Recalling things...(Journal#80)

I can easily recall the first feelings I had that Sam was possibly autistic. I can easily recall the first diagnosis, the second, and third...all to confirm that Sam had autism. Watching Oprah yesterday, who did her first show on autism only a few months ago, and followed up already again with Tuesday's episode, made me recall some of those feelings.

Seeing Jenny McCarthy on Oprah yesterday was nice, because it helps get more awareness out there on autism, and helps people understand our kiddos. What was harder for me, was her constant word use of "getting my son back", or that he is in "recovery". I guess for me personally, I have never felt the need to get Sam back, or to cure and recover him. I feel that Brent and I have always accepted Sam for who he is and have worked with him to help him function at times when it may be hard for him. Yes we have had him in intense therapy and programs and speech and OT and tri-monthly medical assessments to monitor his medications. I consider these methods to be tools to help him function in life better, but not change who he is. If you have poor eyesight, you help your eyes by getting glasses. We are just helping Sam along the way.

I guess what I am trying to say, is that we only know Sam as he is. How God blessed him to us. We know nothing different, nor do we want anything different.

Sam has a real hard time with word recall. Some of his worst metldowns occur because he can't recall or remember the simplest words. The other day, we had a 45 minute meltdown because he tried so hard to remember the word cup, and couldn't. And the problem arises when I give him his word choices, and I don't choose the right word he has fixed in his head when he hears it. Here is how it went:

As Sam stood by the refrigerator, he swayed back and forth saying over and over "I need....I need... I need"

I tried to give him some good wait time to recall on his own first, but it is kind of like a balancing act, because if you wait too long before giving him a couple of choices, the meltdown starts, and if you give him some word choices too early, you will have a meltdown because he wanted to think of the word on his own first.

I chose to wait this one out.

"MOM...I need...I need...I need.....oooooohhhhhhhhh" as he then falls to the kitchen floor on his tummy and pounds his fists onto the floor.

I then drop to the floor at his level and look at his face and say "Sam...use your words, not your scream. Mom will help. Do you need food or drink?"

He quickly screams. "drint".

"So Sam, say ...I need drink".

He then rolled over to his back kicking and screaming saying, "no drint".

I am quickly giving some drink choices to see if those are the words he was trying to recall. Of course, to no avail, were any of them right.

Long story short. All along he was trying to say, "I need cup". He was going to get his own water. He just needed a cup.

It just really makes me sad sometimes, when he can't recall simple words like that, and when I see the frustration in his eyes in trying to recall the correct words or phrases. Yes all of those things can make me sad for him, but it never makes me want to change who he is with his autism. I guess you could say I would never "recall" my boy and send him back! :)

A Twist of Faith
Sam and I have been working on some of his vocabulary cards the last few weeks with many of them containing animals. We started this silly game, where Sam says, "What if I was a snate (snake) mom?" and I always follow up with "I would still love you the same Sam."

Well the other day he laughed and he followed with, "Mom, what if I was mouse?" as he knows I HATE them. I gave him the response that I thought he wanted.

I faked a scream, "ooooooo Sam, I would run around the house screaming." Sam very quickly put me back in my place. "MOM!" he said, "You ted you dove me anyway!" (you said you'd love me anyway).

Now tell me he can't recall things! Thank goodness he remembered I will always love him no matter what, and my heart knows that he also knows that God does the same for him.

But Zion said, "The Lord has forsaken me, my Lord has forgotten me." Can a woman forget her nursing child, and show no compassion for the child of her womb? Even these may forget you, yet I will not forget you. See, I have inscribed you on the palms of my hands…. (Isaiah 49:14-16)

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.

A year ago... (Journal #18)

A year ago...we first heard someone tell us what we already suspected. "Your son has Autism." Are you sure? He just likes things a certain way. He lines up his toys instead of playing with them because he is too mature for toys and he is bored (that is what daycare thought too). He just has to have his socks put on first because........or he just flicks his middle finger and thumb together because his great Grandma Cottington used to do that. "Are you sure he isn't Asperger's though?". Hmmmmm....straight up Autism. Okay.

I wish Brent and I could have looked at things so simply. While I had suspected it since Sam was 4 months old off and on, it still slapped us on the face when we heard it from the first psychologist.

