Last night, we went out to dinner with some of our closest friends to one of our favorite Mexican restaurants. We sat out on the patio so we could enjoy the weather and the atmosphere. The adults sat at one end of the table while the kids sat at the other end. We had great conversation and many, many laughs. John was sitting in his chair next to me, taking in the surroundings and watching all of the people around us. We were finished eating, and the other kids were off getting their faces and arms painted by a lady the restaurant had there. The evening was perfect. It really couldn't get any better, so we thought.
While we were sitting there, a young girl and her mom walked up to John and started talking to him. It was obvious that they knew him, but I did not recognize them. I was sure it must be someone from school that I'm supposed to know, but just couldn't place them. Finally the mom introduced her daughter, Emma, and said that she was in John's second grade class at Shafer. He gets to spend 20 minutes a day in the classroom with other second graders for reading. And word on the street is the kids usually fight over who gets to read to John. According to the mom, Emma says she likes to scoot a little closer to John because he likes to put his hand on her arm and when she's too far away, he has to reach for her. Then the mom told us a story that I will never forget.
At some point during the year, the school had a contest for drawing a picture of the school's mascot, which is a silver knight. I'm not sure what the contest was for. Maybe it was for the cover of the yearbook. Anyway, mom said that Emma came home excited about drawing a picture of a knight. But Emma noticed that all of the other kids were just drawing ordinary knights. Emma thought about it and said that sometimes a knight can be in a wheel chair. So Emma googled a picture of a knight and a picture of a wheel chair and decided that was what she would draw. She had to get help from a friend because she couldn't figure out how to bend the knight's knees and make him fit into the chair. But eventually she figured it out and got her drawing to look the way she wanted. She then titled her picture "John". Emma didn't win the contest and she didn't get her knight on the cover, but she gave something to Tommy and I, and to everyone sitting at our table that none of us will ever forget. She showed compassion for our boy that nobody asked her to show. She touched all of our hearts with that story, and we will never forget the kindness she showed. It was great to meet her and her mom. Mom says that she was so happy to finally meet John because Emma talks about him all of the time.
Not only did this just melt our hearts, but it taught me several things. First of all, I am absolutely sure that John is at the school God wants him to be at. Even with the heartache of having to leave OKE and his teacher, God knew exactly what he was doing, just as he always does. He put our boy in a place where he can be taught, and loved and where he can also touch the hearts of other staff as well as students. Secondly, I learned that those 20 minutes every day that John gets to spend in the regular ed second grade class is very important. No matter how short of a time it seems, it is obviously enough time for John to touch the hearts of his fellow classmates and to build meaningful relationships.
I told Emma and her mom about our Special Buddies program at Shafer and told them that I would love for Emma to be a part of it next year. She is a perfect example of what Special Buddies is all about. Emma said she would love to be in Special Buddies and that she would love to be John's buddy. Hopefully they will end up in the same homeroom next year. I might have to see what I can do about that. Emma's mom took my phone number and she is supposed to text me a picture of the drawing that Emma made. I can't wait to see it!!!
Showing posts with label school. Show all posts
Showing posts with label school. Show all posts
Saturday, June 8, 2013
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.
Tuesday, June 12, 2012
Appeal....denied
Tonight, Tommy and I went before the Katy ISD school board to plead our case as to why we feel John should be allowed to remain a student at Kilpatrick Elementary. This really has been a long process. In case I haven't told you already, let me go back to the beginning.
In mid April, John and I were on our way home from his hippo therapy evaluation when my cell phone rang. I was elated that the evaluation had gone well and that he was going to be able to ride this summer. I was feeling like things were finally falling into place for John and that he was finally getting just what he needs to become the person he is capable of being. I recognized the number on the caller ID as being a Katy ISD number, but I knew it wasn't from his school. The lady on the other end told me her name and that she worked with the Katy ISD special education department. She told me that because of the recent growth in Katy, and because of the 3 new elementary schools being opened, the district had decided to move John along with a small group of other life skills students at Kilpatrick, to the life skills program at Elementary #33, Schafer Elementary. I have known for a while this was a possibility because our neighborhood was being rezoned. But when I got that call, my heart sank. I asked the lady if there was anything I could do to change that decision and she informed me that I could file for an intradistrict transfer from Schafer to Kilpatrick. So that is what I did.
The process of this is to fill out on online application. Once that was submitted, I then had to pay a $35 fee for the application to even be considered. Then I was told I would hear within 10 business days whether my application was accepted or denied. Talking with many people, I discovered that the office that handles these requests automatically denies all requests that are not from a district employee wanting to move a child to a school closer to where they work. So as expected, I received an email denying my request. I immediately requested to appeal the decision, and was given a date to meet with a district committee to explain to them why I think John should be allowed to remain at Kilpatrick.
