Tuesday, October 31, 2006

I don't care what the world thinks...because I have a proposal I'll never forget! (Journal #39)

I don't care what the world thinks...especially on an outing like today. I had a lot of errands to do when Sam got off the bus today. So, I thought we would try going out to lunch together first to set the pace. We went to Culver's (he loves their hot dogs). He was awesome! After ordering he asked me, "I pit?" (pick the table we would sit at). I told him yes, and his eyes were all excited. He walked a little dance around the dining area (which was getting very full as we were there at noon). He put his little finger his cheek, as if to say "hmmmmmm" like his brother does, and then he found a table. I then asked him if he wanted his own ketchup, because he likes to dip his fries in the little cups they provide. He politely said, "no tants". So, I went about my business putting napkins and such on the table, then awhile later, out of the blue he said, "I tare withhhhh (we're working on "th" in speech therapy) mom" (he wanted to share my ketchup). I was more than happy to share.

Next stop, the Scout Shop, to get badges for our Cub Scout den I lead (yes, I am a den mom, never would have thunk it, but is a way of supporting Sam's big brother). Something happened on the freeway on our way there. I do not know what, but watching Sam's face in the mirror while I was driving, was telling me something, I just didn't know what. Every time I would look at him in the mirror, he would scream, "ahhhhhhhhh". His eyebrows were very tight. I asked him to use his words to tell me what was wrong, or what he needs. Another "ahhhhhh"! I was afraid to take him into the district scout office, as it is always a very rigid, "this is the way you do it type of place". I HAD to get the badges though, because our pack meeting was tonight. It is a big night for each den, as they get their adavancements and badges once a month in front of almost 80 scouts and parents. It is a big deal. .....................I gently unbuckled Sam when we got there, like not wanting to tip a basket of eggs. There was a little "grrrrrrr" under his breath. He just sat in his seat, not getting out. I told him to come with mom. Finally it looked like I might get some words! "Too bite. Turn it off" (he was talking about the sun). I showed him how to cover his eyes like we always do to walk in. His face straightened back to a firm look and in we went. He did not say one word the whole time there. It took awhile, as I had to fill out papers on the boys getting the badges, and then get them, and so on. The whole time he just laid flat on the floor by me at the counter. People kept staring at me, like to get him up. But...he wasn't in anybody's way, he was making no sounds, just staring at the ceiling. But...two more people behind the counter had to say, "wow, he must be having a day, wish I could just lay down whenever I wanted" (and then rolled their eyes). Yah, well you know what scout master behind the counter...he happens to love lying on the floor, he does it a lot, he likes the firmness and pressure of the floor, it makes him feel stable, oh yah, and did I tell you he has autism, and that you should just be thankful he isn't running all over this store touching everything, knocking it on the floor and screaming at your customers. (Okay...I didn't say that, but I wanted to.) Outa there! I DON'T CARE WHAT THE WORLD THINKS of our beautiful boy.

And yes, oh my goodness, I had to get one more stop in before we went to speech therapy. Brent is leaving out of town again, and needed his new pants he got a week ago that were getting altered, picked up from Macy's at our mall. Every time we walk into that store (which used to be Marshall Fields, which used to be Dayton's all just in the last 5 year), it is sensory overload for Sam. I was trying to prepare him and myself for it all the way there. But NO..................as soon as we walk in the doors, it hits..........what?..............I don't really know, other than I think it is a combination of the lighting and the mens fragerance counter to name a couple of things. Sam had an instant "drop to the floor, screaming" explosion. I had to get Brent's pants and go. Eyes were glaring at me all the way down each isle, like they were asking me what I was doing keeping him here. But...I had to get Brents pants before he leaves....and this mall is not a quick drive from our house, to try and return, before he goes. I DON'T CARE WHAT THE WORLD THINKS of our beautiful boy.

We get in the car, he starts to calm himself, as he wouldn't let me near him. We try to talk to grandma, and then it is off to speech. While he participated well during his session today, he was straight out the door when we were done, yelling in the reception area as I talked to our therapist, "doooooo, dooooooooo" (go, go).

