Ten days, by my count

I'm still excited about it and feel like shouting from the highest hill in town, we have no mountains here. Yes, ten days without a single tantrum.

I almost feel guilty about counting today, because although there were no tantrums, he did cause self-injury. Puppy has all week for the holiday break.  So since I still have to work, he is dropped off at daycare.  And now I need to give a few details about this week.  Puppy's daycare moved locations and Monday was their first working day at the new location.  So in Puppy's defense I'm going to give some insight into what I think may have contributed to his self-injury.

     * Puppy's daycare is in the same neighborhood, but three blocks away. He questioned me where I was taking him and showed concern about being left in a strange place.

     * It's an old building that may have been used as medical offices. I'm not sure for certain, I need to ask around about that.  But it's been restored and painted on the inside and outside. The strong scent of paint is all over.

     * As I observed the classrooms, I noticed they are small and they are filled with bookshelves, tables and chairs, and small carpeted floor areas.  The room I left Puppy in on Monday was such a room as described and they were not prepared for him to arrive, so he may have felt out of place. 

     * Naturally, he would feel he's in unfamiliar setting.  Puppy is the oldest and tallest child at the daycare.  They had forgotten to provide the bigger chair for him to use, so he was made to use the tiny chair until his teacher arrived to take him to his new classroom.

     * The new classroom for the after school students is located in a basement like room.  It is larger in that it has an entrance space, then a setup with small tables for meals, followed by another larger space for the daily activities. 

     * I noticed this classroom had a lower ceiling, and minimal windows or rather small windows allowing for sky light to come in and not so much for looking out.  The other location had large windows and a glass door looking out to the street. It gave lots of daylight and activity from the outside.

     * This basement classroom seemed to have an echo, and crowded or claustrophobic feeling about it. 

     * Puppy complained there were too many kids.  He couldn't even tell me if they were the same after school kids he already knew or not.  I only noticed that some were younger than usual.  It may be possible that they were also a bit more rowdy or hyper if younger. 

But although these seem to be excuses, at least to you and me, I have read enough material on autism to understand that just because Puppy cannot explain or express to me verbally all the possibilities that may cause heightened sensitivity or over stimulation within his surroundings, it doesn't mean that they aren't affecting him.

His teacher mentioned to me that he was asking how much longer before I arrived to pick him up, and it started about two hours before I did arrive.  I'm sure this caused stress, too.  He was already telling me he didn't want to go back tomorrow, but because I only work one-half day, I will do my best to convince him it will be for a short period.  I will pray for him to have a better day, and we will continue to our counting of days without tantrums.

Eight Days is Great

I was thinking about the previous posting Who's Watching, and I wrote about the attention given to Puppy’s behavior.  Well, the more I thought about it; I can’t imagine time going by without focusing on his behavior.  It seems like every waking moment is filled with me wondering if the next word out of my mouth is going to bring on another tantrum or a mouthful of cuss words, or worse—a meltdown.  It is a constant occupation.

Anyone familiar with autism is aware of the many tantrums and issues with behavior.  These behaviors are the same ones that keep us from making visits to the grocery store, to our friends’, to parties and even to our own relatives’ homes.  I can remember back when Puppy was younger and he’d have a tantrum; I’d just gather my things and him and drive ourselves back home because I didn’t think it was fair to the others to have their day ruined on account of Puppy having an uncontrollable tantrum. 

However, in those days I still didn’t have the diagnosis and I knew there was a disability, but I never knew about such an illness that caused so many unwanted behaviors.  All I could do is run away with my son and simply putting him in the truck was a familiar surrounding for him that riding around calmed him down.  He was in an enclosed setting, buckled in, and safe with me. On days like these we would ride around listening to the radio because he loves music.  Then, after receiving his diagnosis, it was hard to understand and the realization that this was always going to be present, this “unwanted behavior” now had a name, autism. 

Well, today is already Saturday and we are on day number Eight (8) without a tantrum.  He has come close a few times but a quick re-direct has been all it’s taken to shake his train of thought.  This is a milestone these days.

Who's Watching

Yes sir, we can place another check mark on the calendar!  We have had four wonderful days of continuous good behavior at home.  And I’m going to stress the “at home” part because it doesn’t happen too often.  Puppy is well behaved in class and I imagine it’s due to the structure and routine that is the norm in any classroom setting.  Plus he kind of fears the teacher on account of she has the power to place him in the baby chair as a consequence. 