On May 10, I met with this 4 person committee. I had taken time to write down some talking points so that I could made sure all of my concerns were expressed. I even had a letter signed by John's pediatrician stating that John needed to be in an environment that had a registered nurse on staff to ensure that his medical needs were being met. I wasn't sure at the time, but later I found out that the new school was hiring a Licensed Vocation Nurse for their campus. While, I have nothing against LVN's and there are many out there that are wonderful nurses, I felt that the nurse who is at Kilpatrick is trained in trach care and has years of clinical experience in dealing with kids like John. She had to reinsert his trach tube 3 times this school year after it came dislodged at school. So I knew that he was in more than capable hands with her. I was not and still am not sure what kind of training the nurse at Schafer will have in dealing with kids like John. I felt like the meeting had gone well and was hopeful for a good outcome. A few days later I received an email with the committee's decision. My appeal had been denied. The reason cited was that they felt his needs would be met at Schafer Elementary. To me, that is not a good reason, and considering the fact they have never met my son, how do they really know what his needs are.
I knew that we had one more option, appeal to the the school board. Tommy and I discussed whether this was the course we really wanted to take. After a little time deliberating, we decided that it was worth the effort if it would give us the opportunity to have John remain at Kilpatrick. I submitted the appeal to the Superintendent's office and received an email giving us a date and time to go before the board. Last night, we stayed up until midnight, listing out the things we wanted to say and Tommy typed them up in a dialogue format so that he could read them to the board. And today, at 5:30, we got the opportunity to express these concerns to the board.
We decided to take John with us so the members of the board could see his face, and hopefully it would help them to think of him as a person and not just a number in the system. We also had Caitlin go with us so she could sit with him while we spoke. We were given 10 minutes to make our presentation then the representative from the administration was given 10 minutes to make his presentation. Members of the board then took turns asking questions of both sides to help them make a decision. We were told they would deliberate privately and then they would either vote on their decision during the open session that followed, or during next week's meeting. So Caitlin and I took John home so he could have dinner and Tommy stayed for the open session to see if they had a decision. He finally called me a few minutes after 7 and said that the board voted 5-2 to deny our appeal. So we had support from two of the board members, just not enough to have John remain at Kilpatrick.
I have to be honest, although this decision was not a complete surprise, I was totally devastated by it. I was so in love with John's teacher this year, as well as the nurse at his school, and it completely breaks my heart to know that he will not be able to work with those people again. He learned so many things this year and I have seen a dramatic improvement in his listening skills, his communication skills and even his ability to follow simple commands. On top of that, he is actually learning things like his shapes and colors and even the letters in his name. His teacher found a way to get into his head and to understand him as well as to make him understand her, and I can't believe that he won't have her to learn from any more. Whoever the new teacher may be, no matter how good of a teacher she may be, it will take her some time to figure those things out, and it's not a guarantee that John will even be able to trust her enough to work for her. So instead of building on the things he learned this year and seeing where it can take him, he will be starting all over with a new team of people having to earn his trust. I fear that it will be a lost year and a huge setback for John's overall potential. It is truly shameful to me that the school district would put the business side of the district ahead of meeting student's needs.
On top of that news, I also learned tonight that our nurse is not feeling well and would not be able to come in. The agency was unable to find a replacement for her tonight. So after little sleep last night, a full morning of Vacation Bible School, a dentist appointment this afternoon and then the board meeting, I will be getting little sleep again tonight. Tomorrow morning is another day of VBS and then John has an appointment with his ENT in the afternoon. And did I mention that Tommy is leaving tomorrow morning to go to Canada for the rest of the week? He was supposed to leave on Sunday, but stayed the extra day so he could attend the meeting with me. I will need lots of coffee just to get through the day tomorrow, and my emotional state will be very fragile for the rest of the week. My sweet husband did allow me to go to bed early and sleep for 3 hours or so while he was packing and getting ready for his trip. I will lay down on the couch and try to get a little more sleep tonight.
Now is when I have to rely on God's strength more than ever. I need it every single day, but there are some days when I am reminded just how much I need it. I have been praying all along for his will to be done, so I choose to believe that he has bigger and better things planned for John. I cannot imagine in my wildest dreams that any school could be better than where he has been, but that is what God does. He goes beyond our wildest imaginations and provides us with more than we can dream of. I am so thankful for a God who loves me like that.
Father, please give me strength and courage to face this change. God, you created John and you know his needs even better than I do. Give me peace of mind that you will provide all that John needs and that he will be okay. Use this situation to teach me to rely on you. Thank you for your reminder in Deutoronomy that says you will go before me, not to be afraid. You will never leave me or forsake me. Thank you for friends and family that pray for us every day. And thank you so much for the gift you gave us when you made us John's parents. We are so thankful to have a child that we can worry about and cry for when it seems that life is not fair. Mostly, God, thank you for showing your love for us each and every day. I know that I will be okay with a little time because I know you are still here, carrying me through and providing for me every step of the way.
Tuesday, October 4, 2011
Emotions
Being a mom of a child with special needs is the most rewarding job I've ever done. While it is so tough for me to watch him struggle to do basic things that I take for granted, it is also so exciting and full filling to watch him make progress with those same things. I have never been so excited to get a high five from anyone in my life.
But while it is the most rewarding job I've ever done, it is also by far the hardest thing I've ever done. It is exhausting both mentally and physically. My child cannot walk, so he has to be lifted and carried from place to place. This is taking a huge toll on my body. In the past 6 years, it feels like I have aged twice that amount. But I wouldn't trade having that sweet lovable boy for anything in the world.
