Can you believe it's April and that this school year is almost over? I can't. It seems like it was just a few weeks ago that we were beginning an adventure at a new school, and I wasn't happy about it. But I must say that it has been a good year for John. His new teacher is very supportive and does a great job communicating and taking care of John's needs so that I don't have to worry while he's there. The nurse and nurse assistant have both proven to be quite competent at replacing John's trach, since it has come out several times at school this year. He is learning and making progress towards his goals and most importantly, he loves going to school. I've gotten involved with the Special Buddies program, which in turn makes me more engaged and committed to John's whole school experience. While I still would have liked for him to have stayed with last year's teacher and to see him build on what he accomplished last year, I am very pleased with how this year has turned out.
But with the end of the school year comes summer. Summer can be tough, keeping up with John all day. I try to plan activities, but there is only so much you can do in Houston that is indoors so that we don't die in the heat. I began planning our summer and realized our calendar has gotten quite crowded. June has Vacation Bible School and August has Super Place Camp, both of which will be held at Tallowood. But the busiest month, and maybe the most exciting will be July when John and I will be spending 3 weeks in Austin while he goes through TheraSuit Therapy.
I told you all about TheraSuit last year when John was supposed to participate in it here in Houston. But the only clinic in Houston who did this therapy, closed the month before he was supposed to start. I was very disappointed at the time, but now realize it was probably for the best. John started horse therapy last summer so if he would have done both, he would have been exhausted and maybe not even able to participate fully. But this summer, we are not going to do horse therapy since we are doing it throughout the school year. So we will be able to concentrate all of his energy towards the TheraSuit. If you want to know more about TheraSuit therapy and what is involved in it and how it can help John click here. If you follow the link, be sure to look at the pictures.
I started thinking on our way to Kinder at Easter that it would be nice for John to be able to participate. Our Austin friends have done this therapy at a clinic in Austin and have been telling us we should come there to do it. But because John requires night time nursing, I never thought it would be possible to stay away from home for that many nights. But as I thought more about it, I thought that it may be possible. We could stay in a hotel in Austin during the week and then come home on the weekends where we have our regular nurses. I even decided that if I have to, I will take care of him at night as well as during the day if that is the only way we could do it. I knew I'd be able to get some sleep on the weekends so I figured I could tough it out. But then it dawned on me that our nursing agency has an office in Austin and maybe, just maybe they could provide night time nurses for the nights we are there. After talking with our nurse manager, she thinks it's a possibility since we have a lot of advanced notice to line someone up. So the next step was to contact the clinic and see if they had any openings.
I got through to one of the Therasuit coordinators and she told me that they had two available spots, both in the afternoon. One was July 1-19 and the second was July 29-August 9. She told me she would send me an application and I needed to fill it out and return it so they could go over it and decide whether or not he would be accepted. It was a lengthy application that required a lot of health history. It took a couple of days for me to go over and complete it as accurately as possible. Once I sent it in, I just had to wait. Meanwhile, I knew that even if he was accepted, there was still the cost to consider. It's not a cheap therapy and I knew we would need help from insurance in order for John to participate.I know a lot of insurance companies don't pay anything towards this therapy and some only pay a portion. I was just hoping that ours would cover enough. After a week of waiting, I finally got the email I had been waiting for. John was accepted. And the best part, our insurance is picking up the cost of the entire therapy, with the exception of the daily co-pay. I knew there was a $500 deposit required for holding his spot and the total of the daily co-pays came out to almost exactly that. So it turns out, we won't be paying any more out of pocket than we already expected to pay.
It just feels like this is the exact right time for John to participate. I knew there would be a few obstacles to clear in order to make that happen. But as I got further into the process, God just cleared every one of those obstacles out of the way. We still have a few more things to do before we start in July, but they shouldn't be a problem. I am so excited for John to be able to do this. He may not like it at times because it's going to be hard, and he may even cry or pitch a fit. But I know in the long run, this is really going to be best for him. It's going to really strengthen the muscles that need it most as well as help with balance and coordination. I'm so excited to see the difference this could make in his motor skills.
I have just a couple of prayer requests for you to consider. First, pray that the nursing agency is able to find a suitable night time nurse to take care of John the 4 nights a week we will be there. It would be exponentially better for both of us, if we can both get a good night's sleep each night. Second, pray for John as he goes through the therapy. I know he's going to be exhausted each and every day. I know it's going to be hard and maybe at times uncomfortable. Just pray that he is physically able to tolerate the tough days. Third, pray that this will help us to see major improvements in John's strength and overall motor skills.
We don't have a specific genetic diagnosis that explains all of John's special needs. One reason we would like one is to be sure we are doing everything we can to ensure that John will be able to meet his full potential. With the addition of this therapy this summer, it finally feels like we are doing everything we can. With that being said, pray for us as we await the results of some recent genetic testing. All three of us had to submit blood work to be analyzed in hopes of discovering a diagnosis for John. Having a diagnosis will not change the way we treat him or love him, but like I said before, it may affect the things we do for him to help him reach his potential. And it will be nice just to have a name. Maybe we can meet others with the same diagnosis that we can lean on for support and advice.
Once again, I thank you all for being so faithful with your support and prayers. Without them, we wouldn't be near as put together as we are.
Monday, April 15, 2013
Monday, April 1, 2013
Easter 2013
Holidays are special for every family. Time spent with those we love, often times those we haven't seen in a while, is what makes it special. When you ask people what their favorite holiday is, often times you'll hear them say Christmas or Thanksgiving. But for me, in the last several years, Easter has become my favorite holiday. The most important part of Easter is remembering what Christ did for us on the cross. The sacrifice he made is the greatest gift we could ever be given. I also love Easter because of the newness of spring. All the old fades away, and new birth is beginning. The colors are pretty and the temperatures are usually perfect, with the exception of course of a few odd years where we had freezing rain. Also, it's a great time to gather with family, without the pressures of shopping for everyone.
