Ch-Ch-Ch-Ch-Changes.....(Journal #57)

“When you’re finished changing, you’re finished.”—Benjamin Franklin

....as David Bowie sang, "Ch-Ch-Ch-Ch-Changes...." I hope are coming our way. We have made some changes with Sam this week....

As I have shared some in the past, Sam has some pretty aggressive and violent melt downs. The above picture was the look I received before a huge meltdown on vacation this summer. Shortly after this pic, he threw his items and went running away through a crowd. It happended because I wasn't walking the way he wanted me to walk along the crack in the sidewalk he was following. I couldn't understand how he wanted me to walk, and BOOM! We have aggressive/violent meltdowns a couple times a day, and they can often times last as long as an hour. This past year they have increased in length, aggression and frequency. While having meltdowns is nothing new in the autism world, these meltdowns have been changing in complexity for us. Sam will go from one extreme emotion to another in seconds, and usually with no warning. Most of his incidents are related to communication or frustration on his behalf. While Sam is verbal and uses language, he doesn't always know how to communicate. He can't tell me when he is sick, or his specific needs at times. Sometimes it is a simple word he can't remember to say. Like the other day, I had given him a cup of yogurt for a snack but forgot to give him a spoon. He came up to me and kept saying over and over,

"I need, I need, I need..."

and of course I would respond with "what?"

He would then respond "don't know, you know" "det it for food!" (get it for food)

"I need, I need, I need..."

"Sam, what do you need?"

"don't know what talled! Det it! Det it! I need, need, need!!!"

At that point I had just figured it out, "spoon?"

Too late. "Yettttthhhhhhhhhh" (yes) Sam screamed with agony. "I fordot, NO MORE!" He forGot how to say spoon, now he was mad, so forget it, he wasn't even going to eat.

So, next came the chair, then the plant, then all the picture frames and head ramming. That is his typical order of destruction when in the kitchen area. He quickly goes after the wooden kitchen chairs and throws them backwards onto the wood floor, he rounds the corner and grabs my plant, pulling it by the branch across the floor until the dirt spills, then he proceeds to every picture frame in site and slams them face down, following with his usual head ramming or banging. All of this in a matter of explosive seconds out of nowhere.

So, then you may say this to me, "you know what happens, move things, prevent it, stop him, then consequence him."

That is so much easier to do with a neurotypical child. If it were our oldest that did that, we would, because he would learn the first time he had to clean up the dirt, pick up the chairs, etc...that the behavior was not acceptable. Zach would understand the first time.

With Sam it is different. (Which yes, creates another whole post someday on the challenges of having different rules and expectations for children and siblings of those with special needs. Unfortunately, it could be a book of explainations.)

I won't put away the picture frames. They are pictures of family near and far, and it is an important staple of our family and how we share memories. They will continue to get slammed and broken by Sam, and I will continue to buy cheap wooden ones that are replaceable. The kitchen chairs....well, that would be a pain in the butt to not have those out. So, that leaves the plant, the easiest thing to move. Now that may just be me being lazy!!!! :)

This example of a melt down is actually quite mild for what his are like. He has attempted to hurt himself many times, which self-injurious behavior is also common with our little autistic kiddos, because they get so frustrated and don't know what to do. Sam will actually bang his head into things or sometimes attempt to actually throw himself even down our stairs. He will bite, kick and hit when being restrained (who wouldn't) from hurting himself or others. We have created a safe place for him during these situations in his bedroom. But...our concern has been great over the last several months.

Hence, this past Monday, Sam had a check up. And...we finally started the "autism drug" of Risperdal. I could hug and kiss our pediatrician. We have had 3 days without ANY meltdowns. Two of those days have seen zero beginnings of any tantrums. The first day, we had several start, but I was able to redirect them, which I haven't been able to do for over a year!!!!! I know I shouldn't get too excited yet, but this is HUGE!!!!! I can't wait to see what kind of effect this will have for Sam. He seems a little different too, more receptive, more at ease. I know that there are many people in the autism community, who would not seek the use of medications to change behavior in our kiddos, and I respect that. But, if this helps take some of the frustration that Sam has to encounter everyday away, it will be very worth it. Oh yes, "ch-ch-ch-ch-changes" are in the forcast. Changes that we look forward to.