This has been an emotional roller coaster for me. While some parents of children with special needs know from day one that their child will never be typical, I did not. I knew he was born early and he was small, but I thought with time he would grow and catch up with other kids his age. And even for probably 2 years after he was born, I still felt that was a possibility. But all of his disabilities began coming one at a time. First it was the feeding, then the trach. Next came his vision impairment and that was followed by his hearing impairment. I finally began to realize that John will never be like other typical kids his age. He is always going to struggle. And with each diagnosis came a new set of tears. I cried when we found out he was going to need a trach. I cried when I found out his vision wasn't normal and I cried when I found out he would need hearing aids. For those of you who have never seen me cry, it isn't pretty. I'm not the type of person who can hide the tears. As soon as I even think about crying, it is visible on my face. So you can imagine what I looked like to all of those doctors who had to give us the news. If they would all just ignore me and leave me alone, the crying would stop sooner, but as soon as someone acknowledges in any way that I am crying, it just makes it worse.
When John was having private physical therapy twice a week, I had a lot of hope that he was going to keep getting stronger and would some day be able to do many of the things I hoped for him to do. When the therapist talked to me and told me that therapy twice a week wasn't producing the results it should and that he should only come once a week, I cried. Right in a waiting room full of people, I cried. It just felt like she no longer had hope for him and that was one thing I couldn't afford to lose. Then his OT told me that she thought he needed a break all together. She had been working for 2 years on the same things and he just wasn't getting it. She didn't think he was at a developmental age where he could understand what to do. Again, it felt like she had lost hope and again I cried. It became a joke that someone isn't an official doctor or caregiver of John until they have seen me cry.
I haven't had one of those emotional days in a while. Things have been good and since John has been in school all day, he has made lots of progress. I even have gotten him back into private OT and PT, which he will start this coming Monday. But today, I had one of those days.
We had his annual ARD scheduled for today. I know a lot of parents that dread these meetings because they can be long and drawn out. For me it has never been something I have dreaded. They have usually been easy and straight forward and I'm always pleased with the reports I get from the teachers and support staff. So I had no reason to think today would be any different. Everything was going along smoothly, just like always, and then the teacher dropped something on me I wasn't expecting. You see, John spends most of his day in the special education classroom. This is where they are most equipped to meet his educational needs and where he does his best learning. But last year and so far this year, he has been going into the regular classroom to be with other kids his age, mainly for the beginning of the day and calendar time. This is a time when they do musical learning and we all know how much John loves music. He also goes with the 1st grade class when they go to Art and Music 2 or 3 times a week. But the teacher recommended that he no longer go to his 1st grade class for the calendar time in the morning. He will continue to go to music and art with them and will also participate in class parties and special events with them. But because he really is unable to participate with the rest of the class, she felt that time would be better spent in the special education classroom working on his goals.
I have done a pretty good job of putting up this facade that I am such a strong person. But when someone sees me cry, it just lets them see that I am not near as strong as I appear to be, and I don't know how to deal with that.
But like I said, I would not trade my son or all of the ups and downs we have had for anything. He shows me that it's okay to struggle, as long as you are persistent and keep trying. And when he wraps his arms around my neck and squeezes tight, it makes me smile, even if there are tears falling.
But while it is the most rewarding job I've ever done, it is also by far the hardest thing I've ever done. It is exhausting both mentally and physically. My child cannot walk, so he has to be lifted and carried from place to place. This is taking a huge toll on my body. In the past 6 years, it feels like I have aged twice that amount. But I wouldn't trade having that sweet lovable boy for anything in the world.
This has been an emotional roller coaster for me. While some parents of children with special needs know from day one that their child will never be typical, I did not. I knew he was born early and he was small, but I thought with time he would grow and catch up with other kids his age. And even for probably 2 years after he was born, I still felt that was a possibility. But all of his disabilities began coming one at a time. First it was the feeding, then the trach. Next came his vision impairment and that was followed by his hearing impairment. I finally began to realize that John will never be like other typical kids his age. He is always going to struggle. And with each diagnosis came a new set of tears. I cried when we found out he was going to need a trach. I cried when I found out his vision wasn't normal and I cried when I found out he would need hearing aids. For those of you who have never seen me cry, it isn't pretty. I'm not the type of person who can hide the tears. As soon as I even think about crying, it is visible on my face. So you can imagine what I looked like to all of those doctors who had to give us the news. If they would all just ignore me and leave me alone, the crying would stop sooner, but as soon as someone acknowledges in any way that I am crying, it just makes it worse.
When John was having private physical therapy twice a week, I had a lot of hope that he was going to keep getting stronger and would some day be able to do many of the things I hoped for him to do. When the therapist talked to me and told me that therapy twice a week wasn't producing the results it should and that he should only come once a week, I cried. Right in a waiting room full of people, I cried. It just felt like she no longer had hope for him and that was one thing I couldn't afford to lose. Then his OT told me that she thought he needed a break all together. She had been working for 2 years on the same things and he just wasn't getting it. She didn't think he was at a developmental age where he could understand what to do. Again, it felt like she had lost hope and again I cried. It became a joke that someone isn't an official doctor or caregiver of John until they have seen me cry.
