When Mac was a toddler, before she could really articulate what she was thinking, I used to wonder what she dreamed about at night. If you don't have language or grasp abstract concepts, how do you dream? Babies don't have a sense of narrative or time (right??), so what do they dream about?
Lately, Oli has been talking in his sleep. A few nights ago, he said "No, not my biggies." His "biggies" are his HKAFOs, or the braces that go up to his hips. He has been giving me some resistance to wearing them lately,probably b/c they are cumbersome and make him really hot. But he needs them to walk, so more often than not, he has to wear them. I guess it really bothers him, b/c he sounded really distressed in his sleep :(
This morning, while he was sleeping, he said "More jello beans," with a big smile. "Jello beans" are jelly beans. I thought it was so funny, b/c he was so expressive, even though he was sleeping. He loves jelly beans and hates his braces -- I guess his conscious and subconscious are not that far apart...
This from the boy who is in speech therapy. Actually, he is having his (last) 6 month evaluation for Early Intervention tomorrow. We are recommending that he drop speech, and add a second PT session. With school coming, we want him as ready to go as possible. Speech hasn't really been working out, so this is a welcome move for us. It turns out that Oli is so good at talking that he can do it in his sleep.
20 April 2010
15 April 2010
Weird Things My Kids Say
In the last 24 hours, my kids have said:
"I a big bird. I take you down, mommy."
"Don't throw me in the garbage. Okay, just my head."
and
"I feel alive!" (said in a triumphant yell)
This brought me to 2 realizations:
1. My kids sound like the foreign exchange students who learn English by watching movies.
2. I probably can't send them to school, because there is a good chance we will go to jail based on the outlandish things that they come up with.
"I a big bird. I take you down, mommy."
"Don't throw me in the garbage. Okay, just my head."
and
"I feel alive!" (said in a triumphant yell)
This brought me to 2 realizations:
1. My kids sound like the foreign exchange students who learn English by watching movies.
2. I probably can't send them to school, because there is a good chance we will go to jail based on the outlandish things that they come up with.
14 April 2010
So, without meaning to, I let too much time slip by between my last post and now. So much has happened, and I haven't really had time to sit down and reflect on it all. Something that I don't think I've mentioned is that my mother in law was diagnosed with cancer in November and had surgery in February. Surgery went well, but she has had other complications, which is dragging out her post-operative treatment. Luckily her prognosis is good, and it is only a matter of time before she is through this ordeal. We are trying to strike the appropriate level of disclosure with the kids, letting them know that something is going on, without too many of the scary details. Because Nanny is still recovering, Tim and I have divided up our time with the kids, forming an ad hoc childcare/work schedule. The wonderful piece that has been added to our puzzle is my Aunt Patti and grandma, who come down every Wednesday to watch the kids. It has been great getting to see them every week, and watching the kids' relationship with them grow. When I was little, my grandma used to take care of me and Beth every Wednesday. It is beyond special to me that she is now getting to do the same with my own kids.
Because of everything that was happening, we delayed Mac's birthday parties until the end of March. For the first time ever, she had a kids party and a family party. The kid party was (where else) at the karate school. I was afraid that it wouldn't be fun, because only 6 kids could come. But once her first guest arrived, I realized that Mac was so excited that she would have fun with just one kid. Luckily, more showed up and it was a great time. Tim did a wonderful job keeping the kids busy, and we had an awesome princess cake and cupcakes.
Mac also made her Easter Play debut at church. Following her triumphant performance in the Christmas play (which really just hinged on her not throwing anything at the Baby Jesus this year) we decided to let her be in the Easter show. It was an exciting showing, and watching her become friends with the other kids in the program has been a real blessing. I am so happy that we have a good church where she can learn and grow.
We are gearing up for a busy few weeks. Not only is it the end of the semester, but the karate school is also hosting the regional tournament for April. Tim has lined up a lot of special guests, and extended the event into a nighttime tricking gathering and a tricking seminar the next day. It will be a busy, but hopefully lucrative and educational, weekend.
Meanwhile, while Tim is hosting the seminar, the kids and I will be heading to Sesame Place. Each year, the Variety Children's Network rents the park and opens it free for kids with disabilities and their families. We went last year and had a great time. I can't wait to go again.
19 March 2010
Walking Ahead
I talked to CHOP and they strongly discouraged getting a wheelchair that this point. They told me that the window for kids with SB to learn walking is really 2-5 years old, so he is on the early end of the curve. If we were to get him a wheelchair now, he would probably choose to be in the wheelchair over the work of learning to walk, and we would probably be more tempted to put him in the wheelchair, too (it does take him quite a while to walk from point A to point B, but that is more because of distraction than ability). Additionally, they said that if we send a wheelchair and walker to school, the teachers would always put him in the chair over the walker. So after talking to CHOP, and then to his PT at Children's Specialized (outpatient PT, aka "Baby Gym"), we are going to hold off on the wheelchair for now. I am comfortable with this decision.
Now that we've recommitted to walking, I have had Oli walking everywhere. To and from the car, from the karate school to the pizza place, and even around Party City (which was maybe more than I was ready to tackle). He is doing great, and seems to love it! We get really positive reactions from people. He did fall once yesterday, which is a big fear of mine since his knees are locked so he can't really break his fall. But he was able to put his arms out in time, and it wasn't so bad. I guess he has to fall a few times before we are both comfortable.
