Ch-Ch-Ch-Ch-Changes.....Part 2 (Journal #60)

“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.... (This was the beginning of my post on February 28)

Just wanting to do an update since we have started Risperdal. Have received lots of e-mails from those of you who have had experience with it, and we want to thank you all for them.

At this point, we are still in the honeymoon stage. Sam started it a month ago next week. We have our follow-up appointment with our pediatrician to see how things are going next Friday.

Dosing:
Sam is on .5 mg a day in tablet form. We have the option of increasing to 2 tablets a day for 1.0 mg. We started out with low dosing, increasing every 3-5 days to where we are. We have been at this level for a full 2 weeks. If things change, we will then increase to 1.0 mg a day.

The honeymoon:
We have been "amazed" at the difference seen in Sam. We are pinching ourselves and almost trying to be a little apprehensive, so that we aren't too disappointed if the honeymoon ends. The two behaviors we wanted it to address have worked at this point (knock on wood).

Behavior 1~ When he is having melt downs (was averaging 2 major ones a day that would and could last at least an hour each time), he has become very violent, and quickly hurts anyone and anything in his way.
Ch-Ch-Ch-Changes~ We have had only 2 items thrown in a month and nobody else hurt in that time (big brother, usually the target, is very grateful).

Behavior 2~ During his melt downs, he has become self injurous (not uncommon among autistic children), but to the point that they were increasing in degree. They would range from head ramming, hitting self, to throwing himself down the stairs.
Ch-Ch-Ch-Changes~ He has not hurt himself once in a month.

It was incredible in church on Sunday to hear people telling me that they were noticing something different about Sam. He seemed happier they said. They also commented that it appeared as though he were interacting more too. I speculate that he isn't feeling the anxiety and frustration that would lead to the melt downs. Hence, we have a little boy feeling more comfortable expressing himself with others, even if they don't understand him at first and even if he isn't sure how to.

It is not that this is "the miracle drug", and I know medications are not the route for everyone...but for us right now, we are thankful for the Ch-Ch-Ch-Changes. We continue with our other therapies as well, but this has been a change we have waited for.

A Twist of Faith
Just as autism is treated in many forms, behaviorally to medically, there is not just one tride and true method that provides therapy and treatment for this disease. Each child with autism has a variety of symptoms and degrees of each. The point is that there are many ways to work with the whole child.

Faith is the same. There is not just one way that we seek God and worship him. There are many. What is important is that we intentionally seek him out in all areas, including daily prayer, worship and service. We have to be many things to him, not just one mode.

Medications aren't our only source of work with Sam, and prayer, worship, or service can't be the only source of work for God. It must be many combinations in all those areas, and in many ways, that is in constant service. For one to say "I pray", that is good enough, is never good enough (that is just my personal belief). We should always have Christ as our focus in all that we do.

We know that all things work together for good for those who love God, who are called according to his purpose.

-Romans 8:28 (NRSV)

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)

The Autism Story, as told through the movie "Happy Feet" (Journal #43)

"Remember son, the word triumph starts with "try" and ends with..."umph"

~ Memphis (Mumble's dad) in Happy Feet

Twas the night before Thanksgiving and all through the house,
mama Cottington had a meeting , and the boys were not quiet as a mouse.

So off to the theatre dad took them so quick,
to see a new movie, the Happy Feet flick...

...so Brent took Zach and Sam to see Happy Feet, the adorable movie about a penguin named Mumble, starring the voices of Robin Williams and Elijah Wood, on Thanksgiving eve before we had a late night departure for grandma and grandpa's in Iowa. They loved it, and I was incredibly bumbed I couldn't go with them, as we love doing those movies as a family. When Brent got home, he told me I would have loved it, that it had lots of meaning behind it related to someone I know, but he did not elaborate. We then left for our trip to Iowa.

On Thanksgiving night, with all of our nieces and nephews, children, siblings and grandma and grandpa, off to the theatre we all went again. The movie of choice would be Happy Feet again, and of course the boys did not think twice about another viewing of it.

