When we first told A about E’s autism diagnosis and what that all entailed, we tried to focus on the good. What made him special. What his strengths and weaknesses vs. her strengths and weaknesses are. So it was kind of cute when she started referring to it as “optism or optimism”. E would be melting down somewhere and she would say, “That’s my brother, he’s just two. He has optimism.”

I went to an Autism Conference last month and one of the speakers there, Autism Daddy*, did a presentation on Autism Perks. It got me thinking to what my Autism Perks are. It’s so easy and completely understandable to get caught up in the negative. Sometimes focusing on the perks give you a little boost. Seeing the good in a hard situation.

1. Behavioral Experts on speed dial. When I had A, I was at a loss of what to do most of the time. I wanted a handbook on her. How do I change her awake times from night to day? What behaviors should I let go and what behaviors should I worry about? How do I get her to eat this food? There were so many questions, and people would tell me, kids don’t come with a handbook. You have to figure them out through trial and error. Hundreds of dollars of Amazon Books later, I have her about halfway figured out. With E though, I do have a handbook. Well, not an actual handbook, but something even better.  A whole team of experts at my disposal. Yesterday I had an appointment with his Developmental Specialist, and we trouble shot his sleep issues. By the end of the appointment, we had some good ideas worked out and we tackled some of his self-harm issues. I’ll put them into play to see if they work, and if they don’t I’ll text her or see her again next week. I literally have five people with masters degrees helping me figure out E. It’s awesome. Also, equally awesome that they get just as excited about his milestones as I do. When I’m in tears over something amazing he has done, they are too. It really does take a village, and I’m so happy to have them at my fingertips at all times.

2. You know the Cheers theme song? “Sometimes you wanna go where everybody knows your name” Well, that’s another perk. Everywhere I go, people remember and know my name. We stick out thanks to E’s fun outbursts. They’re not always him screaming, just things that draw attention. Today he grabbed my wallet out of my hand and threw it to the back of the line when I was paying for food at a restaurant. People are nice though. They all know me and E and A. I live in a city, but I get to enjoy a small town feel. Costco, Once Upon A Child, Kroger. They all know my name. It sounds cheesy, but it gives me the sense of community. It can get lonely going through the monotony of the day over and over again. When people remember you and know you, it makes life that much friendlier. So thank you E. Thank you for throwing my wallet to the back of the line. We made some new friends when they helped me pick up my change, and credit cards.

3. Guys, I have mad muscles. Like I am insanely strong. I pick up my over 50 lb. suitcase when I am traveling and place it by myself into the overhead compartment with one hand. This may not sound amazingly strong to you, but I didn’t used to be able to do this. You know those people who ask the cashier to scan underneath their cart because they don’t want to lift up the heavy items? Yeah. That’s not me. Not with my strength. I pick up all the stuff from the bottom and put it on the conveyer belt like it’s no big deal. Because really, it’s not. For me. Lifting E all the time when he won’t walk, or when it’s not safe for him to walk, or when he is having a tantrum, it builds up my strength. It also can throw out my back, so I have to be careful, which brings me to the next one.

4. Handicap sticker. Man, this is a lifesaver. And honestly, it probably would not be that big of a deal if I didn’t have E. Which I guess is the point of it. After severe back pains from holding him all the time in the parking lot while he tried to get down and run into a car or having to turn around by the time I got into the store, because he was already worked up from the walk, I am so glad to be able to park close. At first I felt guilty using it because I thought well, he’s not in a wheelchair and I can physically carry him. However after many sleepless nights filled with back pain, I warmed to the idea.

5. Before I had E, I would always bring headphones with me on my flights. I hated being stuck without them if there was a crying baby. Now, I am immune to it. My sister and I were on a flight but not sitting together. After the flight, we were getting off the plane, and she told me she had not really been able to sleep because of the crying baby. I was shocked. I had not heard anything. When I do hear a crying baby, I am so happy. It means it’s not mine. Hearing someone else deal with it just makes me feel like I am not the only one who has a baby or toddler that screams bloody murder at the grocery store. Also, after 2.5 years of it, there is almost comfort in the sound. Well, maybe I wouldn’t go that far, but almost.

6. Last but not least. Free babysitting. This is the best. Time to just do whatever I want. When I had A, I remember my friends who had kids who were in school and just imagining the day that I too could go to the grocery store by myself. Or maybe just read by myself in my room for a few hours. I just longed to do something by myself that was just for me. I felt so lost in motherhood and wanted some escape sometimes. I thought of hiring a part time babysitter, but financially it was not really an option. With E, it’s definitely more intense, the time that I spend with him, but those respite care hours that I spend by myself, I just feel really lucky that I have the luxury of time off during my week from being a mom. I feel recharged after, and just a more effective mom because of it.

There are many more perks that I could list. But I wouldn’t want to brag too much. 🙂 All in all, I’m pretty grateful for the good and the bad in my life. I feel pretty lucky to have the family that I do.

