I am thinking about Jackson's upcoming annual case conference. (For those of you with typical children who are deprived this privilege, a case conference is when you meet with teachers and administrators to plan for your child's education for the upcoming school year). I always get a little anxious about these meetings; like I'm waiting for the ax to fall. It's not easy hearing how academically challenged your child is; it's especially difficult to read it in black and white.
So, this year, I am preempting those feelings with my own list of all the gains my son has made this year. I will need these accomplishments to temper the weight of the world as I contemplate how far he has to go. With that, in no particular order, are the accomplishments he has managed since the fall:
*He is making attempts to read words. There is evidence that he is checking through words and using phonics to sound out unknown words.
*He has an increased interested in art. He will draw illustrations and talk about what he's drawn. His drawings are becoming more sophisticated.
*Jackson is using print in a meaningful way. He has intentionally written me notes to make his point even greater. He will record things on the calendar and has even at times, added words to his illustrations.
*Finally, my son is able to match one to one when counting. This skills is helping him to have an understanding of other basic math concepts: addition, more, less.
*Socially, he continues to laugh in the face of the autism gods. In the fall, at a sectional football game, he wandered off from our family, and when I caught up to him and asked him where he was going, he answered, "to my friends". My heart stopped then, as I watched him and his friends "hang out" at the game for the rest of that quarter. At the next sectional game, he asked again to go find his friends.
*This year, he went on a big birthday party celebration and actually rode all night long in the limo without mom. He was calm, and enjoyed being with his friends.
*That initial excursion led to another independent event: going to the circus with a group of friends.
*He routinely greets his friends and their parents at church (with out prompting). He is ever aware of where his friends are.
*He clearly demonstrated his awareness of the wants of others when changing the music in the car to something his friends would enjoy.
*He asks about going to do things with his friends, and will talk about times he's shared with his friends, "You went to Lazer tag with Jhai and Trevor and Seth"
*He initiates activites with family members. He'll call, "Cal come here" or "Mom sit here."
*Jackson follows directives easily. This is exciting, there was a time when he didn't understand a simple command like: "Put the plate in the sink" Now he can follow more complex commands "Take the clothes out of the washer, put them in the dryer and press start." or "Go to the kitchen and get mom a coke"
*He's more vocal in general. I'm often greeted with a "Hey mom" and surprised when he asks about or announces something.
*Amazingly, he has adapted to having seven periods in the day, and adjusted to seven teachers. I record this, because it too, is an accomplishment in its own right.
These are the accomplishments that come to me right now. Absolutely to be celebrated, without question they aren't taken for granted. I am proud of all my son has become and anxious for his future to unfold more triumphs.
Thursday, February 24, 2011
Tuesday, February 15, 2011
Reading!
There are some things we've decided not to focus on with Jackson. For example, learning to tie his shoes. I mean, we figured, plenty of grown men wear shoes that do not need tying, right? I've even been known to say, "Even if Jackson can't read, he has to be able to communicate with others." I do think it's so important for him to know how to read, it's just been something beyond him. Until now.
Last night, Dan came in after bed time with a sparkle in his eye saying, he is reading, really reading. Evidently, Jackson would go back and check through words Dan would call his attention to, and was really looking at the words and reading the Calliou books at bedtime.
There are times, I again reflect on the puzzle the metaphorically represents his life. So many people have a part of the person he is today. Each one represents a piece of the puzzle coming together. The preschool teachers who helped him understand his role in school; Mr. Kempton, the principal with a vision for kids like Jax. Mrs. Markley, for lovingly, gently encouraging Jax. Mrs. Schubert for stretching him outside his comfort zone. The coaches, who helped him feel like part of a team. The kids who have grown up with and around him, supporting him, including him; these kids showing him the way. Our family members and friends who love and support him and us.
"Jackson is reading!" I really want to shout it from the tops of the mountains, I want the world to know. Just like so many other things with Jack, this skill came along quietly in its own time...it's just another ordinary miracle. God truly does amazing things!
Last night, Dan came in after bed time with a sparkle in his eye saying, he is reading, really reading. Evidently, Jackson would go back and check through words Dan would call his attention to, and was really looking at the words and reading the Calliou books at bedtime.
There are times, I again reflect on the puzzle the metaphorically represents his life. So many people have a part of the person he is today. Each one represents a piece of the puzzle coming together. The preschool teachers who helped him understand his role in school; Mr. Kempton, the principal with a vision for kids like Jax. Mrs. Markley, for lovingly, gently encouraging Jax. Mrs. Schubert for stretching him outside his comfort zone. The coaches, who helped him feel like part of a team. The kids who have grown up with and around him, supporting him, including him; these kids showing him the way. Our family members and friends who love and support him and us.