When we had gotten our popcorn and finally sat down ready, Brent looked at me and said that he wanted me to tell him who this movie reminded me of after viewing. He also told me that it would make me cry, especially after I figured the meaning out. Boy did I, and did I really appreciate Brent's synopsis and correlation of Happy Feet to autism. So here is how the movie goes with a direct correlation to Sam and autism.

Mumble, an adorable little penguin is born a little differently than all the other penquins. He comes out physically looking different than all the other penguins as well, when he hatches out of his little egg with all eyes on him. It is very obvious from the beginning that there is something different about Mumble.

The one thing that is the same, or "neurotypical" to penguins, is that they all have a heart song to attract them to their soul mate. It is made evident in the movie that all penguins must have this special ability to sing, or they can never truly belong. Mumble is so happy and content with who he is, not even realizing that it is a problem. He tries so hard to communicate to others that he has a song, but they don't understand him, because he doesn't sing his heart song like everyone else. His song is in his feet. He communicates differently. He taps his feet. He dances. He is happy with the way he does it. Mumble doesn't realize it is a problem until they separate him from group. Like a child with Autism. They try so hard to communicate. Even if they have words, are verbal, as with Mumble, the way they express their words and language still make it difficult for others to understand. While Sam is verbal, we have difficult times understanding what he means throughout the day. He has a hard time communicating to us what he wants, which is a huge basis of his melt downs. He can use his words, but he can't tell me when he is sick. It can be hard sometimes. What the movie makes clear though, is that it is not hard for the child to understand themselves. Mumble is so happy and ready to venture through life. I never doubt that Sam doesn't know what he wants. It is just the way that we understand each other. Now that people can understand Sam more and more, he still repeats so much of what he hears around him and from t.v. He understands when to use certain phrases, but he will expect the same response from you that he heard from "the other situation, show, or conversation he first heard it from." If you don't respond the way he expects, then severe frustration sets in. Mumble didn't understand why singing was so important. He didn't think he needed it. But the other penguins knew he would need his heart song to find a mate later in life.

The movie continues with Mumble's parents, Mempis (Hugh Jackman) and Norma Jean (Nicole Kidman) wanting to fix him. They take him to the most professional pengiun singing teacher in Antartica. Reminds me of the whole "cure Autism", gotta fix it now epidemic. In the movie, Mumble doesn't need fixed. He knows his heart song is dancing. It is others that can't accept him. You can even see the disapointment in his parents eyes. Mumble continues to happily go along, not seeing that anything needs fixed. He is a good sport and tries singing lessons, but to no avail, even the "professional" is done. The discussions/debates in the Autism community about cure, always come back to those of us with comments like, "you have him in speech and OT, you have tried diets, you have him on meds, isn't that wanting to fix or cure?".

No. It is helping him along lifes way. Helping him in areas of his life that can be challenging. Everyone (autistic or not) needs a good nights sleep, so Clonidine has helped him get that, and even helped him focus at school better. Neurotypical people use sleep aides who aren't seeking a cure for anything. We don't want Sam cured, we love him the way he is. To me, helping Sam communicate, learn how to use silverware, or how to use his words is simply helping him through this journey called life.



As Mumble grows older, he is unable to graduate with his fellow penguins and is the very last to lose his adolescent feathers. The gap in his development is very evident by now. Somehow, Mumble never lets this get him down and he is determined to do things the same as his peers. As parents of children with Autism, we see the gap between the things our children can do compared to their peers. While Sam is just approaching Kindergarten, it is becoming more and more evident just how far behind he is. We are staying focussed on the things he can do and celebrating the new things he learns along the way.



In Happy Feet, the fish population is decreasing for some reason, causing starvation among the penguins. The entire Penguin Nation blames Mumbles odd dance for disturbing the natural order. Mumble then sets out to prove them wrong. He discovers that humans are at fault in the chain of life. Through his "heart song", his dancing, he wins over the hearts of humans when captured and placed in a zoo display. His dancing reminds people about how adorable and imporatant these creatures are. Hence, the environmentalists come to the rescue, and thanks to Mumbles soul reaching out, the fish increase with abundance.