I don't know exactly how long ago this tradition started, but several years ago, our family began gathering at my parents' house the weekend of Easter. The highlight of the weekend is boiling crawfish and shrimp on Saturday afternoon. We usually have a lot of extended family around on that day. My brother, Jimmie, my dad and Tommy usually man the crawfish pot while the rest of us fill eggs and hide them for the kids. We use loose change and candy to put inside the plastic eggs and the kids nearly kill themselves trying to find them all. Once we think they have all been found, we end up hiding the empty eggs again, just to keep them occupied. The toughest part of it is keeping the kids inside the house where they can't peek while we hide. Sunday brings us all together at church, where every year the Kinder Bible Church choir performs their Easter musical. The choir is led by my mom and my dad is a member as well. After church, we scurry home to finish putting together lunch, which is always one of dad's world famous roast. The type of roast is different all the time, but without fail, it is always delicious. Mom sets a beautiful table, and we all squeeze around it and enjoy each other's company along with the delicious food. But before everyone gets undressed, we take turns in front of the fireplace taking family pictures. There are pictures of the individual families, the grandkids together and then the whole group. It's usually a rush to get them all taken before someone has enough and goes to change.
This year was much the same, except we ended up not hiding the eggs. There were fewer people there this year and only a couple of kids. They were pretty occupied helping with the crawfish and playing in the yard, and the adults just didn't get around to it. But we still really enjoyed ourselves. The weather was perfect and we sat out on the patio all day, enjoying the sunshine and the conversations. It was very relaxing and I loved every minute of it. John enjoyed just being outside all day. He is an outdoorsy boy, so it was a treat for him to be able to sit outside all day without it being too hot or cold and without the sun beating down on us. Sunday, we went to church and the choir did a great job. We came home and took a few pictures, not as many as normal, and then we threw the rest of lunch together. And instead of setting a pretty table and squeezing around it, we decided to keep it as simple as possible. We served lunch on paper plates and then all went out to the outdoor kitchen and sat around the table in there. I kind of liked bucking tradition, but the most important thing was that we were all together. Jason couldn't make it home this year and we missed him.
We drove home in a pouring rainstorm yesterday. Tommy hates driving in the rain and I'm pretty sure that is the slowest he has ever driven between Kinder and Katy in his entire life. What typically takes us 3 hours, took us nearly 4. We were all miserable and couldn't wait to get out of the car. And our trip ended just like every other road trip. We pulled into the driveway and John started giggling. I guess he is so happy to get out of the car and not be strapped into a seat that he can't help but express his pure delight. This time he started getting excited as soon as we turned onto Fry Rd, 2.5 miles from our house.
Here are some of the pictures I took from the weekend.
I don't know exactly how long ago this tradition started, but several years ago, our family began gathering at my parents' house the weekend of Easter. The highlight of the weekend is boiling crawfish and shrimp on Saturday afternoon. We usually have a lot of extended family around on that day. My brother, Jimmie, my dad and Tommy usually man the crawfish pot while the rest of us fill eggs and hide them for the kids. We use loose change and candy to put inside the plastic eggs and the kids nearly kill themselves trying to find them all. Once we think they have all been found, we end up hiding the empty eggs again, just to keep them occupied. The toughest part of it is keeping the kids inside the house where they can't peek while we hide. Sunday brings us all together at church, where every year the Kinder Bible Church choir performs their Easter musical. The choir is led by my mom and my dad is a member as well. After church, we scurry home to finish putting together lunch, which is always one of dad's world famous roast. The type of roast is different all the time, but without fail, it is always delicious. Mom sets a beautiful table, and we all squeeze around it and enjoy each other's company along with the delicious food. But before everyone gets undressed, we take turns in front of the fireplace taking family pictures. There are pictures of the individual families, the grandkids together and then the whole group. It's usually a rush to get them all taken before someone has enough and goes to change.
This year was much the same, except we ended up not hiding the eggs. There were fewer people there this year and only a couple of kids. They were pretty occupied helping with the crawfish and playing in the yard, and the adults just didn't get around to it. But we still really enjoyed ourselves. The weather was perfect and we sat out on the patio all day, enjoying the sunshine and the conversations. It was very relaxing and I loved every minute of it. John enjoyed just being outside all day. He is an outdoorsy boy, so it was a treat for him to be able to sit outside all day without it being too hot or cold and without the sun beating down on us. Sunday, we went to church and the choir did a great job. We came home and took a few pictures, not as many as normal, and then we threw the rest of lunch together. And instead of setting a pretty table and squeezing around it, we decided to keep it as simple as possible. We served lunch on paper plates and then all went out to the outdoor kitchen and sat around the table in there. I kind of liked bucking tradition, but the most important thing was that we were all together. Jason couldn't make it home this year and we missed him.
We drove home in a pouring rainstorm yesterday. Tommy hates driving in the rain and I'm pretty sure that is the slowest he has ever driven between Kinder and Katy in his entire life. What typically takes us 3 hours, took us nearly 4. We were all miserable and couldn't wait to get out of the car. And our trip ended just like every other road trip. We pulled into the driveway and John started giggling. I guess he is so happy to get out of the car and not be strapped into a seat that he can't help but express his pure delight. This time he started getting excited as soon as we turned onto Fry Rd, 2.5 miles from our house.
Here are some of the pictures I took from the weekend.
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| Fuel for the trip. |
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| Reagan's cute dress |
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| Beautiful view from the patio |
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| Easter in the Boot |
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| With my big Bubba |
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| My love |
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| She has my eyes |
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| So does he |
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| Easter Bunny loot |
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| Reagan's pretty dress |
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| My Family |
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| Jimmie and Chrystal |
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| Mayes Family |
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| Pit Stop in the rain |
Monday, March 4, 2013
Step by Step
In our world, progress comes in spells. John will suddenly start doing several new things all within a matter of days of each other. Usually these are big new things. Then he'll go a while, usually a long while, kind of on cruise control. I'm sure he's still making progress, but the progress is so subtle that we don't typically realize it until it turns into something big. Of course this weekend was no different.
Sunday morning, we were milling around the house, about to get ready for church. John was playing in the game room I think and I needed him in the living room to get him dressed. I got him to a standing position, and I was going to walk him into the living room. Normally, when he walks, it's while holding both of my hands and me walking behind him. When he walks with daddy, he's still holding both hands but daddy is usually standing in front of him and walking backwards as John walks forward. I find that John does more of the work on his own if I'm standing behind him, so that is how I like to do it. This time however, he started walking and was only holding one of my hands. Now I've tried this before, but he's usually too scared to not hold both hands and we normally only make it a couple of steps before he falls. This time, however, he took off. He was walking with only one of my hands for balance and he was moving fast. I think partially he had somewhere he wanted to be and partially he was trying to get across the room so he could grab on to something with his other hand. I was very impressed though, both in his confidence and his balance. He was doing most of the work himself. I was just giving him that little extra balance that he needed.
