Jackson had a fabulous time at the circus and handled it well.
I'm thrilled that he and Dan had this time together.
It's nice to have him growing up, maturing and handling more!
Friday, January 30, 2009
Sunday, January 18, 2009
Behind his eyes
There are moments when I look into my sons eyes and see something more. At times, there is something so clear and so knowing in his eyes; as though he is at peace with who he is. That look should bring me contentment. I know it should, but it doesn't. It's a look that is both beautiful and heartbreaking for me.
Heartbreaking because, I want so much more for him. I hope for so much more for him. Beautiful because, contentment is not easily achieved for many, and there it is in my sons eyes. There is something to be learned there. I know that God must be teaching me through this.
I struggle to be content with who he is, struggle to accept that there are many things he cannot do. This, of course, is balanced by pure love; pure love and pride in all that he achieves. I celebrate victories in everyday occurrences that other parents take for granted. I value small steps toward big milestones that I never knew existed. I believe, beyond hope, that there is greatness in my sons future. That greatness may be unorthodox, but it will be great nonetheless.
So next time I see that look. I'll try hard to see it with a light and grateful heart; and remind myself of the greatness that lies within him.
Heartbreaking because, I want so much more for him. I hope for so much more for him. Beautiful because, contentment is not easily achieved for many, and there it is in my sons eyes. There is something to be learned there. I know that God must be teaching me through this.
I struggle to be content with who he is, struggle to accept that there are many things he cannot do. This, of course, is balanced by pure love; pure love and pride in all that he achieves. I celebrate victories in everyday occurrences that other parents take for granted. I value small steps toward big milestones that I never knew existed. I believe, beyond hope, that there is greatness in my sons future. That greatness may be unorthodox, but it will be great nonetheless.
So next time I see that look. I'll try hard to see it with a light and grateful heart; and remind myself of the greatness that lies within him.
Tuesday, January 13, 2009
the Circus is Coming!
One of the privileges of being in 5th grade at CES is getting to go to the Shrine circus. This is the year for Jax. I'm a bit apprehensive about this trip, as we haven't tried the circus with Jackson since I was pregnant with Cal (which would have been January of 2003). That time was heartbreaking. Jackson really wanted to be there and see the show, but it was truly entirely too stimulating for him. We took him out in the corridors and he'd peek through the steps into the lights and sounds. He didn't want to leave, but he didn't want to go back in either. It was heartbreaking; I remember all of us leaving in tears.
That was a long time ago, and Jackson has enjoyed several events at the Coliseum since: Disney on Ice, Playhouse Disney Live, several Komet hockey games, even the loud, "Walking with Dinosaurs". So, we're going to take our chances and let him enjoy this "rite of passage" with his 5th grade friends. Just to be on the safe side, Dan is taking the day off work to be with him. I'm really hoping they both have a good time!
That was a long time ago, and Jackson has enjoyed several events at the Coliseum since: Disney on Ice, Playhouse Disney Live, several Komet hockey games, even the loud, "Walking with Dinosaurs". So, we're going to take our chances and let him enjoy this "rite of passage" with his 5th grade friends. Just to be on the safe side, Dan is taking the day off work to be with him. I'm really hoping they both have a good time!
Saturday, January 10, 2009
Louder than Words
A good friend of mine lent me this book. She read it (so did Jackson's 5th grade teacher) and I hesitantly took it. Jenny McCarthy kind of creeps me out. I saw her on Oprah, telling her autism story, probably 3 years ago. She seemed "New Age"-like and I remember thinking, if I had your resources maybe Jacksons Story would be a different one. Anyway, I took the book and I've been reading it. I have been surprised how much it resonates with me. I'm also saddened by it in a way. Her son is probably 3 years younger than mine. By the time Jenny came on the scene, I had been there and done that, know what I mean?
Reading it reminds me how diverse the autism spectrum is. Jenny McCarthy's son Evan literally seemed to fall off a cliff into autism--yes, she writes about things not being quite right all along, but he began with these life threatening seizures and fell off into the abyss that we know is autism. Jackson actually started on the shores and just waded into autism. Looking back, nothing, not one thing about his developement was unusual, until about 16 months. Even then, he just seemed to stop progressing. He has always been lovingly affectionate, he never lost words. My baby didn't even start the flapping until he was 5 and in special needs school with other autistic children who flapped.