* http://www.theautismdaddy.com/

So many of the things I’ve done in my life, and continue to do, are dictated by how to stay safe. In college, I wanted to join a biweekly evening study group on campus, but couldn’t initially because it wasn’t safe to walk alone at night. My male friend offered to start walking me up there and staying at the library while I went to my group. I could never go on a date without telling a friend my itinerary and having them check up on me. I learned in my early teen years to have a certain kind of facial expression when I was out alone so as not to encourage unwanted attention. I would often use a fake wedding ring to ward off unwanted attention. (Still only worked 50% of the time) These things I named are just the tip of the iceberg what women deal with daily. I’ve never really thought twice about them, I just do them. Even with all the safeholds we women put into place, sexual abuse and harassment are still overwhelmingly commonplace. I logged onto Facebook and Instagram and was overwhelmed by the brave women standing up and saying “me too”. With this, I’ll join them. Me too.

Why are we so afraid to speak up if it’s so commonplace? I don’t know everyone else’s reasons, but these are mine.

1. Fear of not being believed. Sometimes even by yourself. Doubt comes into our minds, niggling. Was it true assault/abuse? Could I have done more? Once we come to terms with the true nature of the circumstance, it’s even more terrifying to tell someone else. More times than not, we aren’t believed.

2. Fear of being regarded as weak and/or a victim. I regard myself as a strong woman. Coming to terms with being in a situation where I was taken advantage of in some capacity is hard to admit to myself, let alone others. Being regarded as a victim is just as bad for me. I don’t want to be looked at differently and treated differently. I don’t want people to feel sorry for me either. Sexual abuse/harassment IS a heavy subject and one that isn’t always easy to broach.

3. Feeling alone. I felt that what happened to me had only happened to me. I’d venture to guess that I’m not the only one who felt that way. Talking to others and seeing this recent social media response has definitely proved me wrong.

It’s powerful and uplifting to see people coming together. Let’s keep at it. To those other  #metoo’s. I see you.

 

*i apologize for typos and grammar errors. This was written on my phone in the waiting room while my son was at OT.

It’s been almost six months since E was diagnosed. I look back at my life a year ago, and it is completely different. The most noticeable difference? I use a Kindle Paperwhite now vs. the regular Kindle obviously.  I will never go back. The less noticeable differences? I live in Ohio, and my baby E was diagnosed with Autism. I didn’t sleep the first few months after the diagnosis and I absorbed every book written on the subject of Autism. I learned a lot, but there are a few things that they didn’t mention in any of my books and I’m talking about them here.

It is impossible to be shy when you have a child with a disability. If you were shy before the diagnosis, it’s put aside immediately. Firstly, dealing with doctor after doctor, therapist after therapist, insurance rep after insurance rep, you have to learn people skills. Secondly, you draw attention everywhere you go. All eyes on you.

When I go to the grocery store with my kids, I go to the grocery store. Everyone knows we are there. E doesn’t stay buckled into the cart anymore. He has mastered the unbuckle himself. While I am proud of his skill and dexterity, it presents quite a few challenges. He also screams like a banshee, happy or sad. Once again, I am happy that he is being vocal, but it’s rough on the ears, and it draws quite a bit of attention. When I bring him to the store, I have two options. 1. Bring the stroller. He can’t get out of the five-point harness, and he will stay buckled in the whole time happy. Usually. But then, I also have to push a cart. So the spectacle I make draws quite a few comments. Mostly sweet, but we make ourselves known. Option number 2. I wear him in the Ergo. He likes this for about five minutes. Then he starts to scream, and claw my face and hit me. I power through, and just put things randomly in the cart as I power walk the aisles and hope that I can make a dinner out of something that I’ve grabbed. Cabbage and Baked Beans. You’d be surprised. This with A at my side, “ Can I have this Mom?” “Can I have that?” “This just has just an eenie meenie minie mo bit of sugar in it” “Mom, watch me do this trick” Like I said spectacle. No way to be shy. I have my manufactured jokes and small talk to respond to every quip thrown at me.

With all these people skills you are forced to learn, you think you’d be the life of the party. But not so much. Hanging out and/or talking with friends kind of feels like you are bringing the water balloon to the party. There is an episode of Friends, where they are playing rock, paper, scissors. Joey tries to trump it with fire, and Phoebe trumps it with water balloon. The water balloon is the trump of trumps. This is me when I talk to my friends or go on playdates. Your problems are always such a downer. 100 times worse. I want to join in the conversation, but it’s the equivalent of someone saying, “Oh I tripped on a rock and stubbed my toe” and you say, “My mom died tripping on a rock” and then its just silent and the conversation is over. They talk about their kids throwing a tantrum, and you say, excited to join in, “Oh yeah, E had one last night and he cut open his head again. All his pajamas are getting blood stained and I am just getting so tired of trying to get it out of clothing. Do you know of any good stain removers for blood?” To me this is so casual, and I think I am adding to the conversation, but to them, they are horrified, and it ends all conversation there. Or worse, people are afraid to vent to you because they don’t feel like they can. They feel like their problems pale by comparison. They apologize before they talk, “I know E is ten times worse, but…”

Keeping friends when you have a kid with a disability is hard. You rarely have any extra time for friends, and also you’re going through the five stages of grief all the time. It really interferes with the carefree positivity you used to have. The stages bounce all over the place too. One day you’re in Acceptance, and you feel great and you text all your friends because you feel so happy and back to yourself again, and then the next day you are whiplashed back into Depression. Then Denial. Then Anger.

However, the friends that stick with you though all this are the keepers. They’re lifers. And if they’re lucky, you can share with them your newly acquired social skills.