I haven't had one of those emotional days in a while. Things have been good and since John has been in school all day, he has made lots of progress. I even have gotten him back into private OT and PT, which he will start this coming Monday. But today, I had one of those days.
We had his annual ARD scheduled for today. I know a lot of parents that dread these meetings because they can be long and drawn out. For me it has never been something I have dreaded. They have usually been easy and straight forward and I'm always pleased with the reports I get from the teachers and support staff. So I had no reason to think today would be any different. Everything was going along smoothly, just like always, and then the teacher dropped something on me I wasn't expecting. You see, John spends most of his day in the special education classroom. This is where they are most equipped to meet his educational needs and where he does his best learning. But last year and so far this year, he has been going into the regular classroom to be with other kids his age, mainly for the beginning of the day and calendar time. This is a time when they do musical learning and we all know how much John loves music. He also goes with the 1st grade class when they go to Art and Music 2 or 3 times a week. But the teacher recommended that he no longer go to his 1st grade class for the calendar time in the morning. He will continue to go to music and art with them and will also participate in class parties and special events with them. But because he really is unable to participate with the rest of the class, she felt that time would be better spent in the special education classroom working on his goals.
I have done a pretty good job of putting up this facade that I am such a strong person. But when someone sees me cry, it just lets them see that I am not near as strong as I appear to be, and I don't know how to deal with that.
But like I said, I would not trade my son or all of the ups and downs we have had for anything. He shows me that it's okay to struggle, as long as you are persistent and keep trying. And when he wraps his arms around my neck and squeezes tight, it makes me smile, even if there are tears falling.
Monday, October 3, 2011
Catching Up
I have seriously been lagging behind in the blogging world. I just realized that it has been nearly 2 months since my last post. So I thought, as I sit here waiting on John at therapy, this would be a great time to do a little catching up. But honestly, there hasn't been that much going on.
In August, our summertime nanny, Caitlin, went back to school. We really liked her and John LOVED her. She was exactly what we were looking for and worked perfectly with John. You could see how much she genuinely cared for him and that it wasn't just a job to her. Caitlin was a life saver to me this summer, because I think I might have gone crazy without her. She came to work 5 days a week at 1pm and stayed until we got John in bed. That was perfect because it gave me and John the whole morning to be together. But in the middle of August, it was time for Caitlin to go back to school. We knew we were going to miss her greatly, and we didn't have anyone lined up to take her place. So on her last night with us, we took her out for a nice dinner as a show of our appreciation for helping us this summer. We were very sad to see her go, but hope she'll be able to work for us again during the holidays. Here is a picture she took with John her last night. Can you tell how much he loved her?
Just after Caitlin left, we had an interview with another potential nanny. Her name is Kirstin and she is a student at the University of Houston. We actually had two interviews set up and we weren't going to make a decision until we interviewed them both. But when Kirstin got here and we started talking to her, we quickly changed our minds and decided to hire her on the spot. So she has been working for us for about 1 1/2 months now. She comes every afternoon when John gets out of school and hangs out and takes care of him until bed time. She works an occasional weekend as well. John has gotten very comfortable with her and really enjoys spending time with her. She is a huge help to us also and we are very happy to have found her.
John has continued his Occupational therapy and is really making good progress. The therapist seems to be really impressed with how quickly he is progressing. He goes every Monday morning at 9:00 so he misses the first 2 hours of school. But he is beginning to make better attempts at chewing some of the food she puts in his mouth and he is using his tongue better to move the food to where it needs to go. If he keeps this up, maybe we'll be able to start introducing cheerios to him and continue to progress from there. It will make a huge difference to us if he is finally able to eat solid food without me having to puree it first. Oh I hope that day comes sooner rather than later. He has also been approved to start Physical Therapy again, so I'm waiting to hear back from the coordinator so we can get him on the schedule. She was holding the 10am spot on Mondays for me so he could do both therapies back to back, but I don't know if it's still open. I'm sure hoping it is.
This weekend, 3 of my best girl friends from college came to town. We used to make a point to get together at least once a year, but it had been 5 years since we were all together. So we had a lot of catching up to do. You know you have true friends when you can go that long without seeing each other and then pick up right where you left off. We had so much fun together and laughed so much. A weekend just felt like it wasn't long enough and it was hard to say goodbye to them. But we are already thinking of our next get together and we sure won't let it take 5 years. I have to say a great big thank you to my husband for taking care of John all weekend so that I could have the time with my friends. It was exactly what I needed.