That same afternoon, we went back to the church. Tommy had a meeting and we decided to wait for him so we could go get dinner after. At our church, there is a little indoor playground that is used for the preschool kids. So while Tommy was in his meeting, John and I went in there to play. They have a few stationary places that John could stand at and kind of chill. I expected him to crawl around the floor some and play with a few of the toys. I was sitting nearby looking at my phone when I suddenly noticed that he was standing on the first step of a small bridge that sits in the middle of the room. I watched him climb two more steps to the top of the bridge and I was just amazed that he did that on his own. I did manage to get video of him climbing the steps. So then we went out into the main area and walked over to the stair case. He grabbed onto the banister with one hand and with the other hand, he held onto me. And he proceeded to climb the whole flight of stairs. We tried coming down, but that was just a little more difficult. After he did all of this, he was wiped out. He got his exercise in for the day. So now we are hitting up our handy neighbor to build him something like that to have at home. That would be great exercise and great therapy for him. Maybe we are on our way to walking after all.
He has also been making some progress with his feeding. His therapist is able to get him to chew on a few different foods and even has gotten him to suck on a straw a few times. This progress is slower than the rest, but it is progress.
I can't tell you how proud I am of my little guy. I know I've talked about this before, but I take for granted all of the everything things that I am able to do, like walking, and eating, and talking. He struggles so much to do any of those things, but he never gives up. He is very persistent. I see that at home when he is playing with his toys. If he wants something a certain way, he keeps at it until he gets it the way he wants it. He is motivated to walk, which is the first step. If I can keep him focused when he works on it, he may come along even faster. And I think our horse riding is beginning to make a difference. It has increased his upper body strength and trunk control, and I think he's beginning to feel the gait of the horse and put it to good use. Also, when he gets on his horse, they have him stepping up on a step before climbing onto the horse. Obvious that one step every week, has made an impression on him and has encouraged him to try more than one step at a time.
Sunday morning, we were milling around the house, about to get ready for church. John was playing in the game room I think and I needed him in the living room to get him dressed. I got him to a standing position, and I was going to walk him into the living room. Normally, when he walks, it's while holding both of my hands and me walking behind him. When he walks with daddy, he's still holding both hands but daddy is usually standing in front of him and walking backwards as John walks forward. I find that John does more of the work on his own if I'm standing behind him, so that is how I like to do it. This time however, he started walking and was only holding one of my hands. Now I've tried this before, but he's usually too scared to not hold both hands and we normally only make it a couple of steps before he falls. This time, however, he took off. He was walking with only one of my hands for balance and he was moving fast. I think partially he had somewhere he wanted to be and partially he was trying to get across the room so he could grab on to something with his other hand. I was very impressed though, both in his confidence and his balance. He was doing most of the work himself. I was just giving him that little extra balance that he needed.
That same afternoon, we went back to the church. Tommy had a meeting and we decided to wait for him so we could go get dinner after. At our church, there is a little indoor playground that is used for the preschool kids. So while Tommy was in his meeting, John and I went in there to play. They have a few stationary places that John could stand at and kind of chill. I expected him to crawl around the floor some and play with a few of the toys. I was sitting nearby looking at my phone when I suddenly noticed that he was standing on the first step of a small bridge that sits in the middle of the room. I watched him climb two more steps to the top of the bridge and I was just amazed that he did that on his own. I did manage to get video of him climbing the steps. So then we went out into the main area and walked over to the stair case. He grabbed onto the banister with one hand and with the other hand, he held onto me. And he proceeded to climb the whole flight of stairs. We tried coming down, but that was just a little more difficult. After he did all of this, he was wiped out. He got his exercise in for the day. So now we are hitting up our handy neighbor to build him something like that to have at home. That would be great exercise and great therapy for him. Maybe we are on our way to walking after all.
He has also been making some progress with his feeding. His therapist is able to get him to chew on a few different foods and even has gotten him to suck on a straw a few times. This progress is slower than the rest, but it is progress.
I can't tell you how proud I am of my little guy. I know I've talked about this before, but I take for granted all of the everything things that I am able to do, like walking, and eating, and talking. He struggles so much to do any of those things, but he never gives up. He is very persistent. I see that at home when he is playing with his toys. If he wants something a certain way, he keeps at it until he gets it the way he wants it. He is motivated to walk, which is the first step. If I can keep him focused when he works on it, he may come along even faster. And I think our horse riding is beginning to make a difference. It has increased his upper body strength and trunk control, and I think he's beginning to feel the gait of the horse and put it to good use. Also, when he gets on his horse, they have him stepping up on a step before climbing onto the horse. Obvious that one step every week, has made an impression on him and has encouraged him to try more than one step at a time.
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| This shirt sums up my persistent little guy. |
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| Standing at the top. |
Thursday, February 7, 2013
I'm back...
...Well, maybe. I knew it had been a while since I last blogged but I had no idea it had been 3 months. I sort of felt like there really wasn't much to write about. We have been trudging along through everyday life. Nothing new or excited has really happened. But, if I take some of the smaller things and put them together, then maybe I would have at least one good post in me. So here is what's been going on.
The holidays went by in a rather blur. Tommy and I hosted both Thanksgiving and Christmas at our house. While it's nice to not have to travel, there is a different difficulty in having everyone at your house. But we had a great time. Thanksgiving seemed to go by pretty easy. We had dinner instead of lunch and since we did a lot of preparations the night before, we didn't really spend our entire day cooking on Thanksgiving day. Christmas, however, was a different story. We had basically the same menu, with a few exceptions, but I spent the entire day in the kitchen, rushing to get it all together to eat at 5:00. I don't know what happened. And, if it wouldn't have been for our neighbors letting us use their oven and their refrigerator and a few of their dining room chairs, I don't know if we would have made it. It's great to have neighbors like that. Have I mentioned before how much we love them? I'm pretty sure I have. The best part of the holidays is we all managed to stay healthy. No illnesses through the whole month of December may be a record for us.