As the afternoon progressed, and Sam had found other spots around the home to lay on the hard floor in a ball (a way he comforts himself), he started to come back out of his shell. I let him "chill" on the rug he chose by the garage door, and went up to the office to work on the computer. It was there in that chair, that I received the best proposal of my life. Sam had found some flowers in a vase. He brought them up to where I was working, and with the biggest smile, while he stood in front of me holding a few flowers, he said, "marry?". Ohhhhhhhh, THE BEST PROPOSAL IN THE WORLD!!!!! I DO, SAM!!!! I promise to be your loving mom the rest of your life!!!!!!

Friday, October 27, 2006

Wondering why...(Journal #38)

Wondering why...I haven't been able to put to words what I have been pondering about Sam the last few weeks? Could it be because we have seen dramatic highs and challenges ( I don't want to say lows, okay, I just did didn't I?)? The highs have been awesome. His big brother had a sleep over, consisting of 8 very active 9 year olds on his brother's birthday. I was completely stressed about Sam being overstimulated by having all of the excitement. Brent was on "Sam duty" throughout the event. On the agenda for the evening was bowling at the awesome Brunswick Zone. Our last experience trying to do a family bowling night ended up with Sam screaming, running around and hiding under chairs, of which saw the two of us driving around in the van for the next hour while Zach and Brent enjoyed the rest of their game. Needless to say, to our surprise, Sam was the most manageable boy there! He was awesome, even with all the noise, even with the 48 lanes, lazer tag center, arcade, diner, and sports screens! It truly was a tearful, joyful time for Brent and I to witness. Perhaps, the greatest though, was the way Zach and his friends handled Sam. Even though we heard some of the boys saying things like "I don't understand anything Zach's brother says" or "Why does he make sounds like that?", the culminating moment was at the alley. The boys shared two lanes. Five on one lane and four on the other. Sam was a part of one of those. Every time it was Sam's turn, all the boys in his lane would get his bowling ramp, help line it up for him, help carry his ball, then they would all stand beside him to encourage him. They would cheer him and high five him no matter what he did! Sam was loving life, smiles were huge, the high was unreal!

Wondering why...Sam's back to lining all of his toys up. Felt like we had made progress seeing more interaction and play with them instead of his "arranging and lining up" and then walking away allowing no one to come near or touch. Or had we made progress, or was it just that we are hardly ever inside from June-Sept before we have to be in winter? I started really thinking about his play. Yes, we haven't really been playing inside for a long time. We've been out back in the sandbox, where Sam will play for hours if left to do so. So I got a little sad this week, when he kept creating the same scenario with his barn stuff. If I cleaned it up at night, he would wake up screaming that "you brote, you brote it!" He would then proceed to line it up exactly as it was the entire day before. No one can touch it all day! What I thought was progress wasn't. Or do we really need progress in this area? I agree that he has got to allow us to interact with him when I am tyring to lay on the floor and play, I agree that he has to learn to let people play with the toys the way we want to, not on his terms, but isn't it still okay for him to do his arranging/lining up for whatever security reason he needs? Lining up organizes his world. We have taken all toys out of his bedroom this last year, because he would just line everything along the walls of his room all night if we didn't. Even after they are lined up, he still keeps adjusting them, making the objects face directly the same way or whatever. All that remains in his room are a couple of his favorite snuggly animals, his tub of "sensory" kidney beans ($100 worth), and his weighted blanket. So, this week I caved. I allowed him to bring in a few toys at bedtime to line up along the wall. It seemed to comfort him. I put the timer on telling him how long he had, and you know what he said back to me? "I dus need to line dem mommy, den done." (I just need to line them up mommy, then I am done)! I wonder if it is okay, but I don't need to wonder if it makes him feel better, it does!

Just a couple of things I have been wondering about....of which there was so much even more I am still wondering about, and will share in later posts.

Just always thinking, I am...and wondering why?

Wednesday, October 04, 2006

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.