My Advice After ‘Labeling Day’
October 4th 2017. A day I will never forget. One filled with such mixed emotions… dread and anticipation.
I remember sitting in the waiting room of the neurodevelopment center, watching my two year old, Brayden, play with a child life specialist. I was exactly one month postpartum from having my second son, so my hormones (and emotions) were wild. I remember looking at my happy, beautiful toddler, knowing this was the last time he was “Brayden, who has a speech delay”. I knew when we left this appointment he would be “Brayden, who has autism”.
I knew Brayden had autism for a long time. I truly believe “mommy gut” is real, (it helps I work in health care) but I knew In my heart Brayden had autism from the time he was just a few months old. I can’t pinpoint specific things he did or didn’t do that was abnormal, but I just knew. I remember asking his pediatrician at his 3 month appointment if babies this age could be shy… I think he thought I was one of those “crazy first time moms”.
I had pushed for this appointment. Everyone… (doctors, speech therapists, child development specialists, family, friends, people who have family members with autism) told me Brayden “absolutely” did not have autism. I heard “He makes great eye contact”, “He loves people”, “He’s always smiling and laughing”. As if no child with autism has any of those strengths…But, I knew- so I asked he be referred to a developmental pediatrician for an evaluation. So: here we were.
After answering 45 minutes of questions..We watch the development pediatrician try to interact with Brayden. He repeatedly crawls into and out of the same chair, all smiles, filled with pride. He “performed” as we thought he would- imitating nothing, and not engaging in reciprocal play. She leaves the room to discuss with her attending and about 30 minutes later they come back. “Your son displays behavior consistent with autism”.
My son had a label. “Brayden has Autism”.
Once we were back in the car to drive home, nausea took over, and all I could do was cry. I didn’t know what to expect. It felt like nothing had changed, yet everything had changed at the same time.
Fast forward to today, 5 months later. I am by no means an “expert” when it comes to autism, but I am able to give some advice:
- First…breathe. It’ll be okay. I remember telling one of my closest friends who lives 3000 miles away, and immediately she responded “it’s just a label, he’s still the same beautiful toddler he’s always been”. She was right- it was just a label- he’s still beautiful, sweet, goofy little Brayden. This label just helps us get him the therapy that he needs to succeed.
- You know your child best. There will be a lot of different opinions on therapies, activities, research studies, medical treatments. Do your research.
- Be prepared to advocate. Almost immediately we were in disagreement with our insurance company who was denying his ABA therapy, stating it was “not medically indicated”. Don’t give up.
- Autism is more common than you think. I’m willing to bet you know at least a few people who have a family member with autism. If I had a dollar for every acquaintance who reached out to me after I announced on social media Brayden had autism, stating they are concerned their child does too.. I could at least buy a foot long from Subway.
- Celebrate every milestone. First time Brayden gave a high five was a big deal in our house!
Early intervention helps so much! Brayden started therapy a month after diagnosis in an amazing autism center. He makes progress every day. Even though it’s been such a short time, we feel the staff truly care about him. Find these people. There are amazing people out there who are dedicated to helping your child reach their maximum potential.. you just have to find them. It will be okay.
Written by, Lauren Burke
Lauren is a wife, full time working mom and mother of two boys, 2.5 year old Brayden, and 6 month old Logan.
Finding Cooper’s Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you’re never alone in the struggles you face. And once you find your people, your allies, your village….all the challenges and struggles will seem just a little bit easier. Welcome to our journey. You can also follow us on Facebook and subscribe to our newsletter.
