The Autism Spectrum is a scary thought. In fact, it was my greatest fear when I had my first son. (I don't know why. I didn't fear cancer or something terminal, but I was deathly afraid of this). I've read so many articles and blog posts from people who document their lives with someone on the spectrum. It doesn't matter what you read, or whether the author's situation is mild or severe, because at the beginning, you're certain that your situation is the worst case scenario.
I can only speak for myself, so for me, the scariest part was uncertainty of progress. My brain would go as far into the future as I could and think of everything wonderful my child wouldn't be able to do, all the things we would miss out on. It wasn't until a friend from high school, whom I had run into for the first time in 17 years, said something to me. When you're in the situation and waiting to see progress, or even a diagnosis, you can't help but wonder, "Why my kid? Why is this happening? Why can't everything just be normal?" She told me she did the same thing, and her husband said, "F--- it! This is OUR normal."
He was right, because what is normal anyway? One of my kids loves apples over cookies. That's our normal. One of my kids, I swear, said "hi" at four months old. That's our normal. One of my kids goes to speech therapy, and that's our normal. One of my kids made me have a meltdown at Wal-Mart because I was that crazy mom who couldn't control her kid in the store, and that's our normal. I love them all the same.
Here is my advice, and the advice I have heard so many times:
- FOLLOW YOUR GUT because she knows her stuff. Seriously.
- Also, despite my kids' pediatrician's advice NOT to research on the internet, I say DO IT. READ AS MUCH AS YOU CAN now, so that you know all of the options, possibilities, and resources available, with the knowledge that the spectrum is vast + wide but getting a medical diagnosis is only way to truly get peace of mind. (I swear!) I only advise you to read as much as you can with the caveat to avoid spiraling down that abyss of negativity. It's important to know what's out there, but remember that at the beginning it feels like you have hit rock bottom and that the world is crashing down around you.
- FIND YOUR TRIBE + BUILD IT. For me, it's easier to talk about it, even though I cry, because there's always someone who knows someone who can help or give advice. You need those people in your life to remind you that you're doing the right thing. If it weren't for my friends, none of which have children on the spectrum themselves, but have taught or coached someone on the spectrum, I would have waited. In the process of waiting, I would have done more harm to my child by remaining hesitant. (BTW, you can always email me or give me a call. I will tell you everything I know).
- REMEMBER THAT YOU ARE YOUR CHILD'S ADVOCATE. No one will advocate for your child better than you will. All the internet research, conversations with other parents, and degrees don't make you an expert in ASD. Sometimes I think that even the "experts" don't even know because each child on the spectrum is different. However, you are an expert in your child, so don't let anyone tell you they know him/her better than you do.
- KEEP AN OPEN MIND. Your situation is not preventable. You didn't do anything to cause it. You do, however, have the ability to help your child, so keeping an open mind will allow you to take action for your child's best interest. There's no judgment, I promise.
- EMBRACE IT AS YOUR NORMAL. I tell my husband all the time that my children chose me to be their mom for a reason. And if God blessed me with one who is not like everybody else, it's because that kid knew what a fighter I was, and I am my child's best opportunity for a great life. My child knew I would be the conduit to making sure my child does what God intended -- and that's to make a huge splash in this world. I just know it.
The way every child is different, every day is different, but that's parenthood. There are days that I cry my eyes out, and there are days that I say "It was a good day." There are days when I want to fire my entire family and escape the madness, but it does get easier. It gets better, I promise!
So there it is. That's our story. I have to admit, it's time-consuming and stressful at times, but the progress we have seen in just a year is amazing. I'm so lucky because it could be a lot worse. We are very lucky that progress is visible in his behavior and communication. We are so lucky that he's responding well to therapy. We are so lucky to have such a wonderful support system and amazing therapists, case workers and teachers. Thank you for being on the journey with us.
I guess the whole point in my sharing this, and I suppose my "mission" on this "autism journey" is to spread the word that it is okay to be scared, but you cannot let the fear deter you from your path of helping your child and being his/her advocate. Fear is not an option.