I've learned a lot from my son. I know just about everything you would ever need to know about elephants, and could name more major league baseball players than most moms. And aside from that, I've learned a lot about Autism.
Throw any Autism acronym at me and I could tell you what it stands for. If Autism is old hat to you, you too know the lingo. If you're new to it, you will soon learn what ABA and SPD stand for, plus a laundry list more. I've read all the books. I've heard all the theories on what causes Autism, and shuffled through them throwing most to the side.
But most importantly, I've learned a lot about myself and life in general because of Autism. With today being World Autism Awareness Day, I thought I would share what Autism and my son have taught me.
1. Patience! I learned this one right away. Parenting in general helps teach patience, but parenting a child with Autism tests your patience at a whole new level. Not that I am perfect at it, because I do have my moments. Mornings are particularly hard when we are trying to get out the door and Jacob decides to watch one more baseball video rather than get his shoes on.
2. Not to judge others: I admit, before Jacob was born, I was pretty quick to judge other people. I'm sure I looked at the parents of kids who were acting up wondering why they couldn't control their children. You know how people without kids of their own always think they have all the parenting answers. Now when I see a child having a meltdown or a mother who looks like her patience is being tried, I don't give them a disapproving look. Instead I smile, because I have no idea what struggles they are battling.
3. To stand up for what is best for my son: Typically I am a pretty quiet person. I follow the rules and keep my mouth shut. But I have learned pretty quickly that if I am not speaking up for my son, no one is. I am his advocate. I am his voice. And I will make sure he has what he needs to succeed.
4. Times when I feel the most broken, are actually times when I am my strongest: I have my moments where I just lose it, when I feel like the worst mom ever. There are times when I feel I can barely keep going. But when I look back at those moments after the fact, I realize how defining they were, and how strong I actually was even if I didn't feel that way.
5. Recognize and appreciate the small things: When you are a parent of a child with Autism, you really view each day differently. I don't need anyone telling me "enjoy each moment" or "someday you will miss those days". As a parent of a child with Autism, I very much live IN THE MOMENT. I don't know what the future holds for my son. We live in a very narrow moment enjoying every small detail. Typical behavior that goes unrecognized by parents of neuro-typical kids, can bring a tear to my eye. My son put his socks on without asking for help. He attempted to go to Sunday School with his peers, even if it lasted all of a few minutes. Jacob dried off on his own after a shower. He had a friend over and actually PLAYED with them. He asked about me, about my day. He didn't play baseball in the store. He wiped his own bottom. He actually WANTED to play in the snow and even suggested going down on a sled. He's learned to use a scooter, zip his coat, unwrap a tootsie roll, turn his sweatshirt right side out. You get the idea. Things that to others are automatic and never acknowledged, do not go unseen here. There is joy everyday in our house in the small things, and we take things one day at a time.
6. Savor every moment: This kind of goes with appreciating the small things in life. Every "I love you", every snuggle, every small connection with your child means so much when they come so infrequently. Don't get me wrong, Jacob is a loving child. He'll ask to snuggle or cuddle in bed. He kisses us goodnight as we tuck him in bed. But finding a deep connection with him at times is difficult, at least more difficult than with our 2 year old who daily gives me affirmations of her love.
7. Pay attention to my own social skills and body language: I feel like I am pretty much an expert at social skills. When you are constantly reminding another human being about their actions, you become hyper aware of your own.
8. Sometimes people are cruel, but most times not: When I am meeting someone for the first time, I try to always slip into the conversation that my son has Autism. I do this for a few reasons. The first to spread awareness and just open up that dialog. The more it is out there and people understand, the less hurdles my son will have as he gets older. It is always interesting to me how people respond. Some truly don't know much, especially when I say "Aspergers". And for others it seems that somehow Autism is connected to their life as well. The second reason I tell people is so they understand my son. Looking at Jacob and even talking to Jacob, you wouldn't really suspect that he had Aspergers. More often than not, when I tell people and they have met Jacob, they respond by saying they would have never guessed. It's not that I am telling them as an excuse for any of Jacob's potentially odd or excited behavior, but for understanding. I have found when people know the whys behind Jacob's behavior, they are less likely to be judgmental and pass it off as bad parenting, and instead are accepting. Sure the occasional stranger has been known to be cruel and rude when Jacob is acting up, and be assured that I let them know why! And of course kids always can be hurtful to anyone that is different. But for the most part, people are receptive to Jacob when they have an understanding.
9. Labels don't have to be a bad thing: For many years I was scared of my son being labeled. That fear kept us from getting him diagnosed at an even earlier age. Getting that diagnosis and official "Aspergers" label was the best thing we ever did. It felt like the tables were turned from that moment on, as if we now held the power to control Jacob's future. He was being labeled anyway whether I knew it or not, but by having him diagnosed, it just gave him the right one.
10. Eye contact isn't that important: It really is overrated. I have learned that Jacob actually hears me better when he isn't looking right at me. But I still catch myself on occasion saying "Jacob, look at me" when I want his attention.
11. It's ok to not know why: This one took a while. For the longest time I was obsessed with knowing "why" Jacob had Autism/Aspergers. What caused it? I read all the theories, which most I dismissed. It always went back to guilt and feelings of somehow I caused this or didn't do the right thing to prevent it. I've learned it really doesn't matter what caused Jacob's Autism. Looking at the "why" means looking backwards, and looking backwards isn't going to help Jacob. So I try to focus more on the present and staying positive for the future, and no more self blame.
12. Embrace my child for who he is, not for what I thought or dreamed he would be: Every parent has dreams for their child. Many times those dreams come before they are even born. I know mine did. You have visions of what your child will be like and your life with them. No parent's dreams include Autism. And again, this is a hard one for me. My husband and I both struggle with this from time to time.
13. Unconditional love exists: Even in those worst moments when Jacob is lashing out, hitting, screaming, and melting down, I am aware of how much I love my son. Sure those times are frustrating and hurtful, but it's in those moments when I feel my heart crushing inside. When I know I would do anything to take away my child's struggles. It's in those hard moments when I know what true unconditional love is.
14. To find potential sources of sensory overload in every situation: The way I view the world is completely different now that I know what could set Jacob off. When he was little, we would cart him off to carnivals, parades, restaurants, even Walmart, without a clue as to why he would cry and scream. Too loud, too crowded, too bright, too exciting, it can all be too much! It's not that we don't do those things today, we are just more prepared, and make sure Jacob knows what is expected and what will be happening next. Surprises and Autism are not a good combination.
15. Life goes on: Autism is everyday. But so is laundry, and making dinner, and errands, and appointments, and school, and work, and you get the idea. More than anything, Autism is not the end of the world. There is still love. There is still laughter. And there is still life with Autism.
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