"Jackson is reading!" I really want to shout it from the tops of the mountains, I want the world to know. Just like so many other things with Jack, this skill came along quietly in its own time...it's just another ordinary miracle. God truly does amazing things!
Wednesday, February 2, 2011
"Irritating"
We have blessed by the people who have helped care for Jackson while Dan & I are at work. Starting with his first sitter, "Nana Lesley" who cared for him as an infant (and we were ever SO grateful she did) to our current caregiver Miss Robin and those in between, Jackson and Callahan have both been cared for by devoted, loving people and I will forever be grateful for each of them.
Recently, during a snow day while at Miss Robin's house, Jackson, in typical Jackson form, was obsessed with going to Wal-Mart for a coveted Mario toy. I had promised him, "First Miss Robin's, then we'll go to Wal-Mart". When he's "stuck" on something like this, he needs to be constantly reassured that, indeed, the plan is to go to Wal-Mart for the promised toy. God bless Miss Robin who reassured him more than once of the plan. As the day wore on, his anxiety increased and he went to her and said, "You go to Wal-Mart" to which she responded, "Your mom will take you to Wal-Mart". Of course, he went through this ritual with her multiple times through-out the day, waiting for me to get there and take him to the store.
At some point, Robin's own mom stopped over and while she was talking to Robin in the kitchen, Jackson came in and started his litany. "Your mom will take you to Wal-Mart". God bless her, Robin's mom thought he was talking to her, and she said, "I'm not taking you to Wal-Mart Jackson!" To which Jackson turned, walked out of the kitchen and announced:
"You guys are so irritating"
How Robin managed to suppress her laugh and use it as a teachable moment, I will never know. She called him into the kitchen and told him she loved him and wasn't trying to irritate him.
My reaction: I cannot believe my son used such incredible vocabulary to identify his emotions and then, it was, "Where did he hear the use of that word?" Dan & I both felt a bit guilty wondering if that expression had come from either of us...the mystery was solved the next morning when "Martha Speaks" came on and the dog announced "you are so irritating". I'm really proud of Jackson's ability to internalize and transfer the use of that word. And, I'm forever grateful to my dear friend who managed to use the moment as a teachable one!
Recently, during a snow day while at Miss Robin's house, Jackson, in typical Jackson form, was obsessed with going to Wal-Mart for a coveted Mario toy. I had promised him, "First Miss Robin's, then we'll go to Wal-Mart". When he's "stuck" on something like this, he needs to be constantly reassured that, indeed, the plan is to go to Wal-Mart for the promised toy. God bless Miss Robin who reassured him more than once of the plan. As the day wore on, his anxiety increased and he went to her and said, "You go to Wal-Mart" to which she responded, "Your mom will take you to Wal-Mart". Of course, he went through this ritual with her multiple times through-out the day, waiting for me to get there and take him to the store.
At some point, Robin's own mom stopped over and while she was talking to Robin in the kitchen, Jackson came in and started his litany. "Your mom will take you to Wal-Mart". God bless her, Robin's mom thought he was talking to her, and she said, "I'm not taking you to Wal-Mart Jackson!" To which Jackson turned, walked out of the kitchen and announced:
"You guys are so irritating"
How Robin managed to suppress her laugh and use it as a teachable moment, I will never know. She called him into the kitchen and told him she loved him and wasn't trying to irritate him.
My reaction: I cannot believe my son used such incredible vocabulary to identify his emotions and then, it was, "Where did he hear the use of that word?" Dan & I both felt a bit guilty wondering if that expression had come from either of us...the mystery was solved the next morning when "Martha Speaks" came on and the dog announced "you are so irritating". I'm really proud of Jackson's ability to internalize and transfer the use of that word. And, I'm forever grateful to my dear friend who managed to use the moment as a teachable one!
Monday, December 27, 2010
birthdays, holidays and notes to mom
December has been a whirlwind of shopping, cooking, wrapping, visiting and celebrating. It's been a busy month and now I have a minute to reflect on how Jackson has handled the holiday bustle.
I was thrilled and nervous when he was invited to a special birthday party. The kids were going to ride in a super stretch limo to the movies and then to see the holiday lights at Franke Park. I didn't think he would want to ride in the car without me. Even when he attends youth events he won't ride in the church van without Dan or I. So, I was skeptical and anxious (maybe feeling a bit like he often does). I wrote a social story about the party and hoped that it would ease his anxiety. I'm so happy to report that he did just fine. He had a great time riding around in the "big car" with the kids. He was so excited that during the school day he almost ruined the surprise when he asked a friend in choir "You ride in the big car after school?" Words cannot express how relieved and proud I felt. It was one more step towards independence. One more piece of "normal" returned. Just having him included in the party is such a gift.
