I am so thankful for today. We went to an all day TSC conference at UCLA, which is a long two-and-a-half hour drive from our house. I am completely mentally and emotionally exhausted right now. I am even typing half-blind because my eyes just couldn't stand my contacts any more. I am completely ready for bed, and headed there as soon as I'm done typing this post, but I needed to write this before my head hit the pillow.
We heard so much great information today shared by some of the leading doctors and researchers in the field. It was so much, I hope I can retain everything. We met some other parents who have children with TSC, amazing parents who were so open to sharing what they have learned along this long journey. For that I am thankful. We were protected from an accident on wet roads as we left UCLA. It was obvious that God put a buffer around our car as a speeding SUV lost control directly behind us and fishtailed within feet of our front bumper. How that car managed to come in front of us before fishtailing instead of sideswiping us was only by God's hand. Isaac and I went out to dinner on our way home. A much needed date that had been a long time coming. But the best part of today was that three other people were there for Joel (and any other future clients they may have with TSC, which I would highly recommend this company to other local families - email me and I'll give you their info). Two are his new ABA therapists and one hopefully will be soon. How incredible to have a large part of our team there, learning the intricacies of TSC. Tuberous Sclerosis is such a complex disorder and I know it will be so helpful to Joel for the team working with him to understand more about this condition. I can not even put into words how thankful we are that they were there, how thankful we are for this company that truly cares about Joel and our family, and how thankful we are for the incredible individuals that make up this company.
We are feeling very cared about and supported as we venture into this next stage of life. We are blessed.
With love and thankfulness,
Joel's Mom
Saturday, November 17, 2012
Friday, November 16, 2012
Survival Mode
I have been thinking about this blog a lot lately. So many things have changed in Joel. So much has gotten harder. He has Autism. It has changed him, changed us as well. I really need to start posting again. Updating. I want his story to be full and complete here. I need to work through my thoughts and feelings...
But that's just it. I don't want to think about my feelings, my emotions. I think about sitting down to write, and after several moments of trying to figure out how to put everything, anything, into words I find it's easier to give in to a distraction like the kids or the house. I sit down at the computer to try and force myself to write and somehow find myself mindlessly browsing Facebook, avoiding facing my emotions without even thinking about it. Something, anything but thinking about my feelings. Tears come more easily than I am comfortable with. Autism is hard. Behavioral issues are hard. Life is hard. Sometimes I feel like I can't write out of pure exhaustion. Sometimes it's because I have a million words to say, but can't figure out how to say or write a single one.
So instead I just keep looking straight ahead, putting one foot in front of the other. I call it survival mode. The problem is that I want to do so much more than survive. I just don't know how.
Every time I look at this blog it hurts. It hurts because I look back at old posts and hear the excitement I felt at the progress he was making. Progress that has been ripped from us in so many ways. I look back and see the difference in the number of posts between 2008 and 2009. That was about when his seizures started coming back after not having them for a couple of years after his surgery. That was when the Autism started creeping in, slowly stealing what little communication he had and locking him into his own little world. That was when it got hard to write.
Things are starting to get better. Joel just started ABA (behavioral therapy) last week and we now have an awesome support team. We have been doing parent training with the best of the best since June. It has forced me to face the Autism, which was hard at first, then good. That's how I was able to write my last post. But now that the ten-plus-hours a week of ABA has started, and at least one of the therapists is a counseling intern (both of Joel's therapists are psychotherapists), I am having to face my thoughts and feelings in a whole new way. It's oh-so-hard, but I know it will be good in the end. I have so much to be thankful for, and while I am going to try to process my thoughts, feelings, and emotions, I am going to choose to focus on the good.
With love and emotions,
Joel's Mom
But that's just it. I don't want to think about my feelings, my emotions. I think about sitting down to write, and after several moments of trying to figure out how to put everything, anything, into words I find it's easier to give in to a distraction like the kids or the house. I sit down at the computer to try and force myself to write and somehow find myself mindlessly browsing Facebook, avoiding facing my emotions without even thinking about it. Something, anything but thinking about my feelings. Tears come more easily than I am comfortable with. Autism is hard. Behavioral issues are hard. Life is hard. Sometimes I feel like I can't write out of pure exhaustion. Sometimes it's because I have a million words to say, but can't figure out how to say or write a single one.
So instead I just keep looking straight ahead, putting one foot in front of the other. I call it survival mode. The problem is that I want to do so much more than survive. I just don't know how.
Every time I look at this blog it hurts. It hurts because I look back at old posts and hear the excitement I felt at the progress he was making. Progress that has been ripped from us in so many ways. I look back and see the difference in the number of posts between 2008 and 2009. That was about when his seizures started coming back after not having them for a couple of years after his surgery. That was when the Autism started creeping in, slowly stealing what little communication he had and locking him into his own little world. That was when it got hard to write.
