A second conversation with the school today confirmed that CJ and AJ will be attending a local charter school with a language immersion program. The program seems to offer everything we wanted so we're pretty happy.
Language immersion was one of the psychologist's recommendations for CJ. It will play on his verbal strengths, giving him an opportunity to excel in that area and also helping him hone that skill and hopefully use it more effectively to mediate his non-verbal weaknesses. We think it will also be great for AJ to have an additional challenge in the classroom to keep him engaged, a plus on both ends. They also have a very hands-on curriculum, which is especially important for CJ in the math department. Both boys seem to be more kinesthetic learners so we love the idea of their doing project-based learning in the classroom rather than an endless series of worksheets.
Another bonus is that I already know and like the Special Education Coordinator at the school. We've already started talking about what he needs and it sounds like it will be good fit. They have a social skills group in place that he can join (a big bonus since it saves us having to search one out) and a SPED teacher that has a solid background in Early Childhood Education to work with him. This is especially important since developmentally they are so different from older kids that you need the specialized knowledge to be able to work with them effectively.
I'd like to say I am worry-free, but I think that is too much to hope for at this point. November through February were hard months and I have moments where I fear we will end up back there. I do, however, feel like we are in the best possible position we can be in right now and that gives us a lot of hope for the future. That is a welcome change from the uncertainty we've been feeling lately.
Wednesday, April 29, 2009
Monday, April 27, 2009
Looking back to the future...
One of the hardest parts of parenting is balancing the strengths and weaknesses of your children. The goal is to help everyone appreciate what they do best while helping them work on areas where they need it. This is challenging in any family, when you add in a child with special needs it takes on an additional dimension. It is easy for their weaknesses to dominate our perception of them, which can impact the family dynamic and cause a lot of internal struggle for everyone.
I had a chance to talk to CJ's teacher last week, which was good overall. She loves having him in her class and was able to talk about all his good qualities. When I asked how he was doing, she said he has his good days and his not-so-good days but he does seem to be making progress. We talked about having him do a short three-week camp in June to cut down on the time away from the structure of the classroom and also did a double-check on whether he is as prepped as he can be for kindergarten. She agreed he is as long as we have the proper behavioral supports in place for him. I left feeling like he was going to be as ready as possible for his new school in September.
As I left, however, it was hard not to compare it mentally to parent-teacher conferences for AJ, in which we generally sit around and talk about everything he does well. There are situations like this every day that highlight our struggles with CJ compared to his brothers. We haven't really focused on potty-training TR because we are still working on it with CJ and it is frustrating as much as we try not to show it. Craig and I love sports and his brothers are off-the-charts on gross motor skills, so we have a house full of balls and baskets and goals. CJ loves this also but it is another area impacted by his disability so he gets upset when he can't keep up. I love having a house full of people and CJ struggles with groups larger than 3. It's starting to feel like our family life is designed purely to bring CJ's weaknesses into clear view.
We all have a vision of our children before they are born, what they will be like and what we will do with them. Loving that vision is easy, stepping back and recognizing who they really are and then loving that reality is trickier because it demands that we be willing to adjust our expectations and perhaps reach outside our comfort zone to do the things at which they excel. This is important not just for Craig and me, however, but also for his brothers who need to see him not simply as the source of problems or frustration, but as an individual with his own strengths.
And CJ does have some wonderful strengths. He is a sweet little boy, who loves to sit and read with us. He loves music and is constantly putting his life into song, creating original tunes and lyrics throughout the day. His artistic side is strong, he already takes great pictures, and he has an amazing imagination, making up wonderful stories for everyone. He is also quite dapper and puts together some great outfits.
The key is to stop waiting for CJ to fit into our vision of what he should be and start to let him create his own. So maybe some dance classes and his own microphone. Time with mom capturing some of his stories on paper would help to record them for posterity and give him a chance to work on his fine motor skills by illustrating them (or perhaps stickers if he's not up to drawing that day). There must be some program out there to let him do some fashion designing that is less girlie than the Barbie option.
Anything that lets us focus on CJ's strengths and the joy that they bring into our lives daily is a welcome step in the right direction. Now we just have to take it.
I had a chance to talk to CJ's teacher last week, which was good overall. She loves having him in her class and was able to talk about all his good qualities. When I asked how he was doing, she said he has his good days and his not-so-good days but he does seem to be making progress. We talked about having him do a short three-week camp in June to cut down on the time away from the structure of the classroom and also did a double-check on whether he is as prepped as he can be for kindergarten. She agreed he is as long as we have the proper behavioral supports in place for him. I left feeling like he was going to be as ready as possible for his new school in September.
As I left, however, it was hard not to compare it mentally to parent-teacher conferences for AJ, in which we generally sit around and talk about everything he does well. There are situations like this every day that highlight our struggles with CJ compared to his brothers. We haven't really focused on potty-training TR because we are still working on it with CJ and it is frustrating as much as we try not to show it. Craig and I love sports and his brothers are off-the-charts on gross motor skills, so we have a house full of balls and baskets and goals. CJ loves this also but it is another area impacted by his disability so he gets upset when he can't keep up. I love having a house full of people and CJ struggles with groups larger than 3. It's starting to feel like our family life is designed purely to bring CJ's weaknesses into clear view.
