To the parents anxiously awaiting that first doctors appointment. Hoping, wishing, and praying that all those “idiosyncrsies” you see in your precious child, are just that, eccentric quirks. You’re longing to hear that everything will be fine – that it’s all in your head. That you’re just being overprotective, over reacting or jumping to conclusions.
I was you 365 days ago.
One year ago I sat in that sterile, white neurologists office regurgitating information about my son while he threw blocks, cars, and anything else he could get his hands on in the corner of the room.
One year ago I was told that my life was essentially over – while attempting to keep my composure, words I never thought would describe my life as a brand new mother were thrown my way – autism spectrum disorder, lifelong care, endless therapy, and thousands of dollars out of pocket. I sat there, attempting to take it all in – to absorb everything as I listened to a man who had just met my sweet son and I try and tell me that my son may never live alone and I may go broke attempting to care for him.
But today, today I’m drinking a glass of wine (or five) and skipping my evening workout. I’m going to sit in front of my TV and binge watch Chuggington on Netflix while I hold my precious little boy at my side.
Because we’ve survived.
We’ve survived one whole year of autism in our life.
If you would have asked me a year ago, I’m not sure I ever thought we would make it to the one year mark unscathed.
To you newly diagnosed parents, I know it might seem like theres a dark cloud following you around and although this is new territory you’re venturing into, if theres any advice I wish I received at the beginning of our diagnosis, it would be…
Google is NOT your friend. I repeat, Google is NOT your friend! The day my precious baby was diagnosed with autism, I immediately went home, locked myself away in my bedroom and googled. A plethora of information, most scary and worst case scenarios came up in my searches. It was information overload.
It’s okay to feel grief.
One of the hardest things about this autism journey is getting past the grief you feel and the expectations you previously held for your child’s future. It’s perfectly normal to feel a twinge of sadness as you see other children your child’s age jumping through hoops in terms of milestones, while your child is seemingly getting left behind. It’s okay to cry, it’s okay to take time for yourself. It’s okay if you don’t know what to do yet. It’s okay to search for what works best for your family. It’s okay to scream and lock yourself away for a little bit, because sometimes that is the only place where you can find solace, as long as you realize when it’s time to brush yourself off, get up and be an advocate for your child.
Not everyone you meet will be kind.
Not everyone you meet will be sympathetic. Not everyone you meet will understand the struggle of raising a limited verbal child. Not everyone will understand how hard it is to go out in public and not have an anxiety attack or cry an ocean of tears, right along with your child when they’re arching their back, hitting themselves compulsively in the face, and throwing everything off the grocery store shelves. When they struggle, you struggle. When they hurt, you hurt. When they feel overwhelmed with the world, you can’t help but feel the same. You wish more than anything that the world would just understand your child. The stares. The whispers. The unkind words. The looks of disgust. Try not to let them hurt you too much, although easier said than done. Not everyone knows, understands, or cares about your battle. Allow those unkind and challenging instances to give autism a voice and to educate those around you.
Everyone will all of a sudden become “autism experts.”
Many times when people think of autism, they immediately think of Rainman. Remember, every child with autism is unique. Post diagnosis, the floodgates of advice will open. Most mean well, but some don’t. You will be told that your child “looks normal”, you’ll be asked “if you’re sure.” You will most likely get the spiel that vaccinating your child caused it – or that if you would just give them this or that, your child will be cured. Your child will be compared to your uncles, brothers, sisters, cousins, friend with autism. Your journey may be vastly different from those around you. What worked for one person, may not work for someone else. Oh yeah, and Jenny McCarthy is not God.
Find your tribe.
You can’t do this journey alone. It’s just not possible. When the world feels like it’s spinning and you aren’t able to stand still, your tribe will be there to keep you grounded. They will understand the struggles, the meltdowns, the anger and grief, the feeling of being alone. Find them. Love them. Cry with them. Thank them for being so freaking awesome in your life. Seek out any and every avenue to meet others faced with the same journey.
Don’t discount those little milestones.
For us special needs parents, it’s the little milestones that many neurotypical parents take for granted that mean the most to us. I remember the joy I felt the first time my son looked at me when I called his name. Or the time he used sign language correctly, after 8 months of practice, to communicate his need of wanting more juice. I think we both jumped up and down like crazy people the day he pointed to the fridge and attempted to say the word “apple” – meaning he wanted applesauce. You will never take those seemingly small moments for granted – and you will feel on top of the world, each and every time they occur. So many times your child will surprise you and exceed and surpass your expectations.
I know it might seem as though you have a huge mountain to climb – and you’re afraid because you can’t see what’s on the other side, but I’m here to tell you that things WILL be okay. I was YOU one short year ago. I remember being devastated and terrified of this new life I was forced to live.
I won’t tell you that it’s been easy – there have been more days than I care to admit that I would want nothing more than to crawl into a hole and hide away from the world. There are more days than I care to admit that I wish and pray autism away. There are more days than I care to admit the defeat I feel for my child when I see how long it takes him to master a skill. There are more days than I care to admit where I feel sadness thinking of the struggles my child will face later in life. There are more days than I care to admit where I wish I could understand that little boy’s world. There are more days than I care to admit where I wish self-injurious behaviors, anger, anxiety, and aggression didn’t rule our life every second of every day.
Raising a child with special needs can be a tough pill to swallow. It alters your perspective on parenting and transforms you as a mother, whether you want it to or not. The days seemingly become longer and longer, and patience starts to run thinner and thinner. One year ago my world came crashing down around my feet.
But, over the past 12 months, we have been able to pick up those broken and shattered pieces of our life. We have been able to find some amazing therapy and a place that feels like home. A place that has allowed my child to thrive and progress, more than we ever imagined possible. We have pulled strength, courage, and determination from places we never knew or even realized exisisted, ESPECIALLY on those days where the weight of the world seems and feels like a never ending struggle. We have immersed ourselves in autism groups and become advocates for a child that doesn’t yet have a voice. But, don’t let that fool you, because even without words, this little boy is sharing his love of life with the world.
I feel hopeful and confident about our future. We have prevailed. We have overcome an abundant amount of roadblocks, many that I never imagined we would be able to maneuver through. I may not have all the answers yet and there may be more twists and turns on this adventure than I would like, but I realize our life isn’t over and that autism doesn’t mean a death sentence. That this is just the beginning of our new and beautiful life.
This Ausome™ article was originally published on Caitlin Cavallaro’s blog, “Life Through a Different Lens” and republished with permission. Please visit Caitlin’s website or like her Facebook page for more great words.