Let me elaborate on his fear, or I guess I should say it’s also respect towards his teacher and others.  It goes beyond the classroom setting.  I have repeatedly told Puppy that smoke detectors around the house are really cameras that are viewed by his teacher, his uncle, his aunt, Ms. H. and me when I’m away from the house.  Since we can call, text or e-mail each other, we exchange information with one another about his behaviors at home to make our stories more accurate to him, and it has worked for the most part.  Imaginary cameras have saved me many times.  If I see him getting tense, I’ll simply look up and he knows that I’m reminding him to do as he wishes because the camera will catch it for all to see.  It usually gets him to snap and redirects to think fast and make an attitude adjustment or his teacher would come over and see what was happening in person.

It all sounds good, but there was a loophole to the cameras.  What if he just walks away from view?  Oh yes, he thought of this one all by himself.  He’s a bright one these days…sometimes.  Well, to spook him when he walked away, I mentioned once that I thought I saw his teacher driving by as I looked out the window.  My poor baby doesn’t know the difference between a Suburban, Tahoe, Yukon, etc., but he knows her SUV is black.  So as you might imagine, we just happen to see his teacher passing us all over town and the neighborhood.  She’s so busy sneaking up on us that I have no idea when she gets anything else done.  And yeah, I was a terrible mom and I shared this with his teacher – and now she jumps right on cue when he tells her he was well behaved because he saw her drive by the house the night before. 

Before you say I or we are evil playing these tricks on Puppy, come spend a few days in our world and you too, will understand.  Just one note to everyone, please don’t give away the secret!

Three Days in a Row!

Puppy's last melt down was this past Friday.  Since then, he has been trying his very best to change his attitude and has been expressing such good behavior all around, school, daycare and at home.  And with this comes his repeated question:  "How many days am I behaving, mom?"

So, I'm taking out the calendar again and marking some great big check marks for each day that passes.  He may be pretty verbal, but he's very much a visual learner and I get a positive response from this type of praise.  I just felt like posting something happy.  This makes me very happy, to see him in a great mood everyday.  I suppose we'll see if I can get as far as 5 days! It's all about baby steps, many baby steps.

I Changed My Mind

A little over a week ago I posted about Puppy having a meltdown.  Well, on Friday he had another one.  I began to write about that evening, but it only made me flashback to the emotions and horror of that night.  I changed my mind.  So to try and understand as much as I can about the how and why Puppy does what he does, I took to catching up with other bloggers in the autism community. 

Today, I read two separate blogs by two fathers of children with autism.  One is personal in writing about his son, but is also an informative blogger with references to autism studies or what’s in the news.  The other father is also detailed in writing about his family and the daily challenges they face together.   However, both fathers wrote that they were repeatedly being corrected about the way they spoke about their children’s autism.  One child is high-functioning and the other isn’t.  So already their experiences will be different.  One is not more right or more accurate than the other.  I know I would never see one correcting the other on the habits and characteristics of their child with autism. 

This made me wonder about what my readers think.  My blog is so small and probably still considered in the beginning stages that I have not taken to writing about every time that Puppy has a moment, tantrum, melt down, or whatever.   It must be because now I, too, am aware of others out there reading my experiences and being critics about how I handled a situation at home.  Now I think, did I say the right thing? Did I approach Puppy with the best redirection?  I know others will say, it doesn’t matter what anyone might say or think, but it’s difficult not to consider this.  I do know that like the two dads above, I write because I hope to help someone else understand the challenges and everyday living with a child with autism.  It’s a tough job, but the rewards are well worth it.

Well, today’s post was not what I was expecting to write, but I’ll gather my thoughts and write again.

Our meltdown

It started off to be a wonderful Saturday.  Puppy and I woke up alright, meaning we didn't have any grumpy attitude.  I include myself in the "we", because I do wake up grumpy sometimes, too.

This morning we had a schedule to follow:  breakfast, maybe begin chores and head out the door to our support group meeting by 10:00 a.m.  I fixed Puppy his pancakes, I had my meal and coffee, we got ready and off we were.

