Monday, June 19, 2006

"Not a cure for autism, but an intervention" (Journal #26)

It will be hard...this week because I will miss Sam big time! We just returned from taking Sam to stay with my wonderful mother and father-in-law this week. We, meaning Zach my 8 1/2 year old, our dog, and myself.

Missing is "our rock", dad, this week. He is in Boston for business for 6 days (and enjoying the Red Sox tonight, as he called to brag that he is in the sky box behind home plate, WHATEVER! :)

Brent's mom knew he would be gone all this week so she called and offered to take Sam so I could have a little breather (Zach is finally at the low maintinence stage). She very quickly said "not that Sam is a handful", but I know what you meant Jan, and appreciate you being nice by giving me a little time with Zach. So...we left at the same time, her from Iowa and us from Minneapolis, so we could meet in the middle, and it worked pretty good this time. The boys took in two movies on the way (THANK GOD FOR DVD PLAYERS). is ALL Zach time this week. Here is why I need to be with Zach this week, alone. Zach was 4 1/2 when Sam was born. He was essentially brought up as an only child since it took us so long to have Sam. He was used to a lot of attention and nurturing. When Sam was born, it didn't change a whole lot for him until about the time Sam was 8 or 9 months.

Sam was an incredible baby up until the 8/9 month time span. Very, very content. Never fussed except when hungry and needed changing. Went to bed great. I do always recall though, that he would rarely keep eye contact with me, or engage in joint attention. And didn't care so much about nursing and the whole bonding idea. He was fine being left alone. I noticed it so much, that I hardly ever left him alone or gave in. Sometimes he would fuss when I would pick him up. He would arch his back when I layed right next to his face with him on the floor. So, instead of letting him win,on his desire to be left alone, I brought his carrier car seat in and used that to drag him with me to literally every room in the house. He may have wanted to just hang out on the floor somewhere or in his bassinet, but I made sure he came with me wherever I was (ironically he never liked his "snuggly", and I couldn't always hold him if doing stuff around the house).

At 8 or 9 months, when he was starting to roll over, or attempt it, some fussing started. Soon thereafter, he started to need a lot more attention, but now looking back, realize there were lots of sensory issues and reasons for his "neediness".

The first things that would make him smile were his brothers crazy antics on the floor with him. Zach would lay with him (and Sam WOULDN'T arch his back as if to get away) and put his hand on Sam's tummy and rock him from side to side. It would tickle and make Sam laugh so!

As Sam became increasingly more mobile and was starting to pull himself up more (13-14 months, didn't walk until 18 months), Zach started to realize that this was a little brother in the making. Zach would go and lay on the floor on his back, and pull Sam on top of his belly. Then Zach would wrap his arms around him tight and pretend to wrestle him. Or Zach would lay his own head on Sam's tummy. Sam would scream with joy. This was their way of bonding. Wrestling is still their main mode of communication today. We later learned from our OT, that Sam's Sensory Integrations issues are what probably causes him to seek those "deep pressure" moments. He can always count on his brother to give him that satisfaction he so needs.

I mention all of this, because even though Sam and Zach are really starting to develop an incredible relationship, it (the autism connection) has been very challenging for Zach. In recalling Sam's first 3 years of life (until we received the official educational and medical diagnosis), I knew in my gut that it was autism, but not in my heart. So the first 3 years was a lot of blaming, confusion, and frustration with myself and how Sam was behaving.

Sam had major sensory issues, from needing socks at all times, to the way blankets covered him, to lights, sounds, smells and even where we were standing in relationship to his body (often times too close). Because of Sam's lack of communication (that was unintelligible), all he did was scream to communicate. If Zach came within 10 feet of him, he would scream a blood curling dinosaur scream, as we called it. If Zach put on his gorgeous smile that said, "I am going to wrestle you", and put his hands up, as if to tickle him, then Sam would laugh. But that was the only way Zach could gain acceptance with Sam.