New Year's Eve was rather uneventful. We did get to spend some time with several of our good friends. Each year, one family hosts a New Year's Eve party at their house. Since it includes kids, we start at 5:00. We left around 8:00 to get home before John's nurse gets here and we were all in bed asleep well before midnight. We are some real party animals at our house.
Since the start of the year, John has had several doctors appointments. They normally are more spread out, but somehow we managed to schedule 3 appointments in January and he has already had one in February with another coming up.
The first appointment was with the ENT. I mentioned to her that he seems to have this constant nasal congestion and every now and then it flares up to an infection. She put him on Singulair allergy medicine every day, along with a nasal spray. We have been hoping this would keep the congestion under control and keep him from getting any kind of sinus infections. However, he spent two days home this week with congestion. He got an antibiotic from the doctor on Monday and was finally able to go back to school on Wednesday. Poor little guy was just wiped out from not feeling well and has slept so much since Sunday.
The next appointment was with Pulmonology and there was nothing new to add. We did schedule another sleep study for this summer. Then we saw our Neurologist/sleep doctor. She decided that since John's sleep seems to be under control, she doesn't need to see him any more, unless he starts having problems with either sleep or seizures. So we can now cross one specialist off of our list that we see regularly.
Yesterday was a rather exciting appointment, well maybe it depends on your definition of exciting. We saw our PM&R (Physical Medicine and Rehabilitation) doctor. She basically follows all of his development progress. She recommends therapies for John as well as writes prescriptions for any equipment he might need. She was very pleased with his progress. She thought that we should get a different kind of brace for his feet. Instead of the tall kind of brace that goes most of the way up his lower leg, she thinks that short braces that just go up to his ankle would be sufficient. We are hoping that this will make it easier for him to pick up his feet when he walks. The other braces are so heavy and bulky, that he seems to have a little more difficult time picking his feet up off the floor when he is wearing them. But the exciting part of this appointment was that she suggested we start trying to potty train John. This thought has crossed my mind, but I just never have been convinced that he could handle it. Her suggestion was that we take him to sit on the potty every two hours and that we should start changing his diaper only in the bathroom so he can correlate that is what he is supposed to do in that room.
**Warning** this next paragraph talks about using the potty so if you don't want to read about it, you can stop now.
When he came home from school yesterday, I decided to try putting him on the potty. Sitting him on the potty is not an easy thing to do. First of all, he thinks it's HILARIOUS. Once I get him on it, he starts trying to grab the shower curtain and anything else he can get his hands on. Then when he realizes that I'm not going to let him, he puts his hands on the side of the seat and pushes his bottom up off the seat. Then sometimes he leans his head over and lays it against me. But the whole time he is laughing. The funny thing is, the very first time I sat him on it, he actually went. It was just a little bit, but he did go. When he was finished, I put a diaper back on him and then he promptly wet it. Of course he is not going to make it easy. I tried one more time last night and again this morning, and he didn't go either time. But we'll keep at it. His teachers are also going to work on it at school. We've decided that it will be easier if he is wearing pull ups, so we are going to start using those during the day. Today I went to Target and bought him a smaller seat to put on the potty and a couple packs of pull ups. The problem with pull ups is that they aren't generally designed for kids John's size. So the regular ones are too small. But they have some called Good Nites that are designed for older kids who have trouble wetting the bed. So we will just have to use those. This is going to be an interesting adventure. I don't know if he'll ever learn to go to the bathroom when he needs to. It might just be that we train him to go at certain times of the day. But either way, I'll take it. I'm glad to have a friend that is going through the same thing, that I can talk to and get advice about it. It sure makes this journey easier when you have someone going through it along side of you that understands how difficult it can be and can speak the same language.
I'll end this post with a few pictures to show you what we've been up to lately.
The holidays went by in a rather blur. Tommy and I hosted both Thanksgiving and Christmas at our house. While it's nice to not have to travel, there is a different difficulty in having everyone at your house. But we had a great time. Thanksgiving seemed to go by pretty easy. We had dinner instead of lunch and since we did a lot of preparations the night before, we didn't really spend our entire day cooking on Thanksgiving day. Christmas, however, was a different story. We had basically the same menu, with a few exceptions, but I spent the entire day in the kitchen, rushing to get it all together to eat at 5:00. I don't know what happened. And, if it wouldn't have been for our neighbors letting us use their oven and their refrigerator and a few of their dining room chairs, I don't know if we would have made it. It's great to have neighbors like that. Have I mentioned before how much we love them? I'm pretty sure I have. The best part of the holidays is we all managed to stay healthy. No illnesses through the whole month of December may be a record for us.
New Year's Eve was rather uneventful. We did get to spend some time with several of our good friends. Each year, one family hosts a New Year's Eve party at their house. Since it includes kids, we start at 5:00. We left around 8:00 to get home before John's nurse gets here and we were all in bed asleep well before midnight. We are some real party animals at our house.
Since the start of the year, John has had several doctors appointments. They normally are more spread out, but somehow we managed to schedule 3 appointments in January and he has already had one in February with another coming up.
The first appointment was with the ENT. I mentioned to her that he seems to have this constant nasal congestion and every now and then it flares up to an infection. She put him on Singulair allergy medicine every day, along with a nasal spray. We have been hoping this would keep the congestion under control and keep him from getting any kind of sinus infections. However, he spent two days home this week with congestion. He got an antibiotic from the doctor on Monday and was finally able to go back to school on Wednesday. Poor little guy was just wiped out from not feeling well and has slept so much since Sunday.
The next appointment was with Pulmonology and there was nothing new to add. We did schedule another sleep study for this summer. Then we saw our Neurologist/sleep doctor. She decided that since John's sleep seems to be under control, she doesn't need to see him any more, unless he starts having problems with either sleep or seizures. So we can now cross one specialist off of our list that we see regularly.
Yesterday was a rather exciting appointment, well maybe it depends on your definition of exciting. We saw our PM&R (Physical Medicine and Rehabilitation) doctor. She basically follows all of his development progress. She recommends therapies for John as well as writes prescriptions for any equipment he might need. She was very pleased with his progress. She thought that we should get a different kind of brace for his feet. Instead of the tall kind of brace that goes most of the way up his lower leg, she thinks that short braces that just go up to his ankle would be sufficient. We are hoping that this will make it easier for him to pick up his feet when he walks. The other braces are so heavy and bulky, that he seems to have a little more difficult time picking his feet up off the floor when he is wearing them. But the exciting part of this appointment was that she suggested we start trying to potty train John. This thought has crossed my mind, but I just never have been convinced that he could handle it. Her suggestion was that we take him to sit on the potty every two hours and that we should start changing his diaper only in the bathroom so he can correlate that is what he is supposed to do in that room.