This is one of two groups in which I participate. It's a small group of about eleven families, more or less, so as time goes by we are becoming closer and closer.  We are able to take our kids because the meetings are held at a local autism therapy center.  It's like an indoor playground for the kids and it works out pretty well to know we are all together.  So back to business, we had a few topics to discuss, fundraisers, an out of town field trip, participating in an event sponsored by another support group, parade float, and a Thanksgiving luncheon. Once those were voted on and penned, we began working on an arts and crafts project to make cornucopia decorations for our luncheon next weekend.  I was finally able to get a little adult time with the other moms as Puppy played and colored with the other kids. But it was obvious that he was getting tired and wanting to leave. He was pacing back and forth, and constantly asking me how much longer so no mistaking the signs for anything else.  Our meeting lasted twice as long, two hours, and too long for Puppy.

We were finally home.  Puppy started a conversation with me, and already I can't remember exactly what was said but I'm pretty positive it must have been about his obsession and him asking when he can get his wallet back.  He wasn't satisfied with the answer I gave him and he sprung up off the sofa.  He started walking in circles, angry and cussing. Knowing this is wrong he came back to me to apologize, over and over. Then asking again, when will he get his wallet back. Still, he didn't like the answer and so this time he hit himself on the head with a closed fist. He stood up and knelt back down next to me.  His face was red with anger, and his hand stretched out to push a potted plant off its table and crashing to the tile floor, soil and broken ceramic where it fell. He seemed frightened by the sound and rather surprised the pot broke, he wasn't expecting that.  Then, there was a smirk of satisfaction showing he got my attention until he saw my expression was unchanged.  He stood up again to pace, curse and think of his next move.  What came next was not what I was expecting.  He was filled with rage and ready to explode but didn't know how to release the pressure.  His arm went up and the clenched teeth let me know I was his target.  I could have moved, but could not have stopped him from needing to punch, it was going to be me or a wall or maybe Ms. H. who was still there with us.  She saw it coming and tried to stop him, but was unsuccessful. After ward, he quickly changed his thoughts and now it was a different anger.  Hitting was wrong, but he still needed to release all the intense emotions within and he began causing more self injury, punching his nose to bleed, his head, his chest. He even picked up a piece of ceramic and looking at me he threatened to cut himself.  Luckily, he is unfamiliar with cutting that he held the rounded side to his skin, then threw the piece when it didn't work. He stared at me, saw my sadness, crying. It wasn't pain from the punch but pain from the heart knowing I could not save him. Nothing I would say was going to erase his anger. He came over to me and placed his arms around me as I directed him to sit on the sofa.  I sat across him on the coffee table, trying my best to calm him.  He cried, I cried. He apologized and so did I.  How can I explain what is happening to him? He can't even explain it to me either. He hurts and it's so deep that it scares us both. I know that the actions are not how he expresses himself but rather the results of not being able to express himself.

Puppy sat across from me and apologized for all that he had done. In his eyes I saw a lost and confused little boy who wanted so badly to be happy, and to make me happy.  He listened and was able to calm down, hugged me and I had my son back. 

I went back and forth with the decision to write this post as detailed as it is, and decided that not enough people understand autism and if I don't tell our story, I'm not being an advocate for my son.  He can't speak about what happens to him because his disability holds him back and prevents him to tell his side of the story. I've even seen him erase episodes of meltdowns, as if it was another person and not him.  I actually pray he doesn't have memory of his meltdowns because they are horrible and painful. Everyone needs a second chance, and Puppy needs that chance, too.

Carlysvoice.com

The other day I watched a video posted on facebook about Carly Fleischmann, Girl with Autism [HQ].  I think its a recording of a 20/20 interview. 

I learned about Carly earlier this year.  She’s a teenager with autism.  She’s also non-verbal.  The video explains how at the age of 11, she was introduced to a computer and was able to type words.  It was her first breakthrough into the verbal world.  

The video is narrated through Carly’s words.  It was quite moving.  At first it was even eerie to see the behaviors shown on the video.  If I had never seen a person have a tantrum or meltdown I may have thought the behaviors to be disturbing.   But as I continued to watch, I was thankful to see and learn from her.  In her own words she explained the reasons she has outburst, self-injury, and tantrums.  I recommend that everyone watch “Girl with Autism” at least once.  And then I recommend that those whom want to learn more about autism, bookmark Carlysvoice.com  and learn about this amazing young woman who has become a “go to” person to ask questions about autism.