When working with the school assessment team for the educational diagnosis, the teacher in me tried to act all cool, like I knew everything. Yah, right. I was freaked. I remember crying to myself in the middle of the night. I remember Brent and I replaying everything Sam did since birth. I would question it saying, no it can't be because he can do..... and then Brent would say, yes he is, he does this and this and this. Brent and I would challenge each other, question each other, try to doubt the diagnosis, but we always came back to "we know better, quit denying it." We both knew in our hearts that he had too many of the symptoms, the lack of speech, routines and rituals that ruled our life, difficulty understanding us, tons of sensory issues, motor issues, loss of skills he had, incredible infatuations with weird objects and things, he drooled, had problems feeding himself, he seemed fearless, pain free, all to name a few. At 18 months he could count to 20. At 4 years old today, he needs help counting to ten and sometimes 12. He forgets colors and things he has known before.

We got the educational diagnosis first. When the school psychologist told us their final results, it was a beautiful spring day. I was teaching in my classroom at school when I got the call (previous contacts had eluded to autism and they had been using the word with us frequently, but it was just getting that final confirmation call....ugh). It was Brent first. He was with Sam. They had just left the last day of his testing. Brent said they confirmed the "autism" word, and that I should call the psychologist myself, to see if that is the same thing I would hear. So, during a break in between classes I called her back. It was true. Brent was hearing things right.

The rest of the day I spent at school, while Brent could not go back to work. He couldn't. He needed to be as close to his little boy as he could. He yearned to start seeing things the way Sam did in his own little world. His eyes tells us everything about him.

After hanging up the phone, I couldn't stay in the classroom in front of my students. I teach alternative education to middle school students. The most challenging students in our building and district. Many are involved in gang (wanna be) activity. While I connected with them, showed compassion and care and love for them, there was still a side of me that could never let them see me cry. Having my co-teacher and EA still in the room, I excused myself then ran to the bathroom to have a good ole cry. As I was coming out, I will never forget that God had me literally run into one of my best friends, confidant and co-worker in the building. R was who I needed to run into. She noticed my face and of course I spilled my guts within seconds. I will never forget our walk around the school building that day. At the end of our walk (when I needed to be getting myself back in that classroom acting normal), R said to me, "Laura, God couldn't have given this to two more perfect people. He knew you could handle it and make great things with it."

"I can handle it?" Yeah right. Like I try to be this great Christian or something. Who am I that would be so blessed to have this happen too? But.....it is there that I stopped any conversation with God about this in a negative light. I really did. I never once blamed God for this neither did Brent. Although I do blame myself still wondering about my pregnancy and care and exposure to the environment that I may have done. My first child was premature and now the second autistic. Maybe I just did not do prenatal care as good as I thought. I know I slipped in a couple extra Diet Cokes with Sam. Oh, who ever knows. What I do know, is that R provided for me that day, something that a mother might do. It felt warm, caring, and she is always sincere, and I will be forever grateful that she was in my pathway as a charged out of the bathroom that day.

While all this was going on with me at school. Brent had resided to take the rest of the day off and go to the park with Sam. I received pictures via our camera phones that Brent sent of Sam playing in the rocks. Brent just wanted to take him all in and love him till the ends of the earth. I have truly been blessed with an incredible man. As the school day seemed to go on forever, I couldn't wait to get home, pick up Zach from daycare and join up with Brent and Sam.

After school was out, I started to panic. Wait, we need a medical opinion, we need a second opinion. How can this be? As I drove to get Zach, I put in a call to Sam's doctor to tell him what we found out and to find out what we do from here. I had to leave a message, but I knew he would call later.

All we wanted to do tonight was to spend time together (Brent and I) to process, to figure it all out. But, as is life with little boys, our night was crazy. Brent was taking both boys with him to Zach's soccer practice while I was going to attend (ironically) Zach's parent meeting for the districts talented and gifted program of which he tested into. On this day, literally, one child was staffed into our districts special education program, while the other was staffed into TAG.

I was waiting in the parking lot when Dr. Kuperman called me back on my cell. I was so upset and still denying, but he was so kind and caring. He said he wasn't real surprised and told us exactly what we should do next. He had referrals ready the next day for speech and OT therapy. He really helped to calm us. He even gave us some suggestions for some thorough medical diagnosis too, and where to seek those.

Finally bedtime. Brent and I could be together alone, to talk, to be sad, to be mad, to wonder, but to smile too. Whenever we talk or think about our two beautiful boys, they just make us smile. Even when it is sad news.