A Twist of Faith
Sometimes we are afraid to give our lives fully to God. We are afraid, because that would require a change. But, when we do, I can only say that the change is truly for the better.

Jesus said, "If anyone is thirsty, let him come to me and drink. Whoever believes in me, as the Scripture has said, streams of living water will flow from within him" (John 7:37-38)

Answers not needed for Shalom (Journal #56)

It was just the boys and I this Valentine's as we missed dad, who was out of town on business. So, I had pledged that it was "all boys, all night". No interruptions from the outside world, no doing housework on their time, no "have to" stuff, just me and my boys.

It all started out fine, as Zach had some time to enroll his latest Webkinz that Brent and I gave him for Valentines. He was so excited that he now has 4 of them. He also was trying so hard to show Sam how to set his Webkinz up on the computer, but Sam paid no attention. He just sat on the floor by his brother lining up his legos and blocks. Zach was trying so hard to pull him in, and Sam didn't even flinch, or notice his brothers desperate attempts. I say the evening started out fine, it was peaceful. A shalom sense that we hadn't had for awhile.

So, it was my fault, I broke the silence. After a couple of phone calls (that I already had said I wasn't going to take, but in these cases they were both important family members) I got on the floor and tried to draw both boys in together for play. They started a little, Zach being so patient, and Sam dictating who would touch what and when. I decided to slide back a little and watch it pan out, in hopes of it turning out a little more different than it did yesterday when Zach tried to build forts with him. But no, same ole' thing. Sam insists on everything his way, and Zach desperately wanting time with his brother, concedes, just to have time with him. I am always so impressed with Zach.

As the night wore on, I was debating how to transition Sam to bed. He has been on Clonidine for a year now, of which his larger dose is saved for bedtime to help him sleep. Sam's sleeping history prior to this was his being awake from midnight or 2AM until morning. Ever since Christmas, he has fallen back in this pattern of waking up, except this time it is with very agressive melt downs. Sometimes I think they stem from dreams, other times I don't know.

So, my transition for Sam's bedtime is forming in my head, but Zach also wants my time to listen to him read his Series of Unfortunate Events book.

I don't have time to make a plan, as Sam had already started. Started... what I sometimes call his "full body stim" time (while you won't find this definition under classic stereotypic behaviors of stimming). Sam's stimming usually consists of smelling and sometimes licking objects, and tacticle stims, with the need to rub his hands on other peoples skin. The more vestibular stims are his "full body" ones. Sometimes this is just pacing back and forth while talking, talking, talking (could seriously last hours while he completely retells his most recent movie in story form but with exact word detail), or sometimes he does what we call "head ramming", because it isn't just head banging, as he gets running starts and rams his head into whatever object or person repetedly. The latter is what occured tonight for almost an hour and a half. I could not stop him tonight until he crashed from exhaustion. Deep pressure didn't work, his weighted blanket didn't work, his "soft area" of his room didn't work, the big pillow/bean bag method didn't work. It went on and on and on. He was running all over the house ramming his head.

The fact that he hardly ever feels pain didn't help tonight, as several times I had to stop him from ramming his head into the hard doors, walls and bed frames. He just doesn't seem to care what happens to his little body when he engages in this.

After a full hour and a half of trying to keep him safe, and keeping his brother in a seperate part of the house self entertaining, we were both exhausted. His little body finally collapsed on my legs on the couch. As he instantly fell asleep, I just sat there looking at every little bone in his body, because you really can see them. He gets that from his dad. I was utterly amazed that something wasn't broken from all the thrashing his body took during this episode.

