She Says:
The school called today in a panic. Dylan had been happy all day. Then, suddenly had a fever with a temperature of 102 degrees. They rushed him to the nurse and gave him Tylenol.
I have so many emotions... does this mean our treatments are working? He has such a strong resistance to getting fevers, does this mean his immune system is fighting off the virus successfully? Could I be such a twisted mom as to be happy he has a fever?
Or does it mean his body isn't responding and things will just be the same after all the vitamins and treatments we've stuffed down the poor kid?
For now, we'll just have to wait and see.
But, I can't help but wonder, will he be better for Christmas? Will he enjoy it? Can I enjoy it? Why can't December be time off from autism???
Monday, December 17, 2007
Thursday, December 13, 2007
"I'm Sick... "
Today is Day 2 of Dylan on Valtrex and day who-knows-what of cutting out sugar, adding a zillion vitamins in his system, etc. It's going to be a rough road. Many autism moms have told me this is really hard on their bodies to kill off the viruses and toxins.
At school, he told the teacher "I'm sick."
But, he had no fever or outside reason to send him home.
That breaks my heart. I wish I could be doing all this treatment at home and keep him in a bubble. It'd be easier if life could just stop and we could focus on treatment. But, he has school and therapies and lots of other things going on.
I'm finding it harder to not monitor him though. Tonight, I went to a mom's ornament exchange night in my neighborhood. When I got home, I learned Dylan was refusing his treatments and only swallowed half. He usually has to take 3-5 things each morning and night. I hate hearing he only got half. But, I know the poor kid is sick of it. Was it even worth going out? I so badly want results and in some ways it's all I want to think about.
At school, he told the teacher "I'm sick."
But, he had no fever or outside reason to send him home.
That breaks my heart. I wish I could be doing all this treatment at home and keep him in a bubble. It'd be easier if life could just stop and we could focus on treatment. But, he has school and therapies and lots of other things going on.
I'm finding it harder to not monitor him though. Tonight, I went to a mom's ornament exchange night in my neighborhood. When I got home, I learned Dylan was refusing his treatments and only swallowed half. He usually has to take 3-5 things each morning and night. I hate hearing he only got half. But, I know the poor kid is sick of it. Was it even worth going out? I so badly want results and in some ways it's all I want to think about.
Wednesday, December 12, 2007
Fa, La, La..
When Dylan arrived unhappy at school yesterday, his teacher asked him what was wrong. He replied, "I miss my mommy!"
That is pure joy to me! In fact, my best Christmas gift... Fa, La, La!
The fact that he can express his emotions and knows what he wants to say is not something I would have dreamed of two years ago.
Plus, I don't mind being missed.
In fact, I miss Dylan too. So often I'm racing to "fix" him from the world of autism that I rarely get to be in the moment with him. I started this morning chasing him down to start a new pill, Valtrex. He didn't like the taste. We battled it out and both of us won... I got him to swallow it and he got a treat to reward himself. Then, looking at the clock, I realized how late we were running to school. I raced around to beg him to wear clothes and especially a warm jacket. That is often how our mornings go. The few seconds I get to enjoy him are when he crawls into bed with us and snuggles up. (Oddly enough, he is our snuggly child while our daughter wants only chocolate milk and TV... nothing to do with hugs from her parents!)
After school, we usually get a few moments together with a snack. Then, Dylan begins speech therapy, occupational therapy, playing at the park with typical kids, or working with his sports teacher. After any one of those activities, I have to race around the house begging him to take a half a dozen more vitamins. Then, the bedtime routine and a few more moments to snuggle with him and that's it.
All in all, we see each other for such a short period of time when I'm not begging him to do things... swallow something, brush his teeth, answer his sister or mom, etc.
So, yes, Dylan, I miss you too! Love, mom
That is pure joy to me! In fact, my best Christmas gift... Fa, La, La!
The fact that he can express his emotions and knows what he wants to say is not something I would have dreamed of two years ago.
Plus, I don't mind being missed.
In fact, I miss Dylan too. So often I'm racing to "fix" him from the world of autism that I rarely get to be in the moment with him. I started this morning chasing him down to start a new pill, Valtrex. He didn't like the taste. We battled it out and both of us won... I got him to swallow it and he got a treat to reward himself. Then, looking at the clock, I realized how late we were running to school. I raced around to beg him to wear clothes and especially a warm jacket. That is often how our mornings go. The few seconds I get to enjoy him are when he crawls into bed with us and snuggles up. (Oddly enough, he is our snuggly child while our daughter wants only chocolate milk and TV... nothing to do with hugs from her parents!)