The way Sam would play was also very confusing to Zach. Sam didn't really start to attempt with any toys, even appropriately until this past year. And that is only because of the amount of intense therapy, floortime Brent and I have spent, and constant interaction with him every time he is playing.

Sam used to just line EVERYTHING up. Usually ordinary, non toy objects. What would cause friction with Zach and Sam would be when Zach would come into a room, not knowing that Sam had been lining up the shoes for the past hour. Zach would simply go and get a pair of shoes to put on (from the ongoing line), and of course Sam's world was crushed as he knew it. Zach had just ruined his work of art. Screaming, kicking, hitting, throwing of every oject in reach...............this was the TYPICAL routine of Sam following these episodes.

Zach made his big breakthrough connection with Sam exactly (well almost) a year ago. I will NEVER forget it. Zach was trying so hard to play with Sam (of course all big brothers dream of having a little brother to play with) in the front yard. Sam was sitting in the grass "arranging" some Rescue Heroes. Zach desperately wanted to play, but at every attempt, Sam would just do the "dinosaur scream" and Zach would take a few steps back and approach again a little later. Zach, after several attempts, in all his frustration, finally dropped to his knees right in front of Sam and said, "Okay, Sam, then just show me what YOU WANT me to do. Show me HOW YOU WANT me to play with the Rescue Heroes. YOU SHOW ME Sam!" And that was Zach's ticket in. He learned that instead of playing the way he himself wanted to play with Sam, that he (Zach) would play the way Sam wanted him to play. IT WORKED!!!!! Pretty good for a 7 1/2 year old. And...even though it is giving in to Sam's routines/rituals/ways, we don't care! It has helped increase their playtime.

We have been keeping Zach informed of every step with Autism. The poor kid has to know, he has to be a part of the therapy, he has to wait in waiting rooms with me each week. He needs to be very much a part of us and autism. We have talked with him, read him books about autism, had him read books about autism, watched shows about autism. All this to begin to help him understand his brother. This past week fused some anger in Zach. Sam couldn't communicate to Zach exactly what he wanted. Everytime Zach would try to interpret, it would lead to the "dinosaur scream" followed immediately with thrown objects. Zach left the situation very upset screaming himself, "I WISH SAM DIDN'T HAVE AUTISM!!!" My heart dropped.

To top it off, last night, Zach and I were watching "Medical Incredible" on the Discovery Health Channel (our family is big into Discovery Channel stuff). They did a preview of tonights episode that featured an autistic boy being "cured"! Zach quickly, with a smile and bright eyes, turned to me and said, "we can cure Sam mom?" "Mom, can we?" as he smiled ear to ear. I thought the show might be about chelation therapy. Something Brent and I will never consider.

While Brent and I have made acceptance and peace with Sam and his autism, it is very evident that Zach is on a different page. He is a child. A beautiful boy, enjoying the summer before his 3rd grade year. An intelligent boy in talented and gifted programming. A curious boy, who wants to understand his brothers brain. A boy who dreams of being a scientist some day.

I stuggle with all of the controversy in the autism community around the word "cure". I struggle just because it seems to tear apart. I have been amazed at the way the "mercury parents" can leave such hurtful comments to parents who choose not to seek cure, but acceptance. I appreciate those who don't judge, but encourage peace, acceptance and understanding, like my friend Kristina at Autismland, or the new Autism Acceptance Project, having its first lecture series in October in Canada, founded by a mother of a son with autism.

I struggle, not just from the controversy, but the own battle it has in my own mind and home.

What if...
... I didn't have to worry about Sam's safety in the busy city that we live in?
What if...
...I didn't have to do so many things for Sam in the same order with the same person who did it originally?
What if...
... I didn't have to worry that he wasn't developmentally delayed with speech and his fine and motor skills?
What if...
... I didn't have to worry about his life skill abilities when he is an adult?
What if...
...I didn't have to worry about how Sam will be taken care of if something happens to Brent or myself?
What if...
... I didn't have to worry that other kids may do something harmful to him because he doesn't understand when they are making fun of him?
What if...
... he could play with his brother who loves him so and they could grow up doing things together?
What if...
...he had a brother who didn't care if he was cured from autism?

