Saturday, May 12, 2007

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.

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.

Psa. 113:3


GClef1970 said...

All I have to say is AMEN.

kristina said...

It's quite a journey for all of us from that first moment---so much easier with friends like you! And our lovely, lovely kids.

KC's Blog said...

What a wonderful turning point for your family :) Reading your blog always fills my heart with hope and joy. I am praying for that turning point with K.C. and I think it's just around the corner. Way to go Sam and Family!

Lora said...

I just love the last sentence of your post, "Receiving the diagnosis was a blessing....." I feel the same way about Griffin and his diagnosis, it was a blessing indeed to opening my understanding of him and his world too. I appreciate that you always write such insightful posts and that you have such a great attitude towards Sam and his autism. You are a great mommy and I am so glad that I have had the opportunity to get to know you and your family.

Sarah said...

I think of Sandis’s diagnosis as a blessing. Before diagnosis I felt so inadequate in my parenting, and I was so very angry, often at Sandis. I was angry at his behaviors and his delays and I had no idea how to get through to him. Sandis’s diagnosis was 7 months ago, but with his diagnosis I gained an understanding of Sandis I’d never had, and a whole lot more patience.

Unknown said...

I can say after all these years that our son's dx is a blessing. It took years for me to say that and mean it but I agree.

Unlinke milemastersarah, I feel very inadequate in my parenting, but have come to realize that God is greater. Greater than anything that I can say or do.

Maddy said...

A diary, journaling or blogging, there's nothing like the passage of time to help with a whole new perspective.
Best wishes

JodiTucker said...

As more are diagnosed with autism and aspergers, I pass along many of these blogs to my teacher friends, my administrators, and anyone judgemental of parents with a child on the spectrum. You lead a life like no other when it comes to parenting and being in society with a special child that looks like everyone else but has a mind that works differently. You and many others have really opened my mind and heart to my students with autism and how I can best teach them when I do see them in music class and on the payground. THANK YOU for all ASD/autism related blogs!!

mysamiam said...

Kristina~ and so much easier with friends like you TOO!!!

Jodi~ thanks for your kind words and being an advocate for our children on the spectrum!!

bigwhitehat said...

My grandfather has a terrible singing voice. He sings loud and strong in that voice every worship time. God likes it.

I am often amazed by the very communion Tiger seems to have with his surroundings. He sees and feels things in ways I don't. I expect him to do the same with God.