School is going very well for John. I was a little nervous going in because I knew there were all new special education teachers. But everything seems to be working out great. First I found out just before school started that our school got a new nurse this year. She was the nurse at Holland Elementary when John was there for PPCD. She is fantastic and it was so comforting to have a nurse who was familiar with John and who is great at communicating. Then, just a few days before school started, I met at the school with the new nurse, her assistant, both special ed teachers and the two teacher's aides that work with John in order to go over how to take care of his trach. I showed them what the trach looks like and where I kept extra trachs in case his comes out. I showed them how to clean the area and how to suction. The teacher took detailed notes and the nurse wrote on some of the supplies so it would be clear how to use it. This is John's 4th year in school, and they have maybe had to suction him 5 times and have never had the trach come out at school. Well, after 4 years in school, it finally happened. The trach came out while he was standing in his stander. The best part about it is that the teacher noticed it immediately, which shows me she is paying attention, and the nurse came down right away and got a new one in for him with no problems. The nurse called me after the fact to let me know what happened and then after school was out, the teacher called me as well. So already the communication between me and the school is improved 100%. Anytime I have emailed the teacher with a question, she has either returned my email that day or called to talk about it. She is very involved and very invested in her students' education and that makes me feel 100% comfortable with John being there. Tomorrow is John's ARD (or IEP meeting for those in Louisiana). This is when we go over his current goals and either decide to keep them the same or change them to better meet his needs. His Special Ed Teacher will be there along with his 1st grade teacher, his PT and OT, his speech therapist, his Auditory Instructor, and the diagnostician and a principal. Because his teacher hasn't know him but for a couple of months, she asked me to come up this afternoon when school is out to meet with her before the ARD tomorrow. She just wants to make sure we are on the same page. I have to say that I feel very blessed to be in a school district who goes above and beyond to take care of our children and to make sure they are reaching their full potential. I can't wait to see what the future holds for John through his time at school.
This coming weekend, John and I are going to Kinder. My mom is going to Indiana to celebrate her brother's birthday, and my brother Jimmie and his family are coming to Kinder for Jimmie's 20th high school reunion. So I'm going to help my dad keep the kids while Jimmie and Chrystal attend the reunion festivities. I can't wait to see them and spend time with the kids. It should be a fun weekend.
I think that about catches you all up on what's been going on over the last two months. I started writing this while waiting on John at therapy, but concluded after I got home. I will try and do a better job of updating the blog from now on.
In August, our summertime nanny, Caitlin, went back to school. We really liked her and John LOVED her. She was exactly what we were looking for and worked perfectly with John. You could see how much she genuinely cared for him and that it wasn't just a job to her. Caitlin was a life saver to me this summer, because I think I might have gone crazy without her. She came to work 5 days a week at 1pm and stayed until we got John in bed. That was perfect because it gave me and John the whole morning to be together. But in the middle of August, it was time for Caitlin to go back to school. We knew we were going to miss her greatly, and we didn't have anyone lined up to take her place. So on her last night with us, we took her out for a nice dinner as a show of our appreciation for helping us this summer. We were very sad to see her go, but hope she'll be able to work for us again during the holidays. Here is a picture she took with John her last night. Can you tell how much he loved her?
Just after Caitlin left, we had an interview with another potential nanny. Her name is Kirstin and she is a student at the University of Houston. We actually had two interviews set up and we weren't going to make a decision until we interviewed them both. But when Kirstin got here and we started talking to her, we quickly changed our minds and decided to hire her on the spot. So she has been working for us for about 1 1/2 months now. She comes every afternoon when John gets out of school and hangs out and takes care of him until bed time. She works an occasional weekend as well. John has gotten very comfortable with her and really enjoys spending time with her. She is a huge help to us also and we are very happy to have found her.
John has continued his Occupational therapy and is really making good progress. The therapist seems to be really impressed with how quickly he is progressing. He goes every Monday morning at 9:00 so he misses the first 2 hours of school. But he is beginning to make better attempts at chewing some of the food she puts in his mouth and he is using his tongue better to move the food to where it needs to go. If he keeps this up, maybe we'll be able to start introducing cheerios to him and continue to progress from there. It will make a huge difference to us if he is finally able to eat solid food without me having to puree it first. Oh I hope that day comes sooner rather than later. He has also been approved to start Physical Therapy again, so I'm waiting to hear back from the coordinator so we can get him on the schedule. She was holding the 10am spot on Mondays for me so he could do both therapies back to back, but I don't know if it's still open. I'm sure hoping it is.
This weekend, 3 of my best girl friends from college came to town. We used to make a point to get together at least once a year, but it had been 5 years since we were all together. So we had a lot of catching up to do. You know you have true friends when you can go that long without seeing each other and then pick up right where you left off. We had so much fun together and laughed so much. A weekend just felt like it wasn't long enough and it was hard to say goodbye to them. But we are already thinking of our next get together and we sure won't let it take 5 years. I have to say a great big thank you to my husband for taking care of John all weekend so that I could have the time with my friends. It was exactly what I needed.