We all have a vision of our children before they are born, what they will be like and what we will do with them. Loving that vision is easy, stepping back and recognizing who they really are and then loving that reality is trickier because it demands that we be willing to adjust our expectations and perhaps reach outside our comfort zone to do the things at which they excel. This is important not just for Craig and me, however, but also for his brothers who need to see him not simply as the source of problems or frustration, but as an individual with his own strengths.
And CJ does have some wonderful strengths. He is a sweet little boy, who loves to sit and read with us. He loves music and is constantly putting his life into song, creating original tunes and lyrics throughout the day. His artistic side is strong, he already takes great pictures, and he has an amazing imagination, making up wonderful stories for everyone. He is also quite dapper and puts together some great outfits.
The key is to stop waiting for CJ to fit into our vision of what he should be and start to let him create his own. So maybe some dance classes and his own microphone. Time with mom capturing some of his stories on paper would help to record them for posterity and give him a chance to work on his fine motor skills by illustrating them (or perhaps stickers if he's not up to drawing that day). There must be some program out there to let him do some fashion designing that is less girlie than the Barbie option.
Anything that lets us focus on CJ's strengths and the joy that they bring into our lives daily is a welcome step in the right direction. Now we just have to take it.
Sunday, April 12, 2009
When feeling can be deceiving...
My last coronary artery spasm was 5 weeks ago, which is a new record for me since this all started. It took 2 weeks before I stopped feeling crappy and another 1.5 weeks before I felt normal, but I did feel normal for the first time in a long time. Wow! It was wonderful. If I didn't know I had a heart, I wouldn't have been able to tell (my ultimate gauge of health these days).
So what did I do? Nothing too radical, I simply lived my life as I normally would. C.J. was on Spring Break, so I juggled time with him and T.R. and work for the first three days. On Wednesday, I pulled A.J. from school and headed up to my mom's with all three boys to spend time with my brother and his family who were visiting. Thursday was all day in Baltimore for the boys first Major League Baseball game. It was a great week all around, until I woke up Friday and was exhausted. Really exhausted.
No problem, I could adjust. A.J. went with my brother and his family to hang out some more in College Park and on the Mall at museums, while I took the other two home for some relaxation. The drive home was a little scary but we made it. I got everyone lunch, put the little one down for a nap and sent C.J. outside to play. Still not feeling great, I had my brother drop A.J. off and Craig got home from work around 2pm (love when the office closes early for holidays) so we were set. I sat down for a little while as I know I should and it worked, I felt better.
So much better, that I cleaned my downstairs because 1) it needed it desperately and 2) I was hosting Easter dinner. On Saturday, I did all the normal prep for Easter, which in this case included shopping for Easter basket items and shoes for A.J., pulling all the 4T clothes out for T.R. and putting away the 3T clothes, and more cleaning. Did I mention I wasn't religious about my medicine this week either? But hey, I felt great.
I'm sure you can guess where this is heading.
Saturday night at 8, I did not feel well. I took my Amlodipine and waited for it to kick in. At 8:45, I really didn't feel well so I took a second (something which has been approved by my doctor) and sat there hopeful. My body, however, was not to be bought off that easily (too little, too late, it obviously thought) and sure enough by 9:00 I had had another coronary artery spasm. Ugh!!
Here's the thing about a chronic condition, it doesn't go away even when you feel good. Easy to understand in the abstract, in reality it means that you can no longer plan your life based on how you feel. The terms "sick" and "healthy" have completely different meanings. Recently I talked about "getting healthy" once I stop working and Craig jumped on me. I won't "get healthy" he pointed out, what I need to do is learn to manage my heart condition. He's right. I'm not managing my health, I'm just ignoring it whenever possible.
The real struggle for me is that the life I've always had is gone, at least for the time being. There is no more "normal." This is a pretty radical shift in perspective for me. Right now, I tend to go as far and as fast as I can until I crash, a tendency Craig would like to see replaced with a more balanced approach to life that involves fewer mangled fenders (or in this case arteries).
Maybe what I need is a new definition for normal. A definition based on the reality that there is no one thing I can't do, I just can't do everything all at once. Of course, that means I have to figure out what that new "normal" looks like. Which I can do, right after I clean my upstairs.
I know, I know, but it desperately needs it.
So what did I do? Nothing too radical, I simply lived my life as I normally would. C.J. was on Spring Break, so I juggled time with him and T.R. and work for the first three days. On Wednesday, I pulled A.J. from school and headed up to my mom's with all three boys to spend time with my brother and his family who were visiting. Thursday was all day in Baltimore for the boys first Major League Baseball game. It was a great week all around, until I woke up Friday and was exhausted. Really exhausted.
No problem, I could adjust. A.J. went with my brother and his family to hang out some more in College Park and on the Mall at museums, while I took the other two home for some relaxation. The drive home was a little scary but we made it. I got everyone lunch, put the little one down for a nap and sent C.J. outside to play. Still not feeling great, I had my brother drop A.J. off and Craig got home from work around 2pm (love when the office closes early for holidays) so we were set. I sat down for a little while as I know I should and it worked, I felt better.
