Batman

"You're a superhero for all that you do."


I get this one a lot. Many autism parents do. When people hear about our kids, they automatically think that we are superheroes for keeping our cool and a smile on our faces all the time. They think we're conquering the world by having special needs kids, like we're Superman or Wonder Woman, impervious to the pains of the average human being. For a while, I believed them. I felt like I was extra special because I was overcoming such a great obstacle in life. I felt like I was faster than a speeding bullet, and more powerful than a locomotive. Nothing could take me down.

It took me a while to realize that I was none of these things.

I am no Wonder Woman.

If anything, I am more like Batman.

See, Batman is just a human. No alien super powers. No bullet proof gauntlets or lasso of truth. He's not immune to pain and is only equipped with the gadgets he's made and the power of his brain. He gets bruised, he's been beaten down, and has been emotionally and physically broken. And where I don't have any gadgets, I get up every morning equipped only with the power of my brain. I don't know what kind of mood my kiddos are are going to be in when they get up, and what the day is going to bring. I have to assess each situation as it arises and use my detective skills to figure my way out of the difficult ones while protecting the greater good, aka Jordan and Johnny's well being. I feel pain, like when I see them struggle to control their feelings or when they melt down and there's nothing I can do to help them. I haven't been physically broken, but the emotional breaks happen more often than I'd like to admit. I lose my cool. I cry and frequently feel defeated.

So no, I'm not a super hero. I am not immune to pain and I don't always know how to handle a situation. I am merely a person, getting through every day with my wit and my skill. The skill that any woman or man acquires when they don the cowl and become a parent.

Or when they put on their Batman pajama pants.

Be the hero that your children need and the one that Gotham deserves.

Peace and Love

Mrs.Ceda

Transition

I should start by summing up August, because I promised a blog and got sidetracked and bogged down and didn't get to write one.

So we took the kiddos to New Hampshire to visit my sister, which they loved. They had their first overnight in a hotel, which despite Dad and I not sleeping went surprisingly well. There was only one massive meltdown when the engine on the boat died in the middle of the lake and we couldn't get to the beach right away as planned. Johnny unfortunately lost it, because things just didn't go according to plan. But other than that, they had a ball and can't wait to go back. ESY ended, and the subsequent two weeks were a roller coaster of bad days and good, which is entirely typical and happens every year.

Which brings me up to now. Here we are in the third week of the new school year. Well, sort of. School started on August 30th. They went back for three days, had four days off for Labor Day weekend, then went back for two days, had Thursday off for the primary elections, and then went back on Friday. So technically, even though it's the third week, it's really the first week because it's the first FULL week.

Did that schedule make you nuts?

 It drove us crazy We all know that consistency is crucial to our kiddos' lives. And the lack of consistency this school year so far has really taken it's toll on Johnny. He loves school, loves his teachers and loves his friends. Thus far, because he hasn't been given a chance to really transition, he's been abnormally physical in his non compliance, his stims have come back with a vengeance to the point of distraction, and he cannot sit still or focus. It's been disconcerting to say the least to have gotten more bad notes home than good.

Transitions are always tough, and it's especially difficult when the school system, which claims to work with parents, creates this wacky schedule that provides no structure for the kids to adhere to. I wish they'd remember that all kids are not the same and can not adjust so easily.

Here's hoping that these next few solid weeks help Johnny get back into the swing of things and on the road to success!!

Peace and Love

Mrs.Ceda
  

It's Not Always Pretty

I always try to keep my posts upbeat. I don't like to talk about the difficult things, like the meltdowns, the screaming, and the crying. They're hard to deal with, hard to write about and hard to read. But I guess  I wouldn't be a good teacher if I didn't educate about the bad as well the good.

This evening served as a painful reminder of the realities of autism. We decided to take the kiddos out for ice cream as a treat. Everyone went to the bathroom before we left, then we buckled into the car and were on our way. We had to circle around a couple of times for a parking space, but we finally found one and made our way over to the ice cream shop. No sooner did we enter, then Jordan announced that she really had to go to the bathroom and it couldn't wait. So it was off to the public restroom.

And into disaster.

She went to the bathroom no problem. But when she was done, she absolutely,positively refused to clean herself. I tried to get her to go back in, but she clamped her hands on the sides of the stall, threw the brakes on and started shrieking like I was sending her to her death. She threw her entire 70 lbs into me and knock me into the wall. Fed up, I told her that when we got home, she was going straight to bed with no turn on the Wii. Usually that will cue her to stop, because she doesn't want to lose her turn playing Mario. Needless to say that wasn't the case tonight.  Still weepy, we walked back to the ice cream parlor, where she continued to carry on until we sat down outside. That's when she started shrieking all over again. We sat for all of 2 minutes before we had to get up and leave because the meltdown was in full swing. She screamed, yelled, cried, and kicked the entire ride home, with Daddy Ceda trying desperately to keep Johnny from antagonizing her and me white knuckling it on the steering wheel. She was sent straight to bed, where she screamed for another 20 minutes before finally giving up. It was an absolutely excruciating two hours.