**Warning** this next paragraph talks about using the potty so if you don't want to read about it, you can stop now.
When he came home from school yesterday, I decided to try putting him on the potty. Sitting him on the potty is not an easy thing to do. First of all, he thinks it's HILARIOUS. Once I get him on it, he starts trying to grab the shower curtain and anything else he can get his hands on. Then when he realizes that I'm not going to let him, he puts his hands on the side of the seat and pushes his bottom up off the seat. Then sometimes he leans his head over and lays it against me. But the whole time he is laughing. The funny thing is, the very first time I sat him on it, he actually went. It was just a little bit, but he did go. When he was finished, I put a diaper back on him and then he promptly wet it. Of course he is not going to make it easy. I tried one more time last night and again this morning, and he didn't go either time. But we'll keep at it. His teachers are also going to work on it at school. We've decided that it will be easier if he is wearing pull ups, so we are going to start using those during the day. Today I went to Target and bought him a smaller seat to put on the potty and a couple packs of pull ups. The problem with pull ups is that they aren't generally designed for kids John's size. So the regular ones are too small. But they have some called Good Nites that are designed for older kids who have trouble wetting the bed. So we will just have to use those. This is going to be an interesting adventure. I don't know if he'll ever learn to go to the bathroom when he needs to. It might just be that we train him to go at certain times of the day. But either way, I'll take it. I'm glad to have a friend that is going through the same thing, that I can talk to and get advice about it. It sure makes this journey easier when you have someone going through it along side of you that understands how difficult it can be and can speak the same language.
I'll end this post with a few pictures to show you what we've been up to lately.
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| Look how tall I've gotten |
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| My new trick |
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| Me and Ms. Caitlin |
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| Two peas in a pod |
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| Mommy's two handsome dinner dates |
Thursday, November 1, 2012
Time heals all wounds
Now that we are a couple of months into the school year and have had our first grading period, I thought it was time to update you guys on what's going on. When I last left you, the classes had just been divided into two and they were waiting to hire a new teacher for the second class.
They have since hired a new teacher, although I don't know anything about her. But John seems to have settled in quite nicely with his original teacher. We had his ARD a couple of weeks ago, and a lot of good things were said and discussed. I feel like we have a good plan in place and hopefully I will start to see lots of good things over the next few months.
Now you all know how much I didn't want John to change schools. I was really upset about it and had my doubts. Especially after the first couple of weeks, I still had my doubts. But I kept saying that I was praying that God had great things in store for John.
Guess what. It turns out that just maybe, I was the person God was trying to change through this. Maybe it's me that he has big plans for. I had an experience today, that I'll tell you about in a minute, that has led me to this conclusion. I am not a natural born leader. I do not have the "take charge" instinct that some people, like my husband, has. I would rather sit back and let someone else lead, and then just do what I'm asked to do. I'm really good at taking instructions and going with it, although my mother would probably disagree. But that is just my personality. However, thinking back on the events of the last several months I've realized a few things.
When I was told that he was being rezoned to a new school, that just awakened something in me that I didn't know existed. I am not a confrontational person at all, and because of that I tend to let people get their way and kind of take advantage of me. Well not this time. I took the situation head on from the beginning, and really was fairly calm about it. But that was only the beginning. After the school year started and I felt things weren't going quite the way they should be, I didn't just sit back and let it happen like I might have in the past. I first emailed the principal, and when I didn't get the response I liked, I contacted someone at the district. None of that is typical of me. But we all know that moms will do a lot when it comes to taking care of their kids.
And what did being so vocal about it get me? I guess since the teachers and school knew that I was very involved in my child's education, they thought I would be the perfect parent to be in charge of starting a Special Buddies program at our school. Being a new school, I didn't know if or when we would be able to start the program. But once our counselor got wind of it and began asking around, I was the person who was recommended to do so. This goes back to not being a leader. I don't normally like to be in charge of things. I will help out with whatever I'm asked to, but I don't like to organize and be in charge. Which brings me to what happened today.
I agreed to be the parent liason for the Special Buddies at the school and Mrs. Leung (the counselor) and I set a date and chose an activity for our first event. But there were still a few things I was unsure about. So today I went to meet with Mrs. Leung to ask some questions and get a better idea of what to expect. We had a great meetings and I got a lot of questions answered. We discussed what we wanted to do at our first event and how we wanted to put it together. And then I started to feel excited. This was kind of unexpected. I had been feeling dread and anxiety over having to come up with something fun for the kids. I'm not a creative person so it is hard for me to come up with good ideas. But as we were talking this morning and things were starting to come together, I actually started to get excited about it. It makes me happy when John gets to interact with regular ed kids. It's so important to me that not only does he get that interaction, but that the other kids get to interact with him. I want kids to learn that not everyone is the same, but that they all matter just as much. Hopefully if we can train our kids to think this way, we can get a handle on this bullying problem that is out there.
And if coordinating Special Buddies isn't enough, I volunteered to help start a Young Athlete's program at his school. This is sort of an extension of the Special Olympics program and John got to take part in it last year at OKE. It was a very fun day for the kids and parents, and then after, they had a parade around the school for the participants where all of the students and staff in the school lined the halls and cheered for our kids as they walked by. That was my favorite part and made me want to get this started at Shafer as well. We are probably going to wait until next school year to implement this program, but Mrs. Leung said she is going to go to OKE's program this year to get a good idea of how it works. I told her I would go with her and help her bring the program to our school.
This morning was the first time that I really felt happy about him being in school at Shafer Elementary. I finally feel my heart begin to heal, because it truly was broken when he had to change schools. I finally see that maybe God put us in this situation not for John's sake, but for mine. He has forced me to come out of my comfort zone, and as a result, I feel like I'm growing as a person. I don't think this means I'm going to seek out a leadership role or automatically become better at confrontation, but at least now I know that I have it in me if I need it. I think he still has great things planned for John, but I have discovered that he still has great things planned for me. And I am very hankful for him teaching me this. It turns out, all I needed was a little push, and my heart just needed a little time.