All I can think of when we have these episodes is how can we protect him? How can we keep him safe, and his brother safe when these incidents occur. Tonight, in my attempts to restrain him a couple times to keep him from banging his head on the corner door frame, he bit me. I really don't think he knows he is doing it until well after the fact. But while it is going on, there is some need trying to be fufilled, I just wish I knew what?

My Shalom for the night was gone. Or was it? Maybe Sam needed to have this "head ramming" episode so that he could have peace for himself tonight. Maybe he needed to get this out of his system so he could calm himself to sleep? That I do not know. What I do know is that I still respect his needs, and will never hate what he does, even though it is exhausting. It is this video below, from an autistic person whom I have learned much from over the last year from her blog, that helps me understand. While Amanda is non-verbal, she can definitely communicate. You must watch this video she made last month in response to "Ashley X" . Watch it in its entirety to get the full understanding. Amanda translates towards the end of the video. It has helped me to understand in a much deeper way what stimming does for Sam, why it is so important for him to react to every little part of his environment. Perhaps the most important reason, as Ashley writes, is that we don't need answers for why he does some of his things, we just need to understand. That will give him and us the Shalom we need without an answer.




A Twist of Faith
Shalom doesn't just happen, it requires us to seek it through understanding others and the world.
Seek peace and pursue it! ~ Psalm 34: 14

5 Alive!!! (Journal#55)

It's all about 5! Happy 5th Birthday Sam!

This is journal entry 55, it's Sam's 5th birthday, so I will honor him with 5 things he has given and inspired us with:

1. Sam has taught us how to accept everyone and love everyone for who they are. Even though I was a teacher for many years, I thought I knew everything about diversity, accepting others, working and respecting children of different abilities. But... I really didn't, until Sam taught me. He showed me that it is okay to learn differently, it is okay see life differently, it is okay to be you. And when you accept yourself, I have learned that accepting others comes even easier.

2. Sam has shown me that you need to take time for the little things in life. I am a "doer, gotta keep going, gotta get everything done, because you have to accomplish big" person! When you are like that, you forget to notice the little beautiful things in life. While Sam's incredible attention to detail can drive me crazy ( like when it is 30 below zero, and I just want to walk from our car into the store as quickly as possible, but he has to follow every little crack in the pavement or pick up every little icecicle along the way), it can remind you of the beauty life gives us. Perhaps it was our vacation to Yellowstone, that I really began to appreciate his ability to notice and find every little thing. I would be looking at the whole beautiful scenery on our travels, and it would be Sam that would stop me and pull me close to the ground to spot a little ant crawling up a beautiful flower growing along the path. It is the little things in life that help us get to the big things.

3. Sam has reminded me to take time to listen to the music. Again, teaching me to slow down and relax. Music has been Sam's thing since birth. Before we could ever understand one word from Sam, we always knew the tune of what he was humming. He can reproduce any sound (literally, including the grinding sound of our coffee machine) and any song after only hearing it once. Sometimes when he is in the middle of the worst melt down, I just throw on the IPod with some tunes (usually Backyardigans "Secret Agent"), and he completely changes and calms down (wish it worked every time). Many times, in any foul mood, he will turn it around as soon as he hears music. We all need to stop and listen more, and enjoy the music of life.

4. Sam has helped us accept autism. We are "at peace" with Autism, as Susan Senator so eloquently wrote about in her book, Making Peace with Autism. He has taught us that he is autism, he is autistic. It is a part of who he is. We can't hate Autism, because that would be hating a part of who he is.

5. Sam has given us 5 years of 4 L's. He has allowed us to love him unconditionally, to enjoy his laughter (even though we can't laugh with him), to continue learning about how he thinks and learns, and to live life fully.

We love you Silly Sam. Happy Birthday!