She writes about a metaphorical "window" and pulling her child out of autism through that window; how the window has a time limit. Man, I remember believing that so fiercely. I believed, beyond hope, that RIGHT NOW was the time to FIX my baby. I remember reading everything I could find on the subject--trying the GFCF diet, mixing vitamins into everything imaginable to get my child to take them. The desperate trips from specialist to specialist, and not one of them really knows what is wrong or how to fix it. Mortgaging the house to send him to a private special needs school where they worked with children with autism in very small class sizes. Visiting the geneticist to see if we should chance having another child....
Time is wisdom. Honestly, when Jax was 5 or 6, I lost sleep over the idea that he would wake up one morning and just stop gaining--or worse yet, regress. I tirelessly worked with him, kept him engaged with me, convinced that if he didn't learn it all by 7, it was all over...the window would close and time would stop for my son. Time is wisdom. My beautiful son is 4 years past 7; somehow each day, he continues to grow and amaze us.
I'm not what Jenny McCarthy would probably call a "Warrior Mother" anymore. I've learned to relax and accept my son. That is not to say I wouldn't be first in line for a cure proven to be >90% effective; nor to say I still don't feel a sense of panic and urgency about helping him be everything God intended him to be. I just can, finally, appreciate my son for all that he is. I hope all of you reading this can understand and appreciate that.
Reading it reminds me how diverse the autism spectrum is. Jenny McCarthy's son Evan literally seemed to fall off a cliff into autism--yes, she writes about things not being quite right all along, but he began with these life threatening seizures and fell off into the abyss that we know is autism. Jackson actually started on the shores and just waded into autism. Looking back, nothing, not one thing about his developement was unusual, until about 16 months. Even then, he just seemed to stop progressing. He has always been lovingly affectionate, he never lost words. My baby didn't even start the flapping until he was 5 and in special needs school with other autistic children who flapped.
She writes about a metaphorical "window" and pulling her child out of autism through that window; how the window has a time limit. Man, I remember believing that so fiercely. I believed, beyond hope, that RIGHT NOW was the time to FIX my baby. I remember reading everything I could find on the subject--trying the GFCF diet, mixing vitamins into everything imaginable to get my child to take them. The desperate trips from specialist to specialist, and not one of them really knows what is wrong or how to fix it. Mortgaging the house to send him to a private special needs school where they worked with children with autism in very small class sizes. Visiting the geneticist to see if we should chance having another child....
Time is wisdom. Honestly, when Jax was 5 or 6, I lost sleep over the idea that he would wake up one morning and just stop gaining--or worse yet, regress. I tirelessly worked with him, kept him engaged with me, convinced that if he didn't learn it all by 7, it was all over...the window would close and time would stop for my son. Time is wisdom. My beautiful son is 4 years past 7; somehow each day, he continues to grow and amaze us.
I'm not what Jenny McCarthy would probably call a "Warrior Mother" anymore. I've learned to relax and accept my son. That is not to say I wouldn't be first in line for a cure proven to be >90% effective; nor to say I still don't feel a sense of panic and urgency about helping him be everything God intended him to be. I just can, finally, appreciate my son for all that he is. I hope all of you reading this can understand and appreciate that.
Saturday, January 3, 2009
Ready for School
Jackson would never admit it and if you ask him he will absolutely say, "no school, no school today". But, I think he is ready to go back.
Yesterday, he got out paper and markers and wrote:
Erne Bert se.
He "read" it to me: "Ernie and Bert are swinging"
WOW! What a big deal, I'm so proud of him! It's spontaneous meaningful writing! I'm still shocked by it!
Yesterday, he got out paper and markers and wrote:
Erne Bert se.
He "read" it to me: "Ernie and Bert are swinging"
WOW! What a big deal, I'm so proud of him! It's spontaneous meaningful writing! I'm still shocked by it!
Thursday, January 1, 2009
Laughing out loud!
The other day I was babysitting my sisters 3 kids at her house. It was more than a little bit chaotic, but we survived. At dinner time, the kids were eating chicken nuggets and my nephew asked for ketchup for dipping. In Jackson's world, ketchup and mustard just go together, so we had to get the mustard out too. As I set it on the table, my 2 year old nephew went to put the bottle to his mouth as if to drink it. Jackson thought this was so funny! He laughed out loud and has continued to giggle about it for days. It's such a wonderful gift when he sees the humor in every day occurrences like this one. We'll be laughing for days about the mustard bottle!
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