They have since hired a new teacher, although I don't know anything about her. But John seems to have settled in quite nicely with his original teacher. We had his ARD a couple of weeks ago, and a lot of good things were said and discussed. I feel like we have a good plan in place and hopefully I will start to see lots of good things over the next few months.
Now you all know how much I didn't want John to change schools. I was really upset about it and had my doubts. Especially after the first couple of weeks, I still had my doubts. But I kept saying that I was praying that God had great things in store for John.
Guess what. It turns out that just maybe, I was the person God was trying to change through this. Maybe it's me that he has big plans for. I had an experience today, that I'll tell you about in a minute, that has led me to this conclusion. I am not a natural born leader. I do not have the "take charge" instinct that some people, like my husband, has. I would rather sit back and let someone else lead, and then just do what I'm asked to do. I'm really good at taking instructions and going with it, although my mother would probably disagree. But that is just my personality. However, thinking back on the events of the last several months I've realized a few things.
When I was told that he was being rezoned to a new school, that just awakened something in me that I didn't know existed. I am not a confrontational person at all, and because of that I tend to let people get their way and kind of take advantage of me. Well not this time. I took the situation head on from the beginning, and really was fairly calm about it. But that was only the beginning. After the school year started and I felt things weren't going quite the way they should be, I didn't just sit back and let it happen like I might have in the past. I first emailed the principal, and when I didn't get the response I liked, I contacted someone at the district. None of that is typical of me. But we all know that moms will do a lot when it comes to taking care of their kids.
And what did being so vocal about it get me? I guess since the teachers and school knew that I was very involved in my child's education, they thought I would be the perfect parent to be in charge of starting a Special Buddies program at our school. Being a new school, I didn't know if or when we would be able to start the program. But once our counselor got wind of it and began asking around, I was the person who was recommended to do so. This goes back to not being a leader. I don't normally like to be in charge of things. I will help out with whatever I'm asked to, but I don't like to organize and be in charge. Which brings me to what happened today.
I agreed to be the parent liason for the Special Buddies at the school and Mrs. Leung (the counselor) and I set a date and chose an activity for our first event. But there were still a few things I was unsure about. So today I went to meet with Mrs. Leung to ask some questions and get a better idea of what to expect. We had a great meetings and I got a lot of questions answered. We discussed what we wanted to do at our first event and how we wanted to put it together. And then I started to feel excited. This was kind of unexpected. I had been feeling dread and anxiety over having to come up with something fun for the kids. I'm not a creative person so it is hard for me to come up with good ideas. But as we were talking this morning and things were starting to come together, I actually started to get excited about it. It makes me happy when John gets to interact with regular ed kids. It's so important to me that not only does he get that interaction, but that the other kids get to interact with him. I want kids to learn that not everyone is the same, but that they all matter just as much. Hopefully if we can train our kids to think this way, we can get a handle on this bullying problem that is out there.
And if coordinating Special Buddies isn't enough, I volunteered to help start a Young Athlete's program at his school. This is sort of an extension of the Special Olympics program and John got to take part in it last year at OKE. It was a very fun day for the kids and parents, and then after, they had a parade around the school for the participants where all of the students and staff in the school lined the halls and cheered for our kids as they walked by. That was my favorite part and made me want to get this started at Shafer as well. We are probably going to wait until next school year to implement this program, but Mrs. Leung said she is going to go to OKE's program this year to get a good idea of how it works. I told her I would go with her and help her bring the program to our school.
This morning was the first time that I really felt happy about him being in school at Shafer Elementary. I finally feel my heart begin to heal, because it truly was broken when he had to change schools. I finally see that maybe God put us in this situation not for John's sake, but for mine. He has forced me to come out of my comfort zone, and as a result, I feel like I'm growing as a person. I don't think this means I'm going to seek out a leadership role or automatically become better at confrontation, but at least now I know that I have it in me if I need it. I think he still has great things planned for John, but I have discovered that he still has great things planned for me. And I am very hankful for him teaching me this. It turns out, all I needed was a little push, and my heart just needed a little time.
Monday, October 29, 2012
Hurricane Preparedness for Yankees
This is not my normal blog post about life with my sweet son. That's normally what I blog about. But today, after watching the Today show's ridiculous coverage of Hurricane Sandy, I felt compelled to use my blog to give advice to my northern friends who may have never experienced a hurricane before. So, for all of my Yankee friends, here are some steps from this Dixie Darling, for riding out the storm.
1. If you live in a high rise, get out. You will not enjoy being in the penthouse suite when the winds start to blow and that thing starts to sway. Find someone with a ground floor apartment, or better yet a house in case that thing topples over. You don't want to be at the bottom of that.
2. I know you have a lot of bridges and tunnels around there. Keep away from them. They will probably be closed anyway, but even if they aren't, don't be a daredevil and try to cross a bridge in hurricane force winds. In fact, stay off of the roads, period.
3. If you don't have storm shutters on your house, use ply wood and board up the windows. If you don't have time or just can't get to the hardware store, then masking tape will work just find. Just tape strips across your windows from corner to corner in an "X". It won't keep the windows from breaking, but it should keep them from shattering. That's what we like to call redneck engineering.
4. Make sure you stock up on plenty of drinking water, or soda or juice or beer or wine or whatever you use to hydrate. Also, have plenty of your favorite snack foods on hand and maybe even some bread and peanut butter, in case you are without electricity for a while and can't cook anything. Forget keeping things cold. If you lose power, even if you never open your freezer door (which is impossible to do) it will not stay cold for long and you will lose the food in there.
5. Make sure you have plenty of flashlights and batteries for them. Also, get a battery operated radio and or TV so you can hear the news media tell you when it's safe to come out again. They are, after all, the bravest of us all. They will ride out the storm and stay on the air for as long as they have power and a signal. They are the real heroes at a time like this.
6. While you still have water, fill up all of your bathtubs. If you lose power and water, you can use the water in your bathtub to flush your toilets with. Please, do not use kitty litter to dispose of your waste as was suggested on the Today Show this morning. That is just gross.