A Twist of Faith
As I said, Sam has taught us how to love even greater with acceptance like no other. No other, than like that of Christ's that is. Look up His greatest commandment again, remind yourself of what He calls us to do. For if all people upheld this scripture, it would be an easier place in this world to have Autism, to be a parent of an autistic child, to not worry about being judged by others on how we take care of our little boy in a world that can seem so overwhelming to him most of the time. John 13: 34-35

What's so wrong with that? (Journal#54)

Saturday Sam had his "friend party" for his 5th birthday, even though it is not until Friday. Sam had clear direction on what he wanted for his party.
"C tan tum"
" D tan tum"
"E tan tum" (as he listed who would come)
"Dat's all"
"Nobotty ting happy birty" (and absolutely NO One will sing happy birthday, he hates that, he always says it hurts his ears).
"We hab piwut sip on da beat too. Hab to hab a beat." He thinks we have to have the party on a beach where there is a shipwrecked pirate ship. Hmmmm...that one we will need to modify.

Simple enough, we can do everything else! Two of the three have autism also, and are in his class at school. One is a little 3 year old neurotypical friend from church. I will call her Grace. Because, that is what she provided all day...Grace. Only one of his autistic friends was able to come. It was a perfect size. Three counting Sam. There is that little rule of thumb you know, that you should only invite one child per year. So at this stage of the game, 5 friends might be appropriate. We did not know all of the needs of Sam's autistic friends, so we decided to keep it low key and at our house and stick to what was best for Sam and everyone.

The theme was a pirate theme, one of Sam's interests of late. We went on a treasure hunt all over the house to find parts of our costume, the hat, the earing, the eye patch, the parascope, and the last thing was the treasure itself. We stuck with Sam's wishes to not sing happy birthday. We had a ratio of 3 adults to 3 kids. Sam had 3 or 4 melt downs that included screaming and throwing things. Brent gently took him to another room each time, and I continued on the treasure hunt with the other kids. It made me kind of sad that he was missing his own party at times. He would always come back and join us when ready, and the other two didn't even know he was gone.

After the party, his school friend went home, but "Grace" the 3 year old friend from church stayed to visit with her mom and us. Sam had quickly set up his fort. He takes his toys and lines them up and builds them to enclose him, along with a door. He has obsessed about doors since 2. After he creates this little fort of toys. He sits in the middle of it and won't let anyone come near him. He does this all day with his brother usually, and at church as well.

Here we go again. Poor Grace just wanted to come in and play with Sam, but no. She was so gracious. She kept coming over to his door smiling. "Sam can I come in?" "Sam can you play with me?" He would growl "NO!" She would smile, say okay and go play with something else for awhile. She would entertain herself by getting toys from the toyroom and bringing them out to where Sam was. She would parallel play beside him until her next attempt. However, when she wasn't looking, Sam would snatch her toys she brought in and add it to his walls, as if to build them up higher. If she found out before I could get to Sam to give them back, again she would graciously smile and say "It's okay Sam, you can have it." Wow! Gracious for a 3 year old. She just wanted to be with Sam so bad, she did not care. Times like this, I wish he were more neurotypical, to experience the joy of playing with a friend and sharing that love. What's so wrong with that?

I also get a little weepy, when I think back to all of the friend parties we have had for his big brother. We could plan them most anywhere with anything, animal parties at the Nature center, Chuck E Cheese, bowling...Sam very much so wants those things too. He expresses it, but it is too overwhelming for him at times. When he had his melt downs on Saturday, I kept flashing back to Zach's 5 year old space party and his friends. Zach laughing and being the center of attention and loving it. Zach wanting to play with EVERYONE. I wanted Sam to feel that too. What's so wrong with that?

Yes, Brent and I make accomodations for Sam to help him and do what's best for him. We will always do that. But as much as we love him and do that for him, we too are human, and I believe it is okay if we wish and wonder what it would be like if he didn't have Autism. We are not dehumanizing him in anyway by doing so, it is just us thinking. If people don't ever question the opposite of who they are, they don't ever appreciate or have a deeper understanding of who they really are. What's so wrong with that?

A Twist of Faith
God made us all human. And for that I am forever grateful!
"All have sinned and fall short of the glory of God" (Romans 3:23)