Perhaps, if we just accept and love our little ones with autism, knowing there is a beautiful heart song that they each sing, then life will be easier for them and their families. Maybe Sam won't marry like Mumble finally does, when he connects with his soul mate who uses his foot beat for her song, but Sam will be able to share his heart song with us forever. Autism is all about acceptance, awareness, and the human spirit.



A Twist of Faith

The three A's:

Awareness of others~ Jesus made evident through His parables and stories the importance of understanding others, from the women at the well to the hunger of 5,000. Awareness of others needs helps us to understand others.



Acceptance of others~ Jesus accepted everyone no matter what. He healed and touched lives of those whom others could care less.



Awareness and Acceptance of Autism, a must.



One of the teachers of the law came and heard them debating. Noticing that Jesus had given them a good answer, he asked him, "Of all the commandments, which is the most important?" "The most important one," answered Jesus, "is this: 'Hear, O Israel, the Lord our God, the Lord is one. Love the Lord your God with all your heart and with all your soul and with all your mind and with all your strength.' The second is this: 'Love your neighbor as yourself.' There is no commandment greater than these." (NIV, Mark 12:28-31).

It's the little things... (Journal #16)

It's the little things that can make life so awesome. While we had the typical meltdowns this past week, it has been the little things that have made it one of Sam's best weeks in a long time.

It's the little things...like his finally letting me complete the home therapy part of his speech this week without major distractions and tantrum's. The bad part of his rigid routine's, is that once something has been done a certain way with a certain person, he doesn't let it happen. In the past, it is hard to complete tasks like the home speech work. Sam will scream and push me away any time I start to work with his picture cards or words and will say "NO words, Ratel words." (Ratel for Rachel). Or when I correct him the way Rachel (private SLP, above in pic) does in her sessions (because he understands that way best), he gets very angry and will even hit sometimes saying "oty Ratel" (only Rachel). Or he'll sometimes say "word teater!" (word teacher, Rachel), meaning only she can teach him this. Well this week he FINALLY let me and accepted his rewards for completing his task! Usually, anymore, we can't even reward with typical treats or anything, so I have figured out to actually wait until he has started a task he wants to do and then interrupt by using the "First this, then that" trick. It's the little things...that make life so great!

It's the little things...like him finding a friend to play with at the part (oh my gosh, I meant to type park, but that is how Sam would say it, how funny, how I start typing like he talks!) yesterday! We try to take him to lots of places a week where he will be forced to socialize with others and to force him to handle the loudness and business that can sometimes overwhelm him. He has not been a fan of indoor playgrounds like our towns Maple Maze or New Brighten's Eagle's Nest or any McDonalds Playplace. It usually makes me sad to watch him at these places, as he will either cling to me or stay very close and often times cover his ears. I will literally try to push him up in or encourage him to talk to someone. He will also just hang around the entrance of the gym set and just watch others going in forever.

This weekend was great though, Brent and I took the boys to Edinborough Park in Edina. It was only Sam's second time there. He went off right away and came back first with a friend before his very social, 8 1/2 year old brother. Sam was so excited. He brought his friend to us. Granted, it was a younger child, who would do and go wherever Sam told him, but we were so happy it brought tears to my eyes (if Brent wasn't a guy he would have said the same :). It's the little things...that make life so great!

It's the little things...like the fact that he is finally getting sleep and doing so much better at school. I have been reluctant in the past to post it, but yes, Sam is on meds for sleeping at night. While the "biomed/alternative med only" group will "post me" now, I am not afraid to say how much we trust our medical community. And, while others will "ooooooo, they are doing meds......", I would rather do something tested than "stuff" that has no FDA approval or doctor approval. He is functioning much better than before. While not perfect, and never will anyone be perfect, it has been great. He will focus more for us at home, perhaps the whole reason he will sit better to do the home therapy stuff, and follows us better. We all need our sleep. Now that mom is finally getting more sleep too, we are all much better for it. It's the little things in LIFE that can make it so GREAT!