So much better, that I cleaned my downstairs because 1) it needed it desperately and 2) I was hosting Easter dinner. On Saturday, I did all the normal prep for Easter, which in this case included shopping for Easter basket items and shoes for A.J., pulling all the 4T clothes out for T.R. and putting away the 3T clothes, and more cleaning. Did I mention I wasn't religious about my medicine this week either? But hey, I felt great.
I'm sure you can guess where this is heading.
Saturday night at 8, I did not feel well. I took my Amlodipine and waited for it to kick in. At 8:45, I really didn't feel well so I took a second (something which has been approved by my doctor) and sat there hopeful. My body, however, was not to be bought off that easily (too little, too late, it obviously thought) and sure enough by 9:00 I had had another coronary artery spasm. Ugh!!
Here's the thing about a chronic condition, it doesn't go away even when you feel good. Easy to understand in the abstract, in reality it means that you can no longer plan your life based on how you feel. The terms "sick" and "healthy" have completely different meanings. Recently I talked about "getting healthy" once I stop working and Craig jumped on me. I won't "get healthy" he pointed out, what I need to do is learn to manage my heart condition. He's right. I'm not managing my health, I'm just ignoring it whenever possible.
The real struggle for me is that the life I've always had is gone, at least for the time being. There is no more "normal." This is a pretty radical shift in perspective for me. Right now, I tend to go as far and as fast as I can until I crash, a tendency Craig would like to see replaced with a more balanced approach to life that involves fewer mangled fenders (or in this case arteries).
Maybe what I need is a new definition for normal. A definition based on the reality that there is no one thing I can't do, I just can't do everything all at once. Of course, that means I have to figure out what that new "normal" looks like. Which I can do, right after I clean my upstairs.
I know, I know, but it desperately needs it.
Thursday, April 2, 2009
Dream Reading
So I'm helping the kids get their costumes on to go Trick or Treating, look outside the window and suddenly realize there are no decorations up. How is this possible? I love Halloween and we go to town (seriously, we decorate more for Halloween than for Christmas). How did I forget to decorate? Do I even have candy? I started panicking and looked for Craig to get help.
Then I woke up.
It took a minute for me to get my bearings. At first I actually started planning for how to get caught up on Halloween work, then I realized it was the last day of March - a little early for Halloween. I eventually got up and went about my day, but the dream has stuck with me.
Dreams come out of our subconscious, so where was this one lurking? Halloween does make some sense. I basically missed it this year since I was in the hospital for a heart procedure most of the day. I got home, managed to see the boys in their costumes before mom took them out and then collapsed. This was obviously not one of our finest days. A great symbol, perhaps, of all the other days, big and little, I have missed because of my heart condition?
In school, I used to have a dream where I suddenly realized I had a final in a class for which I didn't remember registering and to which I had never gone. Pretty scary. So is this just the mommy version of that dream? Am I venting my anxiety?
I have been in the middle of an internal debate over staying home next year. It makes sense on a lot of levels. I'd get a year with T.R., my last chance for little boy time. I could help get C.J. and A.J. settled into their new school and make sure the transition is as smooth as possible, especially sorting out the role the SPED department will play with C.J. I could stop trying to juggle work, home and my heart, focusing on being a healthy mom. No question, it's the right decision.
And then, I have a super-productive day at work and don't want to give up the way it feels when something clicks and I can help a teacher stay sane or a student get back on track. Or I see something I want to buy and realize I can't if there is no second income. Do these things outweigh the pros to staying home? Probably not, but they might be just enough to cause a few restless nights and the occasional anxiety dream.
Only 7 months until Halloween.
Then I woke up.
It took a minute for me to get my bearings. At first I actually started planning for how to get caught up on Halloween work, then I realized it was the last day of March - a little early for Halloween. I eventually got up and went about my day, but the dream has stuck with me.
Dreams come out of our subconscious, so where was this one lurking? Halloween does make some sense. I basically missed it this year since I was in the hospital for a heart procedure most of the day. I got home, managed to see the boys in their costumes before mom took them out and then collapsed. This was obviously not one of our finest days. A great symbol, perhaps, of all the other days, big and little, I have missed because of my heart condition?
In school, I used to have a dream where I suddenly realized I had a final in a class for which I didn't remember registering and to which I had never gone. Pretty scary. So is this just the mommy version of that dream? Am I venting my anxiety?
I have been in the middle of an internal debate over staying home next year. It makes sense on a lot of levels. I'd get a year with T.R., my last chance for little boy time. I could help get C.J. and A.J. settled into their new school and make sure the transition is as smooth as possible, especially sorting out the role the SPED department will play with C.J. I could stop trying to juggle work, home and my heart, focusing on being a healthy mom. No question, it's the right decision.
And then, I have a super-productive day at work and don't want to give up the way it feels when something clicks and I can help a teacher stay sane or a student get back on track. Or I see something I want to buy and realize I can't if there is no second income. Do these things outweigh the pros to staying home? Probably not, but they might be just enough to cause a few restless nights and the occasional anxiety dream.
Only 7 months until Halloween.
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