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

Tough Decisions

Those who know me well know that I spent some time working in an outpatient mental health clinic. Now I'm not a therapist, and I'm most certainly not a doctor or NP, but I did work front office and intake, and on more than one occasion was asked to phone in a prescription. I was familiar with many of the medications and their various side effects. I saw people benefit from these medications, and I also saw some go through rigorous trial and error where nothing worked. Some got better. Some didn't. I couldn't imagine what the parents of the children on meds were going through when they made the decision to go that route. I was naive back then. I had no idea what it was like to even have a child, let alone a child with any kind of condition that would require medical treatment.  I remember when I got pregnant with Sweet Pea, I thought to myself: "I don't ever want to put my child on medication. If it comes to that, we will find another way." I knew the stigma that came along with the decision to medicate. I knew how society looked down on parents who decided that this method was the best way to treat their child. My husband and I talked it over and he agreed with me. No matter what, we would find another way.


Never had we thought we'd be faced with this decision.


Getting Monkey's diagnosis was a blow. It was hard enough raising one child with autism, and now we had two. But we put on our big kid pants, strapped on our boots and dove in head first. No choice now. This was the hand that life had dealt us and we were going to play it. Of course, we automatically assumed that everything would go the same as it had with Sweet Pea. We figured he would make the same progress and hit the same milestones in the same way that she did. But of course...


The first time we noticed something different about him was toward the end of his last year at preschool. He couldn't seem to sit still and had trouble staying on task. His behaviors, seemingly gone through the first half of the year, had started to resurface. I spoke with his pediatrician, and he had both myself and Monkey's teacher fill out Vanderbilt Scales. After reviewing the results, the doctor decided that we should revisit the assessment when Monkey started kindergarten. I was hesitant, but agreed with him and decided to wait. Summer came and went, and Monkey made little progress in the summer program. He was acting out more, not listening and was continually unable to focus.  Kindergarten started last fall, and he went through the typical adjustment period with the meltdowns and the lost sleep. Then he leveled out and seemed to be doing okay. He was making pretty good progress and there was talk of moving him into the integrated class for longer than 20 minutes a day. His behaviors decreased again and although he was still fidgety, he seemed to be doing okay.

And then Christmas break came along. Upon returning to school, the behaviors became more prominent. He became increasingly unable to focus or sit still. The rough weeks seemed to outnumber the easy weeks. February rolled around and when we went through the IEP, each and every assessment stated that though he was still making progress, he was being inhibited by his high activity level and his inability to stay on task without constant redirection. Lately he has been having trouble with impulse control and has been hitting teachers. Not maliciously, he just doesn't understand how to control his emotions. He'd also been flopping, screaming, and being unsafe on the playground and in the hallway.  So once again, I put in a call to the pediatrician and we redid the Vanderbilt Scales.Upon reviewing  those and reviewing Monkey's IEP assessments, the doctor concluded that we were indeed dealing with ADHD and that the appropriate route to take would be to put Monkey on a stimulant. He starts them tomorrow.

It was at Christmastime that Daddy Ceda and I began discussing the possibility of our son needing medication to help him be in better control of himself. We were both still very wary. Neither one of us wanted to accept that maybe this was what he needed. We didn't want to do it. We wanted to exhaust every other method first. We were set firm in our decision at that point, the same one we had made when we were expecting Sweet Pea. No meds. So we tried everything. We tried weighted blankets and back packs. No help. We tried deep pressure. Temporary relief, but in the long term not a viable solution. We tried reward charts for good behavior. Worked briefly, but ended up failing. We tried just about everything until there was nothing left to try. We'd reached the end. As reluctant as we were, we both decided that this would be the best route. That medication would be what would help him the most, stigma be damned. Our son's ability to focus in school and function in society was far more important than what the world might think of us.

It was a hard, drawn out decision for us, but the bottom line is this. We are the experts on our child. We know what works and what doesn't, and we have faith that our decision is in his best interest. It doesn't matter what anyone else thinks.