He handled our family Christmas marathon like a trooper. For us, Christmas started on the 19th and didn't end until the 26th. He's much better able to self-regulate in noisy crowded situations. This year, he had a litany of gifts he wanted for Christmas: Abominable snow monster, spotted elephant, charlie-in-the-box and dolly from the misfit toys, a big Charlie brown, a big Snoopy and a big Rudolph. Honestly, we worried because even though he was getting everything on his list, he wasn't getting them all at once. We held our breath Christmas morning, hoping he wouldn't have a meltdown over missing a few of the coveted items. Again, he surprised us with his patience and resilience. The only disappointment was that he doesn't get overly excited when he's happy. It's almost a letdown. He opens it like he knew it was coming. In the end, I'll take that.
Today I am taking him for the meningitis vaccine. I'm so not looking forward to it. Earlier as I was otherwise pre-occupied he brings me this note he as written: "Toksin Ts" and announces "Go to tokens and tickets." The note took my breath away. It's the first time he's used writing to make a point. His teacher will be happy to know all her efforts in written expression are paying off. He's beginning to understand the power of print. I'm blessed by this kid, who keeps me guessing and is full of love.
I was thrilled and nervous when he was invited to a special birthday party. The kids were going to ride in a super stretch limo to the movies and then to see the holiday lights at Franke Park. I didn't think he would want to ride in the car without me. Even when he attends youth events he won't ride in the church van without Dan or I. So, I was skeptical and anxious (maybe feeling a bit like he often does). I wrote a social story about the party and hoped that it would ease his anxiety. I'm so happy to report that he did just fine. He had a great time riding around in the "big car" with the kids. He was so excited that during the school day he almost ruined the surprise when he asked a friend in choir "You ride in the big car after school?" Words cannot express how relieved and proud I felt. It was one more step towards independence. One more piece of "normal" returned. Just having him included in the party is such a gift.
He handled our family Christmas marathon like a trooper. For us, Christmas started on the 19th and didn't end until the 26th. He's much better able to self-regulate in noisy crowded situations. This year, he had a litany of gifts he wanted for Christmas: Abominable snow monster, spotted elephant, charlie-in-the-box and dolly from the misfit toys, a big Charlie brown, a big Snoopy and a big Rudolph. Honestly, we worried because even though he was getting everything on his list, he wasn't getting them all at once. We held our breath Christmas morning, hoping he wouldn't have a meltdown over missing a few of the coveted items. Again, he surprised us with his patience and resilience. The only disappointment was that he doesn't get overly excited when he's happy. It's almost a letdown. He opens it like he knew it was coming. In the end, I'll take that.
Today I am taking him for the meningitis vaccine. I'm so not looking forward to it. Earlier as I was otherwise pre-occupied he brings me this note he as written: "Toksin Ts" and announces "Go to tokens and tickets." The note took my breath away. It's the first time he's used writing to make a point. His teacher will be happy to know all her efforts in written expression are paying off. He's beginning to understand the power of print. I'm blessed by this kid, who keeps me guessing and is full of love.
Sunday, December 12, 2010
before autism...
I was cleaning out old pictures today and came across one of my favorites of my niece Cora and Jackson when she was almost 3 and he was almost 2. They are dressed in matching outfits and look more like siblings than cousins. It is precious beyond words.
Funny how a picture can freeze a moment in time; be so joyful and sad at the same time. I think that picture probably best represents life before autism.
It's hard to think about and sometimes hard to remember what life was like then. Jackson's life was this partially written canvas waiting to be filled, with hopes and dreams and so many, many possibilities. Certainly, before autism, I never imagined autism being a part of that picture. I remember praying fervently that he would grow into a man of faith. I remember feeling like he would do amazing, incredible things with his life. I suppose that's the way all first time parent are: full of anticipation and hope. Our lives before autism were filled with joy in all that he did, we were amazed by who he was and intrigued with the possibilities of who he would become.
It strikes me just now how different it was when Cal was a baby. I was so consumed with fear of autism that I didn't spend much time hoping, dreaming, imagining possibilities (I probably make up for that shortcoming now, dreaming big for and with him).
I work hard on seeing the glass half full. So much of Jackson's purpose and message in life is the work of God. Sometimes I just want him to be not so much what he is. I suppose there are qualities in all kids parents would like to leave out. Even as I type this, I feel guilt for these emotions. I don't know who Jax would be without autism. I rarely indulge that line of thought. Instead I try to focus on all the things I wouldn't have without autism. I try to consider how it makes me a better person.
In the end there is a definite mark in my life timeline:
before autism
after diagnosis
It seems like there should be like a vast chasm between the two. Instead, it's a blink of the eye; a turn of the page. It's a sunset and sunrise all in one fell swoop.
Funny how a picture can freeze a moment in time; be so joyful and sad at the same time. I think that picture probably best represents life before autism.