After school, we usually get a few moments together with a snack. Then, Dylan begins speech therapy, occupational therapy, playing at the park with typical kids, or working with his sports teacher. After any one of those activities, I have to race around the house begging him to take a half a dozen more vitamins. Then, the bedtime routine and a few more moments to snuggle with him and that's it.
All in all, we see each other for such a short period of time when I'm not begging him to do things... swallow something, brush his teeth, answer his sister or mom, etc.
So, yes, Dylan, I miss you too! Love, mom
Sunday, December 2, 2007
What If?
She Says:
We've started down the never-ending road of biomedical treatment for Dylan. We cram vitamins down him twice a day and give him shots two times a week. We've taken sugar away too, as much as we can.
What do we hope for at the end of these treatments? I'm not sure. Do I have faith to hope for full recovery? Not yet. Do I hope for more time interacting with him? Sure! Do I hope for him to have a better quality of life? Sure! But, what is better for him or me? Too many unanswered questions. Right now, just putting one step in front of the other.
What I do know is we got some amazing lab results that answered many pieces to our puzzle of autism. We know some deficiencies for sure and those we will attack with all our might. After I read the results with the doctor, I had this warm feeling come over me that Dylan would have a better life than we now know. It was one of my highest points in this journey.
I do see progress in his speech, there is so much more that is spontaneous out of him now. On Saturday, he was in the shopping cart at Target and said "I miss my daddy." WOW, that's huge to me... not only was he saying a full, complete sentence, but he was expressing his emotion. I loved it. I wanted to yank him out of the cart and throw him around in happiness. But, I've created enough scenes in stores along this autism journey. I thought I'd spare the other shoppers for once.
My husband miraculously got Dylan to swallow pills. This came after I was pouring them into his juice and milk each day for a week. He looked at me one day and said, "Mom, no more sand in my milk!" So, Eric handed him the pill and said, then swallow. He showed greater faith in him than I saw. I often don't believe my son can take the next step in life, but someone else believes for me. Now, when I tell him it's time to take his vitamins, he says "pills please!" No Joke!
He Says:
What if we really do cure Dylan of autism? Will we even know who he is? Will we miss the autistic traits? Will we want to make the funny sounds we've grown to love and he will no longer need them? Will I be able to open the door after work and yell "Dig a Dig a Dee" and he'll be too typical to not yell it back?
We've started down the never-ending road of biomedical treatment for Dylan. We cram vitamins down him twice a day and give him shots two times a week. We've taken sugar away too, as much as we can.
What do we hope for at the end of these treatments? I'm not sure. Do I have faith to hope for full recovery? Not yet. Do I hope for more time interacting with him? Sure! Do I hope for him to have a better quality of life? Sure! But, what is better for him or me? Too many unanswered questions. Right now, just putting one step in front of the other.
What I do know is we got some amazing lab results that answered many pieces to our puzzle of autism. We know some deficiencies for sure and those we will attack with all our might. After I read the results with the doctor, I had this warm feeling come over me that Dylan would have a better life than we now know. It was one of my highest points in this journey.
I do see progress in his speech, there is so much more that is spontaneous out of him now. On Saturday, he was in the shopping cart at Target and said "I miss my daddy." WOW, that's huge to me... not only was he saying a full, complete sentence, but he was expressing his emotion. I loved it. I wanted to yank him out of the cart and throw him around in happiness. But, I've created enough scenes in stores along this autism journey. I thought I'd spare the other shoppers for once.
My husband miraculously got Dylan to swallow pills. This came after I was pouring them into his juice and milk each day for a week. He looked at me one day and said, "Mom, no more sand in my milk!" So, Eric handed him the pill and said, then swallow. He showed greater faith in him than I saw. I often don't believe my son can take the next step in life, but someone else believes for me. Now, when I tell him it's time to take his vitamins, he says "pills please!" No Joke!
He Says:
What if we really do cure Dylan of autism? Will we even know who he is? Will we miss the autistic traits? Will we want to make the funny sounds we've grown to love and he will no longer need them? Will I be able to open the door after work and yell "Dig a Dig a Dee" and he'll be too typical to not yell it back?
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