Keep Your Head Up

      Getting the kiddos off the bus on Friday, the driver asked me if we were going anywhere on vacation the following week. I kind of laughed and shrugged her off, telling her we'd probably stay local.  Going out for us is kind of like what Forrest Gump says about life. It's "a box of chocolates. You never know what you're gonna get."

    Most of our outings are okay. We tell the kids where we're going and what we are doing and repeat several times to them to be on their best behavior and listen to mom and dad.   I would say that about 8 out of 10 trips are what one could consider a success. A success consists of no meltdowns, relatively quiet voices and no bolting or running through parking lots. A peaceful ride home is the icing on the cake of a great day.  But of course, there's bound to be some difficulties sprinkled in there. If something doesn't go according to plan, like not having dessert at the restaurant, or not being allowed to run into the move theater. Or heaven forbid there's a hand drier or automatic flush in the bathroom.  This is when things start to spiral out of control. This is when we slam on the brakes and scream in the middle of The Olive Garden on the way to the bathroom, and when we throw ourselves on the floor of the mall and start wailing because running in the movies is not allowed. 

    This is also when people start to stare.

    It doesn't bother me now, but I  used to get so mortified. I always felt like I was being judged. People would stare, glare and scowl at me. Some would even be so bold as to say something,  Though it was muttered, I could hear what they were saying loud and clear.

"Can't she control her kid?"

"I hate it when parents let their kids get away with this."

"What a spoiled brat."


    The last one always got me. My kiddos were not brats! How could they say that without ever having met them? Both Sweet Pea and Monkey are bright, beautiful, funny, amazing kids.These people see them at a very vulnerable moment and automatically label them as rotten, spoiled children. It wasn't fair! My frustration and mortification would always get the best of me, and I would get angry and bodily carry my kicking and wailing child out of the situation. After that the day would just continue to cascade into an abyss of misery with more shouting, screaming and continued melting down until the kid was tucked into bed and I was crying into a glass or two of wine. It got to the point where I didn't want to take them out anymore because I didn't want to be judged.

    It wasn't until after I got Monkey's diagnosis that I had my moment of clarity.  Why on earth should it matter what other people say? These outsiders didn't know what kind of challenge we had been given, raising two kids on the spectrum. Chances are, they didn't even know my kiddos  had autism. I realized then that I had lost my focus. Instead of spending all this time fretting about what the world will think of me, I should really be addressing the needs of my clearly distressed children. I had been too busy worrying about how I would look in the eyes of society. I was ashamed of myself.

     I decided that enough was enough and I had to start paying attention to what my kids are trying to tell me. They are telling me that this isn't about me, this is about them. At this point in time, whatever is going on is too much for them to take in and they need to leave. Getting perturbed because of what the world might think doesn't help.  I have to remember to maintain my calm, keep my head up, and ignore the muttered oaths, stares and judgmental head shakes because they don't matter. The most important thing to me in the world is the happiness and well being of my children, and I am going to do everything possible to see that maintained.  If the kiddos know I'm doing my best, and I know I'm doing my best, then to hell with what anyone else has to say about it! I got plenty of stares the day I had to carry Monkey screaming from the food court, but I didn't get angry and couldn't have cared less what anyone else thought. And you know what? Monkey and I were better off for it. He calmed down almost as soon as we were outside and when we met Daddy and Sweet Pea at the car, the rest of the day was perfect

    So the take away from today's lesson is this: Don't let what might happen stop you from taking your child out and being a part of society. If something does go wrong, keep your head up and do what you know in your heart is best. The stares and mutters of others might sting at first, but that hurt quickly fades once you see that grateful smile on your kiddo's face and you know that you saved the day.



Peace and Love.



  "Love the child in front of you. Encourage his strengths, celebrate his quirks, and improve his weaknesses, the way you would with any child. You may have to work harder on some of this, but that’s the goal.” – Claire Scovell LaZebnik