Things are starting to get better. Joel just started ABA (behavioral therapy) last week and we now have an awesome support team. We have been doing parent training with the best of the best since June. It has forced me to face the Autism, which was hard at first, then good. That's how I was able to write my last post. But now that the ten-plus-hours a week of ABA has started, and at least one of the therapists is a counseling intern (both of Joel's therapists are psychotherapists), I am having to face my thoughts and feelings in a whole new way. It's oh-so-hard, but I know it will be good in the end. I have so much to be thankful for, and while I am going to try to process my thoughts, feelings, and emotions, I am going to choose to focus on the good.
With love and emotions,
Joel's Mom
Friday, October 26, 2012
When Your Child Can't Talk
It is pretty high up on my list of most difficult things in life. It breaks my heart daily. It stinks. It is hard in so many ways.
IT is not being able to talk with my seven-year-old son. Oh, I can talk to him. I can talk at him. But I can't talk with him.
Sometimes he talks to me with his eyes. They are trying to tell me everything. Sometimes they do. Like when he's happy. Or when he's sad. Or when he is loving me. But they can't tell me what he's thinking. They can't tell me where it hurts or exactly what he wants.
Sometimes his lips move with no sound and it looks like he is forming words. But try as I might, I usually can't make out a single one. It hurts to know he is trying to tell me something and I can't understand.
Sometimes he squeals, or says "Daddy, daddy, daddy" over and over, or says "tatatatatatatatatatatata". I wish I knew what it meant beyond being excited or upset.
Is it because he has autism? Or because they removed the speech portion of his brain at fifteen-months-old? Did the speech not properly re-map to the other side of his brain? Is it because of epilepsy causing damage to his brain? Or is it because of the benign tumors in his brain caused by Tuberous Sclerosis? Only God knows. Only time will tell.....or won't.
All I know is that when I look deep into his eyes and he gives me a huge toothless grin, my heart melts into a puddle. I love this boy. And that makes it all worth it.
With love and heartache,
Joel's Mom
IT is not being able to talk with my seven-year-old son. Oh, I can talk to him. I can talk at him. But I can't talk with him.
Sometimes he talks to me with his eyes. They are trying to tell me everything. Sometimes they do. Like when he's happy. Or when he's sad. Or when he is loving me. But they can't tell me what he's thinking. They can't tell me where it hurts or exactly what he wants.
Sometimes his lips move with no sound and it looks like he is forming words. But try as I might, I usually can't make out a single one. It hurts to know he is trying to tell me something and I can't understand.
Sometimes he squeals, or says "Daddy, daddy, daddy" over and over, or says "tatatatatatatatatatatata". I wish I knew what it meant beyond being excited or upset.
Is it because he has autism? Or because they removed the speech portion of his brain at fifteen-months-old? Did the speech not properly re-map to the other side of his brain? Is it because of epilepsy causing damage to his brain? Or is it because of the benign tumors in his brain caused by Tuberous Sclerosis? Only God knows. Only time will tell.....or won't.
All I know is that when I look deep into his eyes and he gives me a huge toothless grin, my heart melts into a puddle. I love this boy. And that makes it all worth it.
With love and heartache,
Joel's Mom
Friday, January 6, 2012
Well, Hello There!
It's a new year. I've just finished giving the blog a whole new look. And I'm back!
I've been meaning to start blogging again for a few months now. It has been on my heart that I need to be Joel's voice as well as the voice of our family. I need for people to understand how hard we try and how much we all go through. I am tired of getting looks. I am tired of people assuming that we just "let" Joel have his way. I would like to give friends, family and strangers a window into our lives in order for everybody to have a better understanding of what families with a disabled child go through. And I also want you to fall in love with the sweetness that is in Joel's heart, like I have. My only problem is that there aren't enough hours in the day, but I will do my best to post at least on a weekly basis. Thank you for being here, because I know if you're here then you care about Joel and our family, and for that I am grateful.
Goodnight for now, friend.
With loving care,
Annie
I've been meaning to start blogging again for a few months now. It has been on my heart that I need to be Joel's voice as well as the voice of our family. I need for people to understand how hard we try and how much we all go through. I am tired of getting looks. I am tired of people assuming that we just "let" Joel have his way. I would like to give friends, family and strangers a window into our lives in order for everybody to have a better understanding of what families with a disabled child go through. And I also want you to fall in love with the sweetness that is in Joel's heart, like I have. My only problem is that there aren't enough hours in the day, but I will do my best to post at least on a weekly basis. Thank you for being here, because I know if you're here then you care about Joel and our family, and for that I am grateful.
Goodnight for now, friend.
With loving care,
Annie
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