It's in these instances that I really hate autism. I hate that it sends my kiddos spiraling out of control because they don't understand how to control their emotions. I hate that it causes them to get overwhelmed by the simplest situations. And sometimes, I hate that I have to think twice about where we plan to take them because the surroundings might be too much for them to handle.

I don't want to change my kiddos. I love them just the way they are. But I am also human, and it is okay for me to have dark moments where I really just want to kick a puppy because the whole situation pisses me off and there's nothing I can do about it.

Today's Lesson: It's not always pretty, and it's not always going to be easy. But remember: you're still human, and it's perfectly normal to get angry when things are beyond your control.

Peace and Love

Mrs Ceda.

Extended School Year and the Necessity of Routine

Party in my house this week! Praise the powers that be, extended school year started on Tuesday! The regular school year ended on June 20th, and the following 3 weeks were, to put it nicely, like walking barefoot on Legos. They were very painful, at times unbearable, and often reduced us to tears.

Not EVERY day was like that. There were quite a few peaceful moments when we could sit back and enjoy being home with the kids.We tried our best to keep order and were very fortunate to keep some semblance of a schedule by sending them to their Uncle Pat's house a couple of days while I worked. But if they didn't know exactly what was going to happen when they got home each day, more often than not their behaviors would emerge and the evening would spiral out of control.  The lack of routine, the absence of getting up in the morning, eating breakfast, getting ready for and then leaving for school took a great toll on all of us  Daddy Ceda and I were frequently frustrated, exhausted and irritable by bed time. Squabbling and meltdowns were frequent, especially toward the end of the three weeks. Due to the lack of the demands of the school schedule, their world had become unstable.   This is why routine is so very important in an autism home. Routine keeps us from falling apart. Routine keeps us calm and makes us feel safe and secure. We know what each day brings, so we can anticipate what we have to do to make it through. As I just explained, our world becomes a slippery slope without it.

Let's clear something up about extended school year. It is not free childcare, nor is it a day camp. The kids are on  IEP's and  are maintaining skills they've learned over the past academic year. The teachers and therapists develop a schedule for these kids to follow that include their services (speech, OT and PT) as well as basic skills such as math and language arts.  They aren't running around doing arts and crafts and singing kumbaya around a campfire while toasting s'mores. Fun is incorporated into the day, but they are there to keep learning and stay on course. The last thing you want is to see your kiddo regress and lose valuable skills that sometimes cannot be relearned.

ESY doesn't work for all spectrum kids. But for us it is a blessing. It keeps our kids right on track with their learning, deters regression, and most importantly brings back the routine!  I'm not anticipating fantastic reports home every day. That would be unrealistic. However, over the last two days both kiddos have gotten glowing home reports, so you know what? I'll take it. It means they are happy and they are back in their element of get up, eat breakfast, get ready and go to school. When they get home they are calm, collected and content. The evenings have been laid back and peaceful, and we really couldn't ask for much more. 

Peace and Love

Mrs.Ceda

Perfect to Me

I  never claimed my kids were perfect. They're not. But no one is, really. Just like everyone else, they have their good days and their bad. I've more than once yelled, screamed and cried out of sheer frustration because nothing I do or say seems to get through to them. This sure as shit has not been an easy journey.

Sometimes they use what they've learned.Most of the time, it takes some serious repetition and demonstration to get something to stick. They often stumble in their attempts to get it right, because they only want to please and tend to rush and forget things. But they don't give up. And for every trip and fall, and there have been more than a few, they pick themselves up, dust themselves off, and try even harder. I could only hope to have even half of their determination and perseverance.

My kids aren't perfect. But they are fighters, and they don't let anything get in their way. They do everything they can to make their place in this world and I couldn't be more proud of them.

They are perfect to me.


Peace and Love

Mrs. Ceda

The Kindness of Strangers

I wish I could tell you that it's all wine and roses. That your kids are always going to be on their best behavior every time you go out and will be perfect little angels at home.

But oh, would I be a liar.

Meltdowns in our family can last anywhere from 20 minutes to 2 hours, and they are not always at home. They can happen anywhere, and in their wake I usually feel defeated. I feel like I've completely failed my kiddos because no matter what I did it wasn't good enough, even though I tried. I don't like to talk much about these events,especially the public ones,  because they are a stinging reminder of just how hard my kiddos really have it and just how cruel the scrutinizing world can be.


But some stories are worth repeating, because some have a happy ending.


It was nearing the end of April vacation, and the kiddos were getting restless. I decided to take them for a walk on the waterfront one unusually warm day just to break up the monotony and get them out of the house. Naturally, the walk wasn't without incident, but I had expected as much and soldiered on, praying for the rest our trip to go without incident. Once we got to the main drag, they saw an ice cream restaurant and insisted that we go over. The line was around the corner when they plunked themselves down at a table, and I knew then that this wasn't going to end well. There was no way they were going to be patient enough to wait that long. I made the crucial mistake then of telling them the line was too long and we'd have to try again another time.