7. Some media outlets will tell you to shelter in place, but a term we like to use down here in the south is "Hunker Down." This means simply, stay inside. Stay off the roads, stay in your house, protect your pets and plants, board or tape your windows, grab all of your snack foods and beverages, and pull out all of your board games. Build a fort with your kids ( this is where the flashlights will come in handy). Turn on your battery powered TV or radio and listen for the all clear signal. Another term we use for this is Hurricane Party.
Now I know many of you have never experienced anything like this before. It can really be scary. This led the Today Show to call in a psychology expert to tell you how to handle your kids and their fear or anxiety as they watch you prepare. I can give you the same advice and I don't have a Ph.D. behind my name. I can tell you exactly how your kids are feeling and how to handle it. They are thinking that this is the most exciting thing they have ever experienced. School is cancelled and this is going to be a party. There is no fear or anxiety at all. Trust me. I've been there.
After the storm is over, you are going to want a friend that has a boat in his front yard or at least someone with a truck that has big mud tires on it. What? No one up there has anything like that? Oh well. You will be sorry. You are going to need it to rescue folks on your street after the 5-7 inches of rain you are expecting. I mean, with water that high, you might even need a helicopter to pick you up off of your roof tops. And if the high water stays around for a few days and you need something for your kids to do to keep from getting bored, check out the episode of Duck Dynasty where they teach you to build a Redneck Water Park. They have some great ideas.
If you are the mayor of Atlantic city, where the storm is expected to make landfall, I would call up the mayor of Biloxi, Mississippi to get advice on what to do with your casinos. That's your main source of revenue and you are going to need to get them back up and running as soon as you can.
In all seriousness, hurricanes are dangerous and you should take all precautions to keep yourselves and your family safe.
And so you don't feel like you are the only ones in the country preparing for severe weather, my son and I are wearing our sweatshirts today to stay warm in these 50 degree temperatures. Of course, around here, you practically need a sweatshirt just to go to the grocery store and walk through the cold section.
1. If you live in a high rise, get out. You will not enjoy being in the penthouse suite when the winds start to blow and that thing starts to sway. Find someone with a ground floor apartment, or better yet a house in case that thing topples over. You don't want to be at the bottom of that.
2. I know you have a lot of bridges and tunnels around there. Keep away from them. They will probably be closed anyway, but even if they aren't, don't be a daredevil and try to cross a bridge in hurricane force winds. In fact, stay off of the roads, period.
3. If you don't have storm shutters on your house, use ply wood and board up the windows. If you don't have time or just can't get to the hardware store, then masking tape will work just find. Just tape strips across your windows from corner to corner in an "X". It won't keep the windows from breaking, but it should keep them from shattering. That's what we like to call redneck engineering.
4. Make sure you stock up on plenty of drinking water, or soda or juice or beer or wine or whatever you use to hydrate. Also, have plenty of your favorite snack foods on hand and maybe even some bread and peanut butter, in case you are without electricity for a while and can't cook anything. Forget keeping things cold. If you lose power, even if you never open your freezer door (which is impossible to do) it will not stay cold for long and you will lose the food in there.
5. Make sure you have plenty of flashlights and batteries for them. Also, get a battery operated radio and or TV so you can hear the news media tell you when it's safe to come out again. They are, after all, the bravest of us all. They will ride out the storm and stay on the air for as long as they have power and a signal. They are the real heroes at a time like this.
6. While you still have water, fill up all of your bathtubs. If you lose power and water, you can use the water in your bathtub to flush your toilets with. Please, do not use kitty litter to dispose of your waste as was suggested on the Today Show this morning. That is just gross.
7. Some media outlets will tell you to shelter in place, but a term we like to use down here in the south is "Hunker Down." This means simply, stay inside. Stay off the roads, stay in your house, protect your pets and plants, board or tape your windows, grab all of your snack foods and beverages, and pull out all of your board games. Build a fort with your kids ( this is where the flashlights will come in handy). Turn on your battery powered TV or radio and listen for the all clear signal. Another term we use for this is Hurricane Party.
Now I know many of you have never experienced anything like this before. It can really be scary. This led the Today Show to call in a psychology expert to tell you how to handle your kids and their fear or anxiety as they watch you prepare. I can give you the same advice and I don't have a Ph.D. behind my name. I can tell you exactly how your kids are feeling and how to handle it. They are thinking that this is the most exciting thing they have ever experienced. School is cancelled and this is going to be a party. There is no fear or anxiety at all. Trust me. I've been there.
After the storm is over, you are going to want a friend that has a boat in his front yard or at least someone with a truck that has big mud tires on it. What? No one up there has anything like that? Oh well. You will be sorry. You are going to need it to rescue folks on your street after the 5-7 inches of rain you are expecting. I mean, with water that high, you might even need a helicopter to pick you up off of your roof tops. And if the high water stays around for a few days and you need something for your kids to do to keep from getting bored, check out the episode of Duck Dynasty where they teach you to build a Redneck Water Park. They have some great ideas.
If you are the mayor of Atlantic city, where the storm is expected to make landfall, I would call up the mayor of Biloxi, Mississippi to get advice on what to do with your casinos. That's your main source of revenue and you are going to need to get them back up and running as soon as you can.
In all seriousness, hurricanes are dangerous and you should take all precautions to keep yourselves and your family safe.
And so you don't feel like you are the only ones in the country preparing for severe weather, my son and I are wearing our sweatshirts today to stay warm in these 50 degree temperatures. Of course, around here, you practically need a sweatshirt just to go to the grocery store and walk through the cold section.
Tuesday, October 9, 2012
A Little More Like Italy
If you read the first post on this blog, it explains why my blog is called "Little Postcards From Holland." I recited a story written by a parent of a special needs child. It explains how having a baby with special needs is a little like planning to take a wonderful vacation to Italy, and instead, ending up in Holland. If you haven't seen that post, you can click to see it here.
When I got pregnant, I had all kinds of ideas of things I wanted my child to experience. And when I found out we were having a boy, I couldn't wait to teach him how to play sports. If you know me at all, you know about my love and passion for all things sports. I started playing softball at a young age, and never looked back. Even when I was younger, I played football in the back yard with my brothers. I tried basketball, but it wasn't my thing. But I was in love with sports. I loved every part of it, especially the competiveness. When I got older, I decided to make sports my profession. So the idea of being able to share this passion with my son was very exciting to me.