It is a year later. Sam is speaking so much better. We are still in speech and OT therapy, he also receives therapy at school in his early childhood/special education program.

While we have no clue what his future will be like, we do know this...
...that God is bigger than all of this and can take care of us
...that Autism is not a death sentance, it is just another way of life
...that if you keep humor in your life, there is less pain
...that if you keep family close, there is more love
...that if you live for each day, each moment will last forever!

A year ago....we thought our world would end.
Today...we are better, closer, more in love with God, each other, and the world. All because a year ago...we learned to look at the world more differently and unique, through Sam's eyes.

The period at the end of our sentence (.) (Journal #8)

While we have had Samuel's educational diagnosis since last spring, we have also been pursuing a second opinion of sorts...the medical diagnosis. Not that we have been in denial of Autism, not that we haven't trusted the psychologists, school staff, and doctors who have seen Sam, but just to confirm things, or put a period to the end of our sentence of sorts. I say sentence, as Brent and I haven't truly "questioned" the diagnosis, as we have known and understood Sam all too well. We have truly believed since the first mention of it. Yet we did need some finality of sorts.

Our doctor told us he had enough tests and results between school, psychologist and himself that he could make the diagnosis, but really recommended to us last early May, that we seek a medical diagnosis from Fraser Child and Family Center in Minneapolis. He said it is the goldmine of Autism in the midwest. We found that out when we were put on the waiting list for 4-6 months.

That long wait finally came to an end this last Tuesday. Brent's mom was so gracious to lengthen a current stay with us by going to the appointment too. I was very, very, very anxious for this day to come. We were actually in Denver the days before, which was good for me as it kept my mind away from the anticipation. Driving to the appointment on Minneapolis far east side into St. Paul was agonizing enough during rush hour!! Thank God we don't have to do that every day like some people.

We dropped Zach off at school a few minutes early that day, in order to make the appointment in time. We always do a "foot prayer" before he gets out. He kicks his foot up to the front seat, I grab it, then we say a simple quick prayer. Something like "God please shield him and protect him, but also let him be a light of your love and grace." yadyadyada.......but that morning I didn't. It might have been all that was on my mind. I watched him get out of the van in the cold morning air, as the cold streamed off his lips saying good-by out the door. I also felt cold, worried, kind of, as it hit me... we were off to find our period (.). I told Sam to give me his foot, of which I hadn't done before.

The arrival at Fraser was warm and welcoming. It did not have an institutional feel as some places and hospitals. The morning went on, and before we knew it, the testing and assessment was complete.

Grandma Jan stayed with Sam, and Brent and I went with the psychologist and social worker. The psychologist was gentle, clear and empathic. She drew a diagram on the dry erase board explaining Autism, and the Autism Spectrum Disorder(ASD) scale. This helped make things very clear for Brent and I. She told us that there are 5 main areas on the spectrum. One is PDD-NOS (Pervasive Developmental Disorder-Not Otherwise Specified) which is a diagnosis given to individuals who have some Autistic symptoms, but not enough to be diagnosed Autistic. These kids will sometimes need additional services in schools, etc... Two other disorders on the spectrum are degenerative disorders, which they told us, will possibly come off of the spectrum in the future. Sam was not those. Another spectrum category is Asperger's. Sam was clearly not this. For me and my colleagues in teaching, we sometimes refer to Asperger's as "a touch of Autism". These kids are incredibly intelligent and have some of the Autistic symptoms. The last disorder on the spectrum was Autism. They told us that was Sam. Our Sam I Am. That was our period (.) at the end of our very long sentence.

While I can honestly say there is no question mark (?) for us, I can't say that sometimes there isn't an exclamation mark (!). You see, sometimes there is! We look back at Sam since birth, and we can truly exclaim, "that makes sense!" But............to keep things constant, to keep things calm and real.............we can absolutely now say, "there is a period (.) at the end of our sentence." The good thing is, that a period is only the end of a sentence. It is not the end of the paragraph on Sam, not the end of his page or chapter. You see.....it is just the beginning of his best seller called life that will produce many books. Maybe mysteries, drama's, and comedies to name a few. Some will be sequels and some will be cliff hangers. The one true thing we know, is that we will stay a close family, that we will keep Christ first in our lives, and then.......no matter how the last book ends here on earth.........that there really will be a happy ending at the end of this!