School is going very well for John. I was a little nervous going in because I knew there were all new special education teachers. But everything seems to be working out great. First I found out just before school started that our school got a new nurse this year. She was the nurse at Holland Elementary when John was there for PPCD. She is fantastic and it was so comforting to have a nurse who was familiar with John and who is great at communicating. Then, just a few days before school started, I met at the school with the new nurse, her assistant, both special ed teachers and the two teacher's aides that work with John in order to go over how to take care of his trach. I showed them what the trach looks like and where I kept extra trachs in case his comes out. I showed them how to clean the area and how to suction. The teacher took detailed notes and the nurse wrote on some of the supplies so it would be clear how to use it. This is John's 4th year in school, and they have maybe had to suction him 5 times and have never had the trach come out at school. Well, after 4 years in school, it finally happened. The trach came out while he was standing in his stander. The best part about it is that the teacher noticed it immediately, which shows me she is paying attention, and the nurse came down right away and got a new one in for him with no problems. The nurse called me after the fact to let me know what happened and then after school was out, the teacher called me as well. So already the communication between me and the school is improved 100%. Anytime I have emailed the teacher with a question, she has either returned my email that day or called to talk about it. She is very involved and very invested in her students' education and that makes me feel 100% comfortable with John being there. Tomorrow is John's ARD (or IEP meeting for those in Louisiana). This is when we go over his current goals and either decide to keep them the same or change them to better meet his needs. His Special Ed Teacher will be there along with his 1st grade teacher, his PT and OT, his speech therapist, his Auditory Instructor, and the diagnostician and a principal. Because his teacher hasn't know him but for a couple of months, she asked me to come up this afternoon when school is out to meet with her before the ARD tomorrow. She just wants to make sure we are on the same page. I have to say that I feel very blessed to be in a school district who goes above and beyond to take care of our children and to make sure they are reaching their full potential. I can't wait to see what the future holds for John through his time at school.
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| Waking up the first day of 1st grade. |
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| Ready for school! |
I think that about catches you all up on what's been going on over the last two months. I started writing this while waiting on John at therapy, but concluded after I got home. I will try and do a better job of updating the blog from now on.
Wednesday, May 25, 2011
6 Years Old!!!
Where have these past 6 years gone? It seems like my baby boy was born just yesterday, but instead, he turned 6 years old yesterday. I can't believe how fast the years have gone by. He went from being a tiny, scrawny little thing, to a very tall and adorable 6 year old. And he is the light of my life.
He has a very distinct personality. He loves to crawl around the house and get into trouble. He loves his music too. He seems to have a pretty good rhythm too as he bounces along to the beat. He loves to swing and rock in the chair. He has the funniest facial expressions, which in turn prompts me to make ridiculous faces back at him. He loves to cuddle and give hugs and kisses, and my favorite time of every day is when he curls up next to me in the recliner and falls asleep. Yes, he's a lot of work to take care of, but he's worth every minute of it. Even the sleepless nights are worth it. We are so blessed to have this little boy in our lives. He teaches us something new every day.
Yesterday, was also his Kindergarten Graduation day. Not only can I not believe that he's six, but I can't believe he has completed his first full year of school already. He made so much progress this year. It was fun to see the little program that the teachers and kids put on yesterday. And when all of the kids were singing the song they had practices, he watched them all closely and took in every second of it. He's made some sweet friends and has captured the hearts of his teachers, just like he has captured our hearts.
This weekend, we are having his birthday party with a few close friends to celebrate his 6 years. It should be a lot of fun. It's always a fun day for us. And it's nice to have the family gather together to celebrate.
So let me just say, Happy Birthday Sweet Boy!!! Mommy and Daddy are so proud of how far you have come and we look forward to the years ahead just to see what God has in store for you.
Here are a few pictures from his last 6 years.
He has a very distinct personality. He loves to crawl around the house and get into trouble. He loves his music too. He seems to have a pretty good rhythm too as he bounces along to the beat. He loves to swing and rock in the chair. He has the funniest facial expressions, which in turn prompts me to make ridiculous faces back at him. He loves to cuddle and give hugs and kisses, and my favorite time of every day is when he curls up next to me in the recliner and falls asleep. Yes, he's a lot of work to take care of, but he's worth every minute of it. Even the sleepless nights are worth it. We are so blessed to have this little boy in our lives. He teaches us something new every day.
Yesterday, was also his Kindergarten Graduation day. Not only can I not believe that he's six, but I can't believe he has completed his first full year of school already. He made so much progress this year. It was fun to see the little program that the teachers and kids put on yesterday. And when all of the kids were singing the song they had practices, he watched them all closely and took in every second of it. He's made some sweet friends and has captured the hearts of his teachers, just like he has captured our hearts.
This weekend, we are having his birthday party with a few close friends to celebrate his 6 years. It should be a lot of fun. It's always a fun day for us. And it's nice to have the family gather together to celebrate.
So let me just say, Happy Birthday Sweet Boy!!! Mommy and Daddy are so proud of how far you have come and we look forward to the years ahead just to see what God has in store for you.
Here are a few pictures from his last 6 years.
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| This picture show how tiny he was. |
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| Peaceful. |
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| First Birthday! |
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| Chip off the old block! |
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| 2nd Birthday |
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| He loved this jumparoo. |
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| 3rd Birthday! |
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| Graduating from ECI |
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| 4th Birthday |
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| One of my favorite smiles |
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| First Day of Kindergarten |
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| 6 years old! |
Saturday, April 9, 2011
Proud Momma, Part II
Yesterday, I met at John's school for his annual ARD (Admission, Review and Dismissal) committee meeting. This meeting is required anytime a student is admitted or dismissed from a special education program, and also when it's time to review the IEP (Individual Education Plan) and make appropriate changes as the progress of the student dictates. I told you in a previous post that John started this school year with about 5 goals, all of which came with him from PPCD. Through the course of this year and being in school all day, John has managed to master every one of his goals. This is outstanding progress for him. So, yesterday I met with his teacher, the school diagnostician as well as the different school therapists that provide him services, such as physical, occupational, speech and audiological therapies.