See, what I am worried about, is that we don't blame autism for things in our house. We don't ever use that language. We are not afraid to tell people that Sam is autistic. We have to tell Zach's friends that Sam is autistic, because some of them have been starting to distance themselves from Zach and some have told him that "his brother" bothers them. Sam still screams a lot. Sam repeats things a lot, especially around Zach's friends when they are new, and Sam is trying to understand them in his way. They find it annoying. Not just annoying like a typical little brother situation, but annoying that they don't understand him, but annoying that he screams a lot, annoying that he talks loud, annoying, etc...

We have told Zach's friends and then have immediately followed it with "this is why he does this, because he is trying to tell you this....", etc...

We want people to accept Sam and his autism. To tell people he is just Sam, is to not identify who Sam is. Sam isn't his autism, his autism isn't Sam. He is Sam with autism in one. To only identify him as Sam, is to identify only part of who his beautiful mind is. We only know him with autism. We still need to explain to Zach how Sam is one in the same. Zach is only an 8 year old. He is only human.

I too have thrown up my arms and thought, "Damn autism!" Those times when Sam won't accept the answer I give him because it is not what his ordered thinking can hear right now. So he repeats and repeats the statement over and over, getting louder and screaming until the dinosaur comes again, until he gets the answer that fits for him. And yes, if there was a way I could get rid of the behaviors that cause harm to himself, others and objects, I would want that intervention. But that is all I would intervention. Something or someone to step in and help change the course for that moment. Something or someone to step in and allow a "breather".

Brent's mom is my intervention this week. It is going to allow me time with Zach. Time to explain Sam and his autism a little more with just him and I. Time for me to give Zach some much needed time with a human being.

A friend was trying to comfort me last week, when I was feeling guilty about the time we physically spend caring for Sam (and not always Zach). She told me we do stuff for Zach "you let him play soccer, you take him to piano, you do this, this and this for Zach. Zach gets to do lots of things".

But you see, "things" is the keyword, I compensate actual bonding, together time, to keep Zach happy by keeping him busy doing "things" he likes and giving him a break when life gets too much for him with Sam. That is not the same as spending quality time that can never be taken back.

I can not tell you how excited...

...I am to have this week and house all alone with Zach.
...I am to listen to him read his latest book series Guardians of Ga'Hoole that he is into, up in the new treehouse.
...I am to go to a movie with him.
...I am to go for bike rides with him.
...I am to just sit at his soccer practice and games for a change and watch HIM.
...I am to just sit and have a quiet meal with him.
...I am to go golfing with him.
...I am to let him just talk, and talk, and talk to me (which he does so well, he has my mouth!)

...I will be when the two of us and our dog Chicago, make the journey back to Iowa to meet with Sam again!!!! And to rush straight back to the Minneapolis/St. Paul International Airport to pick up dad and be a complete family again!!!!!

Thanks for the intervention Grandma Jan. Much needed, much appreciated, much loved!!!!


Anonymous said...

how very wonderful that you get this special time with zach alone. you need it! he needs it! i'm sure you will both have a ball and then a happy reunion with sweet sam.

Anonymous said...

ooooh, that's a grand post, grand! Mine goodwife is a seamstress who makes beauty pageant clothes and ONE of the reasons she gets out of the house every few weeks or so at a pageant with Lil' Miss Thang is for this very reason: mommy/daughter time where LMT gets LOTS of attention. So does Mr. Munch, who is at home with daddy. I think this is not only Right and Proper but NEEDED.

lovely stuff! Have a great week!

GClef1970 said...

What a beautiful post. I see that we have paralleled thinking in many ways. Thanks for commenting on my blog so that I, too, could enjoy your blog. :-)

Anonymous said...

Hello! You don't know me, but after I watched the Discovery Health show about the "cure for autism" I decided to do some googling of chelation therapy, and I came across your family's page.

You have a wonderful family and gorgeous little boys! You all seem like such strong, loving people.

Have a wonderful day!