Sometimes we dance (Journal #37)

Sam's been kind of quiet lately. Only speaking when he really needs to. When he goes through stages like this, I am intrigued by his face and the way it can speak with expression. He will look at things with great thought, as if seeking clarification from whatever he is looking at. I particularly enjoy the way he interacts with his environment during his "silent times". He appears to examine objects more. He will feel them, smell them, and of course lick them sometimes, but I love when he lays down to get eye level with whatever he is looking at. He will take his hands and raise them to the height of the object. He will lift it, hold it, caress it at times. Sometimes it is like he is dancing.

When Sam got home from school today, I am sure he was ready for his usual routine. In door, shoes off, coat off, book bag down, run up steps, eat. I was not ready for that today. Today I needed to enjoy him in the now. I needed time with him away from our current surroundings. A place where there was not his familiar comfy's to distract him, but a place where we would be distracted by comfort. That place today was Medicine Lake. I wanted a place we could relax by the water or play in the sand, or crunch the beautiful fall leaves. It was a perfect fall day.

I love Medicine Lake. It is a bit of a drive from our home (10 minutes, but we live in Minnesota, so that is far considering there are over 10,000 lakes and we even live across the street from one). This particular lake has every element I love. It has parks, homes, wetlands, nature, Minneapolis skyline, biking, beaches, and lots of nature. This lake became my friend when we first moved to Minneapolis 6 years ago. I drove by it everyday to my teaching job. Some days I would drive by missing our first home in Des Moines, but somehow this lake would bring me peace. When my sister died 3 years ago, I used to go there to walk and reflect. It just always brings me peace. I needed peace and quiet with Sam today. I knew the lake bike trails and parks would not be busy, as it was a school and work day, and at the time we were there, 60,000 Twins fans were at the Metrodome watching them lose in the 2nd playoff game or were at local establishments watching the game. Few would be walking around the lake. It was a peaceful, beautiful day to be at Medicine Lake.

Before we left for the lake, I had to make sure it would be a smooth "out of routine" transition. I knew that I only had to tell Sam that we were going to "his" lake to watch the ducks and eat a picinic, and he would be excited. Sam also loves this lake. Whenever we drive by this same spot, Sam always says "tretty mom, tretty" (pretty mom, pretty). He knows exactly the spot, exactly the bench that he likes. We get to know this lake whenever we are doing his "Listening Program", as we do it while going for rides in the van in the evening.

I looked at him and simply said, "Lunch at your lake?"

He screamed, flapped his hands and started spinning with joy. He was putty in my hands. While I told him to go potty so we could go, I quickly checked his bag to see his note from his teacher today. She wrote that Sam was very quiet, seemed lost, and needed lots of directions and reminders of what to do today. This was no surprise. He has been needing reminders about who people and family members were lately, and how to do everyday things he has mastered before. He has been forgetting who people are, what their names are, and has been talking through us to them. He is particularly close to our pastor, but has been telling me what to say to her and has forgotten that he ALWAYS calls her "pattor eelynn" (Pastor EvaLyn). This past weekend he couldn't remember the names of his little cousins who are a couple years younger than him, so he called them "ditto ones" (little ones) all weekend.

He returned up the steps ready to go on our drive to the lake. He was still flapping his hands, flying around and around. It was almost like he was dancing.

Into the van. Quiet ride. I kept watching him in the mirror. A soft expression was on his face. He too was beginning to feel the peace the closer we got. I could tell.

When we got to the park on the east side, we found a spot near a playground to eat our lunch. We ate quietly. I would try to talk about school, but every time I would ask him who he played with, what he did, etc...he replied each time with "not tell today". When he says this, he really means it. I have tried to push in the past, but it can easily escalate to screaming. But....of course I had to try one more time. No screaming in response, but this time a combination of sentences...."I fordot, not tell today". He was calm and peaceful when he said it, but clearly expressed with his face to me, that he wanted to sit and watch the water, eat his lunch, and for there to be silence.

Silence it was. But it was an incredibly peaceful silence. A couple times I would try to talk...do some "WH questions" (which always gets him talking)...but to no avail, would anything work today. Silence. I believe God wanted me to shut up and enjoy the silence with Sam today. Why can't I ever listen?

The rest of our time at the lake was in quiet. Sam would get up to go explore the beach area. I followed. He watched me out of the corner of his eye. Occassionally testing how far away he could get from me and how close to the water he could go. I just followed along, walking like him sometimes, walking with sometimes. Sometimes...it was like a dance.

One of us would move towards the bike trails along the lake, the other would follow. Sometimes we would stop to pick up a feather, a leaf, a rock. Still no words. Sometimes we would stop and just stare at the water. Just stare at the geese, ducks, and birds. We both knew when to move on, when to stop, and when to honor our silence.

This was a beautiful day. A day of silence. A day of peace. It wasn't like a dance....we were dancing. We didn't touch, we weren't holding each other, we weren't stepping on each others toes, but we were dancing. Dancing all through the lunch hour into the afternoon. I can't wait to dance again with My Sam I Am.

A Breath of Fresh Air (Journal#34)

After a month and a half of waiting, we finally were able to get in and see a behavioral therapist today. One that our insurance covers with a copay (finally)!!! She has her office at the Autism Society of Minnesota headquarters. By the way, check out this adorable picture of Sam on the advocacy page of our state's website, click here! Okay, enough bragging, although I am sad, because he is already well over a year older since that picture was taken. They grow up way too fast!!

