I just had a conversation with another mom of a child that was recently diagnosed with Autism and she asked me, “How do you have such a great outlook on it all?”, as she held back tears. My response to her was quick because I wanted her to get that idea that I had it all together completely out of her head! I remember being where she was. I needed her to know the truth and where I was 4 years ago when I received my son’s Autism diagnosis. I needed her to know it was not even close to where I am now. So my honest answer was, “Oh Dear Lord, you have no idea what I went through to get to this point. I still have those days, where I just want to bury my head under the blankets and hide from the world because I just don’t want to participate in life some days. And that’s ok, because I’m human and I know how far I’ve come.”
When my son was finally diagnosed, after what felt like an eternity of Doctor’s appointments and assessments, I couldn’t even say the word “Autism”. I couldn’t say it, couldn’t type it, couldn’t hear it, and couldn’t even read it. If I had to discuss it, I would say, the “A” word. I remember when I had to sign off on paperwork for my son’s IEP acknowledging his diagnosis, I couldn’t even do that. My hand shook and the pen just wouldn’t reach the paper. The only thing that hit the paper were the tears streaming down my face. I think the administrator felt so bad that they just told me to take my time and that I could bring it to them when I was able to. Some may interpret that as embarrassment, but I assure you, it was not. I know it was because of the label. I was terrified of what it all meant for him and his future. The diagnosis doesn’t come with a whole lot of encouragement but rather comes with a lot of “I don’t know’s”, “We can’t predict the future.” or my all-time favorite, “I don’t want to give you false-hope.” Because of all of this, the label drove me insane. Not to mention, the ignorance that I had already seen around it, which caused me to be afraid to talk about it. I fell into a deep depression for a little bit and that was a tough place to be with a newborn in the house and my newly diagnosed son. They both REALLY needed me, and I didn’t know how to leave the house.
I remember the day I woke up and decided my outlook needed to change. I had woken up in the middle of the night and went downstairs to just cry in peace. I proceeded to have a complete meltdown and begged God to give me some strength because I didn’t even know where to begin to be what and who I needed to be for my children. I felt like I had so much to get over because I was angry at so many unfortunate things in life that had already occurred to that point, and then now I had to figure out how to be strong and positive for this when I was still trying to get over everything before this new development. I would say I cried for about 2 hours straight. When I thought I was done, I would start wailing again. I actually didn’t even know where it was coming from! But then suddenly I stopped. I started talking and just giving myself a much needed pep talk in the middle of my living room all alone.
I told myself my children are watching me. They are always looking at me to see how I handle life and everything that will get thrown my way. If I believe something can’t be done, then they will believe that. If I believe in limits, then they will believe in limits. If I allow someone to destroy my faith and positivity, they will learn to do the same. If I don’t smile and enjoy life through the dark moments, then they will miss the beauty in every day, even the tough ones. If I give up, so will they. If I say it’s not possible, they will believe me. If I am scared and don’t face fear in the face, they will back down at every challenge they are faced with. If I give so much emphasis on a label, they will, too. I told myself to “Suck it up, Buttercup!”. Life is tough. Your child is the same beautiful, happy, funny, amazing boy you were head over heels in love with before he received a diagnosis. Maybe you didn’t like the way those doctors tried to completely discourage you or gave you little hope, but you don’t have to believe in anything they say. You are his mother. Believe in your son. Believe in your daughter. Believe that anything can be achieved if you believe and work hard. Believe in love and all that it can do.
I passed out on the couch and woke up a few hours later to my children that had risen with the sun. I got up and got to my day. That’s the day I woke up with a new and different outlook because I finally realized they were watching me and will always be. I made a list of all the things I was finally going to do to show them we don’t back down from challenges, and we go for what we want no matter what we’re up against. I committed to being stronger and a better role model for them. In turn, it helped me become a better person. I always thought I’d be their teacher, but somehow I feel as if my children have taught me so much more.
I share this for everyone who is where I was 4 years ago. I’m not saying that I never have those moments any longer where I get angry when I see him struggle, or that I don’t cry when he’s breaking down over a haircut, because sometimes it’s just tough. Cry if you need to. You can mourn that picture in your head because you are human. But please know this, you know your child better than anyone on this planet. Believe in love and hard work. Believe in your child. And remember…they are always watching. Never, never give up.