It didn't occur to me right away when John was born and we found out that he wasn't typical. In fact, it took a very long time for Tommy and I to accept the fact, that he would never be typical. We kept telling ourselves that he just needed to get bigger and maybe get a little therapy help, but one day he would catch up with all of his friends. When we finally came to realize that he would never be a typical child, one of the things I thought about was not being able to teach him to play. But with everything going on and all of the issues we were learning to deal with, I still didn't think about it much. But when his friends started getting involved in soccer and basketball and even baseball, it broke my heart to think I would not be able to watch my son do these things.
Then a couple of year ago, Tommy came across something about a baseball league designed for kids that have special needs. It's called Challenger Baseball and they have leagues all around the country. So we looked into something like that here and found that Houston has two leagues. One is in the West University area, which is not near us, but there is also one in Katy. So we started to watch the website to find out when we could sign John up for it. We ended up missing the spring season, but did manage to get him in to play this fall. This past Sunday was his first game.
I knew that the basic concept was that all kids on the team would get a chance to bat and then they would switch sides. I didn't know what would be going on in the field while the other team was batting. Each kid has a buddy to help them and while they are in the field, all of the kids and their buddies stand around and toss a ball to each other. So they are staying active while the other kids are hitting and running the bases. Also, when the kids come to bat, one of the adults toss the ball to them from just a few feet away so the kids have a better chance to hit. We elected to use a tee for John to hit off of because I didn't know how easy it would be for him to try and swing a bat while sitting in his chair. Of course I helped him hold it and swing, but his favorite part was running the bases.
Some of our good friends came out to watch him play. Tommy had asked her to take pictures for us, so the whole family came out. Their daughter, Mia, is the same age as John. When they got there, Mia came to say hi to John, and one of the ladies that runs the league asked Mia if she wanted to be John's buddy for the day. She agreed and even got to wear a buddy t-shirt. So it was me, John and Mia out on the field.
We all had a blast, even though it was a little chilly. John got a cool uniform and his team is the Cubs. His number is 4. In our family growing up, my brother and I would always sign cards to our parents or to each other with our name and our uniform number. So I think I want to start that tradition with John. Also, when I was younger, playing softball, I had a coach who decided to give every girl on the team a nickname. The nickname was one that belonged to someone who had played professional baseball at one time. The name I was given was Scooter, which was the nickname of Phil Rizzuto who played shortstop for the Yankees from 1941-1956. I think it's time to pass that name down to John.
So after being in "Holland" for the past 7 1/2 years, getting to share this experience with John maybe feels a little more like that Italian vacation I was expecting when I got pregnant. I know it's not exactly what I was hoping for, but watching him have so much fun makes up for that.
When I got pregnant, I had all kinds of ideas of things I wanted my child to experience. And when I found out we were having a boy, I couldn't wait to teach him how to play sports. If you know me at all, you know about my love and passion for all things sports. I started playing softball at a young age, and never looked back. Even when I was younger, I played football in the back yard with my brothers. I tried basketball, but it wasn't my thing. But I was in love with sports. I loved every part of it, especially the competiveness. When I got older, I decided to make sports my profession. So the idea of being able to share this passion with my son was very exciting to me.
It didn't occur to me right away when John was born and we found out that he wasn't typical. In fact, it took a very long time for Tommy and I to accept the fact, that he would never be typical. We kept telling ourselves that he just needed to get bigger and maybe get a little therapy help, but one day he would catch up with all of his friends. When we finally came to realize that he would never be a typical child, one of the things I thought about was not being able to teach him to play. But with everything going on and all of the issues we were learning to deal with, I still didn't think about it much. But when his friends started getting involved in soccer and basketball and even baseball, it broke my heart to think I would not be able to watch my son do these things.
Then a couple of year ago, Tommy came across something about a baseball league designed for kids that have special needs. It's called Challenger Baseball and they have leagues all around the country. So we looked into something like that here and found that Houston has two leagues. One is in the West University area, which is not near us, but there is also one in Katy. So we started to watch the website to find out when we could sign John up for it. We ended up missing the spring season, but did manage to get him in to play this fall. This past Sunday was his first game.
I knew that the basic concept was that all kids on the team would get a chance to bat and then they would switch sides. I didn't know what would be going on in the field while the other team was batting. Each kid has a buddy to help them and while they are in the field, all of the kids and their buddies stand around and toss a ball to each other. So they are staying active while the other kids are hitting and running the bases. Also, when the kids come to bat, one of the adults toss the ball to them from just a few feet away so the kids have a better chance to hit. We elected to use a tee for John to hit off of because I didn't know how easy it would be for him to try and swing a bat while sitting in his chair. Of course I helped him hold it and swing, but his favorite part was running the bases.
Some of our good friends came out to watch him play. Tommy had asked her to take pictures for us, so the whole family came out. Their daughter, Mia, is the same age as John. When they got there, Mia came to say hi to John, and one of the ladies that runs the league asked Mia if she wanted to be John's buddy for the day. She agreed and even got to wear a buddy t-shirt. So it was me, John and Mia out on the field.
We all had a blast, even though it was a little chilly. John got a cool uniform and his team is the Cubs. His number is 4. In our family growing up, my brother and I would always sign cards to our parents or to each other with our name and our uniform number. So I think I want to start that tradition with John. Also, when I was younger, playing softball, I had a coach who decided to give every girl on the team a nickname. The nickname was one that belonged to someone who had played professional baseball at one time. The name I was given was Scooter, which was the nickname of Phil Rizzuto who played shortstop for the Yankees from 1941-1956. I think it's time to pass that name down to John.
So after being in "Holland" for the past 7 1/2 years, getting to share this experience with John maybe feels a little more like that Italian vacation I was expecting when I got pregnant. I know it's not exactly what I was hoping for, but watching him have so much fun makes up for that.
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| Ready to play |
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| Is this how you catch a ball? |
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| It sure tastes good |
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| John and Mia |
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| playing catch with Mia |
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| John's first hit |
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| Running the bases |
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| Scored his first run |
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| Family picture |
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| Laughing at Mia |
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| With dad after the game |
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| Big Leaguer |
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| I love having these things laying around the house |
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| Proud to be a Cubbie |
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