He's gone.....(Journal #71)

Our Sam is gone. He is not sleeping in his bed in the room below me. He is not curled up with his bunny blankie from Aunt D, he is not laying with his hands perfectly folded under his head, he is not stomping up the steps to tell me "potty" in the middle of the night. He is gone. Okay, don't freak out. He didn't escape into the night through our security system and all. He is at church camp for the very first time. And...don't worry, he is not alone.

Our denomination has this awesome Grand Camp they offer every year. It is just a "one nighter", but grandparents bring their grandchildren. It is a way for them to get a taste of church camp very early on, and a chance for grandparents to relive theirs.

I should feel fine...as Sam is in awesome hands with Grandma, and...he is on Holy Ground. Everyone refers to our church camp as that, even though it is not named that. Brent and I have been counting down to this day, just like we did the first time Zach went. Partly for a selfish reason, because it is an important place to Brent and I. We love that place, and we have directed for years, a high school camp there for a week in July, and will do so again in a few weeks. We started doing that well before kids, and we used to dream of the day our kids would start coming to camp. Our next dream is the day Zach joins us in high school camp (which I really hope takes forever, because I don't want those years to fly by).

Sam going to Grand Camp feels a little different than it did with Zach. Zach has been the typical first born, independent and fearless most times. But Brent and I aren't sure what church camp will hold for Sam. I don't know that I will ever feel comfortable sending him to church camp alone once he gets old enough to go, unless I could go as his assistant or PCA or something.

Sam gains knowledge of this world, just like all of us, by observing and then applying. He copies and mimicks everything, even down to the way something is said. He caught an episode of "Arthur goes to camp" on PBS kids a couple weeks ago. He has seen it a thousand times, but when the countdown was on for him to go to camp, he started preparing mentally for it. This morning as we were heading out the door preparing for our trip, his sweet little voice said,

"Mom, know morneeeeen at tamp?"
"Yes Sam, there will be morning at camp."
"No mom, you know what do in morneeeeeen?
"What Sam?"
"Wait up lite dis....." (wake up like this) as he then places his hand up to his mouth like a bugle and imitates a bugle call.
In my mind I am flashing back to Arthur and thinking great, he is going to think they will do everything. Sam is notorious for scripting and memorizing episodes. While he didn't go into script, this is what came next (for those familiar with that episode).

"Mom, dirls mean" (girls are mean). On the episode the girls and the guys at camp go at it because they think they are scaring each other in their tents, but it ends up being the bullies from the other camp.

"No Sam, girls are not mean. The girls and boys were both teasing each other in Arthur. That is what you are thinking about Sam, isn't it?"

"Yaaaaaaaaaaah." Discussion ends until we are in van.

"Need a tary tory" (scary story).
"What Sam?"
"MOM, NEED A TARY TORY. HAB TO HAB TARY TORY. TARY TORY MOM. TEEEEEELLL ME NOW."

Oh yah, then in the Arthur episode, they talk about the typical scary stories around the fire. I am just imaging what is going through my little boys head.

"Sam, they don't tell scary stories at church camp. That was just on the show Arthur. You sing around the fire at church camp."

He shrieks a little louder this time, "NOOOOOOOOOOOOOOOOOOO!!!!!! MOM, HAB TO TELL TARY TORY. YOU HAB TOOOOO!!!! NEED TARY TORY. TARY TORY MOM!!!"

Okay, so about now I am thinking, do I tell him a scary story so he has one? Then I think, duh, then he will be scared, he will play it in his head 50 times, then he will be scared at the campfire. So I try to think of a silly story, so I start telling him one. (This happens to be a real story, because it was all could think of on the spot. And...stupid me, this also happens to be the same Sesame Street book that Sam makes me read to him EVERY Monday and Wednesday while we are waiting in the waiting room for speech. He goes and gets the book from the shelf, I read, yada yada yada. ) Dang, he remembers word for word how it goes, I obviously don't, as I am fumbling words together. Look out...hear comes another wail!!!!!!!!! He was gone. Sam was gone, mad, upset. Only for 3 miles in the van.

"Sam, I spy with my little eye..."

That was all it took to bring him back. Now...if Grandma could please bring him back a little sooner too. Pleaaaaaaaaase!!!!!

A TWIST OF FAITH
Sometimes we take for granted those important people in our lives, and when they are gone, we miss them so bad our heart hurts. I know for me personally, that I take for granted all that God has blessed me with, and that sometimes the only time I seek Him, is when I want something back from God. I am soooooooooooo thankful he doesn't treat me that way. May we never forget all that we have been given.
~"For all things give thanks to God" (I Thessalonians. 5:18)

Down Time...(Journal#70)

Have been taking some time off from blogging lately, as that is where I have prioritized some down time. Just been busy with end of the year routines for the boys with a transition to summer activities and planning. While we still have a week left of school, we have been working on IEP's and kindergarten transitions, summer therapy coordination, and big brothers soccer season starting!!!

Here are some updates on plans that have been made for Sam this past month....