I knew that he was in need of updated goals, but I had no idea just how updated those goals would be. As I was reading the goals that the speech therapist had written, I was shocked to see the things she expects him to be able to do. A couple of the things she listed as goals were to be able to identify objects related to his environment (i.e. backpack, bus, table) and also to be able to identify characters in a story by pointing to their picture in the book. I read this and thought, "yeah right." But according to the speech therapist and his teacher, he's already doing some of these things. According to them, when shown two different pictures of objects that he is familiar with, he is able to grab the picture with the object that they ask him to identify. They say that they do this several times and mix the pictures up and he still grabs the appropriate picture. I had no idea that he is able to do anything like this, since this is not something we work on at home.
Another thing that I found out was that John does not meet the criteria to attend ESY (Extended School Year). That is just a fancy way of saying summer school. The general criteria to attend is that the child has to show a regression in what he learned after the Christmas break. According to his teacher, John did show a slight regression, but was able to quickly catch back up. This is the first year that my child is too smart for summer school. :) The only bad thing about that is now I have to figure out what to do with him all summer so that we don't kill each other. But his teacher and speech therapist are going to put together some activities for me to work with him on at home, particularly over the summer. So hopefully he won't fall behind too much when he starts 1st grade in a few months. I am about to have a 1st grader. That just doesn't seem possible.
Also added to his schedule for next year, he is going to attend all specials with his class. This year he is only going with them to music. Next year he'll be able to do music, art AND PE. He will be evaluated for adapted PE and hopefully that will be another place he can work on his walking. He will be integrated into the 1st grade classroom approximately 2.5 hours a week. I know John will enjoy being able to spend time with other kids his age.
On a separate note, I received a letter from his Kindergarten teacher on Wednesday, letting me know that next week, John will be their class's star of the week. So the project for that person is to make a poster that tells his classmates his likes and dislikes and things that make him who he is. Well naturally being the uncreative person that I am, I panicked at the thought of having to create a poster. I wanted it to be nice, but that is just not my area of expertise. So after hyperventilating and scouring my brain for ideas, I finally made my way over to Michael's for the few supplies I would need for this project. I am happy to report that I was able to start and finish the poster all in one day. Now I can enjoy the rest of the weekend without that hanging over my head. It is due on Monday. Here is the finished project. What do you think?
I knew that he was in need of updated goals, but I had no idea just how updated those goals would be. As I was reading the goals that the speech therapist had written, I was shocked to see the things she expects him to be able to do. A couple of the things she listed as goals were to be able to identify objects related to his environment (i.e. backpack, bus, table) and also to be able to identify characters in a story by pointing to their picture in the book. I read this and thought, "yeah right." But according to the speech therapist and his teacher, he's already doing some of these things. According to them, when shown two different pictures of objects that he is familiar with, he is able to grab the picture with the object that they ask him to identify. They say that they do this several times and mix the pictures up and he still grabs the appropriate picture. I had no idea that he is able to do anything like this, since this is not something we work on at home.
Another thing that I found out was that John does not meet the criteria to attend ESY (Extended School Year). That is just a fancy way of saying summer school. The general criteria to attend is that the child has to show a regression in what he learned after the Christmas break. According to his teacher, John did show a slight regression, but was able to quickly catch back up. This is the first year that my child is too smart for summer school. :) The only bad thing about that is now I have to figure out what to do with him all summer so that we don't kill each other. But his teacher and speech therapist are going to put together some activities for me to work with him on at home, particularly over the summer. So hopefully he won't fall behind too much when he starts 1st grade in a few months. I am about to have a 1st grader. That just doesn't seem possible.
Also added to his schedule for next year, he is going to attend all specials with his class. This year he is only going with them to music. Next year he'll be able to do music, art AND PE. He will be evaluated for adapted PE and hopefully that will be another place he can work on his walking. He will be integrated into the 1st grade classroom approximately 2.5 hours a week. I know John will enjoy being able to spend time with other kids his age.
On a separate note, I received a letter from his Kindergarten teacher on Wednesday, letting me know that next week, John will be their class's star of the week. So the project for that person is to make a poster that tells his classmates his likes and dislikes and things that make him who he is. Well naturally being the uncreative person that I am, I panicked at the thought of having to create a poster. I wanted it to be nice, but that is just not my area of expertise. So after hyperventilating and scouring my brain for ideas, I finally made my way over to Michael's for the few supplies I would need for this project. I am happy to report that I was able to start and finish the poster all in one day. Now I can enjoy the rest of the weekend without that hanging over my head. It is due on Monday. Here is the finished project. What do you think?
Well that is all this Proud Momma has to report for now. Keep praying for us that we maintain the strength and energy that we need to take care of our boy, and also for him as he continues to make progress with communication and reaching his full potential. Thanks to everyone for all of your love and support. We couldn't make it through this journey without you all.
Sunday, January 16, 2011
Proud Momma!