Brent actually flew in early this m0rning (he was out of state for work, we do live together:) to make the meeting. I was so glad he could be there. Given his crazy travel and work schedule, he has not missed a meeting. We asked a lot of questions about our concerns with his need for whole body stim, safety issues, communication issues, his agressive behavior when having a melt down that is leading to more dangerous situations for him and others, just lots of things.

She gave us sooooooooooo many things to work on, and Brent and I are excited to begin. It is going to involve a lot of work, redoing some of our picture schedules, creating more "therapy spots" in the home, lots of time, but mostly lots of love, which we have.

One of the things she shared with us, which I will share with my autism friends is a concept that was new to us when using Social Stories. Instead of verbalizing the written story(and doing pictures), she suggested video taping Sam doing the things we are needing to work on. For example, taping him walking safely across the street, or taping him coming to talk to us before "escaping", I mean him wanting to go out to play :). She told us she has been involved with recent studies looking more at the thing that frustrates us most about Sam. And that is he can tell us exactly what he needs to do in situations after only being told once, but he can't apply it for himself. This has been most frustrating for us, but she explained some of the research showing the brain connections with autistic children,and that they can understand and even apply to other people these procedures, but the part of the brain that allows them to see themselves doing the task doesn't always connect, even with a picture of themselves. For them to physically see themselves moving through the actions on video is finding some success with other familes who have tried it. So, we are excited about taking our social stories to a new level of "animation"!!!

She also suggested we follow through with applying for county assistance for developmental disabilities, as she thought we could use more help in the home, and could get him more services. I have put off filling out the the 200 page application (it just seems that long) because we couldn't afford the TEFRA copay, and because the "waiver" waiting list has been closed for two years with no opening date in sight. So, I am now motivated to do that again, and at least get a case worker assigned to Sam as she suggested. I am sharpening pencils as we speak (oh wait, it says use blue ink only).

The last thing she encouraged, was for us to finally look at RDI. I have been poo pooing it this past year. Trying to just read up on it, but again, thought it looked expensive, considering our stupid insurance. But, I know some of you out there have had success with it, and others also by just going to conferences and self educating, instead of paying providers and consultants. I would love feedback on how RDI has helped any of you, and suggestions on going full boar, or just taking peices that work, or whatever suggestions you have. THANKS!!!

It is nice to talk with someone, and the new behavioral therapist gave us that little motivation to get back at it, and she also gave us a breath of fresh air.

"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).

Soooooo.............it 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 want...an 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!!!!

Writer's Block (Journal #12)

Wow! I am surprised if anyone checks back on this site. I haven't been inspired to write (while I am always, still inspired by Sam) in awhile. Everytime I start something, I am distracted, or just don't feel like putting it to words. Lazy, hmmmmm. Truly, I write just to get it out anyway, so maybe the fact that I haven't written for awhile means I am coping. Ya right :)

Actually, I have been busy figuring things out. Taking Sam to therapy for speech and OT two entire afternoons a week starts to wear on you. Okay, how does that relate to my topic sentence. Well.........I am trying to figure things out as I am overwhelmed by the parent autism connections I have. While Brent and I have great support through agencies like Minnesota Autism Society and the Osseo School District, it is at North Memorial Hospital's Rehabilitation waiting/observation room that I find support that can overwhelm me at times. I spend two days a week freaked out and trying to figure things out.

First of all, the staff at North are awesome to say the least. They love and work so well with Sam. What happens is, that you wait with the same group of parents every week all afternoon. Many are there for various reasons, but at the time we go, the majority are also parents of autistic children.

I am trying to figure things out, because sometimes I feel like I am not doing enough for Sam, but yet in my heart I feel we are. There are parents there I have grown very close to, but differ so much in views with Autism. There are those on the whole "mercury" rampage. Those who only do biomed. Those who swear by hours of ABA therapy (one of the most proven successful therapies for autism), and those who have successfully done the gluten/casing free diets (of which we saw NO change in Sam when we did), and last but not least is "doping" (my term, it's Olympic time you know) their children with every vitamin therapy there is, close to chelation as well.

I really don't believe it was the immunizations for Sam. I knew something was well different with him well before the first MMR immunization. Sometimes I still even blame myself, wondering how much tuna I ate, what I exposed him to in utero. I don't know. I will never know what caused his autism, but I do know I am making peace with the fact that he has it. It doesn't mean everything is "peachy keen", but it means we accept it, and Brent and I say okay, let's go forward, not backward.

Okay, so I could go into how it seems the Autism community is becoming divided on the biomed/accept not cure Autism debate. We, however are blessed and very pleased with our accepting of Autism and our own medical community. We have one of the best pediatricians in all the Twin Cities (truly, he has been voted one of the "top docs" the last 3 years). He is a pediatrician who has specialized with children with developmental disorders like Autism and other things like ADHD.

Dr. Kuperman has been there for us with frantic calls after hours, when we were first finding out about the possible Autism through our school district first, when they assessed him. He returns every call the same day. He takes time for Brent and I to come in alone to process and talk. He has referred us wherever needed with the autism, from speech/OT to a neurologist. We have covered all bases. He is so patient with Sam, even when he refuses to cooperate, when he forgets to use his words and screams instead, and when he is literally bouncing off his walls. We trust our medical community. We are getting things figured out. We are providing Sam with between 25-30 hours of therapy week including the speech and occupational therapy and the therapy he receives at school through early childhood special education. We give him lots of our home grown ABA therapy (which by the way, is not rocket science), lots of nurturing and most important, lots of love. We are figuring things out.

And........I guess my "writer's block" is gone. Look out!