Sam's plan for fall is a mainstream classroom for a little more than half of the time, continued OT and Speech therapy at school (pulled out for), and pull out to a special education classroom for the rest. We will also have some aid support if needed (ESP or para's as we call them). Sam is incredibly rule and routine structure bound. Once he figures out the routine of the day, he does exactly as he is scheduled. Where Sam struggles is in learning. His fine motor delays effect his handwriting. His speech effects the way he hears, understands and learns sounds. Phonemic awareness is key to beginning reading, and with his articulation disorder, that will make all of those pre-reading skills a challenge. Hence, this summer we are hitting it hard at home. But back to the fall....our district is still only half day kindergarten, so he will attend PM kindergarten.

Beginning in two weeks, Sam will be transitioning to a new speech program for the therapy we seek privately through a hospital here. For the last two years, he has received a half hour of speech two times a week individually at the clinic. In the new program, he will be one of 4-5 children on the spectrum with two speech/language therapist at the clinic. They will meet now for 2 hours twice a week in the mornings. He will continue in that program straight into and through the next school year. The first part of each session will focus on social skills and language through play, crafts, and learning, and the last half will focus on their individual speech goals. This will be great for Sam and will also work towards many of his IEP goals for school. In settings away from home, Sam has to be cued for everything. His IEP is loaded with goals of simply initiating words with peers to making requests from teachers, etc...We are excited about the new program "outside of school", as it will prepare him nicely for kindergarten in the fall.

This summer, Sam will have the speech program two morning a week, and four afternoons a week will be filled with t-ball and soccer. These are both programs that Brent and I will be able to help him with on the field if needed because of the age level. Our parks and recreation programs are great about adaptive play for special needs. We are excited to see what Sam does. His cleats and shin guards, and glove and hat are ready to start in two weeks!

I will try to update and post about 2-3 times a month throughout the summer. In Minnesota, we have to be outside as much as possible to enjoy the weather during these months, so that means a lot less time inside near a computer.

A Twist of Faith
So down time from blogging has still left my mind twirling with things to write about in relation to Sam and Autism. I have started about 10 posts in my head and as drafts, but down time on the computer is more time with family right now. That is always a good thing.

Just like our walk with faith. God calls us to use our gifts and to serve Him. Sometimes we need down time in one area of our church and faith life, but that doesn't mean we sit idle. It means we pick up our faith and church life in another area. It is about using every thing God has given us to serve Him, and that means different ways of serving, not stopping completely or not doing at all, it means just doing it differently. God is never done using us, for Him there is no down time.

As each one has received a gift, use it to serve one another as good stewards of God's varied grace. ~ 1 Peter 4:10

Scream (shout) for Joy! (Journal#69)

Two years ago this month was when Sam was diagnosed with Autism. It wasn't until a couple nights ago, when I heard Sam screaming with laughter in our backyard, did it dawn on me how far that scream had come.

Two years ago...Sam was three. Sam had a handful of words. Because no one could understand him, his main mode of communication would be screaming. You could see in his little head that he was trying hard to think of a word, it was as if he would try to figure out the word he wanted to say, but didn't know how, and a scream would always replace any attempt at a word. It wasn't the kind of loud ear thrashing scream when a child is hurt, it was more like a sound that came out of his mouth to represent a word. Once we figured out what he wanted or what he was trying to say, we would say the word, as any parent would, and ask him to repeat it. It wasn't until between 3 and 4 years old that he began to understand that concept much better.

When he couldn't find words, even with our constant reminding "use your words Sam, use your words Sam", and after screaming attempts at using words, he would take our hand and lead us to what he wanted. I have beautiful pictures in my memory of Sam grabbing Brent's hand and leading him around to communicate. It was always a gentle sight to watch. Seeing Sam's face light up once Brent would figure out what he wanted, as Sam took his father's hand and placed it on the object he needed, or needed help with.

The screams of fear. Those screams were different and it took me awhile to understand what they meant. Early on, I would blame poor Zach for his screams. They would be in the basement together when I would hear the high pitched shrill, and the idiot mom in me, would assume big brother had something to do with it. We had a video camera in the basement where I could watch when I couldn't be down there. When I finally paid better attention, I realized Sam's screaming had nothing to do with his brother hurting him (intentionally that is). Sam was a pro at creating his own space in which no one else could enter. Often times, if Zach walked within 10 feet of his "invisible wall", Sam would scream and start rolling on the floor like he was dying.
The only touch or closeness Sam would allow with Zach would be wrestling, which met his deep pressure needs.

Now the screams are less, the words more, and the joy always around. Listening to the joy of screams from some backyard frolic and fun took place last week as I was recalling how far Sam has come in the last two years. It is not to say that there are still days that are frustrating for him, and screams will prevail, but it is so much better. It was two years ago this month that we received our autism diagnosis. It was the beginning of figuring out how to communicate and understand Sam's needs. For the three years prior to that, there was confusion, feelings of inadequacy in parenting because we couldn't understand the delays, sensory issues, behavior issues and lack of speech. Receiving that diagnosis was a blessing, because it opened our understanding of Sam and his world.

A TWIST OF FAITH
In our families personal faith journey, it has been so important to praise (or scream) God in the high's and the low's. While He will never forsake us, it is important for us to never forsake God in both good times and bad, when we rise and when we sleep, but to praise Him for all he has done for us on this journey with Autism and that thing we call life.