Last Friday, John came home from school with his 3rd report card for the year. His report cards are quite different than the ones other kids get. While most report cards come home with the subject and the letter grade beside it, his are print outs on several sheets. He doesn't get graded on subjects, but how well he has progressed toward each of his goals. Since he started PPCD 2 years ago, I have seen quite a few of these, but they are still difficult for me to read and understand. They have lots of numbers and symbols and I have to check the legend on the sheet to know what some of the symbols mean.
John has 5 goals on his IEP (Individual Education Plan). Some of these goals have a part A and a part B so I consider it 8 goals. Each goal has either an amount of time attached such as 8 seconds or 20 minutes, or it has a number such as 3 out of 5 trials. Over the past 2.5 years, I've read his report card and mostly have seen that while he's making slow progress, he's not quite getting a full grasp on his goals.
This report card was different. On 4 of his 8 goals, I saw the Symbol M next to it. I did not need to look at the legend to know what this symbol means. M = Mastered. That's right, my boy has mastered 4 out of his 8 goals. I was so surprised to see this. When I met with his teacher a couple of months ago, she told me that he was doing well and that we may need to adjust his goals or even add some new ones. But I never expected that he would do this well with them this early in the year.
These are the goals that John has mastered:
These are the goals he is still working on:
Words cannot express how proud I am of him for working so hard every single day to reach these accomplishments. Every little thing he sets out to do is so hard for him. I watch him everyday trying to do things like climb up on something, or pull up to stand and I think of how easy it is for me to do and how much he struggles to do those things. But one thing I have also noticed is how persistent he is. He doesn't give up. If he doesn't do something the first try, he gets back up and tries again. Sometimes all he needs is a little support or something to hold onto and then he's got it. It brings him such joy when he finally gets something he's been working toward for so long and it makes me so proud.
And of course, no matter what goals he achieves, you can't take away that sweet smile. No matter his circumstance or how hard he is working toward something, he always has a smile on his face. There is nothing in the world I'd rather look at. We all could learn something from him. No matter how hard life gets or how tough our circumstance, there is always a reason to smile!
John has 5 goals on his IEP (Individual Education Plan). Some of these goals have a part A and a part B so I consider it 8 goals. Each goal has either an amount of time attached such as 8 seconds or 20 minutes, or it has a number such as 3 out of 5 trials. Over the past 2.5 years, I've read his report card and mostly have seen that while he's making slow progress, he's not quite getting a full grasp on his goals.
This report card was different. On 4 of his 8 goals, I saw the Symbol M next to it. I did not need to look at the legend to know what this symbol means. M = Mastered. That's right, my boy has mastered 4 out of his 8 goals. I was so surprised to see this. When I met with his teacher a couple of months ago, she told me that he was doing well and that we may need to adjust his goals or even add some new ones. But I never expected that he would do this well with them this early in the year.
These are the goals that John has mastered:
John will demonstrate sustained attention with toys, books, or activities for a minimum of 8 seconds.
John will localize environmental/classroom sounds varying by loudness level (ie, drum, triangle, cymbals, different speakers, loud/soft voice) by turning head towards sound source in a variety of positions in 3/5 trials. a. five feet b. ten feet (he has mastered this from five feet and is at 2/5 trials from ten feet)
John will participate in a variety of classroom activities in varying positions by hitting a switch or simple voice output device with: a. Hand under hand assistance 5/5 trials b. Guided elbow 2/5 trials. (he has mastered both of these)
These are the goals he is still working on:
Once positioned correctly in his walker, John will walk for: a. 30 feet in 20 minutes by January 2011 b. 50 feet in 20 minutes by June 2011, in 3/5 trials for 5 consecutive weeks. (On Part A he has achieved 2/5 trials and Part B has not yet been introduced.)
During meal times, John will assist with feeding by holding a utensil and bringing it to his mouth with decreasing prompts which fade from full physical to partial physical in 3/5 trials for 5 consecutive weeks by June 2011. (he has achieved 2/5 trials)I must say something about each of the two goals above. The goal towards walking he actually can do. He does it at home with ease. But when he's at school and trying to walk in the hallways with people walking by and so much to look at, he gets distracted and I'm sure doesn't do as well. But when I take him outside here, he walks down the block and back. The goal towards feeding himself is a biggie for him. I have to confess that this is not something we work on at home. I need to start working towards it more at meal times. I'm just usually in a hurry to get him fed and I don't even think about it. But that would be a huge accomplishment for him if he can learn to do this.
Words cannot express how proud I am of him for working so hard every single day to reach these accomplishments. Every little thing he sets out to do is so hard for him. I watch him everyday trying to do things like climb up on something, or pull up to stand and I think of how easy it is for me to do and how much he struggles to do those things. But one thing I have also noticed is how persistent he is. He doesn't give up. If he doesn't do something the first try, he gets back up and tries again. Sometimes all he needs is a little support or something to hold onto and then he's got it. It brings him such joy when he finally gets something he's been working toward for so long and it makes me so proud.
And of course, no matter what goals he achieves, you can't take away that sweet smile. No matter his circumstance or how hard he is working toward something, he always has a smile on his face. There is nothing in the world I'd rather look at. We all could learn something from him. No matter how hard life gets or how tough our circumstance, there is always a reason to smile!
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