They. Lost. It.

Full on, high pitched shrieking and crying. Sweet Pea was wailing at the top of her lungs and Monkey was screaming and throwing himself on the ground. He went into "jell-o mode" (where he becomes dead weight) when I tried to pick him up so we could get going and get away from the staring and scowling crowds. We had reached a cross walk and now that I had Monkey in my arms, Sweet Pea was on the ground. Both were still wailing and I could feel myself losing it when I was approached. A gentleman, probably not much older than me, stopped me before we crossed.

"Excuse me, I couldn't help but notice you were struggling. Do you need help? I have a little guy of my own, but if there's anything I can do...?"

I was flabbergasted.  Most people would scowl or scold me and tell me to get my kids under control, and here this man was, acknowledging the difficulty of my situation and still offering to help. I choked back the tears of gratitude and thanked him. I politely refused because we still had a long walk back to the car. That's when he put his hand on my shoulder and said the best thing you can say to an autism mama. The one thing I needed to hear and will never forget:

"You're doing a great job, Mom."

I nearly burst into tears at his kindness. I nodded my thanks and we parted ways. The meltdown continued all the way back to the car and  all the way home. Once we were home and both children had parted ways into their respective rooms to calm down, I made myself a cup of Earl Grey and reflected on what he said to me.  It made me feel validated. It squashed those feelings of failure and defeat and restored my faith not only in myself but in the world again.


So to you, kind sir, I want to say thank you. Thank you for your understanding and your empathy. It means more than you'll ever know!


In the immortal words of Capt. Jean Luc Picard:

Pretty sure this stranger lived by this mantra. I think everyone should!

Peace and Love

Mrs.Ceda

Don't Judge

Everywhere you look within the past week you've seen something having to do with Harambe the gorilla. About how he was shot and killed when a toddler fell into his enclosure. It was a tragic event, no doubt, and I'm positive it was not the route the zoo wanted to take. But a little boy's life was in danger, and regardless of whether Harambe was intending to harm the child or not, action had to be taken.

And as a result of these stories, the mother has been vilified. She has been put through the ringer and hung out to dry.  She has been called an idiot, negligent, a moron, and people have even said she should be drug out into the street and shot.

Back the truck up a second here.

Now I have seen negligent parenting. I work in retail, I see it every day. I've seen parents let their kids wander the toy aisles while they're off looking for matching seat cushions for their overpriced patio sets. These kids aren't tweens, either. I'm talking anywhere from 4-10 years of age, and they just let them go.  What's even more upsetting is when they stand at the end of the department and just holler for the kids like they're puppies. I can say something to the parents about not leaving their children unattended, and I have, but I can't call them out on their clearly bad parenting. The whole situation is infuriating because I really just want to slap them upside the head.  I have also seen parents so consumed in their phones that they don't realize their little one has wandered ahead. That's not negligence so much as sheer ignorance but again, I can't call them out on that. And that very well could have been the case in Cincinnati. The parents could have been distracted by cell phones, conversation, or something and just not been paying attention while their little guy ventured off. But then again...

Those of us who are parents know better, especially those of us who are ausome parents. I'm not saying this was a spectrum kid. I'm just saying that as autism parents, we are a little more in tune with a child's ability to be easily distracted. Anyway.  We know that even the most well behaved child can have an off day. We know that even when we have drilled into the kiddos' heads that they must stay with mom and dad and always hold hands, that little minds are easily distracted. Within the past year, we took Sweet Pea and Monkey to Dave and Buster's. Yeah, yeah, I know. Completely different from taking them to a zoo, but hear me out. We had gone over the social story time and time again about how staying with Mommy and Daddy keeps them safe and they should never walk away. So we're in the arcade and I had Sweet Pea with one hand and Monkey with the other. Monkey dropped Mr. Bear. I told Sweet Pea to stay put so I could get Mr.Bear. In the time it took me to retrieve the errant toy at my feet and hand it back to Monkey, less than 10 seconds, she had wandered out of my sight. I started to panic before I spotted her walking over to Daddy, who was 20 feet away at another machine. This was fortunately a crisis averted, but you see what I'm getting at here. It only takes a second for a kid to take off. You can be the most hyper vigilant helicopter parent on the face of the planet, but even you have to sneeze, cough, blink, yawn or even help another child. It is physically impossible for you to be everywhere and looking everywhere at once.

The bottom line is this. This is a sad situation for all involved. The parents, the child, and the zoo for having to take out a member of an endangered species. But placing blame helps absolutely no one. Maybe it was negligent parenting. Maybe it wasn't. We don't know because we weren't there. I know I don't want to be unfairly judged, and I can't imagine you would want to be, either.  So ease up a bit.

Peace

Mrs.Ceda