To the parents anxiously awaiting that first doctor’s appointment, hoping all those “idiosyncrsies” you see in your precious child, are just that. You’re longing to hear that everything will be fine — that it’s all in your head. That you’re just being overprotective, overreacting or jumping to conclusions.
I was you 365 days ago.
One year ago, I sat in that sterile neurologist’s 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, 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 as I listened to a man, who had just met my sweet son, tell me these things.
But today, I’m drinking a glass of wine and skipping my evening workout. I’m going to sit in front of my TV and “Chuggington” on Netflix while I hold my precious little boy at my side. Because we’ve survived. 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 parents whose children have just received a diagnosis — although this is new territory you’re venturing into, if there’s any advice I wish I received at the beginning, it would be…
Don’t Google. 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 came up in my searches. It was information overload.
It’s OK to feel sad at times. One of the hardest things about this autism journey is getting past the sadness you may feel and the expectations you previously held for your child’s future. It’s OK to feel a twinge of sadness as you see other children your child’s age jumping through hoops in terms of milestones. It’s OK to cry, it’s OK to take time for yourself. It’s OK if you don’t know what to do yet. It’s OK to search for what works best for your family. It’s OK to spend some time by yourself for a little bit, because sometimes that is what you need to 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 challenges that can come with raising a child who has limited verbal skills. Not everyone will understand how hard it is to go out in public and not have an anxiety attack or cry right along with your child when they’re having a meltdown. 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. Try not to let them hurt you too much, although easier said than done. Not everyone knows, understands, or cares about your experiences. Use those unkind and challenging instances to educate those around you.
Some people will all of a sudden become “autism experts.” Post-diagnosis, the floodgates of advice will open. Most mean well, but some don’t. You may be told 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 uncles, brothers, sisters, cousins, friends with autism. Your journey may be vastly different from those around you. What worked for one person may not work for someone else. Remember, every child with autism is unique.
Find your tribe. 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 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 any milestones. 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 eight months of practice, to communicate his need of wanting more juice. I think we both jumped up and down 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 OK. I was you one short year ago. I remember being devastated and terrified of this new life. I won’t tell you it’s been easy. There are more days than I care to admit when I feel sadness thinking of the challenges my child may face later in life. There are more days than I care to admit when I wish I could understand that little boy’s world.
But over the past 12 months, 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 existed on days that were especially challenging. We have immersed ourselves in autism groups and become advocates for a child who is still learning to communicate. 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. 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. This is just the beginning of our new and beautiful life.
Follow this journey on Life Through A Different Lens.
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