It's hard to think about and sometimes hard to remember what life was like then. Jackson's life was this partially written canvas waiting to be filled, with hopes and dreams and so many, many possibilities. Certainly, before autism, I never imagined autism being a part of that picture. I remember praying fervently that he would grow into a man of faith. I remember feeling like he would do amazing, incredible things with his life. I suppose that's the way all first time parent are: full of anticipation and hope. Our lives before autism were filled with joy in all that he did, we were amazed by who he was and intrigued with the possibilities of who he would become.
It strikes me just now how different it was when Cal was a baby. I was so consumed with fear of autism that I didn't spend much time hoping, dreaming, imagining possibilities (I probably make up for that shortcoming now, dreaming big for and with him).
I work hard on seeing the glass half full. So much of Jackson's purpose and message in life is the work of God. Sometimes I just want him to be not so much what he is. I suppose there are qualities in all kids parents would like to leave out. Even as I type this, I feel guilt for these emotions. I don't know who Jax would be without autism. I rarely indulge that line of thought. Instead I try to focus on all the things I wouldn't have without autism. I try to consider how it makes me a better person.
In the end there is a definite mark in my life timeline:
before autism
after diagnosis
It seems like there should be like a vast chasm between the two. Instead, it's a blink of the eye; a turn of the page. It's a sunset and sunrise all in one fell swoop.
Monday, November 22, 2010
Dear God,
After watching "Letters to God" with the youth group I am inspired to write:
Dear God,
I find myself often asking, "why". So many things do not make sense; so many things I just cannot understand. In the quiet stillness, I sometimes hear Your answers, yet I'm yearning to really know more.
I'm working hard to understand or maybe I'm working hard to accept. I have faith and I'm working on being content with that.
When I break down the "why" it morphs into these other questions:
What is the lesson here?
Who can change and grow through this?
How can I change and grow through this?
What else can there be?
Who can protect us?
And as I type the last question, the answer fills my heart. I know, I know the answer. I know the loving protection and soothing Christ brings. I know the peace. I'm human and too often I forget.
I'm working on me God, but I cannot do it alone. So be with me, guide me, teach me to be more like Him. And while your at it, can you be with my sons?
Dear God,
I find myself often asking, "why". So many things do not make sense; so many things I just cannot understand. In the quiet stillness, I sometimes hear Your answers, yet I'm yearning to really know more.
I'm working hard to understand or maybe I'm working hard to accept. I have faith and I'm working on being content with that.
When I break down the "why" it morphs into these other questions:
What is the lesson here?
Who can change and grow through this?
How can I change and grow through this?
What else can there be?
Who can protect us?
And as I type the last question, the answer fills my heart. I know, I know the answer. I know the loving protection and soothing Christ brings. I know the peace. I'm human and too often I forget.
I'm working on me God, but I cannot do it alone. So be with me, guide me, teach me to be more like Him. And while your at it, can you be with my sons?
Sunday, November 7, 2010
Mimi and Grandpa and the bells
This is just one I have to write down; I don't want to forget it.
Callahan has been to the cemetery with me a couple of times to "visit" my beloved Mimi & Grandpa. The first time he went he was just four, and as I wiped away my tears, my sweet little boy said, "Don't worry Momma, I'm sure your Mimi will be back before it snows". More recently, he had deeper thoughts, "How do you know they can see us mom?" and "Where are they mom?"
During both visits, the bell tower chimed. When he was 4 Cal exclaimed, "Listen momma, it's the angels I can hear your Mimi's bells". At 7, when he heard the bells, he skeptically asked, "What's that mom?" My wise reply, "That's my Mimi telling you good-bye".
Well, today I ran in the "Jingle bell 5k". Part of the race includes attaching little jingle bells to your shoes. [I also run thru Lindenwood Cemetery on Thanksgiving Day every year, Cal knows that's when I "visit" Mimi]. Tonight when I got home, he noticed the bells on my shoes and said, "Oh, did you wear those for you Mimi mom?"
Callahan has been to the cemetery with me a couple of times to "visit" my beloved Mimi & Grandpa. The first time he went he was just four, and as I wiped away my tears, my sweet little boy said, "Don't worry Momma, I'm sure your Mimi will be back before it snows". More recently, he had deeper thoughts, "How do you know they can see us mom?" and "Where are they mom?"
During both visits, the bell tower chimed. When he was 4 Cal exclaimed, "Listen momma, it's the angels I can hear your Mimi's bells". At 7, when he heard the bells, he skeptically asked, "What's that mom?" My wise reply, "That's my Mimi telling you good-bye".
Well, today I ran in the "Jingle bell 5k". Part of the race includes attaching little jingle bells to your shoes. [I also run thru Lindenwood Cemetery on Thanksgiving Day every year, Cal knows that's when I "visit" Mimi]. Tonight when I got home, he noticed the bells on my shoes and said, "Oh, did you wear those for you Mimi mom?"
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