immersed in the special needs community. It was an absolute blessing and filled my life with compassion and light. My sister was born with a birth defect called spina bifida which left her in a wheelchair when I was 3 years old. My darling aunt had down syndrome. When I was 21 years old I lived in Ecuador and volunteered in orphanages, of which I spent the majority of my time in the special needs orphanage. Shortly after I was married, I had one of the most rewarding jobs working with a beautiful 13-year-old girl who also has special needs, and who to this day I adore and see often. I was and have always been a part of the community.
I remember checking Veda in at Primary Children’s Hospital, a place where I spent many hours growing up with my sister. We could not believe that we were there with our own daughter. It was such a vulnerable place to be in as a parent but I felt a sense of peace come over me. After a long 5 days in the hospital (thank goodness they have the best diet coke on the planet!), she was diagnosed with a seizure disorder.
From that point on, Veda was our quirky girl. That was honestly the best way to describe her! She was happy and giggly, and yet if you coughed or sneezed she was 100% pissed off at you. She would give the dirtiest looks and you always knew if she was not happy with you. Veda struggled meeting her milestones She sat on her own around 9 months, crawled at a year, and started walking well without help around 2 years old. We had her in early intervention from the time she was 18 months until she was 3 where she received speech, physical, and occupational therapy. Now she is in a special needs preschool. And oh how grateful we are for her therapists and teachers!!
Autism was always in the back of my mind. It seems like every few months Veda would have an especially hard few days and I would look up signs or symptoms of autism. Then she would start doing well, and I would put those thoughts away again. I remember praying with my husband when Veda was 18 months old, and knowing it in my heart even then. It’s funny how sometimes we set aside God’s will or reality when we have something else in mind.
I have received many questions about Veda and what she is like since my last post. I want to paint a picture for you of what autism looks like in our family, but it can change from day to day. The autism spectrum can be easiest to understand by thinking of the color spectrum. All colors are different, but they are all colors that have light and can be seen. No two colors are exactly alike, just like no two people with autism are alike. And for us, no two days are alike either. Some days Veda is magenta, some days she is chartreuse.
Veda loathes sneezing, coughing, and especially burping. If you have any of these bodily functions you might as well get out of town, or get used to the death stare. Other unexpected loud noises are not pleasant to her but those are the worst! This was also an issue when bringing home a crying newborn. She has been plotting Jude’s demise from day one, but now she only hates him 97% of the time so.. that’s progress right??
She loves to sing and is always singing the cutest made up songs, or word for word “Baby Got Back” which either makes us the coolest parents or the absolute worst. Or both. She also hates it if anyone else sings. Sometimes we will put her in her car seat and blast “Bohemian Rhapsody” or “Phantom of the Opera” and sing at the top of our lungs and she hates us for it. We have also gone about 2/4 birthdays with no birthday song because she can’t handle it.
Veda didn’t really start talking until she was about 3 years old. She started babbling mostly with her mouth closed, which we hoped was the beginning of her ventriloquism career. Her first word was “note” which she pointed to my harp music and said when she was about two and a half. She began saying things like “octopus”,”cylinder”, and “whale-shark” before she ever said “milk”, “help”, or “mama”. And that is how it has been ever since! Her vocabulary is vast and impressive, but she still struggles with expressing her needs, wants, or feelings.
Routine is life around here. Everything from the sequence of events that lead up to bedtime to the way that we exit grandma’s house (down the ramp, not the stairs). If we follow routine, we are able to avoid tears and meltdowns. Change can be really difficult for everyone involved. Sometimes taking her to the store or the movies is the absolute best! She is so much fun! Other times, it’s really difficult for her and a heartbreaking reality for us. We always want her to have new experiences so we try, but if you invite us somewhere and we decline, just know that it’s not you.
Veda is the cuddliest, sweetest girl around. This is something that honestly threw me off when we were thinking that she might have autism. In my mind, with my limited knowledge of autism at the time, I thought that most kids with autism didn’t like a whole lot of interaction. She does love her alone time, but also loves to be with us. While she isn’t really responsive when you talk to her, she is very responsive to touch. She is so quick to hug, snuggle, and give kisses. Even to smelly old men in Target. Which brings me to my next point….
Social cues. Veda has NO perception of what is socially normal. In a lot of ways I love that about her. She has been working really hard on initiating conversation at school, and she has absolutely no problem taking that to the streets. Or in our case the playground, where she will initiate a conversation with other 4 year olds literally 1 inch away from their face for about 20 minutes. HA! She loves touching faces, and is always petting the poor kid’s face next to her in sunday school. She has no stranger danger, which has led her to run away and hold random “papas” hands. (Papa: any old guy that looks like he might be her grandpa). Needless to say, the leash has become our best friend. We are those parents.
Veda will eat approximately 10 foods, all of which have to be of a specific shape and temperature. Not all noodles are created equally (didn’t you know?) and all food must be lukewarm, including juice.
She has an excellent memory, which is both amazing, and a total curse. For example:
Veda- “Mom, you are my dog and you want to play fetch.”
Me- “Ok babe, I will be your dog in ten minutes but first you need to eat lunch.”
Veda after ten minutes “Ok mom, it’s been ten minutes so.. go fetch!”
Also, we rented a castle bouncy house for her 3rd birthday and had it in my parents back yard. Every time we go to my parents she asks if she can go jump in the castle. She will be 5 in September. She can hum the tunes of most classical masterpieces including Bach, Mozart, and Handel after only hearing them once. I always love when we are out and about and she will have a full on adult conversation with a stranger who always compliments us on how well spoken and social she is. Then I giggle to myself because it was word for word memorized from a YouTube video that she watched approximately 536 times that morning.
When most people think of autism, things like hand flapping, toe walking, head banging, and poop smearing come to mind. We have had our fair share of all of these (yes, we have been potty training for a year… A YEAR people!!), and they are coping mechanisms. Imagine if you had feelings and could process things at a deeper level than everyone else and then had no way of expressing yourself? It would be pretty frustrating. Veda only has two main coping mechanisms right now, tantrums and pushing under her ears with her fingers. While I sometimes don’t understand why she does things the way she does, I do know that this helps her and I’m good with it.
Veda is OBSESSED with animals and pretends to be a dog 98% of the time. I’m sure you can only imagine what that has led to during our potty training adventures. She also is obsessed with doctors, which means I give roughly 200 check ups per day. We go through 1 box of band aids (or as Veda calls them, bandages) a week. I’m basically certified by now as both a veterinarian and family care practitioner. So… feel free to hit me up for your healthcare needs.
All in all, I love that girl more than I could ever express. I feel connected to her in a way that is indescribable. I remember going in for testing at some point after Veda was diagnosed with seizures. The doctor told me that if she wouldn’t hold still, they could actually test me instead. I was nursing at the time, and he said that a mother is bonded to her baby in every way. I still feel like that to this day. She is my greatest joy and I have learned patience and love because of her.
My greatest fear is that people won’t take the chance to know her because they are scared of the unknown of autism, or that she is a little quirky. If you have someone you love that is autistic, I’m sure you have had these feelings before. And if you aren’t personally connected to someone with autism, I challenge you to get out there and befriend someone who is. Or come over and meet my Veda. You will feel more joy, laugh more, and love more than you ever thought possible.