Now that we've recommitted to walking, I have had Oli walking everywhere. To and from the car, from the karate school to the pizza place, and even around Party City (which was maybe more than I was ready to tackle). He is doing great, and seems to love it! We get really positive reactions from people. He did fall once yesterday, which is a big fear of mine since his knees are locked so he can't really break his fall. But he was able to put his arms out in time, and it wasn't so bad. I guess he has to fall a few times before we are both comfortable.
15 March 2010
Time Flies
Okay, so that is more than my attempt at explaining why I haven't posted in so long. It is also an observation fueled by Mac's 5th birthday (!), the fact that I enrolled both kids in school this week (!!), and the sheer lack of time that I have in any given week (so that come Friday, I look back and wonder what I did all week).
Yes, Mac is 5. It seems so weird (how can she be that old), but also very appropriate. Perhaps because we have been building it up for so long, 5 seems to be the perfect age for her. Not to young, and not too old. We celebrated her birthday with a trip to Uptown Playground, and indoor play area. She and Oli had a lot of fun. It was great, because it was clean, almost empty, had the coolest climbing equipment ever, and lots of free room for Oli to get around in his walker. Then we had Chili's, and Cold Stone ice cream cake with grandma and grandpa. A great day. We are just having her parties this weekend. This is the first year that she is having a "family" party and a "kids" party. The kids party is kind of small, since she doesn't have a lot of friends outside of karate, and those friends that she does have outside of karate can't make it. But 5 or 6 of her karate friends are coming to the school for an afternoon of pizza, activities, and G-force. She is excited, so I am excited. But also so nervous -- I don't want it to be a loser party. I want it to be cool! I guess it will be no matter what if Mac is involved :)
We registered Mac for Kindergarten last week, but in true Lisa style, I couldn't find her birth certificate. So she isn't fully registered, but at least they know that she is coming. And Oli's EI (early intervention) case manager set up a meeting with the school district to start his registration, as well. He is transitioning out of EI and into an integrated preschool when he turns 3 (which is conveniently in August, so he doesn't have to enter mid-year). From what I can gather, he qualifies for a free spot in preschool based on his diagnosis, but they still have to evaluate him twice (perhaps that is why NJ is in so much debt!!). Ruth, his EI PT, was at the intake meeting, and mentioned that he will probably need a wheelchair. I felt kind of blindsided, b/c I thought we were making good progress with his walker. Admittedly I might be in denial, since he only really walks @ 20% of the time, and crawls the other 80. And we hit a lot of roadblocks, as well. For example, he just spent the last 2 weeks out of his HKAFOs (big braces used with the walker) because of a pressure sore. But I figured since he can walk, we just have to up his game a bit. But her argument is that if he isn't completely at ease with his walker, it will hold him back and he won't be able to keep up with the other kids. I'm afraid that if we introduce the wheelchair too soon, he will come to rely on that too much, and never really be a walker. So it is a real dilemma. I am going to call CHOP and see what they have to say.
So, time does fly, but it does involve progress. That is a good thing! And even though I feel crazed and busy, I almost always remember to cherish the moment. How could I not?
Yes, Mac is 5. It seems so weird (how can she be that old), but also very appropriate. Perhaps because we have been building it up for so long, 5 seems to be the perfect age for her. Not to young, and not too old. We celebrated her birthday with a trip to Uptown Playground, and indoor play area. She and Oli had a lot of fun. It was great, because it was clean, almost empty, had the coolest climbing equipment ever, and lots of free room for Oli to get around in his walker. Then we had Chili's, and Cold Stone ice cream cake with grandma and grandpa. A great day. We are just having her parties this weekend. This is the first year that she is having a "family" party and a "kids" party. The kids party is kind of small, since she doesn't have a lot of friends outside of karate, and those friends that she does have outside of karate can't make it. But 5 or 6 of her karate friends are coming to the school for an afternoon of pizza, activities, and G-force. She is excited, so I am excited. But also so nervous -- I don't want it to be a loser party. I want it to be cool! I guess it will be no matter what if Mac is involved :)
We registered Mac for Kindergarten last week, but in true Lisa style, I couldn't find her birth certificate. So she isn't fully registered, but at least they know that she is coming. And Oli's EI (early intervention) case manager set up a meeting with the school district to start his registration, as well. He is transitioning out of EI and into an integrated preschool when he turns 3 (which is conveniently in August, so he doesn't have to enter mid-year). From what I can gather, he qualifies for a free spot in preschool based on his diagnosis, but they still have to evaluate him twice (perhaps that is why NJ is in so much debt!!). Ruth, his EI PT, was at the intake meeting, and mentioned that he will probably need a wheelchair. I felt kind of blindsided, b/c I thought we were making good progress with his walker. Admittedly I might be in denial, since he only really walks @ 20% of the time, and crawls the other 80. And we hit a lot of roadblocks, as well. For example, he just spent the last 2 weeks out of his HKAFOs (big braces used with the walker) because of a pressure sore. But I figured since he can walk, we just have to up his game a bit. But her argument is that if he isn't completely at ease with his walker, it will hold him back and he won't be able to keep up with the other kids. I'm afraid that if we introduce the wheelchair too soon, he will come to rely on that too much, and never really be a walker. So it is a real dilemma. I am going to call CHOP and see what they have to say.
So, time does fly, but it does involve progress. That is a good thing! And even though I feel crazed and busy, I almost always remember to cherish the moment. How could I not?
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